Day +183: Things Fall Apart

The latest chimerism studies show that Ezra's donor cells are back down to 3%.  The doctors had ordered a different type of chimerism test that looks at the specific types of cells to see the percentage of donor cells for each type.  This test came back showing the T cells at only 3% donor and the rest of the cells were 1% or zero.  The only bright spot of these results is that all we care about in Ezra's case are healthy T cells, so of all the types of cells, it's best that the T cells are highest.  But 3% will not do much to fix Ezra's immune system.  After these results came in, the doctors ordered another chimerism test using the same method that we've been using.  Unfortunately, this test also showed a drop to 3% donor cells.

Following these results, he has been taken off of the immunosuppressants.  We were still in the process of the slow taper and had been on hold because Ezra had a rash, and they were concerned it was GVHD.  The rash has thankfully cleared up with a prescription cream and with these bad results, they are no longer concerned about GVHD.  The plan is to wait until the immunosuppressants clear his system, which can take some time, and then re-test the chimerism.  It seems like his doctors do not want to discuss next steps until we reach the point where there are no donor cells.  They seem to want to believe there is still a chance the donor cells will grow.  We know they're right in part because it has happened once, maybe it will happen again.  For now, this all seems ok because we already know the back-up options are bad - very bad - and Ezra is doing well enough that there is no rush. 

Maybe the title of this post isn't completely correct.  Only some things are falling apart.  That which is in Ezra's control is going well.  He is thriving and growing.  For the first time since he was 4 months old when he was first diagnosed, his weight is on the growth chart at the 3rd percentile (Dr. G, hope you're reading this - hooray!).  We are trying hard to keep him occupied at home.  Here is Ezra with the wonderful Sasha from Mini Scribblers Art who has been graciously stopping by to get creative with him.  And he is learning to ride his bike so he can one day keep up with his Daddy.  It is so hard to reconcile the strong boy on the outside with the trouble within.

Safe and Sound

Thank you to everyone for all the messages checking in. We are all fine. We miraculously have power, which is fantastic for many reasons, but most importantly because Ezra takes several medications that require refrigeration. We have some down trees and our street is blocked in both directions (the town told us our street is a "proverbial war zone.") Ezra is on a medical priority list for the town. They checked in on us and said they will work on access to the street for ambulances in case of an emergency.

The biggest issue we've had so far is that our little nature lover started sobbing when he saw the broken trees. Not sure how we're going to get the trees cleared without breaking his heart.

We hope everyone is safe!

Day +151: One Point Higher

The latest chimerism results are in and the percentage of donor cells has increased from 5% to 6%. We are disappointed that the increase was not greater. His doctors are also disappointed and were hoping for a number closer to 10%. We were just hoping for something that would make us feel that Ezra is in a safer place. But we are grateful that there was any increase, no matter how small, because a decrease would put us in a very bad situation. And two months ago, we thought the transplant was definitely failing, so a small increase puts us in a better place than the alternative. So, what do we do now? Wait until the next round of tests and hope that the donor cells continue to grow. We are continuing with the slow immunosuppressant taper. His counts continue to be low, but stable. And his activity is still limited to home, the hospital and the outdoors. There is nothing for us to do except to hope that the graft sticks around and continues to grow, and to keep Ezra infection-free in the meantime.

Ezra continues to make the most out of his limited world and is a constant trooper. When we go to Sloan for his clinic visits, we park in the garage and walk through the tunnels to get to clinic. We pass by a hallway where there is always the smell of woodworking and Ezra asks us each time what they are building. The other day we were with Ezra's pal Jessica from Childlife and we bumped into a Sloan carpenter. She knew about Ezra's woodworking curiosity and we stopped the carpenter to ask about his work. He invited Ezra to come see their woodworking shop. Ezra had a great time checking out the carpentry equipment and talking shop with the carpenters who started calling him their "new employee." And here he is with the plants by the garage that he loves because he thinks they are banana trees. Ezra has a knack for finding fun everywhere - even the bowels of Sloan-Kettering.       

Day +137: Keep on Getting Stronger

Ezra's counts have been starting to stabilize.  His platelets have started to hold without transfusions, and his neutrophils are just above the threshold where medication is required to stimulate growth.  His platelet counts are hovering around the transfuse level, but he has been on the right side of the borderline for the past couple of weeks.  The big question, however, is whose cells are growing: Ezra's old cells, the donor cells, both?  We don't know the answer to this question, but no matter the answer, it is much better and safer for him to be making his own neutrophils and platelets.  We are anxiously awaiting the next donor chimerism test, which will be in the next couple of weeks.  Please, please keep praying for donor cell growth!

Meanwhile, Ezra gets stronger each day.  When we got home from the hospital, he no longer could jump and he struggled with going up and down the stairs.  Now he is like a leapfrog and chuggs his way up and down the stairs.  And he is one happy little dude.  Even on hospital days, he skips around the examination room and sings in the halls, making everyone stop and laugh.  

We've been spending as much time as possible outside, attempting to make up for the summer that never was.  We've been finding quiet outdoor spots that don't involve playgrounds where Ezra can walk around and enjoy the fresh air.  We asked him which season he likes best and he answered "I just like every regular day."  We couldn't agree more.

Day + 123: Happy New Year, Love Ezra

Tonight starts the Jewish New Year and we wanted to take this opportunity to thank our family, friends, and the complete strangers who have entered our lives for the outpourings of support and love for our family this past year.  We have truly learned the meaning of community and are grateful to all of you.

The customary greeting of "Happy and Healthy New Year" seems to have more meaning this year.  We are hoping and praying that this is the year that Ezra is blessed with good health and the chance to live a long life.  Happiness will surely follow.  We are also praying for the health and the end of suffering for all the babies, children and adults who we have met during this journey who are each struggling with medical challenges. 

L'shana tova! Love, Ezra.

Day +117: Still In The Game

Although Ezra is not yet off his immunosuppressant medications, his doctor decided to re-test his donor chimerism.  The good news is that the percentage of donor cells went from 3% to 5%.  Not enough to feel any real sense of relief, but we are hoping and praying that this small increase is a sign that the donor cells are still capable of growing. At the very least, the donor cells are still present and where there are cells, there is still hope.  And a little hope goes a very long way.  If these donor cells want to take their time growing, we'll have all the patience in the world, as long as they keep growing.  Thank you all for your prayers - here's proof that they are working.  Please keep it up - Ezra needs you!

Ezra also got his game back - his basketball game, that is.  He likes to shoot hoops with a "real" basketball hoop with Daddy's assistance. Our Little Tikes hoop just won't do.  Since the park is off limits, our friends Randi and Arnie have graciously granted Ezra an open invitation to play b-ball with the hoop in their driveway.  Game on!

 

Day +113: Match Number 50

Today we are proud to announce our 50th bone marrow match for another patient in need! A donor sponsored by the Help4Ezra donor circle (www.giftoflife.org/help4ezra), has matched a 29 year old woman suffering from Hodgkins Lymphoma. Through Ezra's Gift of Life donor circle we have found 50 potentially life-saving matches for other patients. That's 50 patients and their families given hope, 50 potential chances for a cure, 50 miracles. When we first decided to start the campaign to find Ezra a bone marrow donor almost exactly 2 years ago (this picture was taken when Ezra was 16 months old and was used on our first drive flyers), we knew that we were and still are looking for a needle in a haystack. But we always said that if we had to go through these challenges with Ezra, then maybe we can make some good out of it and help other patients. We never imagined helping 50 children and adults and still going strong. It is a privilege, an honor and a blessing to be able to help so many people.

Through bone marrow drives throughout the country and the world and an online campaign, thousands of people have registered as bone marrow donors, hoping to be Ezra's match. And equally as important have been the fundraising efforts to move donors off Gift of Life's waitlist and onto the registry. We could not have done it without everyone rallying behind Ezra and understanding how important it is to swab your cheeks and join the registry. Together, we have registered over 4,300 donors! That is an incredible accomplishment and one that brings us much joy.

While we are praying and hoping that a miracle is happening inside Ezra, until we know that he is cured, we will continue to look for his needle in a haystack - his miracle match. So, if you haven't already swabbed your cheek, or told a friend to register, or made a donation to sponsor the processing of a donor test kit, please consider doing so right now at www.giftoflife.org/help4ezra. There are more miracles waiting to happen.