Last week was rough. We we were at the hospital almost every day preparing for Eli’s stem cell collection. We were also still giving him his daily injection of neupogen to boost his white counts before collection. (By we, I mean Chris. Thank you, honey, for doing that awful job.) Eli didn’t want to eat anything. He was still coming off feeling pukey and yucky from chemo. On the days he DID want to eat, I had to keep him NPO (no food/drink) for hours to prepare for sedation for his collection. We thought collection would be Tuesday, but his counts weren’t ready for collection. That was frustrating. But, there really is no good way to plan for this procedure. Everyone’s body responds differently. We just had to wait and try again on Thursday.
I had also been agonizing (since the prior week) over the fact that Eli was scheduled for a bone marrow biopsy before his stem cell collection. It just wasn’t sitting right with me, and I found myself approaching every person possible on Eli’s medical team questioning this procedure. We were told from his oncologist that his stem cells would be collected no matter what. (Remember, he was supposed to be collected after cycle 2 but based on the biopsy, they decided to wait.) In my mind and in my heart, I just didn’t see the need to put him under sedation, keeping him NPO another day (especially when he is underweight. Why would it be a good idea to withhold food from him for 3 days in one week?) Why put him through a procedure that wasn’t technically required? Would it have been nice to do the biopsy to know how his marrow is responding to chemo? Absolutely. If the results of this biopsy would alter his treatment plan, would we do the biopsy? Yes. But the strong feeling in my gut kept telling me that it just wasn’t necessary or worth it to put him through this procedure if it was just for a “nice to know” reason. In the end, the team agreed that the results of the biopsy would not change his course of treatment, they understood my concerns, and agreed to skip the biopsy. HUGE sigh of relief for this mama!!!
The stem cell collection happened on Thursday of last week. It was a long day. Of course, he was NPO again and very, very hungry and crabby. Crabby is actually an understatement. We arrived for labs at 9:00 am and it was hours before we knew he was ready. In that time, there was a lot of yelling, kicking, scratching, and crying. We were taken over to the PICU for the procedure. A very nice woman named Jean from the Blood Center of Wisconsin was waiting for us with her big machine. The plan was to get Eli sedated through his CVL line so he wouldn’t have any “pokes” from an IV. Our little fighter really threw the nurses because it literally took him about an hour and a half to fall asleep. The sedation med called dex (dex-something-big-long-and-fancy that I can’t remember. But they referred to it as dex) was cranked up to it’s max for his size. They were pretty surprised. But he finally got sleepy-ish.
Once he was sleeping, they tried switching the dex to an IV in his arm, because both of his CVL lines were required for the collection machine (blood out one line and back in the other.) He woke up flailing and crying the moment he was poked. The vein rolled or something happened. I’m not quite sure, but it didn’t work. It took forever (again) to get him relaxed and sleeping. The did add in another med to help relax him a little more.
Writing this, it doesn’t really sound that traumatic. But, being there for all of this was another story. At least, for me. We had already been at the hospital for 6 hours at this point. He was hungry and thirsty. I was hungry and thirsty, because I don’t eat or drink in front of him when he can’t. Watching the IV fail brought back a flood of terrible memories for me of awful IV experiences I had during my emergency infection surgeries. Nurses and even the anesthesia team tried over and over unsuccessfully to get IV lines in my arm. And you know what? It really hurts. Big time. I had a huge lump in my throat watching him go through this and thought I would lose it at any moment. I know the nurses were doing their best and Eli was not being an easy patient. But I could not, and would not, watch him get poked multiple times as they tried to get an IV to work. This was NOT the way it was supposed to go down. They had all assured me that he would not feel the IV because he would be sleeping. Except, he wasn’t sleeping. And he was definitely feeling it. I asked for an anesthesia team because we needed to get it in for sure on the next try. Several minutes later, there were two women in flight suits standing in the door from the transport team. They put his IV in flawlessly. He slept through it. And I could finally breathe. For the first time that day.
The collection only took 5 hours. That was a total shocker. We were prepped for a lot longer than that. His lines worked wonderfully so it went very smoothly. The hope was to collect 15 million stem cells. We found out the next morning that 31 million stem cells were collected. We definitely got enough! No need to go back. Again, a huge weight off my shoulders. Unfortunately, some kids have to go back multiple times (I’ve heard of up to 6) to collect the necessary amount. This doesn’t necessarily tell us that his marrow is clear. But it does tell us that his cells are able to move easily through his marrow. (Which, if you are reading between the lines, would indicate that his marrow is not full of tons of disease. Which is a bit of good news to hold on to.)
I can’t believe Eli’s stem cell collection was one week ago. Every time people ask how things went or check in, it reminds me to post an update. But this week, we’ve been so busy being delightfully normal and having fun that I just haven’t gotten around to it. Eli was supposed to be inpatient for chemo this week (Tues, Wed, Thur). At his lab check on Monday, we learned that his platelet count was too low. So they gave us the week off. Initially, I was nervous and frustrated to get “off track.” But I was assured that this happens regularly. It is his little body’s way of saying “I need a break.” I quickly realized just what a blessing this little break is. He came off of a very rough several weeks where he was sick and weak and tired and crabby. This week, he is happy. He is playing. He is EATING! Our little peanut needs to put on weight. We are hoping that this week he is getting strength, putting on weight, and actually enjoying some food. We went to the Milwaukee Public Museum last Friday to see the dinosaurs (among other things.) We spontaneously went to the Brewer game last night. We are hoping to go to the zoo tomorrow. It’s been fun being able to go places and do things he wants to do this week while he’s feeling good. Chemo #4 should begin next week Tuesday – Thursday. So right now, we are savoring all of his good days.
Here they are…31 million stem cells. And below that, the collection machine.