Days +6 and +7: T-Cell Drama

The past two days have been anxiety filled. Instead of decreasing to zero, Ezra's lymphocytes, while still low, were increasing. Not what was supposed to be happening. He should have been at zero by Day +2 and he should have stayed that way. When they looked at his lymphocytes more closely, they were T cells, the type of cell that can cause rejection of the donor cells. With the numbers increasing, the doctors started to get concerned and began running more tests. They even started talking about the transplant failing, one of our worst nightmares. Panic time. The first news to come in today was that the majority of the T cells were Ezra's and not donor cells - that was bad news.  Then they ran a test to see if the T cells were "activated."  Thankfully, late this afternoon, the results came in that the cells are not activated and are basically dead cells. Good news and everyone took a sigh of relief.

His lymphocytes went down a bit today, but they still need to continue to stay down until we know it's time for the new donor cells to appear. So we will be waiting and watching.

We also had a scare when Ezra woke up from his nap yesterday with a huge bruise on his hip that came out of nowhere. A quick CBC showed that his platelets had dropped drastically. Within an hour, we had new platelets from one of Ezra's super donors and the bruise is starting to heal. And today brought signs of mucositis, a common side effect of high dose chemotherapy. Ezra has mouth sores and is gagging on the mucus in his throat. He is still being to be a good sport and trying to eat, but it is painful for him. These issues usually don't resolve until the new cells appear, so we may be facing a couple of weeks of mucositis. On a positive note, the doctors had expected these symptoms to appear last week, so we're one week ahead of the game.

The theme of the week has been space shuttles. Ezra LOVES space shuttles and watches You Tube videos of launches endlessly. During our first miserable weeks here, he wanted nothing to do with space shuttles, but his love for them is back in full force (shout-out to Ezra's girlfriend Shayna and her parents for the awesome new space shuttles). Everyone who walks in the room has to watch a launch. The past few days have certainly felt like a space mission - we are definitely exploring uncharted territory for now.

Days +4 and +5: Going Strong, Maybe Too Strong

The last two days have been great. Ezra is doing really well. He is still energetic and playful.  And amazingly still eating well and avoiding TPN.  The only problem is that we found out that he still has too many T cells left. The chemo should have wiped out his T cells, but there are still some floating around. Ezra's T cells need to be gone in order for the new donor cells to grow and take over. The doctors are running more tests to see if the T cells are Ezra's or some residual T cells that came with the cord blood unit. Then we'll wait a couple of days to see if the counts go down. If the T-cells are his and they don't go down, Ezra may need more chemo. Obviously, we really want to avoid putting his little body through more chemo. So please pray that those T cells do what they are supposed to do and go away. We always knew Ezra was strong, but this is an instance where we need his body to give up a little and wave that white (blood cell) flag of defeat.

We've been completely spoiled by all the delicious food coming our way from everyone who signed up to feed us. We can't thank you all enough for your generosity and thoughtfulness.

Special treat for Mama tonight: Daddy went to the RMH this evening and they offered him free Yankees tickets to tonight's game. He correctly declined, telling them he would no longer be a husband if he accepted. Instead of the tickets, they told him that Macys was holding a special event there and he could pick up a new pair of shoes for Mama. Sweet! Now, that's a good husband! Mama is happy with her new dress shoes...now just need a chance to wear them.

Here are some pics of Ezra and his favorite things - playing guitar and space shuttles.
  

Important: Giving Blood or Platelets?

Please read if you have signed up or are planning to sign up to give blood or platelets.

From the Sloan Blood Bank:

EZRA FINEMAN Needs Blood

3 year old Ezra is currently a patient at Memorial Sloan-Kettering Cancer Center in New York City. His treatment will require regular blood and platelet transfusions.  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.

Ezra and his family would deeply appreciate your donation of blood and/or platelets and requests you ask others you know to donate. Donations not used by Ezra will be released for use by other patients many of whom are children.

To benefit Ezra all designated donations must be made in the Blood Donor Room of Memorial Sloan-Kettering Cancer Center.

Please visit www.mskcc.org/blooddonations for complete information about donor eligibility and the donation process for blood or platelets.

For answers to questions and to schedule an appointment that is convenient for you please Contact:
Mary Thomas 212-639-3335
Donor Relations Specialist
thomasfm@mskcc.org

The Blood Donor Room 212-639-7648
1250 First Avenue (between 67th/68th Streets) NYC - Schwartz Building lobby
Open Every Day
Fri Sat Sun Mon 8:30am - 3:00pm
Tues Wed Th 8:30am - 7:00pm
The process for donating whole blood takes approximately1hour
The process for donating platelets takes about 2 hours
Appointments are necessary- All blood types are acceptable

FREE Donor Parking -
-Somerset Parking Garage, 1365 York Avenue entrance on 72nd Street, N.W.corner

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.