Saturday, August 23, 2014

Day +365: One Year - A Celebration of Life

One year. A year like no other. Looking back on the past year, it feels like it can be divided by all the challenges Ezra has faced. First, round two of high dose chemo, transplant, engraftment and the unspeakable suffering of that time. Next, home and the horrific pain that Ezra suffered, which made him cry all day, as he sat covered in hot packs in a fog from pain medication. Then, just as the pain resolved, came skin GVHD and the round of immune-suppressing steroids used to stop it. Next up, parainfluenza virus and liver issues. And just when he had gotten over the virus and stopped the steroids, the auto-antibodies against his red blood cells, platelets and neutrophils started their vicious attack. Back in the hospital for the month of March with this frightening turn of events, a problem that continues to plague him and drugs that continue to prevent his new immune system from growing.

We still do not know how we ever mustered the strength to walk our baby back into the hospital and subject him once again to the nightmare of transplant. It was solely our belief that transplant was his best chance at a long, healthy life. And that we owed it to him to try and give him that life.

While there is much of transplant that we try not to remember, there is too much that we will never forget. The moment of transplant. Eyeing that impossibly small syringe and not believing that small amount of cells could save our son's life and grow into a new immune system. Everything - all of our lives - hanging on a minuscule amount of cells. At that moment, remembering how hard it was to breathe behind those masks - they make you feel like you're hyperventilating. And maybe we were. But the mask did not stop us from covering Ezra's chemo-soured head with kisses and wondering when he would once again smell like baby shampoo.

We have never gone into great detail as to the horrors chemo and the transplant process inflicted on Ezra's little body, especially the second time around. Suffice to say that it was horrible. But what is amazing, is the way that his body has healed and dealt with all the changes in the past two and a half years of two transplant journeys. From pre-transplant to the horrors of transplant to post-transplant weight loss and hair loss to the bloating of steroids to the still puffy, but not as puffy of today - it is breathtaking to see how his body has changed. We have been trying to teach Ezra to appreciate the way his body can heal and to take comfort in his body's incredible ability to heal.

Our hope that Ezra will someday be cured would be impossible without Ezra's miracle needle-in-a-haystack donor. Our hope when we had none. We owe everything to her and we hope she knows how much she means to us. We feel so much gratitude that a cure even exists, as difficult as it may be, and that Ezra's doctors have gotten him this far.

In celebration of Ezra's life, we are forming Team Ezra for the Gift of Life Bone Marrow Foundation Walk for Life taking place on Sunday, October 26 in Paramus, New Jersey. The event is a 5K walk or run and includes a donor-recipient meeting, kids area and entertainment. All net proceeds from the walk go to adding more donors to the registry. Please join us in honoring Ezra and helping others have a second chance at life. Register for Team Ezra at If you can't make the walk please consider donating to Team Ezra or to our family fundraising page 

We are also in the process of designing an awesome Team Ezra shirt - stay tuned!

We celebrated the one year transplant anniversary over the past few days with cake and balloons and a special shirt for Ezra that says "I survived TWO stem cell transplants" (who knew they made such shirts? And in kid sizes?). Our journey for a cure is sadly nowhere near over. We enter year two post-transplant with a certain amount of fear of what may come, but mainly we are hopeful. Hopeful that this year may be the year that Ezra is cured. 

Ezra has a daily calendar that he fills out each day with his teacher. It has a spot for feelings. Everyday Ezra chooses "Happy" because, as he says, "I am always happy." This is what we hang onto more than anything - our happy little boy who leads us through the darkest of days so that all we see is light. 

Sunday, August 17, 2014

Days +354 to +360: We Will Get There

We got back the results of Ezra's monthly T cell check and unfortunately Ezra's T cells decreased this month. The T cells are not as far down as they were in June, but it's enough movement in the wrong direction. The decrease in T cells is likely from the increase in steroids following Ezra's auto-antibody flare-up in June. After giving us the results, Ezra's doctor reassured us that "we will get there." We hold on tight to the belief that we will indeed get there. When and at what cost are the unknowns. We always say we're ok with this process taking a long time - after all, a life saving treatment shouldn't be easy - as long as we are moving forward. It is falling backwards, especially with losing precious T cells, that hurts. 

Ezra's toe is still a little red, but improved. We are continuing with the antibiotics for a bit longer and will go from there. His hemoglobin was down this week, but one of the indicators of red blood cell destruction was normal, so the doctors weren't too concerned. We are sitting tight on the steroids for this week and then hopefully be able to wean again next week. 

One piece of positive news: the platelet antibody screen came back negative. As of now, Ezra is testing negative for antibodies for all three cell lines! A negative screen doesn't mean that the antibodies are totally gone, but it is a sign that things are quieting down. They sent out another red blood cell antibody screen test on Friday because as we go down on steroids, the antibodies can flare-up again. We are so hoping these tests stay negative. 

While the summer is great for us because we can do so much outside, it is also challenging to go to any outdoor public places because so many more people are around in the summer. We did make a great discovery to keep Ezra busy and challenged - mini golf. We discovered a great mini golf place close-by. We are able to go at quiet times and keep distance from the other players. Ezra loves it and even hit a crazy hole-in-one! Last year on this day, Ezra was on Day -5 of chemo in preparation for transplant number two and was already very ill. So grateful to be breathing fresh air far away from the gray of the hospital. 

Sunday, August 10, 2014

Days + 342 to +353: The Revolving Door of Issues

Last week, Ezra's platelet count had dropped again. Just as the red blood cells had come under control, of course his platelets needed to take their turn again and cause problems. The doctor was planning to see his counts this week and then give another round of high dose IVIG. We were feeling frustrated at how difficult it has been to get these auto-antibodies under control. 

Then we showed up to clinic on Friday and his platelets had bounced up nicely and are back in the normal range! A pleasant surprise that we will gladly accept. The doctor wanted to do another check of the platelet antibodies, which we haven't done for a while because it requires a tremendous amount of blood. It will be interesting to see what this test shows. 

Because there always has to be something, over the weekend, one of Ezra's big toes developed redness around the toe nail. It seems to be infected. He started antibiotics and foot soaks. We will be watching it closely. We are hoping the infection clears up quickly and doesn't cause problems with his counts, which it may do. Here we go yet again.

The doctor also sent out another T cell count check on Friday (yeah, we're not sure how he has any blood left). Ezra's total lymphocyte count, which includes T cells and other types of cells, has been low, so we have no expectations of what this month's T cell count will show. Please prayers for a T cell increase!

As we approach the one year anniversary of Ezra's transplant on August 23, there are a lot of intense memories for us associated with the month of August.  This week marks one year from when Ezra was re-admitted to start high dose chemotherapy for the second transplant. Five years ago this past week, a 5 month old Ezra was admitted to our local hospital with labored breathing and would soon be escalated to intensive care. For the first time five years ago, we heard the name "Hyper IgM Syndrome," and life forever changed. August may always be a difficult month for us, but we have plans to change it into a month when we will also always celebrate life and hope.