Day +47: Bad News, Bad Day

The chimerism results are in and they are not good. The neutrophils that have been growing are only 20% donor. The rest is Ezra. The percentages of donor cells for the other type of cells are even lower. The ideal scenario would have been 100% donor cells. Or something closer to 100%. Not 20% - that won't cut it. Despite the doctor's assurances, the chemo failed to kill off Ezra's old immune system. Despite their confidence that the cells growing are all donor cells, that is not the case. 

They are telling us that it is still early with a cord blood transplant and that the percentage of donor cells may increase with time, and that we just have to wait and see. We do know from our own research that with some immune deficiencies, mixed chimerism is fine. All the patient needs are some properly working cells. It may be that if he stays a mix of donor and Ezra it will be just fine. Or maybe he will reject the donor cells entirely in the end and we are left with nothing. The plan for now is to keep repeating the studies periodically to see if things change, but ultimately they wait 6 months before determining whether to do another transplant with one of Ezra's crappy backup options.

That was the news we woke up to. The day then continued on with Ezra needing surgery to replace his central line, which had developed a problem. We decided to allow them to do a bone marrow aspirate during the procedure in case that gives us any additional information. We were back for about an hour and the surgeon came back to tell us that the x-ray showed that the line was not in place and he needed to go back to surgery. This time the procedure was done in the regular OR guided with an X-ray machine so they could ensure proper placement. We have held Ezra in our arms as he was put to sleep more times than we care to remember. It never gets easier.

For now, we are just focused on managing Ezra's pain and hoping he isn't too traumatized.

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.

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.

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!

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.