Days +2 and +3: A Serious Case of the Giggles

Ezra had a great weekend. He played a lot and laughed a lot with few complaints. Everything gave him the giggles - even the nurse saying "I'm hanging your medication." We got a mat in the room and set up his new Thomas Take 'n Play, and have been enjoying looking out the window and playing I Spy. He is fascinated by the smoke stacks that we can see from our room, but disturbed by the fact that there hasn't been any smoke coming out. He has decided that the factory went to Queens for vacation (and took the Queensboro bridge, of course) and that's why there's no smoke. Plausible theory.

He also, unbelievably, has been eating really well. Ezra has never been a good eater and we expected him to shut down quickly during this process. But the doctors are holding off on starting TPN because he's eating so well.  Pretty amazing.

There's a big "however" - however, the likely reason that Ezra is doing so well is that his counts haven't bottomed out yet. Certain of his old white blood cells are still present. The docs told us that he would be at zero before the transplant, but he's not there yet.  They aren't worried and say he will reach zero in the upcoming days and that's when he will likely have more stomach discomfort, nausea and potentially mouth and other sores. But it's great that he is having these good days because each good day is one less bad day and gets us closer to engraftment.

Ezra also tested positive for rhinovirus - the common cold. They say he will pass it and right now his symptoms are nearly non-existent.    

Ezra also spent the weekend playing with both sets of grandparents, and we got a visit from the famously awesome Hindy Poupko and Seth Galena who have been giving us lots of advice to help us through this difficult time.  They gave Ezra this great golf set and he has been whacking the balls around the room.  And Dr. Ezra was in full force wearing his new personalized scrubs, which were a gift from Bobby and Thea Block.

Just a note about blood and platelet donations: thank you all so much for responding to the call. Many have asked if there's any way to donate out of state - unfortunately, donations for Ezra must be made at Sloan. But there are certainly other patients who can use your blood! We also believe that they give parking vouchers if you are driving, so ask when you make an appointment.  Thank you!!!

Day +1 Ezra Needs You

Well, he needs your blood and platelets. Over the upcoming months, Ezra will need frequent blood and platelet transfusions while his body re-builds.We are asking for those of you close to Sloan-Kettering to donate blood or platelets to Ezra. You can do a directed a donation at Sloan-Kettering (it can only be done at Sloan).  Ezra's blood type is currently O+ (it will change to his donor's blood type later on).  For platelets, you can be any blood type. Family Members: for complicated medical reasons, you can NOT donate if you are a blood relation on either side.

So come on all you athletes, cyclists, exercise enthusiasts or even healthy couch potatoes and give Ezra some powerful cells to get him through this time of healing.  Contact the Sloan-Kettering Donor Room at 212-639-7648 to make an appointment. We would appreciate hearing from you if you donate just so we know there are directed donations for him, but no obligation to do so. If you want to let us know, email help4ezra@gmail.com.  Thank you in advance!

Ezra is having a great Day +1 so far.  He was busy this morning with music therapy, physical therapy and karate. He got an A+ from PT and then passed out for a long nap.  He's sneezing a bit, so we're keeping an eye on that. Hoping it's nothing.

Shabbat Shalom to all.

Day Zero - Transplant Day

Intense. That's probably the best way to describe today, although it doesn't capture the crazy mix of emotions that we experienced today.  Not sure any words can adequately express what today was like.

Here's how the transplant itself happened.  We were told in the morning to expect the cells from the lab around noon - 1:00 PM.  The pre-medications started beforehand.  Right before the transplant Ezra started to rage in reaction to the medications and had to be sedated. He then fell asleep on top of Mommy, which was a good thing because he wasn't moving during the transplant.  At approximately, 1:30 PM, Dr. O'Reilly, Chief of the Bone Marrow Transplant Service performed the transplant.  The cells were in a large syringe and looked like watered down blood.  Instead of an IV drip like we expected, Dr. O'Reilly actually slowly pushed the cells out of the syringe by hand and into Ezra's central line.  This all happened while Ezra slept on top of Mommy. 

Tears were flowing as we watched these magic cells push their way into Ezra's body.  It seems so impossible that a syringe of cells will grow into a new immune system - that these cells can cure Ezra.  That 6 inches from our faces, we were watching the beginning of what we hope will become the new healthy, germ fighting Ezra.

Dr. O'Reilly explained that the cells will journey first to Ezra's lungs, then to his spleen and then by tonight, they should make their way to Ezra's bone marrow. There they will stew and slowly start to grow.  He also told us that Ezra will excrete out the chemicals used to wash the cord blood through his breath and he will smell like garlic for 24 hours. He immediately smelled, although it's not Italian restaurant garlic - maybe rotten garlic at best.

It's an awe-inspiring process and we feel gratitude that the option of a cure even exists. We know very little about the cord blood unit - only that it came from a bank in New York. These umbilical cord blood cells already gave life once to some other child out there and now they are giving life again. Without public cord blood donation, these life-saving cells would be medical waste and our son would have no chance at a cure.

The rest of the day unfortunately was a challenge.  Ezra continued to rage from the medications until he passed out. Tensions were high and the doctors are switching around some meds to see if we can get him to a better place.  His stomach is also causing him a great deal of distress. The doctors are telling us things will get worse before they get better.  Hard to imagine things being worse, but we are taking it one day at a time.  Thankfully, he woke up after sleeping all day and has been playing for the past few hours and acting like himself. As of this posting at 12:45 am, he is still going strong.  Signs of life? We'll take it.

Coincidentally, tonight was the annual Gift of Life gala.  We have worked very closely with Gift of Life for nearly 2 years trying to find Ezra a match. While Ezra was sleeping, we were able to watch the live stream of the beginning of the gala.  They announced Ezra's transplant and we were touched by the support and prayers of the hundreds of people in attendance, and of course, everyone out there sending us love.

As we confront the pain and suffering, this picture (taken by Ezra's talented Aunt Jenny) is a reminder of why we are sitting in this hospital. Not even the sky should be the limit for Ezra.

Transplant Schedule

The cells are expected to arrive around noon or 1:00 PM. The process should be quick. Hopefully, the hardest part will be getting Ezra to take his tylenol pre-med. Will keep everyone posted.

Days Negative 2 and 1

The countdown is almost over, tomorrow is the big day - transplant day. The umbilical cord blood unit is in the lab freezer waiting to be thawed tomorrow and then prepared. When it's ready, it will be infused into Ezra through his central line, much like a blood transfusion. Then the waiting game begins. It takes on average 21 days for cord blood stem cells to engraft - in other words, to take over and start growing into Ezra's new immune system. The length of time it takes for cord blood to engraft is longer than when the donor is a live donor - this is one of the disadvantages of using cord blood.  During the time before engraftment, Ezra has no immune system and is highly susceptible to infection. We need to keep him as protected as possible to avoid infection. Mommy and Daddy now have to wear masks and gloves 24/7 in the room, along with everyone else - will make sleeping in the hospital even more pleasurable.

Once the cells start growing, the concern continues to be infection and Graft Versus Host Disease (GVHD). GVHD is when the donor cells attack the recipient's cells. It can range from mild to fatal. Ezra has already begun medications to avoid GVHD.

We are praying for:
1) the quality of the unit to be good when they thaw it tomorrow;
2) quick engraftment;
3) no infection;
4) no GVHD;
5) Ezra to experience the minimal discomfort possible in the upcoming weeks.

A lot of mixed emotions as we look toward tomorrow. Hope, fear, gratitude and uncertainty all mixed together. Knowing harder days are ahead before we get to the better days, but not knowing when the better days will come.

We are grateful to everyone for the prayers and kind words. Special thanks to our synagogue, Ahavat Achim in Fair Lawn for holding a special tehillim service tonight for Ezra.

In other news, we moved rooms today and got an upgrade to the other side of the building. Our first room had the most awful view of another gray Sloan-Kettering building where we looked into other patients' rooms and it always looked like a rainy day. Depression central.  Now we have an awesome view of York Ave and can see the Queensboro Bridge with lots of sunlight.

Ezra is battling with very bad stomach pains, but got a special treat of getting unplugged from his lines for a short time during PT.  He took full advantage zipping around the room, jumping on the PT mat and coloring on the windows. First time he's had energy since we arrived and it was great to see.

And as we were getting ready for bed, we realized the shades were drawn and Ezra had not yet seen the lights of NYC out his window.  We opened the shade and his face lit up. "It's so pretty," he said, and asked to fall asleep with the shades up, gazing at the lights. 

We are getting you back out there baby boy.  Just give us time.

Days Negative 4 and 3: A Little Better

We started to see a little bit of improvement in Ezra over the past 2 days. He was the best he has been this morning when he spent most of the morning jamming on his guitar and singing with his music therapists. Then we started the last of his chemotherapy drugs this afternoon. This drug can have serious side effects, so they gave him a ton of pre-medications, which knocked him out for most of the rest of the day. The nurses have been in his room the majority of the day, closely monitoring him. So far he's handling it well. It is run over a 12 hour period, so it won't be done until the middle of the night and then we start it again tomorrow. So two days of extra anxiety.

Tomorrow is the last day of chemotherapy and then a day of rest before transplant day on Thursday.  His counts are dropping, as they should be, to make room for his new cells. He will start receiving blood and platelet transfusions soon.

And now your entertainment news: celebrity sightings in Room 935 today. Mayim Bialik came to visit. Mayim got to know Ezra last year when she joined up with Gift of Life to encourage people to join the bone marrow donor registry in hopes of finding miracle matches for Ezra and other patients in need. She has been a wonderful friend over the past year and we are grateful for her support and all she has done for Gift of Life. Sorry, no pictures: Ezra was wiped out when she visited, although they did get to discuss Ezra's new favorite movie - Mary Poppins (courtesy of Grandma and Grandpa) - before he fell asleep. We were touched that she visited.

Days Negative 6 and 5: A Very Unrestful Shabbat

Lighting our new electric shabbos candles did not bring any rest to room 935. Ezra is feeling the effects of the chemo pretty hard with steady vomiting and diarrhea. He also tested positive for a bacteria in his stool, which we are treating with antibiotics. We are up every hour and a half or so at night with him changing diapers and clothing. He is still in pain from the central line. He now has a PCA where we can push the button to give him extra pain medication. The surgeon stopped by to discuss swapping this new type of line for the old kind if he continues to be in so much discomfort. That will require another round of anesthesia and another recovery period and the chance that he might be in the same amount of discomfort, so we are sitting tight for another day or so in hopes that the pain starts to alleviate.

He also had a bad reaction to a nausea medication today that caused him to rage, so they had to give him a sedating drug to calm him down. He's been sleeping ever since. Hoping he doesn't wake up at 2:00 AM looking to hang.

Ezra also has stopped eating for the most part, which is to be expected. But when he was eating, Ezra had a chef, Chef Pnina, catering to his every need. Chef Pnina runs the Sloan-Kettering pediatric food service and is incredible. She met with us when we first arrived and has been determined to make Ezra everything he likes, just the way he likes it. She took Bubbe's recipe for salmon croquettes, added veggie puree and all, and made it just like Bubbe. She went out and bought his favorite piccolini wagon wheel pasta and sent up an entire pint of Hagaan-Daaz vanilla ice cream. None of that half-fat ice cream they give out for Dr. Ezra. It's a comfort to know that when he is ready to eat again, Chef Pnina will be here cooking up his favorites.

But what brightens us up the most is the steady stream of emails, texts, cards, and presents, letting us know we're not alone.And after shabbos ended, we got news that a group of Evan's bike commuting friends have gotten together to help pay the fees for our room at the Ronald McDonald House.  Can't find the words to adequately express our gratitude. Thank you to all.