So it’s true that some good things just take time. And while we were being as patient as possible, when Xavier’s ANC and white blood cell count started to taper off and make more dips than rises, I would be fooling myself to say I was not concerned. We were all waiting for the big jump in his numbers and it just was not happening. I was getting nervous and didn’t know what the next steps would be.

On the morning of day +23 the attending doctor came in and said that they were going to be giving Xavier a dose of GCSF (Granulocyte Colony-Stimulating Factor). This drug stimulates the bone marrow to produce granulocytes and stem cells and release them into the bloodstream. Basically, this drug would be giving Xavier a huge artificial bump in his white blood cells therefor increasing his ANC. I was not expecting this… I didn’t know they had been contemplating GCSF for Xavier. The doctor said that he typically would not give this drug as early as day +23 but because Xavier was doing so well otherwise, he felt it was time. You could tell that the doctor was still a bit perplexed by why Xavier’s ANC had not yet got the big boost organically, but when we mentioned Xavier’s lack of appetite and tummy issues he almost looked excited, like he may have solved the puzzle. He felt this was a possible sign of GVHD of the gut which could easily explain why Xavier’s cells had yet to make the big jump. The doctor decided to set up and endoscopy to examine Xavier’s stomach, digestive tract and get a biopsy to test for GVHD. This procedure would be a couple days out.

Come the next morning Xavier’s ANC jumped for the 400s to the 4000s. That was a very “robust” as the call it, jump in ANC. They made certain that we knew that because it was an artificial jump, his ANC would be making its way back down. But, hopefully this will encourage Xavier’s own cells (or should I say W’s cells) to be on the rise. Just as I said some good things take time, well… some good things just take a little nudge in the right direction. Well, in our case this was a big nudge.

So with Xavier’s ANC now well above the threshold of 500, the doctors decided to give us a 4 hour pass!!! This means getting unhooked from his machine and leaving the hospital! This was Xavier’s first time outside in over 34 days!

The nurse unhooked Xavier, we popped on sunscreen, signed liability paperwork, and we were off! Xavier was so excited. We put some gloves on him so he could finally push open that door he had asked to go through so many times before. This time we could finally say YES! It was finally Xavier’s time. He made his way through the door and to the elevator where he got to push the button to the lobby and we made our way outside.

Immediately, it was like Xavier was experiencing everything for the first time. It was as if he had a whole new appreciate for the small things we normally take for granted. It was a truly beautiful moment I will never forget.

Xavier stepping outside!

Day +25 was a chaotic, stressful, frustrating, and beautiful, BEAUTIFUL day! Yes, ALL of that.

There are three important criteria for getting out of the hospital after a bone marrow transplant…

1. No fevers within 48 hours, CHECK. Hadn’t had one since the day we were admitted due to Xavier’s central line surgery.
2. Keeping down medications, CHECK. As long as it is pill form we are golden!
3. An ANC over 500 for more than two days, CHECK. Thanks to GCSF, but who’s really keeping track anyway…

So yes, the above means exactly what you are now thinking… Xavier should be close to going home! We just had one thing to get through first. The endoscopy procedure to look for potential GVHD. The procedure was not scheduled until 4pm. This meant Xavier could not eat the whole day. It was so ironic that we were getting this procedure done partially because he was not eating and then Xavier wakes up hungrier than I had ever seen him. Seriously…. Of course he would want to start eating the day we stopped encouraging it. He kept asking the nurses for peanut butter. ALL DAY!

4pm and they finally came to take Xavier down to his procedure. They did not make him ride on the bed which I was SO thankful for. We were able to just walk beside it since he was feeling great. They also did not make him wear the gown which made life so much easier on me and John. Few! Xavier’s procedure went great. They allowed me to come back to the recovery room because Xavier doesn’t always wake up from anesthesia well. When Xavier and I got back up to our room everything was ready to go… the doctor just needed to make sure Xavier was recovering well from his procedure, which he was! So just like that we were on our way home to W!

W had a beautiful welcome home poster and balloons for his little brother. Xavier was ready to be home and W was so very ready for us to be home with him as well. He was so happy. We were all so happy.

I’m not going to lie, I was completely overwhelmed because we now have so much to do ourselves for Xavier’s care, but we can do it! Loads of medications, nightly fluids through his central line, daily saline and heparin flushes, lots of appointments… BUT all so worth it to be home. Again, we can do it!

It turns out that Xavier does have a very mild case of GVHD of the Gut. The doctor does not want to start him on prednisone just yet as she thinks we should only start treating it if it flares up. We are ok with this and will just continue to monitor it incredibly closely. The doctors also reiterated that while Xavier does have an ANC now, all of his cells are incredibly immature and will be for quite some time. It’s like they have been completely re-booted and they are fragile. His risk for serious infections are still extremely high. That being said, we must have to be incredibly careful… and we will be.

Today, Day +28 was another big day because Xavier went in for his 28 day bone aspirate. This is the first time since transplant that they are testing him for signs of his CML and also his blood chemistry to see how well Westin’s cells have taken over. We get the results next week and I am already incredibly nervous. But so very hopeful!

It has all been leading up to this…

 

While I have never considered myself a huge math person, all I could think about over the past week is numbers! Any numerical value greater than zero is a beautiful number when you are waiting for engraftment. Every morning between midnight and 4am the nurse takes Xavier’s blood. Meanwhile, John and I just lay there with anticipation until they come in with the spreadsheet of results.

There are a few very important numbers on this highly anticipated spreadsheet. One being Xavier’s platelet and red blood cell counts. Those numbers will tell us if Xavier is in need of a platelet or blood transfusion. We also look at his liver enzymes to make sure they are still steadily decreasing from the dangerous levels they had hit a few weeks back. Then… we turn the page to find the ANC (Absolute Neutrophil Count) and white blood cell count. These numbers are critical for a couple reasons.

An ANC over 0 and WBC of over <0.2 tells us that W’s cells are starting to appear. This is the first step toward engraftment. In addition, getting an ANC is the first step to getting Xavier out of the range for potential very serious infections.

A normal ANC is about 3,000-5,000. An ANC below 1,000 means your child is at greater risk for infection. When the ANC is below 500, there is an even greater risk of developing a serious infection. After chemo, all patients are at the big goose egg, ZERO, until their ANC comes in.

OK, I won’t keep you in suspense any longer. I am happy to report that W’s cells have made their debut! John was the first to read the results and he immediately blurted out the big news. The feeling when I heard the number, ANC 120, felt nothing less than amazing! If I had a bottle of Champaign next to me I probably would have popped the cork! Well, maybe that would have been a little much considering we are in a children’s hospital and it was about 4am, but that is how the moment felt. And now, I can’t wait to celebrate all of the many milestones to come. This is just the first and we have a long way to go…

Since getting our first ANC, Xavier’s numbers have really fluctuated up and down and we are still waiting to hit the highly anticipated 500. The doctors had thought we may be there by now, but they are not discouraged as we are close. Today we sit at ANC 407. Xavier’s big brother W has been doing us a big favor by charting a record of Xavier’s daily ANC progress. It’s cool for W to know that his cells are starting to take hold and the pattern in which they are going. It’s nice to be able to keep W involved in any way we can. I can’t wait to get home to him!!! Can you tell I miss him?!? Just saying…

So along with constantly thinking about numbers, we are now thinking about getting Xavier on to oral medications and off his “machine”. It’s been a gradual process over the last week. But fast forward to today and I am happy to report that Xavier is on every oral medication that he can take. Anti-biotics are still IV until he has an ANC of over 500. He is swallowing about 12 pills a day, including waking up for one of them at 1am like a super star! I’d say that is damn good for a 3 year old. He is also now off his IV nutrition and his eating is starting to pick up a bit. Slowly but consistently he’s eating more. Because of the chemo he still has a very weak stomach and his taste buds are way off, but he’s a trooper. Most kids this age going through all that Xavier has been through would be using a feeding tube in the nose. I’m not going to lie, there have been times where I thought this could make it easier on all of us, especially when we are giving oral medication in the middle of the night, but I then think we have already made it this far without one… We just continue to take things one day at a time.

Xavier still gets sick periodically if he eats something too fast or the oral pill goes down the wrong away, but his stomach is getting stranger and stronger every day! Because he is taking more oral medication he has had lots of time to run around the halls and hang out with his nurse and doctor friends. He even races his friend that comes around on the Zamboni every day to clean the floors in the hall. They have become good pals.

Xavier has also befriended a few of the women at the front desk. They get him paper and he draws them pictures which they display for all to see. While Xavier’s made a lot of great friends, his time away from his “machine” is getting us even more anxious to get him home.

I think the bone marrow transplant team is also feeling that Xavier will be ready to head home as soon as his ANC is over 500 for two days. We have already had multiple meetings with the discharge nurse. So we will be good to go one that front when it’s time to depart. Yesterday, we also had a meeting with Children’s Home Care.

Even though Xavier will be leaving the hospital, he still with have his central line. It will just be our job to take care of it. In addition, Xavier will need to be hooked up to a portable “machine” every night for fluids. There is NO way he could reach the daily allotted amount of 42oz of liquid intake himself. He has to have this amount of fluid because of one of his drugs, Tacrolimus, which helps prevent GVHD. He will be in the Tacro until day 100. Which also means we will be hooking him to nightly fluids until day +100.

I didn’t know exactly what to expect when the woman from Children’s Home Care came in. I never expected that we would be in charge of so much at home! Until day +100, I am his nurse. Well, as a Mom you are always your child’s nurse, but I am like a full-fledged nurse!!

I think John and I were both overwhelmed at first by the teaching. I am OK with flushing and heparin locking Xavier’s lines daily. But doing his nightly fluids will take some getting used to. It is not only important to do every step correctly, it is imperative to keep everything incredibly sterile because we are directly accessing the lines to his heart and large veins. No pressure, right? We both had to practice before the teacher would sign us off. Don’t worry, we practiced on Chester, not Xavier. John did great. I did fine. But I think for the first couple of days we will work together to make sure we don’t miss any steps. I am also fine with admitting that I will have the Children’s Home Care on speed dial!

Anyway, it will be overwhelming at first, I have no doubt,  but I know it will get easier. Now I understand even more why day +100 is such a huge milestone for a bone marrow transplant patient AND their care givers. None of this is easy, but we do it. And as we do it, we are grateful to be at this point in time and moving forward.

I can’t wait to report that we are above ANC 500!