Days +33 to +34: Slowly I Grow, Tenth by Tenth

Ezra's neutrophils made it to .5 this morning! They went to .4 yesterday and were at .5 today. We are grateful, excited and relieved, but we aren't ready to celebrate quite yet. Two more things need to happen: 1) the neutrophils need to stay at .5 or above for 3 days and 2) these cells need to be confirmed as donor cells and not Ezra's old cells rearing their ugly head. The doctors are acting very confident that these are donor cells, but they will not know for sure until further testing, which is likely to happen next week. No offense old Ezra cells, but we are SO over you.

Ezra is still struggling with GI issues. Now that his counts are going up, they are taking away a couple of the many antibiotics that he is on. We're hoping that this will help with the nausea, vomiting and pain.

His energy is still awesome when he's not snoozing. His nurse let him stay detached from his pumps for about a half hour during a line change today and he had a blast running around the room uninhibited. Daddy raised the bed up high so he could hang from the end of it like monkey bars - take that Physical Therapy!

He is also enjoying being completely spoiled by the nurses here. For the most part, the nurses here have been fantastic - knowledgeable and caring. Ezra's primary nurse is a nice religious guy from Brooklyn who Ezra calls "a silly guy." He has been known to come in on his days off just to check on Ezra - need we say more? Yesterday, one of our other favorite nurses who Ezra has a crush on, gave him a space shuttle t-shirt and a toy Discovery on top of a 747. Ezra is in heaven. Here he is playing space shuttles with Grandpa in his new favorite shirt and jamming as usual.

Days +31 to +32: I Spy Neutrophils

Good news came on Father's Day - Ezra's neutrophils went from .2 to .3. Finally, some movement! Maybe it was everyone's prayers and positive thoughts. We were worried it might go back down, which has happened before, but the level stayed at .3 today. Ezra's neutrophils need to be at .5 or above for 3 days before he is officially deemed engfrafted, so he still has a lot of work to do. This process is going more slowly than expected, but slow and steady wins the race, right?

Speaking of blood, the blood bank has told us that they would like to get more donors on the schedule for the upcoming weeks, especially platelet donors. The longer Ezra's recovery takes, the longer he will need platelets and blood. So please schedule an appointment if you haven't already and continue to tell your friends. We thank you all for truly giving of yourselves and helping to keep Ezra's little body strong.

All else is status quo here. The usual mix of playing, puking, and snoozing. Here's some Father's Day love.

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!