Days +28 to +30: Stalled

There has been no growth in Ezra's neutrophils since the small increase on Tuesday. The level hasn't decreased, but it hasn't gone up either. The doctors are still acting optimistic and saying that sometimes the growth is slow. Despite their assurances, we are nervous. We would certainly feel better about giving it time if we were seeing some growth, but it's hard to be patient when the stakes are so high. We are pushing towards the outer range of days for expected engraftment and it's a place we would prefer not to be.

Ezra continues to have more and more stomach distress and rashes that come and go. They think the symptoms are drug related, but the medications aren't optional, so we just have to deal. The days are really starting to drag for all of us.

Today was Mommy and Daddy's 10th anniversary. We were hoping for a gift of some neutrophils. Maybe tomorrow. So we had some cupcakes from Bubbe and Zadie and decided to celebrate next year.

Days +24 to +27: Waiting

After starting to despair over the lack of neutrophil growth, we finally saw a tiny increase in Ezra's neutrophils on Tuesday. The numbers did not increase today, but stayed the same. The doctor had scheduled a bone marrow aspiration for tomorrow to check the marrow directly, which would tell us whether anything was growing, and, if yes, whether they are donor or Ezra's cells. This afternoon, she canceled the aspiration because the results of the repeat study looking at Ezra's T cells came back showing 17.5% donor cells, up from 10% last week. She was happy enough with that result that she wants to put off the aspiration and wait until next week to see what the neutrophils are doing. We still need those neutrophils to grow - that is what determines engraftment and we need them to be donor neutrophils. We're ok waiting for them as long as progress is being made and Ezra is staying healthy.
On Sunday, Ezra turned to us out of the blue and said, "I feel my new cells growing." It was kind of eerie and we're not sure what he was feeling. We have been saying for a long time that Ezra is always right because he pretty much is always right. We are praying his track record continues with this one.
Ezra is still dealing with some tummy troubles, but otherwise is doing well. His sleeping schedule is totally screwy with him sleeping a lot during the day and then up until 1:00 in the morning. It's hard to break him of that schedule here where night and day aren't so different. Here's Dr. Ezra hard at work and with the space shuttle he crafted specially designed with 5 booster rockets.
Please continue to pray for new neutrophils!

Will the Donor with the Super Platelets Please Stand Up?

First, we want to thank every single one of you who has donated blood or platelets for Ezra. You are all playing an important role in healing Ezra and you have our deepest gratitude. And to everyone who couldn't donate, thank you for spreading the word so much that the donor room has been flooded with donors for Ezra.
Ezra had a platelet transfusion on Saturday that has been holding much longer than his other transfusions. Since he is receiving directed donations, the doctor asked the blood bank to track the transfusion and ask the donor to donate again. We were told that the donor has agreed, but due to HIPAA rules, we aren't allowed to know the identity of the donor, even though that person donated specifically for Ezra (way to go HIPAA). So, donor with the super platelets, if you're reading this, please contact us at help4ezra@gmail.com so we can thank you over and over again!
And we are hoping that other donations will be equally as super! Thanks to all again for hearing the call and answering it.

Days +21 to +23: Good Days and Bad Days

Yesterday was a rough day for Ezra. He woke up vomiting, with a rash and in a lot of pain. No one was sure of the cause - maybe a reaction to medications, blood products or infection. Infection is the biggest worry. The longer Ezra remains without an immune system, the more susceptible he is to serious infection. We ended up having to give him a drug to sedate him because he was in so much pain. It was hard to watch him experience so much pain. This morning he woke up and the rash was gone and he was back to his playful self. So far the tests for infection that have come back are negative and they have added an antihistamine around the clock in case his symptoms were an allergic reaction to a medication or blood product. The doctors are watching him closely.

There is still no progress with his neutrophils. They are nowhere to be seen. The doctors are saying that it is ok because cord blood can take so long to engraft, but that is no comfort on days like yesterday when everyone was fearing infection. The news cells need to grow and the sooner, the better.

Ezra is still doing plenty of playing, but he has been more tired lately. He is sleeping for bigger chunks of the day, leaving Mommy and Daddy to fight over who gets dibs on the iPad. His little body is dealing with a lot right now and we're happy for him to rest, but it's more fun when he wants to play.

Days +18 to +20: A Little More Good News

Word came today that the repeat study looking at the T cells to see if they are Ezra's or the donor's T cells came back showing that the percentage of donor T cells has doubled to 10%. The doctors don't know if it is Ezra's T cells dying off or the donor cells growing. We obviously hope that it is the donor cells increasing, but either way, this is good news. No neutrophils (the cells that typically come back first) have appeared. The neutrophils are what determines engraftment, so we really need them to start growing. Although the average time for engraftment for cord blood is 21 days, his doctor today reminded us that the range is large and it can take much longer to see engraftment. Point being, we need to be patient.

Our job in the meantime is to continue to keep him infection free and happy. His tummy has been bothering him a bit, but that seems to be from the medications and not an infection. Otherwise, his spirits are amazing. He has so much enthusiasm for everything he does here whether space shuttles, volcanoes or arts and crafts. He was even belly laughing in his sleep last night. The downside of him being so active is that we have to constantly keep him entertained - movies don't cut it for this kid. We are making good use of all the wonderful gifts that have arrived so that we have new projects and toys to keep his interest. Here are some pictures of the Superboy hard at play practicing his karate blocks, in downward dog yoga position and playing some hockey-golf.

Grow cells grow!

Days +15 to +17: A Little Bit of Positive News

On Friday, we received a little bit of good news about those lingering T cells. The lab looked again at whether the T cells were Ezra's cells or the donor's cells. This time, there were triple the number of donor T cells from the prior week's test. The doctor says this is good news because it is an indication that the donor cells in the marrow are growing. However, the donor cells are only 5% of the T cells present - the rest are Ezra's cells and could potentially fight off the donor cells. We're definitely not out of the woods yet by any means, but we'll take this little piece of good news.

Day +21 is the average time it takes for the first cells to grow back, neutrophils, to appear for a cord blood transplant. It can sometimes take more than 30-40 days for engraftment with a cord blood transplant. We're obviously praying that the neutrophils appear as soon as possible. Thursday will be day +21, so let's start thinking grow, cells grow for the week ahead.

Ezra continues to amaze us with his resiliency. He is absolutely making the most of being stuck in a tiny room, and enjoyed spending lots of time playing with Grandma who was back in town this week. His latest interest is volcanoes. When Jessica from Child Life heard about his new love, she proposed we make a volcano. And soon enough Ezra was making vinegar and baking soda eruptions over and over again. This is the new daily activity in Room 922. Pretty amazing what can be accomplished in a tiny hospital room. 

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 :)