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.    

 

Day +104: Hanging In

Thank you to everyone for your messages to Ezra that he feel better - they are much appreciated! After a rough week, he is doing better with the pain from the mediport surgery. They accessed the port for the first time today. He had some anxiety and tears, but with the help of numbing cream, he did not seem to feel the needle going in. We are hoping that with time he will get used to the process. It has to be accessed each time we come to clinic, which for now is still several times a week, so there are lots of opportunities for him to get used to it (unfortunately). Clinic is exhausting (as you can see), but at least he has his friends with him.

We've been trying to keep him busy at home with different projects and activities. He loves helping Mommy and Bubbe cook and bake. Chocolate chip-sprinkle cookies are his specialty! He has started to ask to go places like the park. It's really heartbreaking to say no, especially when there is no sense of when he will be able to return to his pre-transplant (still limited) activity.

The plan is still to wait until he is off the immunosuppressants before re-testing for donor cells. The doctors are doing a very, very slow taper and it will be a while before he is off them entirely. Usually Day +100 is considered to be a transplant milestone when the immune system starts to kick in more and some of the post-transplant risks become less likely. No celebrations for us on this Day +100.

Day +96: Mediport surgery

After a very long day, Ezra is home recovering from the mediport surgery. The surgery was almost called off right before he went into the OR by the surgeon who had concerns over Ezra's platelets. After much delay, the transplant team and the surgeon agreed to proceed with the surgery. Our brave little trooper is in a lot of pain. There was some debate over admitting him, but thankfully he was discharged this evening. We are hoping that the pain lessens by the end of the week and that he heals with no major issues. Another week, another challenge for our rock star.

Day +93: Three Long Months

Today marks three months from Ezra's transplant. He had a clinic visit today and the doctor was talking about how well he is doing. No infections, no graft versus host disease. He's eating and drinking well - even trying new foods (case in point, here's a picture of him trying pizza for the first time-finally!). He has energy and his labs look ok. Basically, we are back to where he was before transplant except that his immune system is in worse shape. His neutrophils still aren't as high has they need to be and he is still not making platelets and remains dependent on transfusions.

We are extremely grateful that Ezra is doing so well at this point. If the transplant was failing and he was sick, this would be an entirely different situation. The plan is still to just taper off the immunosuppressants and see if that makes a difference in the number of donor cells. They are tapering these drugs very, very slowly because, as one doctor explained, you can get graft versus host disease from just 1% donor cells and once you get it, there's no turning back. They won't check for donor chimerism again until after he is off these drugs.

Ezra is scheduled for surgery on Monday to have a mediport implanted. He still has his temporary central line, which can't stay much longer. The mediport goes under the skin and is accessed with a needle from the outside. The area will be numbed beforehand each time it is accessed. It is much less intrusive than the central line, has less infection risk and will allow Ezra to take baths. We know it will take some getting used to for him, but child life has armed us with lots of resources to try and explain this new "button" that will be under his skin. The surgery is more invasive than the procedure for the temporary line and requires more time under anesthesia. We are expecting him to have some pain for a while afterwards, but are hopeful that the mediport will ultimately allow him more freedom. We will let everyone know how he is doing after surgery.

And please keep up the prayers and positive thoughts for those donor cells to grow. We are still hoping for a miracle.