A Final Note

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

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

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

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

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

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

Grand Finale Information