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.
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.
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?".
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.
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.
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!
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.
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...
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!
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.
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
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.
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.
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.
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.
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.
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.
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!
Erica now walks up to people and lifts her shirt up . . . (watch out MardiGras), 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
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.
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
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