Peter Yarrow Benefit Concert

As some of you may recall, Ezra's all-time favorite song is Puff the Magic Dragon by Peter Yarrow of Peter, Paul and Mary. Since he was a baby, we've rocked him to sleep singing Puff, and if we dared to sing something else, we were promptly reprimanded with a nudge or a cry. Once he could strum a guitar, Puff was his favorite tune to play. And when he was in the hospital during transplant, he would belt out Puff, swinging his IV lines to the beat, while the music therapists played along.

Well, Peter Yarrow learned about Ezra's love of all things Puff (and other PP&M songs) from his grandparents at a recent book signing. When Peter heard about Ezra's situation, he immediately volunteered to hold a benefit concert to raise funds for Gift of Life in hopes of finding Ezra's match.

Thanks to Peter's generosity, An Afternoon with Peter Yarrow Benefit Concert for Gift of Life will be held on Sunday, May 19 at 1:00 PM at the Highline Ballroom in NYC. This will be a child-friendly concert and we hope that you will come out with your children and grandchildren to enjoy a great concert for a critically important cause.

Tickets can be purchased through the Highline website at http://highlineballroom.com/show/2013/05/19/peter-yarrow-of-peter-paul-and-mary/

An anonymous donor has offered to match the first $5,000 in ticket sales, so please buy your tickets soon! We are very grateful to the Highline Ballroom for donating such an incredible space for the concert.

If you belong to a community organization or other group where you can share the information on the concert, please help us spread the word. If you need any additional information, please contact Ruth Miller at rmiller@giftoflife.org.

We hope to see you at this fun event!

Recap of Ezra's 4th Birthday!

We had the pleasure of celebrating Ezra's 4th Birthday this weekend. We are having a hard time believing he is 4 years old (Ezra seems to be having trouble believing it too - before going to bed on the night of his birthday he asked if he would still be 4 the next day). He really seems to have grown and matured this year. After all he has been through and continues to go through, he often seems older than his four years. For his birthday, we'll allow ourselves the indulgence of a little gushing over our little man.

One thing is certain: these have been the best four years of our lives because we have been blessed with a loving, laughing, caring, sweet and creative soul who covers us with kisses everyday. We are so proud of our little fighter. What 3 year old never asks to leave the confines of his small hospital room? Never once asks to go home? Accepts that he has a battle to win, a mission to accomplish - one that he barely understands? We dread the day when we have to explain that the process has failed him; the cure has failed to happen; we've failed him; and that all his brave fighting has been for nothing.

Day after day we continue to be amazed at the way he finds joy in every difficult situation. Whether it be belly laughing at the guy that accidentally crashed his cart into another cart in the hospital hall or concocting a marble run out of oxygen tubing in a tiny clinic room, Ezra always finds something that makes him jump up and down with excitement and passion. Before we started the transplant process we feared that being in pain and in isolation for endless months would break his spirit. Ezra has proved us very wrong. Our hearts burst with pride over how Ezra lives and loves life.

Back to the birthday details. Friday was his actual birthday and we celebrated by playing in the snow from the surprise storm. Then on Sunday we we had a very small adults-only birthday party. We had a presentation from Mad Science, which Ezra loved. The best part was the four model rockets Ezra got to launch in our backyard. He watches model rocket launches on YouTube all the time, so this was a dream come true for him. Apologies to the neighborhood for the wayward rockets...

The other highlight of the party was the unbelievable-out-of-this-world-most-incredible cake we've ever seen! Ezra's space shuttle Endeavour cake was provided by the charity Icing Smiles, which arranges for dream cakes for sick children. The cake was created and baked voluntarily by Krystina of Cake & Co., located in Teaneck, NJ. She is clearly beyond talented. This cake was a true labor of love, and we can't thank Krystina enough. Ezra was so thrilled. If you are ever looking for a special cake or other sweet treat, Cake & Co is your place!

Last year when we watched Ezra blow out the candles on his cake, our eyes were filled with tears because we knew we were headed for transplant and we feared what laid ahead. This year, we felt only happiness as he blew out four candles with all his might. Not because things are better. In fact, the situation is worse. But because we've learned not to look ahead too much and to be present in these moments of joy. And most of all, we've learned that all that truly matters is that our baby boy is happy.

 

 

 

 

 

A Case of the Winter Blues

We are ready for the warmer weather to appear. Ezra had a blast playing in the snow, but the aftermath has not been much fun. The cold, wet, dreary days are getting to all of us, and Ezra has not been interested in leaving the house. He is still largely under isolation precautions, especially during this flu season. It's hard to tell if the reason why he doesn't want to leave the house is simply boredom from his limited activities. We do have one thing to look forward to - his 4th birthday, which is coming up on March 8. He can't have a traditional party with other children, but we have some surprises planned that will hopefully make his birthday a special one.

Healthwise, all is status quo for the most part. He has had some bouncing around with his counts, likely due to a new medication. We also found out that he has dental decay from the chemotherapy. We're making some changes to his dental care in hopes that we can stop the decay from worsening. It's upsetting to be left with only damage from the chemo without any of the benefits from transplant. Although, in the scheme of transplant side effects, dental decay is hardly the worst, so I suppose we'll take it.

On a separate note, for anyone in the NYC area who has not yet registered to be a donor, there are several great upcoming opportunities, starting tomorrow, to get swabbed. These drives are being held for another patient named Wendy Siegel who is in urgent need of a match. You might be Ezra's, Wendy's or another patient's miracle, so please come out and join the registry:

Tuesday, February 26
8:00 AM to 2:00 PM
Grand Hyatt
109 East 42nd St (Park Ave at Grand Central)

and

8:00 AM to 2:00 PM
Brookfield Place
Winter Garden
220 Vesey St (between West and Hudson Ave)

Thursday, February 28
12:00 PM to 8:00 PM
Central Synagogue
652 Lexington Ave (at East 55th St)

A Very Special Day

Ezra had a very special day last week when he had the opportunity to visit the New York Hall of Science for an after-hours private tour. The trip was arranged by wonderful friends of ours (we love you FGP's!) who knew that Ezra would be thrilled to visit the science center. What makes the Hall of Science so exciting for our little space lover is the museum's Rocket Park where they have two former NASA rockets. Ezra has toy models of these rockets, which he plays with all the time, so you can imagine how excited he was to see them in person. When we were driving towards the museum and the rockets suddenly appeared in our sight, he had to turn away because he couldn't handle the excitement! Ezra had so much fun exploring the rockets and playing in the pretend space capsule. Then he had the chance to explore the inside of the museum all by himself. It was like a dream come true for the little scientist. He still needed to wear gloves, but it didn't get in the way of the fun (except when he dipped his hands into a big container of bubble solution and his gloves were soaked, but thankfully that was at the end). The folks at the Hall of Science went out of their way to make sure that Ezra's medical restrictions were accommodated and that all of his many questions were answered. We will always treasure our memories from this special day.

On the medical front, all is status quo. The doctors are doing some extra testing on his immune system to make sure that whatever small smidgen of donor cells is left isn't doing anything to improve his immune system before we make any decisions. His counts are still on the low side and some weeks are better than others, but overall he is stable. We have started the process of consulting with other doctors on our options.

Many of you have kindly asked what you can do to help. It would be a miracle if a matching donor for Ezra showed up in the registry. So, we continue our plea to please register as a bone marrow donor, encourage your family and friends to do the same and consider making a donation to help sponsor the processing of a donor test kit. You can do so at www.giftoflife.org/help4ezra.

As always, thank you for your support and caring.

Day +222: And Then There Were None

The transplant has failed. Ezra has only 1% donor cells left. There is nothing left to do except start the dismal process of talking to the doctors about how just how bad are our bad options. It took us nearly 3 years and countless consultations with doctors across the world to decide to move forward with a less than ideal transplant and now we are back to square one, but with worse options and with the scars of the transplant process fresh on his skin and fresh in our minds and hearts. It may be that the right decision is to not do anything. To let him be. To let him live. And to hope that someday soon that long sought after match appears.

We take comfort in the fact that Ezra is happy and doing well. He has been spending time recently jamming with his beloved music teacher Sean from Music for Aardvarks (a song about pooping on the potty is the new favorite). And we've been taking advantage of his recently granted permission to go to the park when not crowded. We're the crazy ones playing in the freezing cold -- but that also means the park is empty, so perfect playing conditions for us. Ezra has been passing the time at clinic hanging out with his pals Bert and Ernie. Bert "helps" de-access Ezra's port, but Ernie isn't allowed to help because Ezra says he's too much of a troublemaker to be trusted.

We will continue to update this blog with Ezra's progress. Thank you all for your support during these past 7 months, and thank you to those of you who continue to reach out in different ways to bring a smile to Ezra's face. Happy holidays and happy new year.

Day +211: Hoping for a Hanukkah Miracle

This past month has been spent waiting for the immunosuppressants to make their way out of Ezra's system so that we can test the donor chimerism again, which will be done soon.  Now that he has been off the immunosuppressants for about one month, the hope is that the donor cells have been able to grow. If not, then this is probably the end of the road for this transplant, and we will start discussing our options for next steps.

This week we have been joyfully celebrating Hanukkah. Last Hanukkah, we joined up with The Maccabeats, actress Mayim Bialik and Gift of Life to try and find Ezra's miracle bone marrow match. No miracles happened last year for Ezra, although matches for many other patients were found. This year, we are still hoping for a miracle match for Ezra, but first we are hoping that he won't need a match for second transplant and instead his donor cells will grow, grow, grow. That is the Hanukkah miracle we are praying for.

In the meantime, we are spoiling Ezra with Hanukkah fun as much as possible and loving every minute of it. And this year we are celebrating in a big way with a huge menorah on our front lawn. A rabbi from the local Chabad (Jewish outreach organization) randomly stopped by our house and asked if we would be willing to let them place one of their super sized menorahs on our front lawn. We said sure - we could use some extra light in our lives this year. It has been a huge hit with Ezra and the whole neighborhood. We're soaking up the light while we can.

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.