Day +15: Prom

Yes, prom. Sloan-Kettering held its annual pediatrics prom today. They bring in dresses and tuxes donated by stores and designers for the patients and hold a dance with food in an auditorium. Patients in isolation, like Ezra, can't attend, so they bring the party to the rooms. Ezra's friend Jessica from the Child Life Department decided that Mommy needed a gown (or two...shhh, don't tell anyone) and brought an arm load of dresses to choose from. Ezra picked out this purple gown (purple is his favorite color, so it was an obvious choice) and Mommy and Daddy put on tiaras and crowns to get festive. There were some wild dance parties and glow sticks and we had a wacky version of prom in Room 922. Only hope that Ezra doesn't remember this prom so that in 15 years he won't show up at the hospital looking for the party.

In medical news, Ezra continues to do well. He did come down with a fever Tuesday night, but it faded quickly and so far all infection tests are negative. The mucositis is doing better. Despite this, he has not been willing to eat the past few days. We suspect that he is filling up from the TPN, although he may also feel funny inside, but not be able to express it.

T cells are still around and remain at the same level. They are repeating the tests from last week to see if they give us any additional information and are waiting for results. We are still hoping they disappear and are getting more concerned as we approach the time period when the new cells are supposed to start growing.

Ezra is still very active and plays most of the day on his mat. He's been on a Puff the Magic Dragon binge (his all time favorite song) after getting a beautiful pop up version of the book from Vicki and Andy. The song stays on repeat for hours. Whatever makes him happy :)

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.

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.

Days Negative 8 and 7: Off to a Rough Start

The past two days have been difficult. Ezra is still in a lot of pain from his line. They keep increasing the pain meds, but it hasn't done much to help. The line they put into Ezra is a new type that they don't have much experience with, so we are starting to get nervous that there's a problem with the line because the pain should have subsided by now. We will see what tomorrow brings.

Then last night Ezra's blood pressure was measuring low. The resident and fellow decided to increase his fluids by a lot to bring it up, which resulted in massive amounts of pee everywhere during the night in between hourly blood pressure checks. No one got any sleep. Then in the morning his fabulous daytime nurse came on shift, found out about last night's issues, asked which cuff was being used, said that was the wrong one and, voila, normal blood pressure. To top it off, when his doctors heard about the blood pressure issues, they said the resident was wrong and the measurements from last night were not too low for someone his size. Guess we have some learning to do about how teaching hospitals work.

Vomiting from the chemo also set in today and Ezra is getting very tired from everything going on in his little body. So far, the vomiting has responded to meds and he had a decent appetite today considering the circumstances.

The presents have started to roll in and we couldn't be more grateful! Ezra even got a new guitar from our special friend Gail and family! Brightened the day for all of us!

Here are some pics from PT and OT and music therapy.

Day Negative 9: Guitars, Vacuums and Pain

Well, today was not a good day. The pain set in from the central line surgery and Ezra was inconsolable for much of the day, despite the use of a good amount of pain medication. We are hoping for a better day tomorrow before the side effects of the chemo set in.

Despite that, we had two good distractions. First, Musicians on Call stopped by with their guitars and we jammed to Puff the Magic Dragon and some Music for Aardvarks songs. Nothing makes Ezra happier than holding a guitar. The musicians told us that they were blown away by his guitar skills. Only problem is that he loves it so much that he didn't want to give back the guitar...he is still a 3 year old. Another thing Ezra loves is vacuum cleaners. Mommy and Daddy gave him a vacuum cleaner for taking his oral meds and it got him out of bed and walking around. Unfortunately, we didn't realize that it really has suction power and it's picking up plenty of dirt off the floor. Swifter Wetjet is now being bought to keep up with our crazy germaphobic standards.

Day Negative 10

Admission day went as well as could be expected. Ezra had surgery to insert his central line and he did great. He is happy knowing that he no longer needs to get boo-boos or wear arm boards. He even helped the nurse draw his first bloodwork from the line. Kind of odd, but he liked it. We are starting to settle into the room. Ezra spent the day playing with every piece of medical equipment he could get his hands on and he calls himself "Dr. Ezra." The doctors and nurses are really amused by this - us, not so much. The first day of admission is considered day negative 10 and you count up until transplant day, which is day zero, and then you continue to count up the days. His first dose of chemotherapy to take down his immune system and make room for his new cells will be administered tomorrow at 6:00 AM. Many of you have been kind enough to ask for a mailing address. It is: The Ronald McDonald House of New York C/o Ezra Fineman Room No. 707 405 East 73rd St New York, New York 10021 Thanks for all the messages of support - they mean so much to us!