Days -6 and -5: Chemo Sets In

We made it through the weekend of baths and dressing changes, but barely. Things went well yesterday, but today Ezra started bleeding from his central line after the first dressing change. There wasn't much we could do at first because of the skin issues from this chemo drug. After the second dressing change, we put on a dressing to help with the bleeding and will watch it over night. He is going to need another dressing change tomorrow no matter what. Hoping the bleeding resolves overnight. It is likely due to all the dressing changes and the line not having a chance to heal. That's always the vicious cycle with transplant - everything you do causes another problem.

Aside from this issue, Ezra made progress in dealing with the process by deciding on the way he wanted dressing changes done: Three Stooges playing on the iPad, Mama takes off the bandage, a wet paper towel is patted on the other side of his chest while the nurse does the sterile cleaning (the worst part according to Ezra b/c it burns). He still screamed his head off, but he stayed still and gained a little control over the process.

No sigh of relief though now that this particular drug is done. Tomorrow starts the scariest of the drugs. This drug can cause very serious allergic reactions. It will be slowly given over most of the day. Ezra will be heavily pre-medicated and will likely sleep most of the day. He had a less potent form of the drug last year and did fine. This time it is the more powerful form and he will get it for 3 days. It will be a very anxiety filled 3 days.

The vomiting and nausea are still going strong. He has lost most his appetite. His energy is low and we can see him fading. It is so heartbreaking when he cries "why is this happening?" In between all the hard stuff, he is still playing plenty and enjoying his rewards for being a good boy like his new handheld rocket launcher. We have been busy anticipating and fulfilling Ezra's needs. Like "I need food coloring for my 'experiment.'" Solution? Drop some M&M's in there and see what happens. Or "I can't drink unless I have my Buzz Lightyear rocket cup." Oh yeah? Well, give me that paper cup; here are some construction paper fins; slap on some Buzz stickers and voila! A Buzz Lightyear rocket cup. Now drink.

Ezra's CBC today showed that his lymphocytes have drastically dropped. As scary as this whole process is, this is a good thing. For those of you who followed Ezra's blog last year, the problems started when the chemo failed to kill off his lymphocytes. The numbers may still bounce around a bit, but this is a good sign that the chemo is doing its job this time and the doctors are pleased. Hoping this is the beginning of the end of Ezra's old immune system and a sign that his body will be ready to welcome the new healthy system.

 

Days -8 and -7: Chemo Begins

Yesterday and today, Ezra received the first of several different chemotherapy drugs. It took every ounce of resolve that this is the right decision to not rip out the IV delivering what is essentially poison into Ezra's body. High dose chemo is nasty stuff in so many ways. It is so hard to watch it go into Ezra's little body again, knowing the difficulties ahead.

Unfortunately, the side effects have already kicked in. He started to vomit and have tummy troubles last night. We didn't expect side effects so quickly because last time it was a while before the sickness kicked in. Ezra is receiving a different chemo regime this time, so we guess we need to shed expectations of what it will be like.

Ezra is still having some pain from his line, but requiring less pain meds. He made it through his first dressing change yesterday. Very traumatic - think screaming, kicking child in pain with an open wound that can get infected and a line that could pull out of his chest. As a wise man once told us: dressing changes take years off your life. Just call us octogenarians.

The bad news is that over the next two days, Ezra will have to endure 4 dressing changes. He will be receiving a drug for the next two days that is excreted from the skin. The dressing has to be changed twice a day to prevent very serious skin irritation and rash.  He also has to bathe twice a day. No easy task for a little boy who doesn't feel well. 

Otherwise, Ezra has been enjoying being reunited with his primary nurses who took excellent care of him last year, and the other staff who make this process a little easier to go through. He did a little punching with the karate guy today and has been playing on his mat when he's feeling up to it. 

Doubtful that this first shabbos in the hospital will bring any peace. The electric candles are ready to go (and Ezra is ready to swipe them for lighting his pretend dynamite and rocket engines). We will have all of your kind messages and heartfelt prayers in mind this shabbos. 

We are jumping in - no looking back - our enormous leap of faith. 

Mailing Address

Thank you to all who have been asking for a mailing address for Ezra. Please send mail to:

The Ronald McDonald House of New York

C/o Ezra Fineman

Room No. 801

405 East 73rd St 

New York, New York 10021 

Thanks!

Day -9: Admission and Line Placement

Today is considered to be Day -9. The days are counted negative until Day Zero, which is transplant day. Then we start to count up, and hopefully up and up and never again back to a negative number.

Today was difficult, but in some ways easier to manage because we are on familiar territory with familiar faces. After a long morning of bouncing around from exam room to exam room, Ezra had his central line surgery. The line thankfully was placed correctly. This was Ezra's fourth central line surgery, not including his port surgery. Four years old and a chest full of scars - the chest of a fighter. Ezra still has his port, but for the many medications of transplant a central line with three access points is needed.

Ezra had a lot of pain from the surgery, but the pain meds are helping. We are hoping that he will feel better tomorrow after the huge pressure dressing is removed. He also seems to be accepting that the line is bak, better than this morning when it was all tears over the thought of the central line returning.

After surgery, Ezra was admitted to his room. Thankfully, we got a sunny room with a view of Ezra's beloved smoke stacks and the Queensboro bridge. Ezra is excited that he gets to have a sleepover with his pals Bert and Ernie. Dr. Ezra is back and taking new patients. 

Chemo starts tomorrow. The goal of the chemo is to kill off his current faulty immune system and make room in the marrow for the donor's healthy stem cells. It will likely take a few days before the side effects of the chemo start to kick in. 

It is still hard to believe that we are back here starting all over. We are keeping our eyes and hearts on the goal - a healthy Ezra.

This fortune was found in Ezra's cookie the other night. Let's hope this one comes true.

Transplant Take Two

On Wednesday, Ezra will be re-admitted to Memorial Sloan-Kettering for a second attempt at transplant. The good news is that several months ago, a partially matched donor for Ezra showed up in the registry. The bad news is that the donor is only an 8/10 match. When looking for a donor, the doctors look at 10 antigens. A perfect match is a 10/10. Any mismatch away from that perfect 10 brings significant risks for the patient. However, this is the first time that any donor that the doctors would even consider using for a transplant for Ezra has appeared in the registry and that is a big deal.

Due to the degree and type of mismatch, the doctors will use a method called T-cell depletion. The cells will be collected from the donor, and then the lab will process them through a machine that removes the T cells. The T cells are the cells that cause Graft Versus Host Disease ("GVHD"). If Ezra was to receive the cells from the donor without the T cells being removed, he would almost certainly develop GVHD and it would be severe. T cell depletion significantly decreases the risk of GVHD, but it comes with a cost. The T cells that usually come in with a graft provide protection from infection during the period when the patient's new immune system is growing back. Ezra won't have that protection. It will take 4-6 months for new T cells to appear and during that time period Ezra will be at an even greater risk for infection than he would be typically post-transplant. Sloan-Kettering has more experience with T-cell depletion than any other center in the U.S., so Sloan is the best place for this type of transplant.

Whether to proceed with a second, risky transplant has been a devastating decision and one that we have made with heavy hearts. Ezra is automatically at higher risk because this will be his second transplant and his second exposure to high dose chemotherapy. In the middle of our decision making, Ezra's primary doctor at Sloan since he was an infant suddenly passed away, which threw us for a loop. The chair of the department has taken over Ezra's care and we have gained comfort with him. In the end, transplant is the only path that may lead to a long, healthy life without - as one doctor told us - a sword hanging over his head.

If the transplant works, the sword will disappear and Ezra can lead a normal life. He can no longer live this life of seclusion. It is time for Ezra to be able to go to school, play dates, birthday parties - all the normal experiences a child shouldn't think twice about. Enough is enough of this limited life and it is time to make Hyper IgM a thing of the past.

Thanks to the hard work of special friends of ours, Ezra had some very special opportunities over the past months to break out of his limited world. In addition to the NY Hall of Science, Ezra had the chance to visit Liberty Science Center, the Cradle of Aviation and the Museum of Natural History - all after hours (think Night at the Museum). Two weeks ago, Ezra had the incredible opportunity to have a private tour of the Intrepid and the space shuttle Enterprise. To say he was thrilled is an understatement. We are so grateful to all of these institutions for making Ezra's dreams come true and for providing our family with special memories that will carry us through the hard times.

We are so, so grateful that after all these years of searching, a donor has appeared. All we know is that the donor is a female and she is around 20 years old. And that she has been very cooperative with all that has been asked of her so far. We love her already.

We are mustering up all our strength in order to march our son back into the gray prison of the hospital. It was with  indescribable sadness that we broke the news to Ezra. The hardest part, as we suspected, was the news that he will need a central line again. The line caused him a lot of pain last time and dressing changes were traumatic. The surgery for the line will be the first thing to happen on Wednesday. Chemo starts the next day.

Through the months of isolation last year what kept us going were the messages of support, the hundreds of people who donated blood and platelets for Ezra, the meals and treats that were sent with love, the generous friends who paid for our room at the Ronald McDonald house, the gifts sent to occupy Ezra, and the prayers and kind thoughts from people all over the world. They were all reminders that we aren't so alone in this journey. One thing we know this time is that we will not be marching into the hospital alone.

We will update this blog and Ezra's Facebook page (www.facebook.com/help4ezra). Please feel free to share Ezra's story. He needs as many prayers as he can get. His Hebrew name is Ezra Aviel ben Hertzelia Shandel. Please keep him in your prayers and thoughts.

With love,
Robin, Evan and Ezra

Match Number 100!

Today we celebrate our 100th donor match through Ezra's Gift of Life donor circle (www.giftoflife.org/help4ezra)! The 100th donor match is for a 35 year old woman suffering from ALL. This is an incredible accomplishment and one that everyone should be very proud of. Our ability to find matches for so many other patients is due to the support of the thousands of people who have registered, given donations and/or held drives for Ezra and other patients like him. While we continue to hope for Ezra's perfect match, it brings us much comfort to know that we have helped other patients and their families find hope in the possibility of a cure. We pray that one day no patient should ever have to search for a match and that the miracle of a cure will be available to all patients in need. 

It has been a while since we have updated this blog. Ezra has been doing well on his medical treatments. He continues to gain weight and grow, better than ever before. He started in-home pre-school instruction through our local school district and is enjoying his lessons with his teacher very much. Ezra is still largely under isolation restrictions, but with the warmer weather, we have been able to enjoy more outside activities. We will have a more detailed medical update soon, but for now, things are stable, and we are grateful for that.  

Thank you again to everyone who has supported our efforts to find a match for Ezra and others over these past 3 years. It has been a privilege and an honor to help others find their miracle matches and we hope that you all share the joy of this amazing accomplishment with us.

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!