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 :)

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.