ERICA'S JOURNEY

A Final Note

2010-12-12T16:38:00.000-08:00

Four years ago, today, Erica was diagnosed with Infant ALL Leukemia. Four years ago, today, our lives changed without warning. A few days later I started to blog about Erica’s journey and tonight, I will write the final entry.

Erica is doing beautifully, her last blood tests were taken just last week and the results were perfect. All of the scans and tests continue to show thriving organs and continued growth. The GVHD (graft versus host disease) stays at bay through daily medication and monitoring. She takes about seven medications and a nightly injection of growth hormone and sees her doctors every couple of months. That is status quo and it has been this way for over a year now.

I have reported on so many exciting events and milestones along the way; her birthdays and recitals, our family trips and the birth of her sister, Paige . . . Erica has had a great couple of years. My hope is that we get to continue this journey with great test results and exciting events. It is my prayer that this truly is my last blog entry.

Erica’s follow up care will continue but it was recently decided that her care would be transferred to UCSF. Her particular case, paired with the transplant and GVHD requires a pediatric BMT specialist and without Dr. Taylor, we need to go to UCSF. So, we will take her a few times per year for her follow up and, oh darn, we’ll spend a couple of days in San Francisco!

Erica will grow to learn about and manage her health; it will be a different reality for her than for other girls. As she matures and eventually lives on her own, her lifestyle, eating habits, exposure to sun, and activities will all be impacted by this journey. My prayer is that we teach her the sensibility to treasure her body and to never, never take her health for granted.

Sometimes I wonder if Erica is different because of this experience. If not for this particular journey, would she be as she is today? All I can say is that Erica is extremely happy, very compassionate, acutely aware of all that is going on around her and she seems wise beyond her years. Don’t get me wrong, she is very much a four year old, with temper tantrums and time-outs but all these other things exist too. For her 4th Birthday wish, she told us that she wished “that all the other kids with cancer would get better”. Those were HER words, unprompted. Not your typical 4 year old birthday wish. My prayer is that Erica use her special gifts in this world that so desperately needs wise, compassionate people.

As I considered writing this final blog I imagined writing a sort of reflection on this whole experience but now I feel that it has all been said, in real time. One statement that I wrote, early on, and has rung true over and over again is: “This has been the most painful experience of our life. It is also the most blessed. It is a life altering, priority aligning, uncontrollable journey.” I guess that says it all, sans reflection.

This blog has been a special place for me. It has served as a journal, it has served as a letter to Erica, and it has served as a road map though infant leukemia. I still come back to these entries and cry from time to time. The intention was to have a diary of this journey for Erica. I wanted it to contain the medical detail and the emotional truth. I wanted to keep record of the support and love that was poured out to us and I wanted Erica to know what she was able to do and accomplish in spite of it all. I think my intentions were fulfilled. In the meantime, I have been told that this story, for some, has also played a role in inspiring faith and rekindling hope. It is in my heart that this blog conclude, not that the journey is over but because the purpose has been served.

I am so appreciative to all those that have come to this blog; thank you for sharing your kind words of encouragement and prayer. In our darkest moments, your words gave us comfort and peace.

Erica, you are my sunshine. I am honored to be your mom. We are blessed, everyday, to see your smile, to have you with us . . . Thank you dear God.

Bob, my love, you made this journey work; there are not enough words to express my gratitude.

Merry Christmas!

In Memory of Sammie, Lilly, Stephan, Trevor, Ericka, Nikki and so many other children that earned their Angel Wings far too soon.

Dr. Taylor

2010-08-24T13:32:00.000-07:00

If someone were to have asked me what I would want in my child's oncologist, back when Erica was born, I probably would have given them a strange look, "oncologist"?, why would my child need an oncologist? Then, I would have given it some thought and then responded with something about bedside manner and medical expertise. How would I have known the phenomenal spectrum of skill required to be my child's oncologist?

~~~~~~~~

Dr. Taylor notified us, at our last appointment, that the UC System has decided to cut the Pediatric Stem Cell and Bone Marrow Transplant Program at UCDMC. He explained the situation with a great deal of composure but this was Dr. Taylor's program and I am certain this did not go down without a fight . . . but nevertheless, it was his program and I can only imagine the disappointment.

So Dr. Taylor will take some time to conduct research and then, eventually move to his next endeavor. Erica will continue to see a doctor for post-transplant care at UCD Children's Hospital, but it will not be Dr. Taylor . . .the one with whom this journey has taken place.

It got me thinking about the qualities that this man possess, about how our experience would have been different if it were to have been a different doctor, about how special and unique the whole doctor-family relationship is in these cases.

I remember when we met Dr. Taylor, only two days after Erica's diagnosis. The first doc was on-call the night she was diagnosed and ultimately, I think he was good for breaking the news but it was also nice to be gently placed in the hands of Dr. Taylor. When we met him, he was very casual and familiar, he looked at bit like a surfer and had a friendly smile; he spoke about the test results and gave a short road map of additional testing that would take place within the next 24 hours; he didn't go beyond that. He also had a reason to think that the diagnosis could be something different, less serious, and although that was not the case, I remember feeling my first twinge of hope.

Dr. Taylor never made us feel like he had something more pressing or important to do, he never made us feel like our questions or observations were silly or stupid, he never made us feel like there was no room for hope. Those are important qualities; qualities I may not have thought of had I not gone through this experience . . . and there are others . . .

Dr. Taylor was always accessible; I can't think of a time that we paged him and did not get a prompt call back. No matter what time of the day he would say, "Top of the morning to you!" That says a bit about his attitude; it was always "top of the morning", there was always a day ahead. Some people along the way commented on his optimism as though it were too much, not realistic enough but we found it to be refreshing and, at times, it was all that we had to hold on to. When he needed to, Dr. Taylor gave us news in pure fact, no fluff. When he called us at 7:30AM on October 4th, 2007, he was very serious, he said that if we were not sitting down, we should. He then reported that the last spinal tap contained leukemia cells. After some silence, he spelled it out, "Erica's leukemia has relapsed". He allowed us some more time of silence and then proceed to explain the next couple of steps, very clear about the fact that she would need to go to transplant. And then said that we would talk again later. My point is that Dr. Taylor's range was always impressive to me and we used him as a barometer for how concerned we should be at any given point in time.

Dr. Taylor definitely allowed us to feel some sense of control with Erica's care; he'd ask us, in many instances, "what would you like to do?" as it related to pain management or timing of spinal taps and sedation options. We even participated in the initial decision to hold off on the bone marrow transplant in June of 2007. Our thoughts and opinions were always well respected by both Dr. Taylor and our nurse coordinator, Kay. Dr. Taylor and Kay truly made this journey manageable. Never once did we feel that Erica would be better cared for anywhere else.

Only now could I answer the question about what I would look for in my child's oncologist; for that I am both saddened by the fact that it was a reality but also privileged to have been shepherded by this man who, not only had all of the medical skill but also became a friend and who always remained one of Erica's biggest fans.

There is so much that could be said but I will leave it at that. It is an absolute loss to let this program go. It was God's perfect timing . . . Erica was able to be treated at UCD Children's Hospital, close to home and family; she was lucky enough to have Dr. Taylor and Kay as her primary team and she received a successful bone marrow transplant.

Dr. Taylor,

We will never be able to put into words our gratitude and respect for you. Erica will always know how instrumental you and Kay were to her survival at such a young age. Our hope now is that we will be able to send you Graduation and Wedding announcements . . . that Erica's life will be free from cancer.

Thank you, from deep down, in places that we never knew existed.

From all of our family and friends, thank you.

~Megan

Big Sister

2010-08-08T21:57:00.000-07:00

Erica became a big sister on July 12, 2010! Our family welcomed with joy Paige Elizabeth Livesey, 7 pounds 10 ounces at 1:15PM. Erica was thrilled that Paige had finally heard our plea, "come out Paige, come out now" Erica would say to my tummy every morning; "when is my baby sister going to be here?" she would ask. After my due date passed us by, I really began to wonder if this baby would ever make her appearance!

Having Paige here . . . I wonder how life was without her, she's just part of this little family now and we love and kiss on her every day! Erica is so good with her, very gentle and caring. She tells me when Paige "needs her mommy" or "wants to eat". She's a natural!

Erica had her second scan last week and the early results show that the nodule on her lungs is gone. She will, however, stay on the medication and have the scan done again in two months to be absolutely positive. We will go see Dr. Taylor tomorrow for a check up, blood draw and to address to concerns we have about Erica's skin. But, all in all, a routine day.

Miss Erica turned 4 on August 3rd. We celebrated in 4 year old style fit with friends, face painting and a bounce house. I sat back in awe . . . my baby is 4.

It's been too long

2010-06-21T09:39:00.000-07:00

I have had a lot of phone calls from friends who have checked the blog and said, "things must be ok, there hasn't been a post since April". Well, it's been too long and yes, while things are good, there has been quite a bit of activity.

Just a quick report from the LLS Man & Woman of the Year Event, it was a huge success, raising over $200, 000 for LLS. We were honored to be a part of the campaign and met some wonderful people along the way. Many thanks to Sarah Mullins and LLS for having Erica as the Girl of the Year!

Last month Erica went in for a couple of different scans to look at her lungs. There was a consistent cough that had us concerned because there were no other viral symptoms. This can be indicative of several different lung conditions that can all arise after transplant/treatment. The scans did reveal a "spot" on Erica's lung (right side) that appeared to be new (not yet calcified) and therefore slightly concerning. The agreed upon treatment was to treat with medication and see if it goes away. We will scan again in two months and then determine if a biopsy is necessary. There is a good chance that, with medication, this spot will go away. The scans are hard because they involve more anesthesia, IVs, low blood sugar concerns and surgery center time but that's what we need to do.

We are not highly concerned. The cough has subsided quite a bit and therefore, we can only imagine that this "spot" has gone away. I am optimistic that we will have good news to report next month and that this will just be a blip on the screen.

Erica is getting very excited about the pending arrival of her new baby sister. I have been telling her, for months, that her sister will come in the summer and well, today is the first day of summer. As of today I am about 37 weeks and I am ready! It's the "get this baby out of me" stage; feeling huge, totally uncoordinated, tired and well, a little cranky.

We continue to pray for only the best of health for our new little girl and for continued health and healing for Erica. Erica continues to be on 8 medications and her growth hormone shot daily. We would love to see the medications drop off!

My maternity leave began this past week and so I am hopeful that I will be able to keep up with some posts while I am out. We will have updates on the new baby and Erica's next scans . . . amongst other activities as well.

LLS Campaign Letter

2010-04-20T14:21:00.000-07:00

Just wanted to share the letter that I wrote to the participating Man & Woman of the Year Candidates~

Dear Candidates,

First, we want to extend our appreciation for the fact that you have decided to run for Man, Woman & Teen of the Year; we know that, in making this decision, you are sacrificing a great deal of time, energy and resources. There may have been a combination of motivating factors that moved you to run in this campaign, I just hope that one of them is the contribution you can make to Blood Cancer Research and the Hope that one day there will be a Cure.

I am sure that there will be times when this campaign gets tiring or when things do not turn out exactly as you had planned; in those times, just remember that there are people, in that moment, who were just diagnosed with a blood cancer . . . allow this thought to inspire you, to move you in the direction you intended, to overcome whatever obstacle may be in your way.

Our daughter, Erica, was born on August 3, 2006 and only four months later we were asked, by the UC Davis Pediatric ICU Attending Physician to walk with him to an office down a long hallway at 3 AM. In a caring yet certain manner, he proceeded to tell us that Erica had Leukemia. Before Erica arrived, we heard many times the old adage, “having a baby changes everything” and in our case, nothing could have been further from the truth. When we heard those words from the physician on December 12, 2006, life as we knew it was over . . . and the steps to keep our daughter alive were set into motion.

Erica was a warrior throughout her treatment, her spirit rarely faltered and he smile rarely waned. We were in continuous awe of her endurance; the continuous infusions, the recurring infections, the side-effects of the drugs, the procedures and pokes, the sleepless nights and rounds of radiation, through it all we were humbled in her presence. There were times, I will be honest, when hope was hard to find and the mid-night of doubt fell upon our shoulders but then, there would be small “win”, a little piece of good news, and then slowly we would see again, the light at the end of the tunnel. This is the roller coaster of cancer treatment, it is a series of ups and downs, twists and turns, it is unknown and, at times, beautifully surprising.

Today, Erica is a thriving, beautiful, three and a half year old. Today she is the recipient of an unrelated bone marrow donor transplant. Today she is a preschooler, a dancer, a runner, an artist, a singer and a swimmer. Today she is alive and getting stronger everyday.

Everyday we are mindful of her journey, that it will be another seven years before she will be considered “cancer-free”. Everyday we are reminded that there are children who did not have the same outcome from their blood cancer. And everyday we feel blessed.

Thank you, again, for your commitment to the Leukemia & Lymphoma Society and for the impact that will surely be made by your efforts. Have fun and enjoy, we look forward to seeing you at the finale.

In great appreciation,
Megan

The Livesey Family

LLS Girl of the Year

2010-04-20T14:15:00.001-07:00

Erica Faith has been nominated as the Leukemia & Lymphoma Society's Girl of the Year for 2010. This is excited because it allows us to further our commitment to this great organization while also allowing Erica's story to serve as inspiration and motivation for the men, women and teens are that are participating in this campaign.

Please see the details of the campaign at http://www.mwoy.org/sac/

Over the next couple of months, we will be participating in several events that the candidates will be holding to help raise money for LLS. I have posted the information about the Grand Finale for those of you who want to participate in the Big Event and have some fun . . . it is a formal even with great food, wine and silent auction, guest speakers and music.

June 12th at the Sacramento Sheraton, see link on Grand Finale posting.

Thanks and love!

LLS Man & Woman of the Yera -Grand Finale Information

2010-04-20T14:15:00.000-07:00

Grand Finale Information

Happy Meals

2010-03-19T20:09:00.000-07:00

It has only taken this long to report on the outcome of Erica's procedure because it took some time to believe that it was true . . . that, in fact, she could be eating without gagging. It's been more than two weeks and it IS true . . . it is fun to eat again (for all of us).

I never realized the extent to which her constant gagging and choking had been impacting us; I didn't realize that I had been eating my meals and at the same time holding me breath, waiting for her to make that face that would signal that the food was "stuck". Bob and I would literally take turns running to get the paper towels so that she could spit her food out.

Now, all is calm at meal time and Erica is trying more foods and enjoying her new eating experiences. I can't describe the weight that has been lifted.

It's funny to say all of this, like it was such a big deal after everything we've been through . . . but that's the way life goes, it's all relative isn't it?

Erica is getting more and more excited about being a big sister. She is asking more often about when "she" will be here and she wonders if she will be 3 or 4 when the baby comes. So cute! I am now 6 months pregnant and feeling it! I am very tired most of the time, mainly do to the road travel that my job requires but with Bob's help, my mom's help, the babysitter's help . . . wow, I have a lot of help. Thank God!!

We are blessed everyday that Erica continues to demonstrate her warrior spirit; she is so strong and energetic. Even still, we are fortunate to be able to qualify for a program that will allow us to bank and store the new baby's cord blood. We will determine, early on, if the baby is a match. I will just write what Kay (our nurse) said, "Let's hope we get a match with a fat, juicy cord that we never need to use". Amen.

Speaking of donor blood, we are sad to say that we have not heard from the donor. We reached out a couple of months ago with our contact information and though there has been some confusion with regard to the communication with the donor's facility, we have yet to get any response. We are still hopeful that this is just a "paperwork issue" and that he will one day reach out.

Happy Spring!

Megan

Seeing Pink

2010-02-28T10:56:00.000-08:00

It's going to be another girl for the Livesey family . . . for Bob's parents, this makes five grand-daughters!! We are thrilled (as we would be, regardless) but it is so fun to know and to begin imagining life with two girls. Erica is very excited and has already offered to share her room with the baby.

Baby is due July 15th and, in the meantime, we will be busily preparing . . . getting down the baby swing and infant carrier that we used only 3 and a half years ago.

Prayers for a healthy baby and a successful procedure for Erica tomorrow.

It's the Little Things

2010-02-23T19:16:00.001-08:00

Erica's two year panel of tests call came back looking very pretty. I could certainly go into details but I think that the end result says it all; organs look good, blood completely matches the donor and the gvhd is under control.

The one thing that continues to be a struggle is Erica's swallowing; she gags and chokes 2 or 3 times, at every meal. What started as a nerve wracking chain of events is now common place; we just allow her the calmness to gag up the food and then spit out whatever she can. And then we all go back to our meals. It is now just a drill but one that we wish would end. She has been to the docs and she has undergone swallow evaluations by speech and occupational therapists. We have played with several theories but in the end, nothing has worked. So, this coming Monday, she will go under anesthesia yet again and they will perform an esophogoscopy procedure. During this procedure they will be able to view her upper airway and digestive tract. Our hope is that there will be some indication of what is causing this eating disruption. It's one of those catch 22's, we hope they find the answer but we hope they don't find anything that is wrong or worrisome.

It is hard to say if this is a direct consequence of her treatment or perhaps ramifications from the internal GVHD . . . I am sure it is all connected. It's just frustrating for us but Erica rolls with it . . .she continues to eat what she can and doesn't make a fuss. At the end of each gagging episode she collects her breath and then says to us, "I'm OK".

This Friday we will get to tell Erica if she will have a brother or a sister!! We are all very excited.

I'll be sure to share the news on all fronts just as soon as we hear (or see). Please keep Erica in prayer next Monday that all goes well with her procedure. As parents, we just continue to hope that all of these little side effects go away, and you know, they are . . . we can't ever lose sight of how far she has come. I just sometimes think about the questions she may have about her new sibling . . . When does he or she get her tubes put in? Where are her or his tubes? How many "buggies" (meds) does he or she get mama? When do we give her or him the shot? Why doesn't he or she get a shot? ~~All in time, these and many more questions will certainly be asked. It's ok though, she'll continue to learn more and more about the journey that she has already traveled.

In Faith.

Two Years BMT

2010-01-23T11:17:00.000-08:00

Hard to believe it's been two years since Erica received the gift of a bone marrow transplant. Everything is still so crystal clear in my mind about that period of time; the weeks leading up to the transplant and the night that she was literally infused with new life. So much has happened in the past two years, not the least of which is her recovery. We all know that the weeks and months post transplant were difficult but at some point Erica just emerged from it all with an energy and zest that seemed almost impossible given the circumstances. But she just moved past it all and that meant that we did too . . . pretty soon it was time for swimming and tumbling and school.

Medically speaking, this two year anniversary of the BMT is notable. Every year closer to her tenth anniversary brings her closer to being considered "cancer free". So, on February first she will have the two year check up; we will meet with Dr. Taylor and Kay and then she will have her EKG and blood work. We expect that all of these test will be fine. In addition, we will make her appointment at the Mind Institute so that they can continue to document her cognitive abilities post cranial radiation/chemo/BMT. Erica is still on seven medications and continues to receive her Growth Hormone shot every night. We still look forward to each and every decrease in medication . . . imagining the day when no meds are necessary. But all in all, her doctors are very happy, on all accounts, with Erica's progress and energy.

Two years also marks are official ability to contact the donor. Kay will submit the paperwork to the donor's transplant center and we will hope to hear back soon. We will just open communication at first and then, our ultimate hope is to be able to meet him someday. Perhaps we will share the book of this blog with him, and then he will know, fully, the depth and extent of our love and gratitude for his selfless act.

Celebrate with us today; raise a glass to all the organ donors in this world, to those that have overcome and to those we remember, to those who are still battling . . . celebrate their strength, courage, and endurance; celebrate all the small victories and in our case, celebrate every year closer to those amazing words . . . CANCER FREE.

If you want to celebrate "Erica style", have a CUPCAKE!

Happy "Birthday" Little!

New Year, New News

2010-01-06T19:42:00.000-08:00

The holidays were wonderful . . . Santa, a new doll house, family, lots of cookies and a birthday party for baby Jesus (fit with cupcakes and all). Erica is already asking when we get to have Christmas again!

As many gifts as Erica tore open on December 25th, one of Erica's favorite gifts was the news (that came in early November) that she is going to be a Big Sister! Sometime in early July, we will have a new little member of our family. Erica has already made great demands for a baby boy . . . but after meeting baby Bella Garbo on New Year's Day, she's thinking a "baby Bella" sister wouldn't be so bad. Erica is already saying "HI" and giving my tummy kisses. I think that she is going to be a great sister.

I think a lot about being pregnant with Erica, my pregnancy was so easy and there is such an awe about being pregnant for the first time. I think back on how little I knew about what was to come; there is such a sweet innocence about it all. I think back on the fact that there was no way to know or even contemplate the type of news we received only sixteen weeks after meeting our baby girl. So of course our prayer now is that this baby is super healthy! Bob and I talk a lot about really experiencing "babyhood" outside of the hospital setting. This will really be a "first" in so many ways as Erica's first two and a half years were spent in such extraordinary circumstances. We're all very excited and yes, we will be sharing the boy or girl news as soon as we find out.

Speaking of looking back on Erica's first few years, I must share with you another amazing Christmas gift. As a surprise for me (and actually for the whole family), Bob took every blog entry from December 2006 to December 2009, formatted the entries and the photos, wrote a couple of "chapters" himself, obtained a "forward" from Dr. Doug Taylor and then had all of the contents beautifully bound in a hard back book called Erica's Journey: A Mommy's Blog, A Testimony to the Strength and Courage of a Child. It is amazing, this whole experience captured in a book, with words that I barely remember writing, during times a crisis, times of fear and times of intense appreciation. It is a treasure.

2010 brings a great deal of hope, growth, joy, and celebration. January 23rd will be the second anniversary of Erica's transplant . . . her "other" birthday. We have begun taking the steps necessary to meet Erica's donor.

Happy New Year!

The Holiday Season

2009-12-07T08:02:00.000-08:00

Fall has been a very busy time in the Livesey home; Erica is engaged in all sorts of activities and she is loving the fact that Nana and Papa are now practically neighbors. Nana has been watching Erica two days a week since I went back to work and the other days are split between preschool and home with her babysitter, Chandra.

In October, Bob and I ran the Nike SF Half-Marathon in honor of Erica and In Memory of Sammie. We ran with friends and neighbors and actually had a great time . . . and a very "hilly" run.

Thanksgiving was blessed with the presence of Great-Grandpa who came up from LA to join us. He is just a joy to be around and oh how he loves his great-grand daughter.

This morning we were in awe as we woke up to SNOW. Three to four inches of snow had fallen and stuck to the ground . . . it looked like a winter wonderland. Erica, Bob and I ran outside to build a snowman and take it all in!

Erica is doing so well. Still in the midst of her immunizations, they are going well and her body is responding as it should. Her last blood tests were "beautiful" as nurse, Kay, says. Erica has grown five inches this year; we are so thankful that the growth hormone is working. Last time we saw Dr. Taylor he finally dropped the dosage amount of Prednisone/steroid (yahooo)! We will petition to meet her donor next month.

It's all good news and feelings of gratitude as we approach the second anniversary of Erica's transplant.

God Bless.

Dreamin' Tour

2009-10-27T19:30:00.000-07:00

About a year and a half ago Bob and I made a deal, we would someday pack up the car and take Erica on a road trip. We had been in the hospital for so long, we were not able to go anywhere for any length of time do to her consistent blood draws and infusions, and at the point that we had this conversation, we were required to keep her indoors 24/7. So, for fun, we planned a trip and we called it the "California Dreamin' Tour". The trip consisted of San Diego-beach, Sea World and swimming, LA-visit with family, beach, and Disneyland, and then Monterey Bay Aquarium. We discussed other possible stops along the way and just enjoyed imagining what it would be like to just be able to leave with our little girl without the daily fear of an ER visit. And so, in September of this year . . . The California Dreamin' Tour became a reality.

The highlights of Erica's trip were, the pink hotel (in La Jolla), the whale that goes up and down (at Sea World), the tea cups, Mickey and Minnie, Snow While, Sleeping Beauty, Tinkerbell (all at Disneyland), Gene Burd (my uncle), "Gate Gandpa" (great-grandpa), and swimming! She still talks about all of these things . . . . her memories of our vacation.

We had a wonderful time; nana and papa came for most of the trip. My mom's favorite memory (a much anticipated event) was holding Erica thru "It's a small world". We all had tears in our eyes . . . "we're here, we're really here, and Erica feels great!"

I remember telling people many, many months ago that when I report that Erica is getting her immunizations, that will be the next milestone, that will be a time to pause, smile, and recognize how much healing has taken place.

Erica received her first round of immunizations last week.

In two weeks, she will go in for a blood draw to determine her blood's reaction; basically we will know if the immunizations were effective or not. If not, we will wait until her immunosupression decreases. If there is a response, we will go forward with the next round. She is basically starting from scratch (as a newborn would). It is really a wonderful thing.

Now, in the spirit of reporting the whole story . . . Erica's leg became infected after the shots. Huge bummer; she is on another, new, antibiotic to rid her body of the infection. She hates the taste of the med but understands that it will help her leg feel better; she is a very good sport but demands that the dose be followed by an M&M.

Speaking of M&M's . . . Erica hit yet another milestone - she is daytime potty trained!!!! Woo-hoo!!! We just switched to Princess Panties, said "bye-bye" to the diapers and two days later she's down with the program. Oh, yes . . . as long as the successful potty mission is followed by an M&M.

Great things to report, we are truely blessed.

Sammie

2009-10-10T14:34:00.000-07:00

There is a new angel in Heaven today, Sammie passed away yesterday morning.

My tears were confusing yesterday . . . I knew this day would come. Every time I opened her blog there was a part of me that hoped her suffering was over, that she was at peace and then, of course, there was the part that wanted her family to have yet another day with her. My tears held images of Sammie, memories from the few times that I was lucky enough to be in her company. Images of her mom and dad at her bedside, wondering how, in a million years they have endured. And God bless Sammie's brother and sister.

I thought too, about the tears shed by her extended family, by her friends, by her community and then by the thousands of people who followed her blog, and the many who never even met her. Sammie's life changed lives and her mother's words gave people hope and strength that they never knew possible. I hope that God will show her the difference she made.

God, bless this family, welcome Sammie with celebration, and comfort us from the agonizing wonder of "why?".

Peace is yours sweet Sammie!

New Info

2009-09-02T20:34:00.000-07:00

Thank you for all of the prayers!

This morning Erica seemed more lethargic than she had the day prior and so we were glad that lab tests were only a few hours away. She slept most of the morning and on the way to the hospital but she did manage to keep the few bites of breakfast down.

Erica was so good during the lab work . . . there were quite a few tubes that needed filling and the gals at the lab were great.

When we got home, Erica (and I) went right back to sleep. I guess I should add, here, that I started a new job on Monday. Yes, Erica had not so much as sniffled for 19 months and then 3 days before mommy goes back to work, she gets the flu bug. Ahhh, it wouldn't be any fun if it were easy!! So, needless to say, my first week has been a bit of doozy but my boss is great and, as a mom, she has been very understanding. So, today, I was able to leave a meeting and get to the hospital in time to hold Erica during her blood draw. In the meantime, Bob has been a super hero dad.

The phone finally rang this afternoon and Bob spoke with Dr. Taylor. Erica's CBC looked good and so our greatest fears of a relapse were finally put to rest. Deep Breath. The bad news was that her glucose came in at an astonishing 24 (normal = about 102). Hence the "wet rag" behavior. While this could be low enough to put the average person into a coma or into seizure, Erica's blood sugar tends to be low to begin with and we have had several issues with her hypoglycemia in the past. It was just the last thing we thought about this week given all of her other symptoms. So, we frantically gave her syringes of sugar water and frosting and then prayed that she wouldn't throw up. I tested her again and it was 44 and then, after giving her all kinds of starches (she still doesn't really want to eat) it was up to 70.

The orders for tonight are to wake her every 4 hours, test her, and give her something to eat. If unsuccessful, we will need to go to the hospital for glucose IV. No, no, no . . . we do not want to do that!

Again, I ask for prayers . . . no more vomiting, increased hunger and eating, normal glucose levels asap, and that the virus exits her system.

Thank you. With love,
Meg

The Bug

2009-09-01T21:24:00.000-07:00

It's been nineteen months since Erica's transplant and she is currently sick for the first time since. This past Friday she got The Bug; fever, vomiting, wheezing, etc. It's been tough, physically and emotionally. It's hard not to think the worst but Dr. Taylor saw Erica today and it was nice to see his lack of major concern. He took some swab tests and chest x-rays and so far things look good. Tomorrow we will go in for a blood draw and potential infusion of immunoglobulin.

This may be like any other flu bug, the same one that has hit many kids this year . . . but, oh, it is so hard to see her pale, weak, exhausted, and thin. Bob and I have been silently stressed, tying to maintain perspective.

Please say prayers that Erica feels like herself again soon! I'll keep you posted.

First Day of Preschool

2009-08-11T10:15:00.000-07:00

I took Erica to preschool today and I when I got in the car, I cried like a baby!
Erica, on the other hand, was cool, calm and collected. She marched up the steps to her preschool with her back pack in tow, put her water bottle into her new cubby, gave me a hug and said "Goodbye". She was ready . . . she knew her teacher's name and she new that she would need to be a good listener today. Inside her new backpack (compliments of Auntie Pam), she had her hat, change of clothes, a lolly-pop, a set of pens, and a little picture of her family.
So why all the mommy-tears? They don't prepare you for this moment . . . I used to laugh at my other friend's when they would even call "preschool" "school". Isn't it just glorified day-care? No, preschool is the beginning of the educational journey, a "rights-of-passage"; for child and parents. There is an independence about it all that is just so sweet. So here is the warning for all the mom's taking their "baby" to school for the first time this month, bring a tissue and enjoy the moment!
I took a photo of Erica just outside the front door . . . the way my mom did with me. (I cried during the photo shoot too).
I remember wondering if Erica would ever go to preschool . . . would she be healthy enough, would she be strong enough, would she be cognitively ready, would she be socially ready, and the list goes on. But yes, she is! She is more than ready!

I love you Little!
~Mommy

Happy 3rd Birthday!

2009-08-04T12:50:00.000-07:00

Happy 3rd Birthday! (part 2)

2009-08-04T12:49:00.000-07:00

Healing Continues

2009-07-14T10:43:00.000-07:00

The summer is going really well. Erica is enjoying the outdoors, loves to swim and talks about going to preschool everyday.

She will be three years old on August 3rd.

Three years old . . . . I remember wondering if she would ever walk or go to school or play with friends and here we are, ready to take on the world! That is how Erica approaches life ~ ready and willing to try new things and master them on her own. She has a determination about her that I am sure came from the brave war she has fought.

This past week Erica was in the hospital, twice. Once for a CT Scan and an infusion of IVIG and then again for a clinic visit. This was all because of a virus that she caught and the docs had some concerns about her symptoms . . . always better safe than sorry. So the tests came back negative and her virus is on the road to recovery but going back into the hospital was hard for me. The day that we did the infusion room and the med center, one after the other, brought back a flood of memories. Just packing the bags, the snacks, the parking, getting into one appointment and then off to another, holding still for blood work and then scans, pinning Erica down for tests and then comforting her in the aftermath . . . this is tiring. But this was life. And honestly, I just think God gives us extra doses of energy and stamina in our sleep when we go through hard times because I look at that routine now and my knees go weak.

Life as we live it now is busy, normal busy, and Erica runs on high energy from 7:30am to 7:30pm (no naps, heaven forbid). She loves to read books and magazines, she would play all day at the park if she could, she is getting stronger and stronger at her tumble time classes, and is about to "graduate" from her physical therapy group. In August she will start preschool, two days a week, and she will begin speech therapy at the local elementary school.

This is the update, it has been awhile since I've posted but I would like to start writing more often. I would like to think that my posts would begin to take on a new slant . . . and not be so much about life with a "cancer kid" but it goes without saying that, the aftermath of a bone marrow transplant has it's own challenges and we deal with those everyday. And so, in as much as we have all moved forward, outside of chemo and blood transfusions, we are still healing, physically, emotionally and spiritually. The honesty that I try to bring to the keyboard, every time I write, is for me, for Erica and for anyone else who may relate in one way or another.

Prayers for Sammie and her family

2009-06-25T20:47:00.000-07:00

From Sammie's Mom~Please keep them in your prayers!
"Our baby girl is slipping away from us.. I have learned to cry with no sound coming out of my body.. She is sleeping most of the time and now the tumor in her spine is visible through her skin..We love her so and want this to be easier for her.. No food since Friday but she misses eating.. it is just torture.. she is strong and brave and never ready to give up.. so we carry on.. I leave the lyrics to a song from the play Wicked..it sums this mess us pretty well..
thanks for the prayers..

El

phaba):
I'm limited
Just look at me - I'm limited
And just look at you
You can do all I couldn't do, Glinda
So now it's up to you
For both of us - now it's up to you...

(Glinda):
I've heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don't know if I believe that's true
But I know I'm who I am today
Because I knew you...

Like a comet pulled from orbit
As it passes a sun
Like a stream that meets a boulder
Halfway through the wood
Who can say if I've been changed for the better?
But because I knew you
I have been changed for good

(Elphaba):
It well may be
That we will never meet again
In this lifetime
So let me say before we part
So much of me
Is made of what I learned from you
You'll be with me
Like a handprint on my heart
And now whatever way our stories end
I know you have re-written mine
By being my friend...

Like a ship blown from its mooring
By a wind off the sea
Like a seed dropped by a skybird
In a distant wood
Who can say if I've been changed for the better?
But because I knew you

(Glinda):
Because I knew you

(Both):
I have been changed for good

(Elphaba):
And just to clear the air
I ask forgiveness
For the things I've done you blame me for

(Glinda):
But then, I guess we know
There's blame to share

(Both):
And none of it seems to matter anymore

(Glinda):
Like a comet pulled from orbit
As it passes a sun
Like a stream that meets a boulder
Halfway through the wood

(Elphaba):
Like a ship blown from its mooring
By a wind off the sea
Like a seed dropped by a bird in the wood

(Both):
Who can say if I've been
Changed for the better?
I do believe I have been
Changed for the better

(Glinda):
And because I knew you...

(Elphaba):
Because I knew you...

(Both):
Because I knew you...
I have been changed for good...

Father's Day

2009-06-20T22:09:00.000-07:00

Bob loves Erica. No, really, it's the most out of control, crazy, beyond imagination, make you cry kind of love. It's a dad's love . . . isn't it really as simple and as complex as that?

I have written for hours about Erica's life and her journey with leukemia; I hope I have acknowledged the wonderful friends and family that have guided us, mentally and spiritually and I hope I have given the right amount of respect and gratitude to Erica's doctors and nurses. But one thing I know for sure is that I have not told you enough about Erica's daddy.

If you want to know how I have been able to be so strong and if you want to know how we really made it through . . . . it's because of Bob. I mean that from the bottom of my heart. Here is a man who never let a single dose of medication go un-administered, who would drive to the store - from the hospital - at midnight if Erica was out of "wheats" (cream of wheat-her breakfast). This is a man who did my laundry and packed my bags and brought them back to the hospital just so that I could stay with Erica. He has held Erica's interest and my comfort as his highest priorities and he continues to do so everyday. This is how he loves. Bob would rather drive me crazy, asking if I put sunscreen on our daughter then ever have her gentle, medicated skin burn. He makes a monthly medication chart to post on the refrigerator (fit with photos and clip art) so that we execute "the buggies" (meds) without falter. He makes the best "mash-a-ma potatoes" and pancakes and tells Erica how HE will be the one to teach her how to cook. This is how he loves.

Because of Bob, Erica shows love with grandiose expression, sound effects and all. Because of Bob, Erica knows how to sort mail, read the newspaper, clean her high-chair, and poke at belly buttons (just for the purpose of pure laughter) .

I see the love Bob has for Erica and it makes me ever mindful of the love that my dad and my step-dad have for me and just think . . . wow, that is some love.

I feel privileged to be a witness to the relationship between Bob and Erica, I will always hold it up and honor it . . . there is just nothing more precious in all the world.

Happy Father's Day Bob! You are an amazing daddy!

Happy Father's Day to my dad and to my Tom, thank you for giving me such special examples of how much a father's love can make a difference in a daughter's life. I am forever blessed!

Summertime

2009-06-02T10:51:00.000-07:00

There is just a different feeling in the air when school is getting ready to be let out for the summer, the water table gets set up in the back yard, the bathing suits come out from out from their winter storage and lemonade becomes a standard shelf item in the fridge. Summertime.

Erica is in a few different activities now, tumble time, music, and she will start swim lessons next week. She loves picking out her clothes and trying on, at least, three pair of shoes before we leave the house on any given day. It is going to be a fun summer. Erica has several friends on the block and every afternoon they all converge to the front yards and play from house to house. It is a joy to see; only last summer we were confined to our home for the entire summer, wearing a mask, Erica could only go from the house to the car for doctor's appointments. So, to see her running and playing with the kids feels like heaven.

Bob and I went to Washington DC on vacation a few weeks ago. We had a great time seeing all the sites and monuments. We were the total tourists; cameras, backpacks, trolley tours, the whole deal. Personally, I think that is the best way to see DC, my parents lived there for about nine years and I still see and learn new things every time I am there. Having been a political science major in college, it is a bit embarrassing when the tour guide asks questions about our nations political history and I have but not a clue! It was fun, Bob and I enjoyed being away but five days was enough . . .it was great to come home and see our little girl.

Erica loves to dance and play "dress up", thanks to her friend Tyler, Erica has lots of dress up clothes and princess costumes, hence the photos!

We still pray, everyday, for our friend Sammie. Sammie is home, on hospice care, with her family. Her mom writes in the blog (see Sammie's photo to the right) about the privilege of being Sammie's mom and emotional strength it takes to be with Sammie in these final days of her life. Sammie got a little puppy from "Make A Wish" and he has been keeping them busy . . . and laughing. I can not read the words on her blog without feeling my heart in pain, but it keeps me ever mindful of the fragile nature of it all. Last week alone, five children in the Caring Bridge group, lost their lives to cancer.

Little Miss Eleanor Wilson completed her chemotherapy treatment after 2.4 years this last week. Her family has been celebrating for days. She has been a brave warrior through it all!

People need to understand that for us and for families who have weathered the storms and are, perhaps, "done" with treatment, are not really "done". The medications and the doctors appointments and blood draws continue, maybe not as much, but they go on. Erica is still on 12 doses of medication per day. Just this last week, Erica's kidneys were "talking" because of her GVHD medication, and so we need to cut back. Yes, we celebrate, and we will always celebrate the gift of Erica's new marrow and Eleanor's successful treatment AND, we will continue to pray that these little girls stay cancer free forever, with no long term ramifications.

It is for these reasons that we continue to speak out for awareness of these blood cancers and childhood cancer in general. Please keep all of these kids in your prayers.

Here's to a great summer!

Be the Match!

2009-05-29T13:06:00.000-07:00

The Be The Match Marrow-thon is a national campaign from June 8 – 22, 2009, building awareness of the marrow registry and offering an opportunity to join the registry without cost (FREE) to new registrants.

Thousands of critically ill patients search the registry every day hoping to find a generous donor willing to donate healthy blood-forming cells. Today, local patients Victor, Javier, Sean, Nick, Dylan and Matt are all looking for matched donors to help them survive leukemia. Jared, Michelle, Dominic, Noel, and Erica have all survived their diseases because of generous strangers who donated for them. There is a special need for registrants with minority ethnicities.

If you – or friends and family - are interested in joining the registry without cost to you, here’s how and where you can sign up from June 8-22, 2009:

Designated BloodSource centers in Davis, Elk Grove, Citrus Heights, Roseville, Chico, Redding and Merced
Designated mobile drives are listed at www.bloodsource.org
Online at www.bethematch.org, with the promo code BloodSource09 and a swabbing kit will be sent to your home.

Joining the registry is easy as 1, 2, 3 and involves:

1. Making a good faith commitment to donate marrow or blood stem cells if you are a match and to keep your contact information updated

2. Completing paperwork

3. Swabbing the inside of the cheek for tissue-typing (if you sign up online, a swabbing kit will be sent to your home)

The Marrowthon is also a good opportunity to share information about other ways to help patients, such as blood donation and blood component donations. Most people in need of marrow transplants are also using blood products. More information is available at www.bloodsource.org or www.bethematch.org.

You could BE THE MATCH to give someone a second chance at life. Join today.

Thank You, Mom

2009-05-10T11:18:00.001-07:00

I love being a mom. It has made me appreciate my mom so much more. There is a lot to be said for my journey into motherhood . . . it came hard and fast and it didn't follow the norm. But neither did my mom's journey into nanahood. I can only imagine what becoming a grandmother is like by the way my mom's face lights up when she sees Erica. My mom had only weeks of pure bliss before she was in pure fear, it was double duty for her . . . when Erica was diagnosed she was taking care of me (being the best mom she could be) and taking care of her new grand-baby. So much of how Bob and I got through the roughest patches was because of how my mom made it all possible. I have tears in my eyes right now because there just aren't enough words to convey the care and support that my mom gave to us.

What I remember most is waking up on the hospital room floor; I could always tell when she was walking in through the double doors . . . she was quite and careful, she would wash up and put on her smock and then peak in to see if I was awake and ready for my coffee (that she had just picked up at Starbucks). Then we would talk about the night's activities and how Erica was doing.

For Erica, it was then, as it is now . . . Nana represents FUN! Even in the hospital, Nana would be the first to open a game or toys and proceed to do the very opposite of what the directions would say, like . . . put the crayons on your fingers and sing "where is pointer?" or make up a song about way the cow is pink . . . you see where I am going with this? For me, my mom represented ENERGY, energy that I didn't have at the time. She infused the room with love and vitality.

Nana still comes over two days per week and she does the same here at our home, only now, I think it is how she imagined it always would be . . . thank the Dear Lord! My mom still "takes care of me" and I realize now that moms just do that, no matter how old their children are. I think I understand that differently now that I am a mom . . . and I appreciate it a lot more. Of course knowing what I know now about a mother's love makes me feel HORRIBLE about my teenage years (but that's another story)!

Bob and I have always said that we could not have asked for more; my mom's support has been steadfast and unconditional. When I look back on the journey, as I did in my last post, it is not without total awareness for the supporting cast, and mom ran that show. She wasn't pushy and she never seemed to interfere; she just continues to show up in the most loving ways.

Perhaps many people feel this way about their mom, but I just can't find the words to express my gratitude. It's just too much. And so, I just try to do the best job at being a mom as I can do . . . knowing that, in and of itself, that is a gift to her.

Happy Mother's Day!

Sharing Our Story

2009-05-05T21:28:00.000-07:00

From time to time, Bob and I are asked to share our story with Infant Leukemia to groups, mainly at fund raisers. My feeling is that, if Erica's story can used to inspire support, generosity, awareness, or even compassion, then we are in a position to give. This is our opportunity.

On April 30, 2009, I spoke at the Diamonds Are Forever fund raising event for LLS. It was a beautiful event and Renee did a fabulous job of putting it all together. I am sharing, here, what I shared with all those that attended the event. . . . .

~~~~~~~~~~~~

The talk track seems to change over time. I remember the first time we spoke publicly about Erica’s story; I focused almost 100% on the blessings that have been placed upon us throughout the journey. I didn’t want people to feel sorry for us or think that we were ungrateful for all the support . . . but here’s the deal, I’ve become more comfortable with the situation over time and I can honestly say that I will never be able to convey it all—but if I share our story, I need to share the good, the bad and the ugly.

A couple of months ago I summed our experience with this statement: This has been the most painful experience of our life. It is also the most blessed. It is a life altering, priority aligning, uncontrollable journey.

On December 12, 2006, only 4 months after Erica’s birth, we took her to the ER only to be transferred by the Pediatric ICU Transport team to UC Davis Medical Center. It was chaos, complete and utter chaos . . . only we didn’t know it. I remember it as the calm before the storm, the last moments of ignorance, thinking that it was just as her pediatrician had said, it was the flu. When I think back on those moments now I realize that Bob and I were probably the only ones who didn’t know what was going on with Erica, but the news came soon enough.

The doctor who came in the next day sat down in our PICU room and just spelled it all out. This was Infant Leukemia, this was an uphill battle, we better prepare for war and the odds are not in our favor. He prepared us for a long road, an uneven road but one, that with a lot of prayer, we would endure.

From the time Erica entered into her first remission our biggest fear was relapse. How on earth could any human being go through this more than once? Every once in awhile I would imagine getting the news that “it” was back and I would immediately feel a punch in my gut. When it actually happened, it wasn’t so much a punch in the gut; it was like being wrung out like a wet towel . . . but really slowly. It ached, with every twist I had less energy and less hope and less faith. The month of October, 2007 was the darkest month of my life.

But we rallied, and on January 23 of 2008, Erica had a Bone Marrow Transplant. Her donor was a 25 year old male. If you’re not, become a donor. We will petition to meet Erica’s donor at the end of this year. Words cannot express that what this young man already means to our family; in many ways he represents Erica’s second chance at life.

A benchmark event took place in Erica’s journey in February; she had her Broviac tubes taken out. These are the tubes through which she received her blood, platelets, potassium, fluids, pain medication, chemotherapy, flushes, and last but not least, her new bone marrow.

Even today, over a year since transplant, Erica is on 12 doses of medication per day and she has in injection of growth hormone every night. The meds will taper here and there, some may stay on board for years and the growth hormone shot is new normal, expected to be administered every night for the next 15 years.

What we experience today is manageable and even, dare I say normal. Or, perhaps normal by comparison~

Erica has had about:

50 Blood transfusions
50 Platelet transfusions
Over 100 administrations of chemotherapy
She has spent over 120 nights in the hospital
She has had about 25 spinal taps and
About 15 bone marrow biopsies
And 12 rounds of radiation

Erica has endured more than that, she has:

Experienced multiple infections and fevers
Survived a near fatal liver biopsy
Hypothermia
Hypoglycemia
Vomiting
Chronic intestinal infections
Sleepless nights
X-rays, ultrasounds, EKGs

So many procedures and test that an infant should never be exposed to.

I think the main message here is that we did endure. That we are stronger than we thought. Through it all, Erica has learned to do all the things that babies do: sit, crawl, eat on her own, play, walk, dance and talk. Erica is a joy to be around, she literally lights up the room and there is a “knowing” about her that I can’t describe, but it says – “I am survivor”.

Twenty years ago, and that is not such a long period of time, an infant diagnosed with leukemia would have been sent home on Hospice. And if that had been the case for us, obviously our story here tonight would be drastically different.

It’s events like these and people like you, it’s the Leukemia Lymphoma Society that make the difference over 20 years . . . its all about the research, the trials, the outcomes and then we have a new protocol, new regimens and new hope.

Thank you for your awareness

Easter Eggs

2009-04-14T09:25:00.000-07:00

Easter was a very special day for us this year! For one . . . Erica was not in the hospital; two, she was able to be outside; and three, we were able to (finally) go to The Simao's Annual Easter Egg Hunt.

While the big man in the bunny suit was not going to work for Miss Erica (the big man in the red Santa suit didn't work either), all other things Eater were a huge hit.

Erica would hunt for the eggs and then shake them to see if there was anything inside; I don't know who was more competitive, her or me.

The Simao's party was so much fun, there were animals, a jump house, snow cones, food, great people and a beautiful setting.

Easter is always a great reminder that Miracles do happen.

Pretty in Pink

2009-04-13T09:30:00.000-07:00

The day before Easter was our friend, Lance's first birthday party. For those of you who don't know, Lance is Luci's brother and Luci is Erica's very good friend! So, naturally there was an Easter egg hunt to get the kids all ready for the next day.

We had a ball and Erica love to spend time with her friends . . . and the cup cakes weren't so bad either! (Erica had 3 of them!)

This week is Erica's first blood draw without the Broviac tubes. We go in on Thursday. We will numb the skin on the inside of her forearms so that she won't feel much pain. I think the issue will be keeping her still enough during the draw because they will have a lot of tests to run. So, fingers crossed it all goes well.

The update on Sammie is that she is home from the hospital now and hospice is in place. We know that Sammie's time here is short but that she will constantly be surrounded by God's light and her family's love and all of our prayers.

Deep Breath

2009-03-28T21:43:00.000-07:00

Last Thursday we spent the day getting check ups for Erica. She is still doing really well and the reports on the GVHD are the same; it is a chronic form of GVHD and there will be various ways to deal with it through the years. Some forms of treatment just aren't available to Erica given her size.

Last Thursday was also the day that Sammie had to go into the hospital for an infection. Her family had hoped to keep her home, with no further hospital time, but it was absolutely necessary to go in. We were able to see her in the Infusion Room. Erica recognized Sammie right away and gave her a big smile. I was able to give Chris, Sammie's mom, a big hug. We also brought a goodie-bag for their stay in the hospital. I saw something that day that had only ever been described to me and that is the sight of a mother's strength. Usually it is only felt, but on Thursday I saw it with my own eyes. People told me that I had done this . . . and they are right I did . . . but I never knew what it looked like. There was Chris, she looked beautiful, well put together, lip stick and all, she smiled, she was gracious, and then there was that "holding it all together" badge of honor. My goodness, how I wanted to just let her melt into my arms . . . but that can't happen because this strength is too powerful and her daughter is trusting that strength to pull her through. Chris knows that there will be a time and a place where it is safe and don't get me wrong, I saw it in Dad too. People told me that there were times when they saw me like this and the truth is, we (the moms) know it, but what do you want us to do . . . there is work to be done, care to be given, doctors to talk to, bags to pack, medication to be given, . . . this is not a good time to come unglued. That is what people see, this type of strength, this way of being is intentional, 100% on purpose. And that is ok.

I spent some time tonight visiting cancer kid's websites. If you ever want to get some perspective, do that. Here I was, just back from a neighbor's home, feeling like I was punched in the gut as I watched twin two year olds run, jump, talk, sing, yell, at about 15 inches above Erica. It's no big deal, I just don't like it, always explaining to people who go, "oh my goodness she is so cute, how old is she?" I say, "two and a half." And then I watch their faces, hmmm, "she is so little." I think, "no shit." They feel like they need to say more, "was she a preemie?" So what do I do here? Sometimes I say, "No" and just leave it at that. Sometimes I say, "the cancer really affected her growth." It's ok, I know, she's little. That is her nickname, "Little" but what will this mean for her life or will this growth hormone kick into high gear pretty soon. She'll catch up, she'll talk soon, that is what they say. But for now, sometimes it just sucks to see my child being "the baby" as she plays with other two year olds. Back to the other kid's cancer websites . . . I regained perspective; Erica is alive, she is not on chemo anymore, she is growing, she is thriving and we are blessed.

I smile, I haven't really had a blog like this in awhile. I don't really know how many people read it anymore . . . I guess it is kind of nice to fall of people's radar, it means things are good. So, do me a favor and read Sammie's blog and pray for her and for her family. My heart is heavy.

God Bless.

House Call

2009-03-22T20:48:00.000-07:00

Usually, when I am running I write a blog post in my head. Oh how I wish I could just hit "send" and have my words appear on the screen. There are so many stories and updates to Erica's life right now . . . she taking full advantage of being TWO. Yes, we have attitude and "time-outs" often but happy to be living a "normal" life.

The good Dr. Taylor made a house call about a week ago. He jokingly said that "for every 999 trips that a family makes to UCDMD, the doctor will make one house call!" Ahh, finally! It was great, Erica was showing off for him the whole time, as if to say, "look at what I can do, thanks to all of your care and knowledge and experience and patience and hard work." And let me tell you, he was impressed!

Not so impressed, however, with the GVHD on her little hands. And so we got another boost in medication. She doesn't seem too bothered. We discussed things like long term effects of steriods and how the GVHD will play out. It is still a matter of time and close attention to any changes in the wrong direction.

There are other updates from the speech and phyisical therapy corner which I will post soon.

Overall, things are going well. We just pray for Erica's continued health.

Always on my mind right now is Sammie and her family. My heart is heavy with what Sammie and her family are giong through. Please add them to your prayer list!

In faith.

Freedom

2009-03-02T17:27:00.000-08:00

Erica now walks up to people and lifts her shirt up . . . (watch out Mardi Gras), she is very proud to be tubie-free.

We are doing well, day to day, happy to be giving baths without the normal Broviac care and the growth hormone shots are going fairly well. The day that she had her Broviac taken out, we also collected all of the binkies in the house and bagged them up for the little babies "who really needed them" (wink, wink). She was such a sport; she was introduced to a 3 month old on the 7th floor and then bravely handed over the bag. It was a sight to behold. Since then, we don't get many requests for the binkie but when we do we just reminder her that the "little, little babies" have the binkies and she just thinks that is so funny.

So we turn the page and find ourselves at the beginning of a new chapter. This chapter has less definition than the ones that preceded it, it is not based on a protocol or scheduled event, it is somewhat left to interpretation. I am reminded of the "choose your own adventure books" that I loved as a kid. I want this period of time to be about freedom for Erica and for our family. I don't really want to have a heart attack every time I even hear someone sneeze and I don't want to explain, anymore, why my baby has no hair or is so small. I guess I just don't want to be defined by Erica's cancer . . . and at the same time, I am so proud to call her a cancer survivor. My vision~freedom for Erica to play in grass and freely approach other children, to start preschool in the fall and have her 3rd birthday outdoors. And (for the benefit of Bob and all healthcare providers), this does not mean that she kisses the kid who sneezes or even thinks about walking outside without a sunscreen dip!

I love this little girl, she does talk much but she says it ALL. She is still as spirited as ever and that is why I know that she will embrace this new found freedom, in fact, she will lead the way.

I read Erica's blog from the beginning the other day, and yes, I sobbed. But objectively, I asked, did I honor her and our family through this journal of sorts? Did I thank the people that I wanted to thank? Was I fully honest and true to Erica's story? You know, as much as this is for everyone to keep up to date, it is for Erica. So I think I have done well, I know I have been honest, painfully so. But I saw a couple of "gaps" so stay tuned.

Love to you all and many prayers for Sammie and her family~God is with you!
Megan

A thousand words!

2009-02-21T08:53:00.001-08:00

Our friend Nichole took these photos of Erica for her senior project at school! These were taken just before surgery, Thanks Nichole!

Tubies are Out

2009-02-19T18:52:00.000-08:00

Just a quick note to let you know that the tubies are out and everything went really well with Erica's procedure this morning. In fact, we had a wonderful day. I will post again tomorrow with all the details (and photos)! We were able to get the tubes out, visit some very special people, get rid of the binkies and talk on the radio . . . all before noon.

Thank you for all of your prayers, this has been a long and emotional day. This day is now committed to memory~it feels like we were literally able to sever some ties today, even, perhaps, close a chapter.

All our love,
Meg, Bob and Erica

Nurse Wendi

2009-02-16T18:04:00.000-08:00

Well, with only three more days of Broviac care to go, I cleaned out the basket that housed all of the Broviac supplies . . . gauze pads, silk tape, chlorohexadine swabs, alcohol wipes, heparin syringes, saline syringes, hypafix tape and caps. I just took what I needed to get us through Thursday and I got rid of the rest.

It's weird, I must say. I hope I am not making too big a deal about this . . . but it is, for lack of a better example, the public display of completion; a point from which we move forward. For example, Wendi.

Wendi is our home health nurse. She was here the first time that we brought Erica home after being diagnosed at 4 months old. And for over two years, she has come to our home multiple times a month to draw Erica's blood and examine her symptoms. Wendi was in our living room the first time Erica crawled . . . and she cried, just the same as we did. See, without the broviac, Wendi won't be coming to our home anymore. Quite frankly, I am sad about this, we will miss her so much.

Wendi was there to listen and, at times, set us straight. She knows the emotional roller coaster that we have been on and therefore, she was a nurse to all of us. Wendi has always shared our optimism, she knew that Erica would make it through this journey and even when times were sketchy, she stayed strong and positive . . . without ever sugar coating the facts.

There have been people, many people, throughout this journey that have been our "shepherds", guiding us down the path, at times, in darkness. These nurses and caregivers are amazing, how they do their jobs, year after year, sometimes in celebration and sometimes in loss, I will never know.

Today, we just want to tell Wendi "Thank You" and "We Love You". We are honored to call you our friend and we have been honored to work with you. God knows that we do not know what the future holds but for now, we just get to pause and say Thanks!

All our love and gratitude, Miss Wendi!
Meg, Bob and Erica

February 19th

2009-02-13T14:50:00.001-08:00

That's the date, February 19th. Erica's surgery will be the first surgery of the day, 7:00am. We are all very excited, emotional on many levels and Erica is on board with the "bye-bye tubies" plan!

Please keep her in your prayers!

Lots of Love,
Happy Valentines Day!

Fun in the Snow

2009-02-01T14:28:00.000-08:00

On the anniversary of Erica's bone marrow transplant we were playing in the snow, taking sled rides down the hills! Quite the contrast from just one year ago. It was great!

Erica is doing really, really well. All of the one-year tests came back clean and, in fact, the grown hormone levels are starting to climb.

The decision has been made to have her Broviac taken out. Bob and I are going to make the call on Monday and we'll schedule for surgery on a date that we are able to get her in first thing in the morning. This way she won't notice the 12 hours that she will need to be NPO. Just one more surgery sweet girl!

I've been telling Erica that her tubes are going to go "bye-bye" and now she looks at them and says, "bye-bye" and then looks at me like, "well, why are they still here?"

I'll keep you posted on the date and time of her surgery.

Thanks for checking in!
love-love-love!

Happy Anniversary Erica!

2009-01-23T00:01:00.000-08:00

Today, one year ago, you received again, the miracle of life!

We love you, Erica!

God Bless You!

Check Up Time

2009-01-16T13:58:00.000-08:00

Erica had her 1 year post-transplant check up yesterday. Her transplant actually took place on January 23, 2008 . . . so we are just days away from the anniversary. Can you believe it? I think back to this time, just one year ago, and we were so filled with questions and hypothetical situations, warnings and concerns. We just didn't know what to expect; the spectrum of possibilities was so vast.

But here we are and so many of those questions are now answered. Erica's transplant was successful in that her body accepted the organ and she stayed virus free through her very tender recovery. I look back on photos from last April and barely recognize her; she was so puffy from the super high dose of steroids and other medications. She has come a very long way; and she has done it with a very special spirit about her.

Yesterday she had a echo, several blood tests and the basic vitals. She met with two of her docs and wowed them with her curly hair and high energy. Some tests that we got back look good and we are waiting on the others. There is no indication that we should fear any of the feedback.

Dr. Taylor did confirm that she has GVHD on her hands and in her mouth. We continue to treat it topically but this may be the on-going issue for Erica. The important thing is that we keep her hands treated because if they continue to go through this cycle, she could have very severe thickening of the skin which could, in turn, cause mobility issues within her joints. We are turning up our attention to this issue and will make sure that this stays treated with Dr. Taylor's recommendations.

The broviac . . . well, it is up to us now. Erica could have her broviac (tubes in her chest) removed when we give the green light. This is an emotional decision. Erica has had these tubes in her chest (connecting to the artery) since she was 4 months old; it is all we have ever known. Erica does not know her body without these tubes. They are labor intensive and certainly make for unique criteria. But those have been the tubes through which she has all of her blood, platelets, chemo, blood draws, fluids, IVIG, anti-nausea, medications, etc. They have literally been her "life lines". When the broviac comes out, her bi-monthly blood draws will mean getting poked. This will be a little painful but this is were we weigh the benefits. There is a sense of security in these lines, a safety-net we feel that we have in case anything happens . . . for times when she needs something right away. I realize that this thinking is from the past . . . the late night trips to the ER. We need to realize now that it is time to move on, Erica does not need these lines like she did in the past. I have spoken with other cancer-moms about this and I feel supported in my feelings about this; it is a very unique decision.

About the donor: there are only a couple of transplant donor centers in the country that require a 2-year waiting period to contact the donor . . . and Erica's donor came from one of those centers. SO, this is a bummer. We sent in the initial paperwork and that is the news that came back to us through our nurse coordinator, Kaye. And so we will wait till next year to meet our hero!

Thanks for your prayers and for checking in!
Big hugs from Erica!

Are you a "regular" to Erica's site? Please let us know . . . join "followers of Erica's Journey" on the right side of this page!

New Year!

2009-01-03T20:04:00.000-08:00

The holiday season was very much celebrated this year for our family. It was our first Christmas without having to be in the hospital, getting blood counts, and preparing for procedures. Erica was footloose and fancy free! She enjoyed her time with friends and family and she loved opening gifts (no matter who they were for).

We toasted to health in the new year and we all continue to pray for Erica's lifelong remission, that at age ten, she could be considered "cured". It will continue to be our daily prayer.

So the new year marks a new beginning and one that brings with it the anniversary of Erica's transplant and the opportunity to meet her donor. We will be making preparations in the coming weeks to work with the National Bone Marrow Registry on the petition to meet this young man. It is his ultimate decision as to whether he wishes to meet us. I have faith in the best outcome, either way. We will also look forward to her Broviac lines being taken out some time this year; a true marker of completed treatment. Erica has only ever known her body with tubes coming out of her chest, I remain curious as to her response to their removal. This procedure could still be several months out . . . but certainly something worth looking forward to.

The growth hormone injections are getting better and better. Erica knows the drill and we are much more comfortable with the process. The amazing thing is that she has already grown a half inch. If you are keeping track, she is now up to 29 inches. Grow baby, grow!

I haven't posted in awhile, but I am back in the routine and will post more often. I must say, it has been nice to take a break. Please know that in our case, "no news is good news".

We wish you a happy, healthy new year. There are so many things happening in our world right now that serve as constant reminders of how fortunate we are to be healthy, to be sheltered and to be loved. God bless.

Two Years

2008-12-12T09:24:00.000-08:00

Today is the two year anniversary of the day that Erica was diagnosed with leukemia, she was only four months old. I think back now on that day that changed our lives forever and I am only filled with gratitude.

We have been through so much and when I take individual, fearful nights or procedures or times when Erica was really, very sick and I think about the heartache, of course the experience looks different. But when I stand on the balcony and look out over the two years in its entirety, I am only filled gratitude. Gratitude for our healthcare providers, our family and friends, Erica's donor and God's healing hands.

Because the blog is also for Erica, so that she can read about her experience someday, I want to say this . . .

My sweet Erica,
You have shown us all what spirit is all about. You have endured these trials with grace, humor, and love. And my goodness, you are so strong. There are so many things that you have had to do that were painful and uncomfortable and you hardly ever complained. We have been in awe of the way you just adjusted to each and every procedure and environment. You will notice, sweet girl, that along the way, laughter has been the best medicine; in the midst of long hospital stays, we sang silly songs and danced silly dances and you would just laugh so hard. Your laughter gave us energy and hope, thank you for that! There are so many things I want you to know, but on this anniversary, I just want you to know how proud we are of you. In these last couple of months you have blossomed, your stronger and more physical, you love being out and about and you are so social with friends and strangers alike. Our prayer is that this just continues and that you begin to grow and talk and above all, that you stay cancer free for the rest of your life. May God continue to bless you always. ~Mama

Happy Holidays!

2008-12-08T10:57:00.000-08:00

It's been so long since I've posted! No news is good news! Erica is doing really well and she is enjoying this holiday season . . . her first healthy holiday season. Amen!

We went to Bodega Bay for Thanksgiving with Grandpa, The Ellis Family and Auntie Chrissie. It was so great to watch Erica play with the other kids and adjust so well to her environment. We had a great Thanksgiving with so much to be thankful for.

The Growth Hormone (GH) is going . . . well, it's going ok. Last night was her sixth shot and so far, it went the best. I think it just takes some getting used to. The devise is different than the syringes that we used for her chemo and now that she is older and wiser, it makes for a challenge! I am sure that in a week from now, we'll be pros!

The medications are frustrating right now, there are seven of them (twice a day) and Erica is getting keen to the ones she likes versus the ones that she would rather spit out (definite sign of a two year old . . . like I said, older and wiser!). We keep hoping that the meds will drop but instead we seem to keep adding to the list. All in time.

Right now Erica is really enjoying her sticker books and she loves "matching" games . . . anything from socks to matching flash cards, etc. She still loves her music and she recently saw a cartoon with tap dancers . . . which she tries very hard to imitate! LOL! Erica takes very good care of her babies, feeding and diapering too! She is a happy child and, although she doesn't say much, she communicates EVERYTHING she needs to communicate . . . the words will come, we're working very hard on it. All in time.

Much love to you and your family this holiday season. We have been blessed by your positive thoughts and prayers. Thank you for visiting Erica's site.

Ready to Grow

2008-11-11T20:45:00.000-08:00

These last few days have been filled with phone calls, squaring up the last details of Erica's growth hormone (GH) (Ahh, another acronym)! We are excited to be moving in this very positive direction. Erica will receive a shot everyday, in her leg. We will administer it all at home . . . we'll be trained. I have been trying to make up a song to go along with the routine so that we can make it a pleasant experience. If anyone has any ideas, let me know. Someday she will do the shot herself . . . oh yea, this will be the daily routine for about fifteen years.

The doctor, Dr. Bremer (a new one for those that are familiar with Dr. Taylor), endocrinologist, has estimated that Erica will grow six to seven inches in the first year. This is really a great age to start GH; she should be caught up by the time she goes into kindergarten.

The GVHD continues to improve in her GI and the sore on her tongue is looking a bit better. I wish it would heal faster but . . . I've learned to be patient (kinda).

We are doing some fun kid things lately like weekly story time at the library and a little music class with our friend Emily. We will continue to add group activities but need to be very careful as it is flu season. Get your flu shots! I have been working 4 days a week, mainly from home and we have Jenna here during the day. Erica is loving Jenna, so life around here is getting more "normal".

Thank you for all of your prayers for our family. There is still healing to be done, on many levels, please keep us in your prayers and pray for our friends on the 7th floor of UCD Children's Hospital.

The Rx Update

2008-11-03T13:56:00.000-08:00

For the past couple of months, Erica has been toughing it out with GVHD of the GI Track. The GVHD is obvious by looking at her "poops" and there are sores in her mouth. We thought that this would be a relatively easy fix with steroids but even with the increase in steroids, we did not see any improvement. We really wanted to avoid an intestinal biopsy so we were all (doctors too) very patient. Last week we had to report that it was looking worse . . . at both ends. Erica was given a topical steroid for her tongue ; we had to give this to her three times per day. A few days into in it, there were no changes. So, with the help of the pediatric oncology pharmacist, Kaye and Dr. Taylor, Erica was prescribed an experimental way of administering a particular drug. Meaning, the drug isn't new but it is not typically prescribed for this condition nor is it typically compounded in this fashion . . . . oh well. It's working. Dare I say it . . . things really do seem to be getting better.

Once this clears up, and I am sure that it will, the goal will be to taper down the oral steroid that she is still on. The hope, of course, is that she can be off of the steroids and be free from GVHD. Her blood work continues to look good and her liver counts are basically at a "normal" level; yeah! The other medications that she is on are fairly long-term, which is ok, what would Erica do without her "buggies" (don't ask).

Personally, I am doing much better. I made it through the relapse anniversary and the "total recall" that was going on in my head has subsided. I just went through such a powerful stage of remembering so many events and moments from the past two years . . . it was so intense. I wonder if it happens to most parents who go through this; I assume it does. We can only process so much at a time.

Our family has had so much fun lately. We have been able to take Erica outside and actually allow her to touch things and be around kids. She is loving all of her play time and because of it, she is so much more active and energetic.

Insurance forms are getting finished up and within the next couple of weeks, Erica will start the growth hormone. This is a big step and an even bigger commitment, but this is what Erica needs. All of the tests confirmed that her body is not producing the hormone, likely adversely affected by the cranial radiation. We knew that was a risk . . . and this is the remedy. We are so excited to see her grow.

Thank you for your continued prayers. Our family is doing really well and we have definitely found a new sense of freedom with the ability to allow Erica to participate in normal, toddler activities . . . . like "trick-or-treating". Happy Fall!

We did it!

2008-10-20T22:19:00.000-07:00

We did it! The Nike Women's 1/2 Marathon was in San Francisco on Sunday! Emily and I ran (along with 25,000 others) a beautiful, inspiring, hard yet scenic distance! We finished in 2 hours and 20 minutes . . . a time that we are very proud of!
Look at the slide show pics . . . when photos say it all! I do want to say Thank You to all of you who sponsored the run and supported all of our training (Bob and Jon!). Erica, Luci and Lance were our little cheerleaders during the race (photos to come!). Thank you Tom and Chrissie for being there cheering . . . especially on that one big hill. And Mom and Tom, did you ever think that you'd still be getting up so early to watch a race this many years later? (inside joke!) Trim, Ambra and Reese, thank you for your support and for your warm home to come to after the race.

Erica inspires us every day, this is just one of the many ways that we will be able to show her the impact she has on our lives, our goals, our strength and our faith.

Emily, thank you for your dedication. Thank you for mapping our runs and keeping us on track with our training. Thank you for your great stories that made me forget that my legs were tired or that we were actually going up hill. Thank you for reminding me to be strong, in so many ways. You are a great friend and a great running buddy . . . 26.2????

1/2 Marathon

2008-10-17T22:23:00.001-07:00

That's right . . . it's this weekend! The Nike Women's Marathon is this Sunday in San Francisco! I can't wait for the cool weather, the sites and sounds of the city and oh . . . . the HILLS! We're ready! I am running with my friend Emily and we have been training together for the last four months.

We are running in honor of Erica and Sammie and in memory of Trevor. I am also going to dedicate mile 11 to my friend, Alejandro, who used to be in the infusion room with us. He passed away last year. There are so many children, strong, brilliant warriors who fight cancer everyday . . . we run for them all!

If you are there . . . Emily and I will have a photo of Erica on our shirts, please say HI (and "keep up the good work") if you see us on the run.

Love and blessings to you.

Day at Apple Hill

2008-10-14T08:11:00.000-07:00

No words necessary . . . we had a great day at Apple Hill!

Next Steps

2008-10-08T09:28:00.000-07:00

Erica is doing well and her skin GVHD is looking much better. The GI track isn't improving as quickly but that was to be expected, I just hope it clears up soon. The stitches from her skin biopsy came out on Monday and she is very proud of her Dora band-aides.

Tomorrow we go in for a growth hormone test where her pituitary system will be tested. This test will include several medications, growth hormone and blood draws. The goal of the test is to determine the level of growth hormone output after she is actually given the hormone. It's not an even input vs. output. If her system is operating under the assumption that is has adequate levels then it will not adopt the levels that we give her . . . making the daily injections unnecessary. The testing will take about 4 hours and then we have been told that she will be a sleepy girl for the rest of the day.

Those are our next steps on this road to recovery. Erica looks good, puffy from the steroids, but active and happy! God Bess!

Light the Night

2008-09-29T21:18:00.001-07:00

Light the Night 2008 was a huge success! At the end of the night, they announced that nearly $200,000 was raised for this event alone. How amazing it that?

We had a great time. We got there early and had a great picnic and then the activities began . . . the butterfly release, the Hope on Wheels hand prints, and then the speakers and then the walk! We had a very good Erica's Light team turn out and Erica was in great spirits all night.

The photos are posted, enjoy.

Love and Light!

GVHD Update

2008-09-25T10:15:00.001-07:00

We have had a lot of conversations and appointments with Erica's doctors this week, so here is the update . . .

It appears that the GVHD is in her skin and in her GI track. Yesterday we went in for a skin punch biopsy (during which Erica was a total champ!) and decided to wait on the intestinal biopsy until next week (only if it is absolutely needed). Dr. Taylor said that the GVHD is presenting like an acute case versus a chronic case, which is good news. It is a little late in the game to see acute flair ups but anything can happen, as we all know.

The skin on Erica's hands will harden and then peal off. As you can see in the photo, this process is beginning to take place. Her hands are sensitive but she is handling it well.

Thank you for your continued prayers and all of your words of encouragement.

See you at Light the Night!

Return of GVHD

2008-09-22T21:06:00.000-07:00

Erica's skin is worse today than it has ever been. We are so sad.

Just when it feels like things are going so well, there is another bump in the road and once again, we wonder . . . when will living in the present be a choice rather than a necessity?

The Graft Versus Host Disease is active in her skin, all over her body and, we fear, it may likely be active in her intestines. She is uncomfortable but managing. The treatment began yesterday; we increased the steroids four-fold and doubled the Cellcept. We also introduced a new medication, mainly targeting to the gut. She gets a pain med at night to reduce the itching and to help her sleep.

GVHD has it's upside, in the sense that it fights against leukemia . . . not that she has any, but if she did, GVHD would kill it. The scary side about GVHD is that it can continue to attack other organs and cause some very complicated, life-long side effects.

There is a different energy in our home today. Bob and I are absorbing the news, trying not to be angry but . . . do you ever wonder how much energy you have left? I keep thinking, "ok, this is enough; we want to move on with our life now."

Please pray for our endurance and strength, for our faith and for Erica's skin and intestines. Please pray for her comfort through this blast of medication. Thank you and God Bless.

Skin in the game

2008-09-18T20:47:00.000-07:00

Well, we knew that Erica would have some minor issues going forward and unfortunately, that pesty GVHD is back. We began noticing that her skin was getting worse about a week ago, after we discontinued one of the medications. Sure enough, that was enough to allow the GVH to come back. We saw Dr. Taylor today and increased several medications to get it back under control. She will be ok, but this is something she may likely deal with for a very long time.

Otherwise, things are going very well. Next week Erica will go to physical therapy at the PT facility. It is built for childen so there will a lot of things for her to play on and explore. We are very excited to see how she does.

The growth hormone issue is still up in the air. Erica will have a test in two weeks that will give us a very good idea of IF and How Much hormone she will need.

In other news . . . Light the Night is September 27th! We are very excited for the event! Also, next month is my 1/2 marathon which I will run with our friend Emily. If anybody reading this is running the Nike, please post a comment! We'll look for you on the run!

Thanks again for your continued prayers. This is a sensitive time as we approach the anniversary of Erica's relapse. This is also a beautiful time as we are also mindful of what she has overcome and the life she has ahead of her! Watch out world! as Erica says, "love, love, love".
Amen

Cousin Geoff finishes Pacific Grove Triathlon

2008-09-15T16:08:00.001-07:00

Dear Friends:

Saturday was my first Triathlon since college & the first one with an ocean swim. Took Friday off to prepare and round up the gear and food needed for one of these things. I think it would take less stuff to mount a north pole expedition. Bike stuff, running stuff, swim stuff. Filled up the whole minivan.

Drove down to Pacific Grove in the early afternoon for the mandatory "packet pick-up" where they give you your bib number and a bag full of more stuff. Met some nice people checking out the swim course. I felt pretty well prepared since I had trained on the course a couple months ago with my friend Robbie. This time however, you could see exactly how far you had to swim since they had set out very large bright orange inflatable buoys in Lover's Cove. It was hard to believe you had to go twice around to make up the 1.5km. That was a little worrisome. It made me realize my practice swims of 20 to 30 minutes were on the short side.

Headed back north to Marina to Robbie's house. After a long week of teaching middle-schoolers, Rob likes to go for a Friday evening mtn. bike ride on the former Fort Ord property. Lots of sandy single track and fire roads. He promised it would be nice and easy. I figured it would keep me loose and relaxed for the big day on Saturday. We ate a big pasta dinner and headed out at about 7:00PM for the 1 hour ride. About 1/2 hour into it, I realized I should be in bed sleeping after a long day. But the scenery was so great and Rob was so happy to be out and about, I really got into it. We saw a rabbit and two deer before it got dark and I started crashing in the soft sand. When you don't see it coming, it tends to grab your front wheel and knock you down pretty quick. In any case, we made it home without injury by about 8:30PM. Lights out and night night after that.

Woke up before the alarm clock at 5:00AM wide awake ready to roll. Loaded the bike into Rob's truck and headed out in the pre-dawn darkness. Mentally going over all the stuff I planned to use and wondering what I was missing. I think a checklist would help. We pulled into town about 6:30AM and joined the milling masses of multi-sport participants. Did a token amount of stretching, mostly pre-occupied checking out all the triathlon bikes. I realized I was the only one riding a road bike with shifters on the down tube. Oh well, at least I had my clip on aero-bars and I wasn't riding a mtn. bike!

Rob left to go surfing and said he would be back in time to see me finish the run and get some pictures. As I was setting up my transition station and getting my wetsuit on, I heard the announcer say that the Men 35-39 better get out of the water from their warm-ups and move to the starting line because it was going to start in 4 minutes. Well that was a shock! I quit my dilly-dallying and hurried up with earplugs, caps, goggles and hurried down the stairs to the inflatable arch that marked the start line. About 100 powder-blue capped 35 to 39 years old packed in ready to go. I moved to the rear of the pack and could not believe that this thing was about to start. I said out loud to myself "OK, I guess I'm really going to do this thing!"

They said "Go!" or something like that and everyone ran into the water. Luckily I was at the back so no one swam over me. The swim was not too bad because the water was very smooth and the kelp was not too thick for most of the route. Some guy grapped my ankle once but quickly let go. The second lap was easier than the first and my total swim time was 39 min. 37 sec.

Ran out of the water and up the steps to the park where the transition area was. Headed straight to my bike and yanked off the wet-suit and put on my socks, sunglasses and helmet and ran to the "bike out" chute. Transition time (T1) was 2 min. 17 sec.

Hopped on the bike and tried to cinch my shoes but realized one of the straps had come out of the little black latch thingy. I had put a safety pin in there to prevent that from happening, but now it was back-firing. I tried to get it thru but the safety pin wouldn't let it. I pulled on the safety pin and cut my finger, some blood starting to squirt around. They were numb so I didn't feel it. Decided to stop, get off and deal with it. Once that was over, tried to get the legs warmed up. They felt like they were still in the water. Feet and legs kind of numb. First lap spent basically just trying to warm up.

The bike ride was interesting because no matter how fast I tried to go, I would still get passed like I was standing still. They would come up behind you making a loud whoosh-whoosh noise from the solid aero rear wheels. It was like being passed by cars on the freeway. They write your age on your left calf so that you can see at a glance how miserably you are getting pummelled by people both younger and older than yourself. Whoever thought of that is an evil genius. I got passed by guys in their 40's, guys in their 50's and even one guy who was 70! I told myself it was because they had $5,000 bikes and that they were probably on their first lap as the older guys started later. This was my coping mechanism.

Finally, after four long windy laps along the ocean front road, the bike portion came to a merciful end after 1 hour 22 minutes.

T2 took 2 minutes 10 seconds after some confusion on my part about where you are supposed to actually get off the bike. I think I got off too soon.

The run was tough. The legs were declaring indendence from the brain and deciding to do their own thing. I decided to concentrate on the arms. The arms were great, they did exactly as they were told. I was swinging my arms real fast. From the waist up, I was sprinting the whole time, below the waist, I was going pretty slow.

Some lower back pain was a unique feeling, started to understand why the Campbell Tri Team focuses on all that "core work". My core was shot and my right foot felt like it was on fire. I just thought of ERICA FAITH and all she has been through and realized my pain was insignificant.

This was my thought as I ran up the hill towards the finish line. The run took 52 min. 3 sec.

Rob, his wife Cher and their two little girls were there with pom-poms cheering me on which was a great highlight to the morning. Heather, my wife was incredible, giving me a pass for nearly the whole weekend! Thanks Heather! I love you!

Total time was 2:58:24, just barely making my 3 hour goal. Thank you for all your love and support! Stay tuned for the next Erica Faith Fund challenge event.

Yours,
Geoff Bradley

It's been awhile

2008-09-03T14:14:00.000-07:00

I just haven't felt like posting these past couple of weeks. I spoke at the Keaton Raphael Memorial golf tournament and then just fell into a funk about the question, "what do people really want to know". I spoke a lot about hope and the support we have received but when all was said and done I wondered . . . what about the hell that Erica has been through, what about the sleepless nights and tears and fear . . . do people want to know about that too? Well, if you have been reading this blog, then you have heard it ALL, I just wanted you to know where I have been. I came up with this all encapsulating thought, that this has been the most painful experience of my life. It has also been the most blessed. It is also the most frightening. It is a life altering, priority aligning, pain inducing, uncontrollable journey.

I've been writing in my journal, which has been appropriate and now I am back. So, how is Erica doing? She is doing really well. We think that we just might be experiencing some "normal" two year old behaviors . . . which I guess we're thankful for . . . if you can be thankful for two-year old behavior!! She is very active, walking everywhere on her own; even trying to run. (her feet go at about the same pace but she pumps her arms really hard! classic). Tomorrow is the next doctors appointment. We are really very eager to hear from her endocrinologist who recently took her blood to test for her growth hormones. Also, we continue to evaluate her skin and her blood-sugar issues. But, all in all, we are enjoying our time outside and we have been out to two restaurants with her, we're getting more relaxed . . . it's nice.

A big event coming up is LIGHT THE NIGHT 2008!
Erica is one of the honorees this year as they celebrate the 10th anniversary of the event.
September 27th at the California State Capitol. Activities start at 6:00 PM and the walk starts at 7:30 PM.
Please join us. All you need to do is register:
REGISTER FOR LIGHT THE NIGHT

Meds Go Down

2008-08-21T09:34:00.001-07:00

So happy to report that the spreadsheet of medications is shrinking! As of this week we were able to take two medications off of the list; cyclosporin and the blood pressure med. This takes us down to six doses a day!

Now for the frustrating news, because the steroids have gone down the issue of the blood sugars has come back up. The high dose of steroids was helping to keep her blood sugar where it needed to be, so without that "help" the numbers don't look as good. We are keeping a close eye on it and testing her, in the am, every few days. We have an appointment with the endocrinologist in two weeks. More to come on that.

Erica went to Luci's birthday party yesterday and it was such a special moment! I loved seeing her play with the other kids, she was so sweet and loving to the other kids. When we all sat down to eat she folded her hands and made us all pray together! I will post pictures from the party soon.

That is the quick update for now. We are all going to the Keaton Raphael Memorial Golf Tournament Luncheon tomorrow where I will have the opportunity to speak about our journey and thank everyone for being involved with this amazing organization.

Love and Gratitude!

Little Things

2008-08-15T14:00:00.000-07:00

It has been nice to leave Erica's birthday blog up for awhile, almost like a long pause, it has been a time of celebration.

In these last couple of weeks we have been silently dealing with a few little things related to Erica's health. First, there is a question about her blood counts from a couple of weeks ago. Her white blood count, hemoglobin and platelet count all dropped. Now, this is what happens, naturally, in a body when there is a viral infection, except that Erica has been asymptomatic. So, we have gone back to weekly counts to track the trend. Last Monday the counts went up, by a small amount. The next blood test is on Monday. Ok, so then we have her skin. She has what appears to be GVHD of the skin again. It is only visible on her legs and so we are back to twice daily topical treatments. The GVHD is just something that we need to control and eventually it will subside and/or we will just continue topical treatments.

On a very positive note, and yet another reason to celebrate . . . Erica has been out and about! She got the green light to be outside for about an hour each day, without her mask on! (Of course she wonders, "where is my mask?" but is perfectly ok without it). She likes to be in the front yard where she can see the kids playing across the street. They all run over to the sidewalk, careful not to get too close, and they wave and say "hi" to her. It is a sight to behold.

Next week, Erica will go to her first birthday party. Her friend, Luci, is turning two and she is have a party with three of her good friends. I have Luci's present wrapped and Erica is barely grasping the fact that these things called "presents" can actually be given to someone other than her! And so begin the lessons of life!

We are still balancing all of it, the joys and the fears. Erica is feeling really well and that makes the balancing act easier. We see this little girl laughing and learning and it is almost surreal; it just seems like such a gift.

Happy Birthday Erica!

2008-08-03T21:30:00.000-07:00

What a wonderful day! Erica's birthday started off bright and early, believe me, she knew it was her special day. She put on her birthday dress after breakfast and she felt like a princess . . . I could tell. At about 10:00, we had all the grandparents, God moms and Erica's best friend Luci over for a little party. Erica did so well with all of the attention. I loved seeing her with Luci; it has been almost a year since she has even been able to play with another child. They did so well and interacted like it was old times (back when they were 1)!

One story I just have to share is about yesterday afternoon. Our neighbors got together with their children (making a total of 5) and called us to tell us to have Erica put her mask on. About five minutes later, they came to the door with 24 balloons and about 5 big, colorful, beach balls and sang the "Happy Birthday" song to Erica. It was the sweetest thing ever . . . Erica just staring out at these sweet people, in awe of all the balloons, just trying to take it all in. People are so good.

Between yesterday and today, we are once again reminded of the love the surrounds us. Cards, phone calls, hugs . . . this little girl has touched so many lives in her two years. I told her tonight as I was putting her to bed, just how proud I am of her . . . and in that moment I literally felt my heart overflow.

More to come on her birthday and certainly more photos; but it you want a sneak peak, I added photos of the big day at the end of the slide show!
Love, Love, Love

Almost 2

2008-07-28T10:55:00.000-07:00

Erica's second birthday is on August 3rd. Hardly seems like it could be two years and at the same time, seems like ten. Almost twenty months since Erica's diagnosis. I just added the slide show to the bar on the right side of this page, a recap of Erica's life, so far (there is music too). It is amazing to look back at all of the holidays that we spent in the hospital and yet, all of the fun days we had outside, just enjoying the times when Erica felt well. Yes, I am still in the midst of processing everything that has happened . . . but that's just it, right? a process.

Erica continues to do great. She is getting more and more confident in her walking abilities. Her meds continue to go down and so does her weight. Her height, on the other hand, goes UP. I am going to call her endocrinologist today to tell him that Erica has grown 2.5 inches since the transplant. This was certainly not expected, so we are very excited. We should know in about three months what the plans are for growth hormones. Is it possible that she would not need any? We'll see.

Thank you for checking in. The comments on the last blog were so touching, a true gift to our family. Thank you for your prayers. We are strengthened by your love.

Unique Times

2008-07-18T14:16:00.000-07:00

There have been a lot of thoughts swimming around in my head lately; things I wanted to share and things I wanted to document. Here it goes . . .

Where are we at with Erica's treatment/recovery?
Erica is almost 6 months post transplant. She is currently taking 6 medications per day (12 doses). The medications consist of anti-rejection, steroids, anti-biotic, blood pressure, and anti-viral meds. Every day we flush her broviac lines and change the dressing on her broviac site. We are not certain how much longer she will have the broviac lines; there seems to be a lot of superstition about that in the hospital world. Erica has speech and physical therapy every week and she seems to be making good progress. We have recently moved from weekly physician appointments to once per month. I know that I post a lot of good news . . . and it is, good news. And, it is still time consuming and heavy and everyday I still pin her broviac lines to her onesie and wonder~when will this be over?

What are the mommy and daddy up to?
Bob and I are doing well. Bob is working and with a home office, he is able to see Erica a lot. He joins in on the physical therapy sessions and goes to clinic visits with us when he can. He may not be running the Nike 1/2 marathon, since he did not receive a number during the race lottery. Over 80k people went after 30k spots! I am going to go for it, my runs have been slow but I am trying to add distance at this point. I love the exercise and the chance to be outdoors. Three weeks ago I became a working mom; I joined a start up company called, MealWell (www.mealwell.com). We are building an employee wellness program that includes this great on-line nutrition/meal-planning tool along with fitness programs and wellness coaching. I am very excited about it. I'll be working four days per week, which is great.

So there are new transitions taking place and at the same time . . .

How does it feel?
There is a very unique and bizarre feeling about this point in time. Personally, I am very sensitive about what we have been through. In the midst of it all I would allow people to draw parallels to their life and their experiences just so that I could feel connected, but now I am more guarded, feeling like I can barely relate and understand what we just went though, how could anyone else? My daughter's life was questionable, the statistics were not in her favor, and the transplant expounded those odds but we still had to move forward. We just did that and still I am in awe of the situation. But being in this unique place, we are surrounded by other families doing the same thing, making even more difficult decisions, watching their son or daughter in pain.

I think it will be a very long time, many years, before we feel like this is over. Erica's relapse last October was absolutely the hardest thing we have ever gone through, it was crushing. So, perhaps, out of self-protection, we just cherish all of the wonderful things that are happening in Erica's life right now. And do we have hopes and dreams and plans for her? Absolutely! I am just trying to articulate this very sensitive space, this moment in time is not like January/Transplant or December 2006/Diagnosis, it is different and comes with its own set of emotions.

Grateful?
Absolutely. Thank you for all of the ways in which you have supported our family. Please continue to keep us in your prayers. We need peace and we need to be free from fear; we need to give ourselves permission to rejoice in Erica's spunk and development and health!

Love, love, love!

Guess Who's Walking?

2008-07-12T17:42:00.000-07:00

That's right, Miss Erica took her first steps on July 10th! And then today, she looked like she was ready to sign up for the AVON 3-day Walk for a Cure! We are beaming . . . it's one thing to see her blood counts improving and medication being reduced but it's an entirely different feeling to see her developing daily, with an energy level that "they" said may never exist. It's three weeks until her 2nd birthday and now I can admit that I have been praying that she walk before she turns two. I can't explain exactly what that means to me except to say that, "perhaps you can understand."

I am trying to figure out how to download the video onto blogspot so that you can all see her strutting her stuff! Stay tuned. We are so excited!

Thank you, Ms. Sheryl, for all of the awesome physical therapy!

Love.

My cousin is going All Out!

2008-07-09T21:24:00.000-07:00

From Cousin Geoff...

Well, it was such a fun & rewarding experience running the marathon and raising money for the Erica Fund, I think I am hooked now. See http://ericalivesey.blogspot.com/ for updates on my cousin Erica and her parents Bob & Megan.

I have come up with another chance to raise money for this great cause and would like to make it interesting for prospective donors. Thank you for all of your support and please don't hesitate to make offers on how to do that!

I have signed up for the Wharf to Wharf on July 27th in Santa Cruz. This is a 10K that I have done before and my best time is 48 minutes, 20 seconds.

Also the Dammit Run in Los Gatos on August 3rd. This is a very challenging 5 mile race with lots of very steep uphill portions, my personal best is 40 minutes, 58 seconds.

And finally the Pacific Grove Triathalon on Sept. 13th. This is an Olympic distance event (1.5k ocean swim, 40k bike and 10K run). I'm not much of a swimmer so this will be a very challenging event for me.

My goal is to finish the first two faster than before and to finish the triathalon!

Thanks for your support! I have a goal of raising $10,000 for the Erica Faith Livesey Fund and $3,070 has already been raised. All proceeds to go The Leukemia & Lymphoma Society.

To support Geoff, please go to-- http://www.active.com/donate/ltnSacram/ericafaith

4th of July

2008-07-03T20:52:00.000-07:00

Happy 4th of July!

We look forward to family BBQs and swim parties in the years to come; this year we will enjoy our day inside . . . maybe allowing Erica to stay up and watch the fireworks shows on TV.

Erica's blood counts were good this week, still improving. The only bummer was the re-occurrence of C-diff. This is the intestinal infection that she has had over and over again throughout the last year. So we added another 4 doses of medication to our day. She doesn't seem to be bothered at all, rather, more energetic with every sunrise.

Her real hair is coming in and the "cyclosporin" hair is starting to go away. She still has the hair on her face and back but I can tell that it is thinning. The new hair on her head is lighter and has quite the wave to it! I've always said that HAIR is such a symbol of cancer, the way it comes and goes, depending on the treatment. God willing . . . this hair is here to stay!

Miss Erica

2008-06-25T21:45:00.000-07:00

She is amazing. Is it ok that I say that? She is feeling better everyday, she tells us so. We are so proud of her . . . I just want to share a few things about Erica.
Right now is a time when we are reliving all of her "firsts". She is pushing her scooter and pulling herself to stand, she is trying to balance on her own and she is saying new words . . . again.
The meds have held steady for the past couple of weeks as her skin continues to improve. She likes having the cream rubbed onto her skin and she still takes her "buggies" without a second thought. She doesn't miss a thing and we are amazed everyday with her progress and her spirit. She is super funny and very loving. If either of us tells her that we are tired, she'll go get her doggy and give him to us. (Of course if your tired, you must need Doggy). Being at home with her is going really well and we have the help of my mom and our new friend, Lindsay.
Thank you for your continued prayers.

The Faith Fairy

2008-06-20T20:10:00.001-07:00

Who is the Faith Fairy?

For well over a year now, we have been visited by The Faith Fairy, every other month or so. We will come home or go out for the mail, and there it is, a package on the driveway. Every package has a theme, depending on the month, and in the bag is a poem about how The Fairy came to visit, with full understanding of how we are all doing (based on the latest blog), and constant reminders that God is with us. There is always a little gift for Erica and then a couple of items for Bob and I. The poem is fun and compassionate and we are always left saying. "Who is The Faith Fairy?"

Faith Fairy, we understand if you chose to stay anonymous, but we wanted you to know that we are very grateful for your creativity and generosity. Erica loves the new Elephant Game and we have been saving all of the poems to share with her one day.
~~~~~
Do you know how GOOD people are? I have said, many times, along this journey, that we have seen the good in people and we have seen the ways in which God works through people. Today I received a gift certificate from someone I've only met once, she is a member of our church. Last week we received a donation and letter from the grandmother of a little boy who finished his chemotherapy last year. My point is that these are people that have only been brought into our lives because of what Erica has endured and they have been moved to reach out to us. Ill admit, it is overwhelming at times, my automatic reaction is, "how can we return the favor? how do we give back?" And then I remember the whole "Pay it Forward" approach. When Erica is better, we will have a whole new appreciation for ways in which one person or one family can make a difference in the life or lives of others. The true intention of giving is realized through simple acts of kindness. We could be someone else's Faith Fairy.

I sit here and hope that this message is not misconstrued . . . I just want to say Thank You, to everyone who has reached out to us. You have made a difference in our lives and you have touched our hearts and you have renewed our spirits. Most of all, we will do things differently in the future because you have shown us what it means to give . . . from the heart.

We are so blessed, I sit here in tears. Did Erica know that she would have this kind of impact? . . . sometimes I look at her and I swear the answer to that question could be, "yes, indeed she did."

(issues with Kodak Easy Share . . . working on the photos . . .)

Could it be?

2008-06-17T09:33:00.000-07:00

The phone rang this morning and it was Kay, she had our chemistry results from yesterday. The first thing she said was that they looked good and then proceeded to read them off . . . AST, ALT, GGT, Albumin, etc. They were all good. At the end I said, "but what?" She said, "but nothing, that's it, they look good."

Could it be that simple? Her counts look good. Period. Her liver is almost back to normal, her kidneys are almost back to normal, her protein is a little bit high but getting better and we are just so blessed. I think that the "but what?" comes from the need to protect . . . it seems like there has always been a good news/bad news combo.

So today, the But What is this . . .

Erica is doing great! Her counts are good.

Today we go in for an infusion of immunoglobulin, it will take about 2.5 hours and then we are done for the week. We continue to treat her skin (which is also looking good) twice a day. Kay even told us that we might be able to go two weeks without a clinic appointment after today.

Praise God! Answered prayer is a beautiful thing!
Photos coming soon . . . I promise!

With love and gratitude!

Daily Improvements

2008-06-12T10:26:00.000-07:00

I've been doing a lot of reflecting lately. I've noticed that along this journey, when things went a week or more with some stability, I'd look back in awe. It is hard to believe what our family has been through and what Erica has endured but my reflection also, naturally, goes to the support we have had and the friends and family that have stood by our side. It was only last week, after writing the blog, that I read the blogs from earlier in the year . . . leading up to the transplant. I was overwhelmed by the intense faith; there was just no other way to go in to it. I suppose I'll always reflect on this time and I will continue to draw strength from the experience. I just hope that the experience ends, it's hard with situations like this, there is no clear moment of completion; there is only hope that things continue to improve.

Erica is doing well, really well. She is active and happy. The skin looks better, not 100%, but darn close. We go in to see the doc tomorrow and he'll continue to direct us on the meds/creams/etc. But as for the blood counts, the liver and kidneys seem to improve a little every week. Amen!

What is "normal"?

2008-06-04T19:59:00.000-07:00

Test results are in-- Erica's liver and kidney counts continue to improve and the HUS seems to be going away. The GVHD is still present, a little worse today, but we have a new topical medication that we will start tomorrow. We will need to cover her in the cream almost every 2 hours, alternating between this new cream and the steroid cream. Labor intensive but worth it, the goal is to keep the oral medication where they are . . . we can't afford to increase them.

This is an interesting period of time. We are done with chemo, the transplant has taken place, over 100 days of healing and still, she is monitored daily for changes, we have weekly doctor visits, twice weekly lab tests and countless medications. So we still take things a day at a time. For instance, we had to run to the pharmacy last night for an antibiotic because her urine test showed signs of infection. This process has a way of keeping you right smack in the moment. When I let go of all the questions, ("what will life be like?", "will I go back to work full time?", "who will watch Erica?", "what if . . .?") and when I remind myself that we are still taking it a day at a time, that is when I feel at peace. Through this journey we have learned, intimately, that God is in control here. So, this is our "normal", ever shifting, ever unfolding. We have become more faithful and therefore more flexible, so . . . we'll see what tomorrow holds.

Good News/Bad News

2008-05-28T11:45:00.000-07:00

Which one would you like to hear first?

The Good News is that Erica's liver and kidney counts are improving. For the last two weeks, her kidney/protein ratio has dropped by 50% which means that being off of the Rapamune (med) has significantly helped. Erica has grown an inch and a half since the transplant and she is slimming down a little bit every day. Because of this, she is moving around again, pushing her scooter and playing in her "house". Every day is a blessing!

The Bad News is that the GVHD has returned to her skin. We were heart broken to see this as it typically means upping the steroids. We took her in yesterday to show Dr. Taylor and he confirmed that it was GVHD, however, he does not want to increase medication right away. We are going to a topical steroid, 3 times per day for two weeks. I would much rather do the topical versus the oral, she has made so much progress, I can't imagine going in reverse.

We are doing ok with the news. Dr. Taylor assured us that we need not assume that this skin GVHD is chronic. This could mean that her body was exposed to something that got her immune system geared up and therefore the flair up in GVH.

It's just hard to admit that we are still on the roller coaster . . . but we are and bumps are expected. Overall, she is doing beautifully and we thank you for all of the prayers. She is healing and growing and laughing . . . we couldn't ask for more.

Take 2

2008-05-21T09:02:00.000-07:00

Ok, so maybe she isn't quite done with platelet transfusions. Last weekend, while visiting Nana's house, Nana noticed little dots of bruising popping in several places on Erica's body. Bob and I were out of town but my mom and her dear friend, Barb, took care of things! After talking with Dr. Taylor, they packed Erica's things, took her to the hospital for a short-stay and got loaded up with platelets. Thank you mom and Barb!

I wanted to share some photos.

First, some proof that Erica really does read your cards! My friend, Kerri, sends Erica a card every week . . . Erica is now watching me go through the mail like, "where is my card?"

Some days are very busy with clinic visits, transfusions and home care. Here is a 'a day in the life of Erica Faith', it always amazing me the number of caring people that touch our lives. Here you will see Dr. Taylor, Melinda (our infusion room nurse and friend), Doreen (infusion room aide and dancing queen), and Colleen (our 'in-home' speech therapist).

Platelets

2008-05-13T19:07:00.000-07:00

Guess what? NO more platelet transfusions! WooHooo!

Wendy came to our home Monday morning and her platelet count was great. It has been consistently normal for about six days. Her last transfusion was on Friday and we had one scheduled for this Thursday but with Monday's count being so good, we're only going to draw labs on Thursday and meet with Dr. Taylor. Big prayers that the counts continue to be good!

Continue prayers for her kidneys, they still show some signs of strain. It may require that we drop one of the meds, but would rather not, given that the med is protecting her against other issues.

Erica has been very happy lately, lots of energy and increased mobility. The puffiness is decreasing a little bit every day and because of that, we see bigger eyes and a wider smile!

I'll post photos soon, you won't believe the difference.
Happy Belated Mother's Day! Moms are Amazing!

Progress Report & Event Details

2008-05-06T19:13:00.000-07:00

More and more smiles to report. Erica is definitely feeling better and the steroid dose continues to decrease. We went in for a platelet transfusion today and heard back on several test results. Erica's liver counts continue to improve, very slowly but steadily. Her red blood cell and platelet counts are also evening out and our prayer is that we are close to being done with HUS (hence, the platelet transfusions). On a frustrating note, the kidney function continues to show signs of distress and so we have once again, backed down on on the of the anti-rejection medications which is most likely the culprit.

Heads up on a great event . . . The Thanks Mom Bone Marrow Drive! I will be there as a volunteer and I hope to see you there! Spread the news and save a life!

Drive Details - Thanks Mom @ UCDavis Cancer Center

Telephone Number:
Drive Name:	(Bs)Thanks Mom UCDavis Cancer
Drive Location:	UCDavis Cancer Cente
Address:	4501 X Street
	Sacramento , CA 95817
Drive Date:	May 12 2008
Drive Time:	10:00AM - 2:00PM
Map:	View Map

What to expect

Joining the National Marrow Donor Program (NMDP) Registry is easy. Patients need donors who are between the ages of 18 and 60, meet the health guidelines and are willing to donate to any patient in need.

When you come to a donor drive, we will explain what it means to become a donor, help you understand your commitment, answer your questions and help you through the process.

During the Thanks Mom awareness and recruitment campaign (May 5 - 19, 2008), costs to join the Registry are covered by our generous partners and contributors--for the first 46,000 who join (36,000 at marrow drives).

All you need to do is:

Complete a registration form with contact information, health history questions and a signed agreement to join the NMDP Registry. To help you complete the form, bring along:

Personal identification (such as a driver's license or passport)
Contact information for two family members or friends who would know how to reach you in the future if your address changes.

Give either a swab of cheek cells or a blood sample so your tissue type can be tested.

That's it! Your tissue type is then added to the NMDP Registry. Doctors search our Registry when they need to find a donor for their patients.

Day 100

2008-05-01T19:37:00.000-07:00

Today is Day 100, a kind of milestone in this post-transplant journey. It means that the "acute" phase of the BMT is over and that for medical reporting purposes, Erica's transplant can be termed, "a success". The next 100 days are considered the "chronic" phase; a period of time where we certainly do not want to see any GVHD or other conditions that could be long term. Today we'll go to the infusion room for a platelet transfusion and a meeting with Dr. Taylor; he will document the 'Day 100' status and we'll do some "High 5's" for Erica and her progress!

Erica is feeling really well today! I can tell that the swelling is going down, her feet and calves were softer this morning and her eyes were wide and bright! She is definitely more vocal and energetic. She tried to crawl for the first time the other day . . . it brought tears of happiness to our eyes. Steroids went down a notch again yesterday~Amen!

Today I also want to share an essay that was written by our Niece, Emma. Emma is 13 years old and last November, she was given an assignment to write about her hero. She wrote about Erica. This essay captures so much about our journey: fear, faith, generosity and gratitude. She, not only, commends Erica for her strength but also the people who go out of their way to give back and make a difference! Enjoy! . . . .

Erica- My Hero and Cousin

by Emma Livesey

On August 3, 2006, Erica Faith was born. We thought that we had all of the time in the world to go to Sacramento and meet our new cousin. But on December 11, when Erica was about four months, we found out that we may never even meet her at all. Erica had been diagnosed with leukemia. I just remember my dad saying, “your cousin is very sick, Emmy.” It was one of the scariest sentences that I have ever heard. I couldn’t believe it at first. The feeling was almost indescribable; it was like I was watching myself in a bubble. It was one of those things that our minds and hearts don’t want to believe but you don’t really have a choice. I woke up the next morning thinking that I had dreamt it, but I knew it was real. I never cried though, I just couldn’t get it out. It was too hard.

I knew that my cousin was sick; I just didn’t believe that the disease would win the battle over her. But even so, I wondered, why us, why my cousin? I knew it was selfish, but I still just didn’t get it.

Erica started chemotherapy sometime after Christmas, about the time we went out to see her. Our cousin was in the hospital the first time we met her. Erica looked so lethargic in her mom’s arms, but there was still a twinkle in her eye, a will to persevere even when the odds were against her. I guess that’s part of the reason why I chose her to be my hero. She has taught our family to have faith and to believe. She has pain daily that I think only a superhuman could withstand, and here is little Erica Faith enduring all of it, giggling all of the while.

Erica represents selflessness; never asking questions like why me? Or feeling sorry for herself, she just keeps going. I know that she can’t talk much now, but it really shows through. My cousin also reminds me to ask the question, why not me? After being in remission for a couple of months, Erica has relapsed, and she needs a bone marrow transplant to survive. Which, as scary as it is, it is good to know that she has a whole army of people behind her, doctors, donors, and loved ones who have treated her, walked in benefits, and given marrow all in order for her to survive. This is simply because they asked the question why not me, why don’t I make the difference? People like the people at Benny’s Bakery, who just did a fundraiser called Cupcakes for a Cure, where 50 percent of the profit went to cancer research, they did that because they asked themselves that question, why not me? We can all gawk at the people who do things like this, but when are we going to ask our selves that oh-so powerful question? So I guess that it is just not just Erica that is my hero, it is everyone who has ever taken the step to change someone’s life.

Fun Photos

2008-04-28T20:39:00.000-07:00

It has been awhile since I've shared photos. To be honest, it is hard . . . our little cutie doesn't look like herself. But this is how it is now, and she won't be puffy and furry forever . . . so I thought I'd just share some of the fun times and recent infusion room photos. Erica has recently discovered that sunglasses are cool, so everyone should where them--all the time--even her dolls. I included a picture from Cabo (no more pinching myself, I was there and I can prove it!). We have great friends who get us out and about once in awhile and most recently, Bob and I got out for a night in San Francisco . . .we had a blast!

Strong and Brave

2008-04-24T22:18:00.000-07:00

Another drop in the dose of steroids today! We now look forward to Thursdays, waiting to get the call from Kay or Dr. Taylor, another 0.5ml drop! YES! Slowly but surely, we are creeping down and slowly but surely, Erica's little personality is coming back. I can see it more and more everyday, through the puffiness and hairy face, there she is . . . on her way back!

Other meds are dropping and her liver counts are inching back down as well. I can't quite keep track of the kidney issue, we are meeting with Dr. Taylor tomorrow . . . so more on that later. Tomorrow will be our third platelet transfusion of the week and we are keeping our fingers crossed that we can do less Infusion Room visits next week.

Erica had her physical therapy appointment today and I was so proud of her! The PT had her on the big therapy ball, rolling side to side and bouncing up and down. Erica was kicking her legs and patting her hands like it was a drum. I don't know if I've said much about the change in her gross motor skills but Erica hasn't pulled herself up or crawled in over a month. Her weight is just too much to carry and her feet and legs are so swollen that she can't even wear shoes. So to see her moving around and experiencing gravity was exciting to me. The PT said that there is no doubt that things will change when she begins loosing the weight (and I think we're close to seeing some changes in that department!).

It's been three months since the transplant; we did the GVHD thing, we have been on a medicine calendar that would make most heads spin . . . HUS and kidney function, platelet transfusions, and proteins. Post transplant has been difficult but it is all in the name of healing. Last weekend I spoke to several people who were hearing Erica's story for the first time and I was able to say, "my daughter HAD cancer" . . . and now it's gone. That was a relief (and it is still hard to hear myself say "daughter" and "cancer" in the same sentence).

Tonight we pray for Ellie, Emily and Sammie and all of the other kids who are fighting the big fight!
God Bless!

Rested and Tan

2008-04-22T10:56:00.000-07:00

Erica continues to go into the infusion room three times per week. While the main reason is to receive platelets, she has also needed proteins to help her kidneys. The kidneys hit the radar last week when we began to notice swelling around her eyes, in her feet and hands. After the urine test, the labs confirmed the her kidneys were releasing proteins. This further confirmed the need to taper off of the cyclosporine. So the meds continue to go down and we celebrate with every taper.

We can see some changes in her energy and behavior. She seems to be more vocal now which is fun and she is very animated when she plays. The physical and speech therapist come once a week and we are really enjoying that process as we learn new ways to assist in Erica's development. I think it is also nice to have consistent visitors . . . for Erica and for me!

Ok, so I am excited to tell you that I just got back from Cabo San Lucas. My friend, Chris, qualified for this trip through her work and she was able to bring a friend. She brought me! An all-expense paid trip to Cabo, 4 days and 3 nights, sun, spa and relaxation . . . how could I turn that down? It was fantastic; the resort was wonderful and the company was SO FUN! I was nervous in the days leading up to the trip, this was the first time that I have ever been away from Erica overnight. I think Bob was getting a little nervous too . . . but he did great! He had to take Erica to the hospital and there was even some concern that she would need to stay overnight for some observation of her kidney function, but luckily they were able to go home that night and then visit Nana's house the next day. I think Erica is now a "daddy's girl"! I am so happy that I was able to take the break, there were a few cathartic moments . . . but I needed them, it's hard to let down when I am home, there is just too much going on. We had a great time and I am so grateful to Chris for inviting me, I kept pinching myself and thinking, "Am I really here?"

I got home Sunday night and I brought Erica in to the infusion room at 9am Monday morning! Nothing like getting back into the swing of things. But, I am rested and tan . . . and that makes a difference!

We will go in on Wednesday and Friday of this week. No understanding, at this point, of when we will be able to stop with the transfusions. Prayers are for Erica's kidneys, that they are relieved by the proteins and medication taper; for her liver, that it begin to repair and for Erica's continued comfort and increased mobility.

Happy Birthday Bob!

Day 83

2008-04-15T11:08:00.000-07:00

Once again I am amazed by the support and love that surrounds us. Thank you for all of your kind and encouraging words and prayers.

We are doing better this week. We proactively scheduled three platelet transfusions this week so things should go more smoothly. Erica's medication doses are coming down (the ones the cause the liver toxicity, swelling, weight gain, and hair growth) and although we can't physically see any change, we know that it will reveal itself from the inside out. I look forward to the day that we look at her and see her comfortable in her own skin, moving and playing without pain or restriction.

We are getting closer and closer to being 100 days post transplant. 100 days is a huge milestone in the transplant journey. Many of the acute illnesses and side effects will take place within the first 100 days, after that, we won't expect any GVHD or increase in medications.

We are still required to be in the house at all times which can be hard on these beautiful days, but Bob and I get out at lease once a day and we have my mom, Nana, to thank for that. Nana comes over about three times per week and you should see Erica's face light up when she walks in the door.

Please pray for Erica's liver; her counts continue to show a great deal of toxicity. Please pray that the doses of medication to continue to taper down and as always, for her comfort.

Those Darn Platelets

2008-04-11T21:44:00.000-07:00

We have been going crazy this week trying to keep Erica's platelet levels up. On Wednesday she started bruising on her tummy and legs so we called her doctor and he had us pack our bags. She and I stayed on the 7th floor Wednesday night; her platelet transfusion was done around 1:30 AM and we were released at 9:30AM on Thursday.

Being back on the 7th floor was very difficult for me. When we got there, we went directly to our isolation room (we haven't been on the 7th floor since before her transplant). It was just Erica and I in the room, waiting for our nurse to come in and I just broke down in tears. "I don't want to be back here, we are done with this place, this floor, these rooms." I could not have predicted that I would be feeling this way, but it was so powerful. Every room has animals painted above the door; depending on what nursing station you're at, you will have different animals. When we got in the room, Erica (as she always does), pointed up to the bunnies, as if to acknowledge them and say 'hello'. All I could think is, "I hate those bunnies."

It's been nearly a year and a half; we've spent over 200 days in the hospital (short stays, long stays, infusion room and the ER), can you blame me for feeling this way?

We went back to the infusion room today, Erica had a three hour transfusion and then we came home. She should be set for the weekend. We will go back three times again next week. The prayer is that the HUS subsides.

This journey has been filled with its ups and downs, this has just been one of "those" weeks. I am just ready for Erica to be off of the steroids . . . I want my girl back.

Thank you for your continued prayers.

Back and Forth

2008-04-05T12:00:00.001-07:00

Thank you for all of your words of support and encouragement! We are so blessed to have such an amazing support system!

This week has been filled with ups and downs, we have been to the hospital three times for platelet transfusions and we will continue to go every other day next week. The reason that her system keeps loosing the platelets is because she has something doing on in her body called HUS. For once, there is something going on that I can't really explain! It tends to happen post transplant and it will correct itself over time. This is only dangerous in cases where Erica would bleed . . . hence the intensity of last week and the bleeding from the liver biopsy.

So we are back and forth to UCDMC and quite frankly, it is nice to get out of the house and Erica loves her time in the car. She is big into trees and flowers right now. She points to them and sniffs her nose and then says, "mmmm" (like, oh, those smell so good!). It's funny because we are looking at flowers in our back yard . . . from inside the house!

Personally it has taken this entire week to recover from last week. We were all very tired and with the blood counts continuing to look uncertain, there was just no ability to relax. I'll share that the main issue right now is getting off of two of her medications; the steroids and the cyclosporin. These are causing continued toxicity to the liver, as well as many other side effects. We dropped down the dose of steroids again this week and we are just praying that the GVHD stays at bay. Please pray that prayer with us!

Blessings to you!

The Full Story

2008-03-30T20:43:00.000-07:00

As I sit down to write about our hospital experience from this past week, I find that it is hard to come up with words that capture the escalation and intensity.

The plan was to "drop in" for a liver biopsy, get a platelet transfusion, stay for the night under observation and go home the next morning. The first red flag for me was when the doctor came in prior to the biopsy to tell me that this was a "high-risk" procedure and that I needed to be aware of this fact . . . that 5% of children, Erica's age, bleed internally after the biopsy. Ok, well, I knew that the biopsy was necessary and 5% was, well, 5%. We had beaten better odds before!

After the biopsy, I was called into the OR to comfort Erica as she woke up. My job was to keep her on her right side for two hours so that there would be internal pressure placed upon the liver to clot any bleeding. She did a great job with that and then we were taken back up to the 8th floor. Erica had a yogurt and some apple sauce and then wanted to lay down for another rest.

A couple of hours later, Erica got sick. As I was cleaning it up and washing her face, she starred at me and then I felt a rush of adrenaline. I asked her "are you ok?", she just starred at me. (If you know Erica, you know that she always responds to questions). I started to cry, because I knew . . . "you are bleeding, aren't you?" I noticed that her skin was very pale and I just knew it was bad. I called the nurse in and told her, as if I was the authority figure, "you need to take her blood now, we can't wait another hour". She was so respectful of my feelings, I told her that I would normally not approach her this way but that I knew she was bleeding inside. She took that blood and ordered it "Priority One" (faster than "stat"). Within 10 minutes she walked back in and said that Erica's hemoglobin was 6.6, less than half of what it was 5 hours prior. She told me that the Rapid Response Team would be in within two minutes and that she would need an emergency blood transfusion and ultrasound. Her blood pressure was dropping when the team came in, her belly girth had increase by 8cm. They needed to stabilize Erica; they gave her a good amount of fluid at a very fast rate to bring the heart rate up, then they started the blood and in the meantime, I called Bob to tell him what was going on . . . he was on the next flight home from LA.

Several doctors came in, the ultrasound was completed, there was a shift change with our nurses, and Erica was on several monitors . . . I was just trying to stay present. Things did calm down as her vitals were stablizing, the ultrasound showed that Erica's entire abdomen was filled with blood. Our nurse, Charlie, brought an amazing sense of peacefulness into our room and I finally took a deep breath.

Erica's pain was treated with morphine and she was most comfortable laying beside me. There were several doctors in the room that night but we were most happy to see Bob, he got in at 11pm. Charlie made Bob a bed in the family room down the hall and we all just tried to get a few hours of sleep.

Without going into all of the medical details I will tell you that everyone was scared; us, her doctors, the nurses. It continued for next 24 hours as well; labs were taken every three hours as the liver continued to ooze blood. We stayed a total of three nights and were released on Saturday afternoon.

Erica's doing well at home. She can sit up without pain and her little personality is back. The next blood draw is tomorrow morning, we are just hoping that the numbers look good.

Last but not least . . . the results of the biopsy! There was no detectable GVHD. The liver issues turned out to be a result of drug toxicity. This is great news because we can look at the drugs and perhaps replace the drug(s)that casue the issues. It means that the extent of her GVHD was in the skin and has already healed. The taper in the steroid medication has begun and if all goes well, the dose will continue to drop over the next few months.

Thank you for all of your prayers, we always feel completely surrounded by your love and support. Our little girl has been through so much, so much more than a baby should ever endure . . . her eyes told me that she wasn't ok that night, she knew things weren't right . . . I remembered that she looked at me that way on December 12, 2006.

Lord, please heal Erica's liver. Take the bruises and the pain away, bring her comfort and vitality. Lord, please allow for Erica's precious body to safely absorb the blood that now fills her abdomen and keep her safe from any additional complications. We pray for good blood and liver counts tomorrow and for continued strength for our family. Amen.

Biopsy Update

2008-03-27T15:42:00.000-07:00

Hi Everyone---Quick update from Krista on Meg & Bob's behalf. Meg & Bob don't have computer access in their hospital room, but promised a full update tomorrow.
In the meantime.....Erica had her biopsy yesterday morning about 10 am. By mid-afternoon, Megan noticed that Erica was in pain and pale. Megan asked for her blood counts to be taken asap and the results revealed that Erica had lost half of her blood from internal bleeding. Immediately, a response team came to Erica's room to help stabilize her. After much commotion, Erica was transfused and stabilized. She continues to be monitored--and is on a morphine drip to ease her pain. Megan and Bob are with Erica now and their hope is that they will be released tomorrow to go home. Erica is stable and they were able to complete the biopsy. Meg promises to post as soon as they are home.

Liver Biopsy

2008-03-25T19:59:00.000-07:00

We're off to the hospital tomorrow morning for the liver biopsy. We check in at 6AM and then Erica will receive a platelet transfusion. The surgery is schedule for 10:20AM.

This will, hopefully, be a quick procedure and an easy one night stay. On the bright side, we will get to see some of our great nurses and friends at the hospital. It's been two months since the transplant and of all reasons to be back in the hospital, this is an ok reason!

Please keep Erica in your thoughts and prayers. I hope to have some results before we leave on Thursday. The results that we want to see are GVHD related; we don't want any "surprise" diagnosis. If the GVHD is confirmed then there may be some medication changes but, all in all, it should subside just as it did on her skin.

Thank you for all of your love and support! Best wishes for a beautiful spring!

Happy Easter!

2008-03-23T21:07:00.000-07:00

The Liver-Part 3

2008-03-20T20:27:00.000-07:00

Huge bummer . . . the counts came back this afternoon and all three levels are elevated. The GGT was over 600 and the threshold for the liver biopsy was 500.

So the plan is to stay on top of the counts by getting a blood draws on Saturday as well as Monday. Most likely, Erica's biopsy will be on Tuesday or Wednesday with an overnight stay in the hospital. The reason for the biopsy is to confirm that this is liver GVHD and not any other type of liver problem . . . they just don't want to jump to any conclusions.

Erica seems to be feeling well, she was full of giggles today! The thing is, she just isn't herself. Poor girl has a HUGE tummy and her face is SO puffy. It is hard for her to breath, hence the blood pressure medication. And the other thing . . . the anti-rejection med is known to promote hair growth. Well, Erica has dark hair all over her body and it works overtime on the eyebrows. Oh, it all goes away when the meds stop and I am, by no means, worried about these things, I can just tell that she is uncomfortable. I look forward to the day when she is off of the steroids and is feeling comfortable in her own skin.

Prayers are for reduced liver enzymes, no more GVHD and for her comfort.

The Liver-Part 2

2008-03-17T18:08:00.001-07:00

Just a quick update:

Erica's blood counts were taken on Saturday and today, Monday. The results from Saturday were hard to hear, the liver chemistries had again doubled. I spoke to Dr. Taylor Saturday night and he projected increasing counts through the week and therefore opted look at the surgery schedule for Tuesday or Wednesday, pending the Monday counts.

Today's counts are mixed. Two of the three chemistries went down by about 10% and the third (GGT) and most important, went up a bit. So, I am now waiting to hear from Dr. Taylor to discuss, perhaps, the possibility of holding off on the biopsy. Hopefully, the decrease is a trend and by Thursday, all of the counts will have gone down . . . and we'll all take a deep breath!

I'll post again when I know more.

The Liver

2008-03-15T10:31:00.000-07:00

There are certain phone calls that force us into the moment; what ever else is going on at that time suddenly takes the back seat. Last week we got a voice mail from our nurse coordinator, her voice had a serious tone and she actually said that the blood counts didn't look good. She never says that! When we called back, she explained that Erica's liver counts were more than doubled what they've been in the last several weeks and that per her conversation with Dr. Taylor, this was almost certainly GVHD of the liver. These numbers have her moving from Level 1 to Level 2 GVHD (a more moderate form).

The nurse will come over today to draw blood again, the counts are expected to be even higher than Thursday. Dr. Taylor explained that in order to properly diagnose the GVHD, Erica will need to have a liver biopsy. This will require her to stay in the hospital for one night after her surgery center appointment. The major concern is bleeding and so they keep her over to monitor any sign of internal bleeding.

So the week ahead looks different than it did just 48 hours ago, but that is how this journey goes. We are concerned, but not overly anxious. This, like the skin GVH, is very common. By the way, her skin looks so much better, the itching has subsided and we expect her to be healed up within the next few days. The prayer now is that the liver GVH follows a normal course, that in a couple of weeks, it will return to normal. At the core of it all, the prayer is the Erica's new bone marrow relax into her body, that it learns that there is no need to attack this precious body, that it is at home!

Day 48

2008-03-11T20:50:00.000-07:00

Level 1, Stage 2 GVHD is still present. The rash has changed over time but it is still there, head to toe. There are a number of things that we are doing for the itching, so Erica is more comfortable now.

The weeks are still busy with home health and now speech and physical therapy. We also go to UCDMC for a visit with Dr. Taylor once a week. While the actual blood counts look good, our focus has shifted to the chemistry panel. This tells us where her body is deficient, how her liver is doing, how her kidneys are functioning, etc. Based on these results, medications get altered and then we wait for the next blood draw.

Personally, I am a little stuck between processing what we have just been through, living a day at a time, and being excited about our future. I was polishing our leather chair with a leather treatment last weekend and I began remembering how many times I held Erica while she vomited all over me . . . that was the chair I always breast-fed in and often times, the chemo just made her too sick, and she couldn't hold down her milk. Day after day this would happen, sometimes multiple times a day. Our minds are programed to move past the difficulties, sometimes blocking out those things that are most difficult. There have been chapters of this journey that are just that . . . too difficult. So then I spend some time in the day-to-day and Bob and I will talk about future vacation plans . . . wondering what type of adventures Erica will most enjoy! Perhaps I am explaining a bit of a dance~accepting what has happened (the music), being present (knowing the steps) and looking toward the sun (chin up). More to come on that . . .

Goodnight.

Dermatol-itchy

2008-03-04T21:14:00.000-08:00

Monday was a tough day. We started out with a fairly wide open day, just a visit from our home health nurse and a 'play-date' with Nana. Well, when Wendy got to our home, my chief concern was Erica's itchy, red skin . . . it quickly turned into her concern as well. She paged Dr. Taylor and before long we had orders to be in the Infusion Room by noon. So, when Nana got here, I told her that we had a "field trip" planned for the day. Poor Erica, so itchy and red!

Dr. Taylor examined Erica and let me tell you, the rash was all over her body with little raised bumps. He suspected more GVHD but because we started a new med and received two IV drugs last week, he referred us to the Dermatologist for a biopsy. A few hours later we were in the office of Dr. Mumm and she did a "punch biopsy" of Erica's back. After a couple of stitches we were on our way home.

Erica was so brave all day. She knew that everyone was looking at her skin and she would point to were it itched the most. I think she was happy that her skin was getting some attention . . . as though she knew that we would do our best to make it better quickly!

The report came back today which confirmed a Level One-Stage 2 GVHD. Basically this is the second skin reaction that she has had and "Level One" means that the GVHD has stayed in the skin versus the internal organs. Steroids are back up . . .way up and she is now taking another drug to further suppress the immune system until the skin is healed.

Do you love the picture? She is doing really well with her mask. "We go outside, we wear the mask. OK?", Erica nods, "ok!". She is a doll, an absolute joy to be around . . . even on steroids!

Angels

2008-03-01T21:19:00.000-08:00

These are the angels in Erica's room! Each one is from someone special and I like to think that each one represents a different element in Erica's life: hope, strength, courage, health, etc. The concept of angels is interesting to me, I've thought so much more about the angels that I know in heaven. Over the past year I have prayed more that I ever have before, but I also began recruiting help from the special people that have moved on from their life on earth, who are now in heaven. It is so different than prayer, I talk to my friend Shannon and her mom, Carol; to Dixie and my good friend Rudy; and to my Nana. It is like saying, "hey, I know you are up there, please give God a good word for us, I know that if you were here you would say special prayers for my little girl and I know that, even now, you are praying over us, crying tears for us, sad that we are going through this rough time but faithful that we will make it through. Thank you for the special person that you were to me in my life, and thank you for being a special angel to Erica". Yeah, I admit it, I really enjoy the access that I have had to these angels, these five are my five.

Writing this blog, it is hard not to think about what people, who are reading this blog, may think or imagine about our family or of me but I write from the heart and my motivation is Erica. I hope that someday this testimony is a gift for her.

I want to share some of my favorite stories . . . these are the ones I think about at night, the ones that make me smile. All of these stories are about children that pray for Erica. Reese is 3 and her mom and dad pray for Erica at night and if they stop the prayer without praying for Erica's donor, Reese will remind them, "what about the special donor?". Little Elliot is 5 and asked for a picture of Erica for her birthday so that she could see her face when she said her prayers at night. Blake is 4 and when he was sick last week his dad said prayers that his "bug" would go away and then said "amen", Blake said, "but dad, what about baby Erica's bug, it is taking longer to go away than my bug" (his dad got tears in his eyes), "yeah buddy, let's pray for Erica's bug too!". Our nieces, Emma, Sarah and Allison go to Erica's blog all the time and Sarah shows her friends at school . . . lately they have been brain storming about how Erica could swim this summer, even though she can't go outside. They came up with a blow up pool filled up with little plastic balls! Lauren and Jimmy say "God bless Erica" before dinner and get this . . . Bryce and Allison sent Erica the things that make them feel better when they are sick. Bryce sent some of his Pokeyman cards and Allison sent pink nail polish (because painting her nails always makes her feel better!, she is 5). These are my favorite stories and I am sure that I am forgetting some of them. These are too priceless not to share; these are our angels here on earth!

Erica is doing well. Her liver counts have stabilized and her steroid dose has gone down a little. She still has GVHD and her skin is still very itchy from the TBI. The other thing that she has going on is called HOS. Basically her system is shedding immature red blood cells, at a very fast rate. The concern is for her kidneys . . . can they process this waste, at this speed? So far, yes, her kidney function is good. The other concern is the red blood cells . . . is her marrow making enough mature red blood cells? So far, absolutely! Her red blood cell count has been that of a normal child, 11.0. She is doing great. What is happening in her body right now is all normal for a post-bone-marrow-transplant patient. Please pray that the HOS naturally goes away and that her liver and kidneys stay strong. Also, she is so itchy, pray for her comfort . . . or for more lotion. She signs to us that she would like lotion on her skin about ten times a day! Hey, whatever works!

Day 30

2008-02-22T17:03:00.000-08:00

We took Erica to the doc again on Thursday and unfortunately the blood tests showed that there is another area of GVHD popping up . . . in her liver. It is at the very lowest levels and we are able to treat it, in fact, the levels may be back down by Monday. The problem is that the treatment is higher doses of steroids and believe me, the side effects are raging! The "little misses" is very emotional, very mommy-needy, super hungry and very puffy! We know that this is the best treatment and of course, it is better to have the GVHD destroyed but it's still hard to see her so disturbed (especially after all that she has been through).

In the midst of it all, her counts continue to rise. On Thursday her white count was 8.0 and her ANC was 6400! I don't know how high these numbers go . . . really, what is "normal"? I remember when we were in the "maintenance phase" (before her relapse) and we would celebrate when her ANC was over 1500. So this is good news and we continue to receive confirmation that the new marrow is doing a beautiful job of engraftment. Today we drop from 13 daily doses of medication down to 8, it is always exciting when when we get to take a med off of the list.

This weekend is the Children's Miracle Network Radiothon in Sacramento. We participated last year as the radio stations set up shop on the 7th floor of UC Davis Children's Hospital. Our family spoke to The Eagle (96.9) and yesterday the radio host read an email that we sent in with the update on Erica's October relapse and January bone marrow transplant.

We didn't share this with The Eagle, but thought it was worth recording . . .Erica only says about three words, "mama, dada, and nana". But this past week she added a fourth . . . . "lasagna". I am not joking around here, she says, "la-nna-nna". Of course, she's on steroids and FOOD is her favorite topic so it is only appropriate that she throws out a word like "lasagna"! (and Thank You to our friends who brought us the lasagna~it was great!).

We are 30 days post transplant and relatively speaking, Erica is doing great! We will go to the hospital on Tuesday for some IV Antibiotics and a visit with Dr. Taylor. Our prayer is that the liver levels have dropped and that we can lower the dose of steroids as soon as possible.

GVHD

2008-02-20T20:14:00.000-08:00

Monday morning, Erica woke up with a rash that covered her face, head and neck . . . the first signs of GVHD. Graft versus Host Disease basically means that the "graft" (the new marrow) is attacking the "host" (in this case, Erica's body) because it is an immune system and attacking anything that is "foreign" is what it is supposed to do! The new marrow just doesn't feel at home quite yet and that is ok, it is right on schedule to pop up with a little 'home sickness'. Does that make sense? I've had a glass of wine . . . not a good time to be explaining a medical phenomenon.

Erica saw the doctor on Tuesday and they upped the steroid three fold for a short period of time. This should take care of the acute GVHD phase and God willing, that will be the last we see of it. In the meantime . . . she is on three times the steroids which is making her uncomfortable, hungry and very 'mommy-needy'.

Here is a fun note to share, Erica finally embraced the concept of the mask! I began explaining to her that if we go outside, she needs to wear the mask (I repeated this multiple times). Finally, she nodded her head like, "ok, I got it. let's do it!". So, the mask went on and we got in the car to go see the doc. We have another appointment tomorrow so we'll see how it goes but I considered it a victory (especially considering that the mask was still on her face when we got to UCDMD).

That is the update for now, we'll get her blood counts again tomorrow and we fully expect them to continue their climb!

Praying BIG

2008-02-16T12:44:00.000-08:00

It is hard to believe that we have been home for over a week. We are getting adjusted to life at home; it is a bit different given that Erica is home bound and unable to go outside. I can't just make a run to the store or go for a walk on these sunny days . . . but we can make the best of our indoor days. This weekend my goal is to build more of a schedule for our days, in between meds and home health appointments, we are going to have music time and "tunnel time", perhaps some art and story time too. A year seems like a long time right now, but before we know it . . . 2009!

Drum roll please . . . Erica's white count is 3.3 and her ANC is 2500! These are amazing numbers. Her actual immune system is still completely compromised but her new bone marrow is working, it is engrafted and we just think her donor must be quite the stud!

We have a bible verse on our fridge . . . my Auntie Pam sent it to us when Erica was first diagnosed, "Lord God! Behold, thou hast made the heavens and the earth and by thy great power and by thine outstretched arms, nothing is too difficult for thee."(Jer. 32:17). It is only recently that I read that and realize that in Erica's case, we asked for the biggest possible blessing, A MIRACLE! And that is what we received. So many times along the course of Erica's treatment we would pray for smaller blessings, like her liver counts and for her comfort but when it came time for the transplant we prayed for a miracle . . . it's ok to pray big, bigger than anything you think possible and in that, you realize that there is no prayer to big for God.

I only share this because there really is no other way to express where we're at right now. 99% of bone marrow transplant patients would still be in the hospital right now. Erica is home and there have been no fevers, no signs of GVHD and no other major complications. It truly is a miracle. And I believe it's because that is what we all asked for! Thank you for praying BIG!

Today, just as Dr. Taylor predicted, is six weeks post cranial radiation and there seems to be some fatigue setting in. It's 1:00 and Erica is now taking her second nap of the day. This should last for about a week and then she should be back to her energetic self. In general, BMT patients experience many periods of fatigue throughout their life, I guess it is one of the more chronic side effects of the transplant. And there are others . . . we'll deal with as they come.

Thank you for your comments; your words of encouragement mean so much to us. If you haven't already, please take 2 seconds to create an account and post a message!

The Team

2008-02-12T20:29:00.000-08:00

Being in the hospital, all you think about is home. Being home, these last few days, I've thought a lot about our time in the hospital.

When you are there as much as we have been, it becomes a very unique place filled with very special people. For instance, the cleaning crew . . . we have had the same rotation of cleaning staff throughout the past year. We know them by name and always thank them for the job that they do. In the BMT Unit we had the same lady almost every day; she took great pride in the fact that she was assigned to the BMTU as the rooms required extra TLC. Erica got to know her and they would blow kisses as she left every day.

With the nurses, it probably goes without saying, there is a very special bond. We were nervous about going up to the 8th floor after knowing all of Erica's nurses from the 7th floor. Plus, the 7th floor is all pediatrics where as the 8th floor was adult oncology and the BMT Unit was mostly adults. Our frets vanished quickly when we met our team of nurses on the 8th floor. From day 1, they were WITH Erica . . . her treatment plan, her ups and downs, her pain, her laughter, her "wheats", her weight, and her family. We hardly ever had to push a button to page them, they knew when the flush alarm was about to go off and they checked on us all the time, even when we were sleeping. Not only were they Erica's care team, they were my care team too. I tried to take photos of all of them, in the pics we have our primary nurse Barb, Megan, Denise (they were our day team) and then at night we had Karen, Connie (we'll get pics someday), and Charlie.

I have an overwhelming feeling of gratitude and respect for these people. I've been in the arena of healthcare for my entire career and never have I fully understood that nurses (the good ones) possessed such intensity, skill, and compassion. God has a special place in heaven for nurses; I'm convinced of it.

I've just thought a lot about how well things went at the hospital and how Erica's room had such great light and energy in it. Maybe it is because each person that walked in cared so much about our little girl.

We're at home now and things are going very well. Erica's white count is up to 2.1 and her ANC is 1300 . . . . a very long way from zero! They are still watching closely for signs of GVHD and kidney function. We were told today that at six weeks post cranial radiation is when a patient goes through an episode of intense fatigue for about 1 week. Erica will be at 6 weeks next week so we'll be watching for that . . . although we all know that Erica is writing her own book on this!

Prayers are for Erica's continued strength, a steady climb in her counts, no fever, good liver and kidney counts and days filled with love and laughter.

Home Sweet Home

2008-02-08T21:28:00.000-08:00

Yes! We are home and it feels great! Erica did not waste any time getting into the swing of things. She loves her new "kitchen" and her ol' fav' . . . the scooter. The "goodbyes" at UCDMC were very emotional. The docs and nurses had a 'Going Home' party for Erica; we sang and danced and they bought Erica a band of instruments (Erica's favorite is always the drums). We had cake and talked about how well Erica has done over the past year and a half. Being discharged 15 days post transplant is a UCDMC record for pediatrics. Dr. Taylor laughs at me when ever I bring that up . . . he thinks I am competitive . . . hee-hee!

So I just wanted to share some photos tonight. I will fill you in on the post-transplant stuff another day. Oh, but I must say . . . I forgot how nice it was to sleep through the night! Ahhh.

Going Home!

2008-02-06T17:35:00.000-08:00

Can you believe it? We are going home tomorrow. Erica's counts have continued to improve and she is meeting all of the requirements for discharge. My cheeks hurt from smiling so much, it is just so amazing that she has recovered from this stage of treatment so beautifully, or, "swimmingly" as Dr. Taylor would say.

Our home is ready for Erica's return . . . the house has been cleaned from corner to corner (thanks to our dear friends), the carpets have been cleaned, the rugs have been sent out for cleaning, bedding is changed and we have a big box of blue booties to cover our shoes when inside.

What does this all mean? Erica's new marrow has engrafted and it is beginning to produce all blood products. We were prepared to stay at the hospital for months because that is how long it normally takes for BMT recovery; largely do to the radiation and chemo. Thankfully, Erica recovered quickly. Now we look for signs of GVHD and infection; both are likely. We will see Dr. Taylor once per week for the next several weeks and Wendy, our home health nurse will resume visits twice per week. Erica will need to stay inside at ALL times for many, many months. She will not be able to be outdoors or around other kids for about one year. Soon, we will have speech and physical therapists at our home to work with Erica so that she can quickly catch up to appropriate developmental levels.

Dr. Taylor said to expect 1-5 hospitalizations over the next three months. Ok . . . but we'll shoot for NONE! So, the next chapter is yet to be written, we'll just continue to follow Erica's lead.

I read back over the last several blog entries last night and honestly, I don't think that I can fully embrace all that has transpired over the last few weeks. My mom and I were talking yesterday about how we just found the "emotional middle" and tried our hardest to stay right there . . . at all times. In order to find that middle ground, we had to come to accept the best and worst that could happen. I don't know that I'll ever be able to understand how I came to any terms of acceptance . . . with Erica's illness, her mortality, or the scope of possibilities that were laid before us. That must be something that is guided by faith.

For now, we celebrate! The nurses are planning a party (cake and all) for tomorrow! While they are all happy to see her doing so well, they will surely miss her sweet face, (the rest of the patients in the BMT unit are adults who don't take their meds quite as well as Erica!). Another phase completed, another deep breath, another step closer to a full recovery!

Thank you for your prayers, cards, emails, and well wishes. We could not do this without all of the love and support that surrounds us. I believe, beyond a shadow of doubt, that Erica is going home tomorrow (weeks ahead of schedule) because of the power of prayer.

Engraftment

2008-02-04T11:37:00.001-08:00

Erica is doing great, here are some pictures from her big 1.5 Birthday Party! Her white count was up again today, 0.5 and her ANC is 110. They took her off of the morphine and they dropped one of her blood pressure meds.
We are all amazed with her progress. Today Dr. Taylor said that we can officially called this Engraftment! It is happening, answered prayer!

Champagne

2008-02-03T11:24:00.000-08:00

It is hard to describe the feeling, I visualize it like champagne with a lid on it . . . energy, excitement, fun, celebration, yet contained. That is how I felt yesterday as we got the news that Erica's white count had gone from days of o.1 to 0.3. I know, it seems so small, but when it comes to blood counts it means that something is happening. Her ANC went from 0.02 to 0.07; something is definitely happening. I wanted to just break down and cry and then I thought about how sometimes there are blips in the lab or with the blood sample . . . hence the feeling of champagne with a lid on it.

As the day went on something shifted, Erica was not just playful and content but she was beeming with joy. She was vocalizing and laughing and moving, even standing in the crib. "This is it", I thought, "her new bone marrow is starting to work." And then, I just starred at her and she starred back at me with those wide open eyes and I said to her, "we get to keep you". That is when I exhaled for the first time in months. Day to day, I don't think I realized how scared I was because it was just that, day to day. Now, there is a calm about it all, a different type of confidence in her full recovery. Maybe, before, it was optimism and now I feel like God has placed His hand on my shoulder . . . she will be ok.

This morning her white blood cell count was 0.4 and her ANC is 110. Again, all positive signs! This is amazing, there is no way that I can express how amazing it is, this is only Day 11. Typically it takes 20-30 days to see any movement in the white count. Not only that, but her mouth sores are healing and she is eating, they have reduced her morphine by 1/2 and they expect to 1/2 it again today and still, no fever. Are we out of the woods? No, but we can see our way through.

Erica is 1 1/2 today. Nana planned a little half-birthday celebration for this afternoon . . . we will celebrate her 18 month milestone as well as the milestone of her cell production.

Doctors and nurses will temper our excitement, only out of protection. They will tell us that she could still get a fever/infection and that we really need to wait until there is a big spike in her ANC. This is also the time in which Graft Vs. Host Disease (GVHD) would kick in. That's ok, that is their job but I made the decision to share this amazing news because there are just too many bubbles in this champagne . . . I had to take the lid off.

Prayers . . . first Rejoice in this news! Pray for minimal GVHD, no fever, continued production of neutraphills, stability of her blood pressure, and comfort without the morphine.

Rejoice!

The Bili

2008-02-02T16:14:00.000-08:00

Just a quick post to report that the bilirubin returned to a normal range this morning. This is great news and indicates that the spike was more connected to the last blood transfusion versus any potential liver disease. Yeah!!
Today is a good day. The doctors decided to reduce the level of pain medication because she is in such good spirits. More to report later. Thank you for all of the prayers for a healthy liver!

Pain Meds to the Rescue

2008-01-31T16:52:00.001-08:00

Yeah for pain medication. The morphine drip started late last night and at 4AM, Erica was ready to play. I had to break the bad news to her that "play time" would need to wait for another two hours. She negotiated, and we were playing with stickers at 5:30AM.

Today was good just for the fact that she was not in pain. She ate 1/2 of her yogurt and was able to keep it down. The docs were very happy about that. Her favorite new game is "Where is pointer" which must be played with Nana and Erica is in charge of which colors go on the "pointer" finger. The world record was broken yesterday as Nana sat and sang for two and a half hours!

The concern about her liver has popped back up as her bilirubin is creeping up. We'll know more tomorrow, please pray for normal results!

A Period of Discomfort

2008-01-30T14:30:00.000-08:00

I'll start by saying that this is all expected . . . Erica has more and more side effects of the radiation and chemo, only exacerbated by the extremely low blood counts. She now has sores inside her mouth, these also exist down her throat and into her stomach. Needless to say, she is not eating and even though we understand why, it is hard. Erica's eyes are also really bothering her, she was itching them constantly, causing bruising, but we started her on an ointment that goes onto and in her eyes every couple of hours. It seems like this ointment has helped a bit. More than anything, she is comforted by the morphine. This afternoon they will start her on a constant morphine drip.

Again, it is all expected . . . and then some. So we're here, in the thick of it! I think that many people may think that the actual transplant is the big hurdle but in reality, it is the recovery process. So far, no fever, although that is also expected. A little fever would signify a little GVHD (graft versus host disease) and this is a good thing as it represents a successful transplant and an even more serious attack on the the leukemia cells (if there are any left).

Prayers are for her eyes, that they stop itching; for her mouth and throat, that she is able to be comforted; for her engraftment, that it happens very soon.

God Bless.

Day 5

2008-01-28T18:48:00.000-08:00

Today things shifted a bit, Erica is not feeling well and the energy in the room has declined accordingly. This is the type of shift that we all expected, it is just hard to see. She will play for about an hour and then nap for an hour. Today she ate about 1/3 of a yogurt and about 5 bites of cheese. The dietitian told us to push protein calories as much as possible.

No matter how many times I've been told that she will get sick, it's still hard. She's already lost some weight and the skin around her eyes is red . . . but her baby blues are still charged with spirit and joy.

Today I was talking with a friend about what life would be like when Erica is all better. I can only imagine watching her run with other kids and, heaven forbid, getting dirty. I can only imagine seeing her little body without tubes coming from her chest or waking up in the morning without taking her temperature or checking her blood sugar. I know that there will be other meds, hormone injections and doctors visits, but there will also be more living and less worry, more good days and less bad ones. I am not the one with cancer here, but I can imagine that this type of thought process goes on with other patients . . . the wonderment of life without the disease.

I am a big believer in creating the vision you want for your life and holding that vision as a motivating factor in your behavior and decision making. I hold a vision for our family; it is filled with play and exploration, learning, love and faith. In many ways, however, we will never be far from this experience, at least I hope not, because of all things . . . THIS is what opened our eyes to the power of prayer, to the generosity of the human spirit, to the wonderment of the medical sciences, to the strength of a child, to the sanctity of friendship, to the devotion of family and to the absolute possibility of miracles. I don't want to be rid of the many lessons cancer has revealed to us, just the cancer.