Friday, June 29, 2012

Days +41 to +44: Sleepless in New York

We never expected to get much sleep in the hospital, but some nights are decent and some nights there is basically no point in sleeping. Lately, the nights have been our enemy and there is no rest for the weary. Ezra has been suffering from a very painful diaper rash and it keeps him awake at night. We keep trying to wean him from his pain meds, but then it flairs up and they put him back on a steady flow of pain meds. They also downsized his IV pump because the number of meds is decreasing, which is a great thing, but the new type of pump beeps constantly during the night. Irritated tush, beeping pumps, regular vitals and frequent transfusions equals long, long nights.

Ezra's counts continue to go up. Some days the numbers are down, but the trend is generally up. And today his neutrophils jumped into the normal range! We know they may come back down, but we'll take it.

The answer to the big question still has not arrived - are these neutrophils donor or Ezra's old cells? The results of the chimerism testing are due in this week. We are very anxiously awaiting the news. Prayers and positive thoughts that these cells are donor please!

In other exciting news, Ezra finally saw smoke coming out of the smoke stacks that he sees from his windows! It only took 8 weeks. Guess the factory workers are back from their vacation in Queens. And Dr. Ezra is back on service. He needed to wear his scrubs for his stroll around the floor.

Tuesday, June 26, 2012

Days +37 to +40: Breaking Out...

Into the hallway, that is. With his counts on the up, the doctors encouraged Ezra to start walking the halls at night when there are less people around, provided he is covered with isolation gear. It took Ezra's germophobic parents a day or so to get used to the idea and it took Ezra a day to get comfortable with leaving the room that has been his world for the past 7 weeks, and then we were off.  Right away, Ezra was zipping around the halls while we hustled to keep up.  The fabulous Jessica from Child Life made this awesome space shuttle and hung it on the wall in the hall so that Ezra would have a surprise to motivate him to keep walking.  We are now doing nightly outings.

On the cell front, we had a bit of a set back when Ezra's neutrophil counts dropped enough to cause concern, but thankfully, he is now back on track and the numbers are slowly increasing again. The chimerism tests (the tests that look at whether the cells are donor or Ezra) have been sent and results will be available next week. Please keep thinking and praying that these tests show that the new cells are donor cells. We will keep everyone posted on the results.

Friday, June 22, 2012

Days +35 to +36: Ezra's Blast Off

Today Ezra is officially considered to be engrafted! His neutrophil count was .7 today. It has increased by a tenth each of the past few days, so we are headed in the right direction. We say all of this with hesitation because we want to know that these new cells are donor cells and not Ezra's old cells re-growing. We will not know this information until sometime next week. If the cells are Ezra's old cells, then we are back to where we started, but worse off. The doctors are acting confident that these are donor cells. We decided to accept some of their optimism and started filling in this count calendar, which has been hanging in Ezra's room staring us in the face since we got here.  

Assuming that these are donor cells, we now enter the next phase of this roller coaster ride called transplant where we pray that no graft versus host disease (GVHD) develops. GVHD is when the donor cells attack the recipient's cells. It can range from mild to fatal and can effect different organs of the body.  The one advantage of cord blood is that there tends to be less and milder GVHD. We're praying for none.

Ezra's GI system continues to be a mess. The doctors are not yet sure why. The hope is that as his counts come in and they reduce some of his medications, he will feel better.

Today was an incredible day for another reason. Ezra's beloved music teachers Sean and Cindy from Music for Aardvarks came to jam with Ezra. We wish we had a picture of his face when we said they were coming. Pure joy. They are very special people to make the trek to NYC to help bring some happiness to Ezra.  Mission most definitely accomplished. Love you guys!

So here's to hoping Ezra keeps going up, up, up, up toward a new immune system.

Shabbat Shalom!

Wednesday, June 20, 2012

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.

Monday, June 18, 2012

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.

Saturday, June 16, 2012

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.

Wednesday, June 13, 2012

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!

Tuesday, June 12, 2012

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 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.

Saturday, June 9, 2012

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.

Wednesday, June 6, 2012

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!

Sunday, June 3, 2012

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.