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!