Well we sadly have not made it home yet. Instead, we are here for our 3rd day of WBC harvesting. I had it in my head that we were going to get enough on the 1st round, as a couple doctors had eluded to, and be able to go home the later part of Thursday. They have a range of 6-15 million cells that they need to collect. I since have learned that 6 is to low and the blood marrow transplant doctors- Dr Margolis and Dr Phalen both are not comfortable with that low of an amount. They’d like a minimum of 8 million. Wednesdays collection was like a balloon deflating for me. I finally got a call in the room from Dr Margolis around 9pm that we collected 3.3 million cells. You’re kidding me?! That’s it!? I was so bummed. I don’t know what I expected, I guess, but some part of me thought Cade has proven the odds and the doctors expectations wrong so many times up until now, that he would just do it again. But the reality of it was, he didn’t. It wasn’t a bad thing. The extra “hah! We showed you!” Just didn’t happen this time. It was actually a fairly good collection though, given what his blood count numbers were that morning they had expected to get less than that. So we were sleeping over in the PICU Wednesday night to repeat the harvest Thursday. Dr Margolis called me back shortly after saying he had one more trick up his sleeve.
Cade has been getting Neupogen, a growth stimulating factor making his cells spit out all those immature baby white cells that can turn in to marrow cells. The dose he gets doubled on Saturday and he’s remained on that dose since in preparation for the harvest. Dr Margolis said back in the day, they used to give 2 doses of “G” as they call it, to oncology kids. Doing this in a healthy person with healthy bone marrow for multiple days can cause issues and side effects. However, doing it in an oncology patient who is lacking in bone marrow, is not harmful he explained. So I said we were okay with trying this to see. He went on to say if it works, GREAT! We get enough collection then on day 2 and we are done. If it doesn’t work, well then we know we tried everything and we go from there with what our options would be. The process is fairly simple, as complicated as it really is. They sedate him through a peripheral IV with a drug called “dex” I cant even barley say the whole name of it, let alone try and type and spell it correctly. They can titrate the dose up or down easily depending on his toleration and sleepiness. They don’t need him out cold, but they ideally need him to not move much. If his eyes are open and he’s looking around or watching TV, it’s ok, as long as he’s not moving. The more movement, the more complications can arise and possibly slower the procedure or less effective the collection. In my opinion, I’d rather him just sleep through the whole thing. When the procedure is done, they turn the sedation off, and he wakes up pretty quickly with little to no side effects and is able to eat and drink right away. It takes about 4 or so hours for the harvest process. They use both ports of his central line for the procedure. One port the blood comes out, while the other port the blood is returning in. They cycle his entire blood volume through 4 times total and then it is complete. During the cycles, they are skimming off a specific layer of the blood where these special cells live and collecting them up in to a bag. The bag of magic as I call it. He tolerated the procedure great Wednesday and Thursday. Both days he needed a little extra sedation only near the end as he’d wake up and get upset that he couldn’t eat or drink anything. So we’d sedate him a tiny bit more so make him comfortable.
Our plans in our head were that we would be going home today, Friday. At the end of the round once everything is completely finished and wrapped up, they take a sample directly from the bag and this goes to a special lab. The lab is then able to count every single little one of these cells and give Dr Margolis the count for the collection. Now we knew we wanted 8 million. In the middle of the day, again, based on his numbers from the morning labs, Dr Margolis was not in high expectations that we would collect what we would need. He went from telling me at one point that he would not do this a 3rd day, to then deciding he has tolerated it well and if our numbers are low we would do a 3rd day. If they were really low, then he’d send us home because doing it again would result in even lower numbers and serve no purpose. I’m learning that Dr M quite often changes his mind and plan. He does this, he told me this morning as he laughed at how well I’m getting to know him already, because these little ones are constantly throwing him curve balls and changing the game on him and in the end it is doing what is best for Cade that is most important. So last night he called me about 8:30pm to tell me we collected 2.2 million and that he is going to keep him and do the harvest another day, being today. So here we are today, day 3 of the harvest. Same song and dance. NPO after midnight, starting the sedation drip around 9 am so that he’s sleeping and ready to connect to the machine by 10am. This morning Dr M walked in and said depending on his counts, he may push us to do a 4th day if we need it. At this point I was ready to cry. Every day is taking away from a day we were supposed to be at home. Those days are precious to me as we get maybe 3 of them each month before we start again.
Chris and Rylan came up today. I filled him in on the possibility of tomorrow and he was equally frustrated by it all. It’s been a tearful morning for me. I am overtired and hungry. NOT a good mix if you know me at all. The stupid cafe in the lobby stops serving breakfast at 10:30. I moved Cade over to his bed so Ry and I could run down and get breakfast and coffee and then he was anxious to go to sibling care and play. Cade would not let me leave, he wanted to sit back in the chair with me on my lap and was very upset. He wanted nothing to do with Chris. So I layed in bed with him and had Chris go down with Ry to get him some food and then looked at my watch to see that it was 10:28. There goes my breakfast sandwich. It’s 10:30, we’d been awake since 7:30, I had not had anything to eat nor had I had coffee so at this point I had a headache. But it’s hard to leave him to go eat and I can’t eat in front of him when he is not allowed. So I do what any parent would do. I sacrifice and I wait. Cade finally fell back asleep and I walked over to the HOT unit to get something to eat out of the fridge. As I was shoveling fruit in my mouth a woman walked in, followed by Dr Knipstein. She was in tears. I was already on the verge of tears. She said hi and apologized. I said hi back and told her it was ok I was ready to cry myself. She was trying to pour coffee for herself as she told me that she just found out that it’s back. This is their second time now, they just finished and it’s back. She turned to me in tears as she said this. I tried not to cry, but my heart hurt for her. I said I know I’m a stranger, but do you want a hug? She said I would actually love that, thank you. I squeezed her tightly and began to cry with her as I said how sorry I was that this was happening. We exchanged diagnoses of our children and ages. Hers was 11. I said mine just turned 3. I think that made her sadder for me. She then had to go and unfortunately break this terrible news to her child. Life just isn’t fair. I shared this with Chris and cried a little more telling him I just think I’m having a teary day.
Rylan played for a while in sibling care and then he and I went out to get lunch so that I could just leave and get some fresh air. We sat at potbelly’s together eating. Him with peanut butter and jelly all over his face. Applesauce on his lap. I just laughed and took a picture. Messiest kid ever. While we were sitting at lunch, Chris had stayed in the room with Cade and Dr Margolis came by to talk with him. It turns out that they got a little more than expected when they finished and froze the cells from Wednesday. Given this, and the fact that his blood counts were lower again than they were yesterday, he told Chris he is sending us home today regardless. He does not want to collect again tomorrow. The protocol calls for 2 million per cycle. We have enough for 3 cycles right now, so whatever we get today will be a bonus to use for a larger transplant in the very last round. Should he get selected to do only 1 round, they will figure out what amount to give for that transplant, while keeping some frozen on reserve in the event (God forbid!) we ever would need them. He discussed everything with Dr Knipstein and they are in agreance. I asked if it’s concerning that his counts still go down (for the baby cells) and he said that every kid is different and has a different normal. This is just Cade’s normal. The numbers should go down the further he gets in to the chemo, it’s just what happens. If I understood him correctly. Bottom line was that we get to go HOME TODAY! Hallelujah!
The harvest completed around 3 and they turned the sedation off. Within minutes Cade was crying for me. Amazing how fast they come out of it. Dex is such a great sedation drug. While he woke up and began to eat and drink, we gathered and packed everything up in eager anticipation to leave. Dr Margolis walked in just after 5 and happily told us we got 2 million with today’s collection. So we did it! Cade, in a round about way over the course of the 3 days, managed to still have 8 million stem cells collected. That is awesome. It made me feel so much better! And the icing on the cake was getting to go home. So here we are. Home. Cade does not want to go to bed. Poor thing has basically slept for the last 3 days so he’s wired. I’m sitting here typing this and listening to the monitor. Chris is lying in bed with him trying to get him to wind down. All I hear is cade repeatedly telling him that he wants to go in mommy’s bed. Chris tells him no and he whines “but that isn’t fair!” After about 20 more times of stating his want to sleep in mommy’s bed, Chris has now left his room. Guess we will see how well this goes over. Whether he stays in his own bed and enjoys the night sleep or if its yet another sleepless night in the Winters house. There could be worse things. We are home. I get to sleep in a real bed. Next to my husband. Well maybe. Guess I shouldn’t count my chickens before they hatch. Haha.
Here’s to a weekend of being home and spending time as a family. Monday will be here before we know it, and with it comes the start of Round 3. Thank you all for your continued thoughts, prayers, kind messages, and sweet gestures. We greatly appreciate every single thing being done by everyone. I am now being beckoned to go lay in Cades bed with him….why do I feel like I’m not going to get to sleep next to my husband after all. Goodnight! ❤️
Our Warrior Journey 