Days +9 to +11: Long Weekend Recap

The weekend started with craziness and ended on a positive note with Ezra doing well. Saturday morning Ezra woke up drenched in blood from his central line. He was bleeding profusely from his line. We had to quickly get the dressing off, which is a nightmare without floods of blood, and it took several attempts to get another dressing stick. Mommy and Daddy then had to sit for 2 hours holding a bag of fluids on the site to put pressure to stop the bleeding while we waited for platelets to come from the bank. Scariest couple of hours ever. The doctors are trying to find the right balance with his platelet transfusions and are checking to make sure he doesn't have any clotting issues. To all who are donating - rest assured, Ezra is using those platelets.

Ezra also has been vomiting blood from the mucositis and having trouble swallowing, but today he did well and was able to to even eat graham crackers and peanut butter. TPN started this weekend so that we don't have to worry when he doesn't want to eat. Ezra is calling it his chicken soup because that's exactly what it looks like in the IV bag. It also resulted in the addition of this monstrosity of an IV pole in our room, which goes off every half hour at night. Awesome.

The main concern remains the presence of T cells. His counts have remained basically the same over the weekend with some fluctuation up and down. There wasn't much information to be had with the primary doctors away for the weekend. They will repeat some tests later this week, but it seems like we won't really know anything until the time when his donor cells are expected to start showing up in a couple of weeks. We guess even miracles take a little time (said the Fairy Godmother to Cinderella).

Despite all the craziness, Ezra spent the last two days playing and even shooting some hoops. He has adopted a rock star's schedule - up until midnight and sleeping past noon. Tonight he's jamming to the new song he made up called "Sack of Potatoes," inspired by Mommy's frustration at him going limp when trying to get him in his pjs.

Ezra's hair has also been slowly falling out over the past week. His head is still covered, but it is thin. Sad to watch that curly mop head go away.

And we remained fueled up by the special people who made the trek to the hospital to bring us delicious food for the holiday and special treats for Ezra. Thank you so much!

Day +8: T cells, T cells Go Away

Ezra's T cells are still hanging around. Despite the fact that they don't look functional, the doctors remain concerned because they shouldn't be there at all after all the conditioning he received before the transplant.  So we'll take all your prayers for the T cells to disappear over this long holiday/yom tov weekend.

Thank you.

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.