Monday started with boys day at the barber shop! They let me tag along too 🙂 All three boys got their cuts at the same time. We knew Xavier would be getting the closest buzz possible. I felt pretty well adjusted to the idea. I would much rather get the buzz than watch his hair slowly fall out from the chemo. Not going to lie, John and I both had tears in our eyes. Not because of the loss of Xavier ‘s hair, but because of the look on both of our boys faces. No words were necessary to know that they knew this was not a typical hair cut. As difficult as this was, I can’t help but imagine how hard it would be on a little girl…
After the barber, we went to our final appointment at SCCA. Not much to report except Xavier looked great and had no signs of cold. They said “see you on the flip side” as we will not be seeing our SCCA team again until we are released from the hospital. Love them, and can’t wait!
Tuesday morning came early. We got to the hospital at 8:15 to check-in for Xavier’s surgery to have his Hickman Line placed. A while later they came and took us back to prep Xavier for his procedure. Xavier was just fine until they brought in the gown… He was so mad. REALLY mad. We finally got it on and the surgeon came in. Xavier was still mad by the way…
The surgeon explained the procedure to us in depth. That is when I realized –Â shit just got real. And with that, I new I could not hold it together to take Xavier back to surgery. Only one parent can stay with Xavier until the anesthesia does it’s job, so John went. He definitely stepped up and held things together when Xavier needed him most, and me too.
About a half hour later the pager went off to let us know the surgery was complete. We had a post-op meeting with the surgeon and he said the Hickman Line placement went great. After the meeting, we got another page that Xavier needed me in recovery. I went back and the nurse was holding Xavier, very distressed. She gave him to me and he started to settle down. Understandably, he was very disoriented. Plus, they had him in a crib AND a diaper. No wonder he was pissed!
They had given him morphine for pain immediately after waking up from surgery so after he relaxed a bit in my arms, he fell asleep. I then carried him to his new room. His home away from home for the next month and a half to two months.
Now which one of these boys should be tired from surgery?
We got settled in pretty quickly. John brought in all our stuff while Xavier was still asleep in my arms. Xavier woke slowly and we explained his new line in his chest. No more pokes with this nifty thing! Xavier was fine, he totally just rolls with things.
The first night was not what we had expected. Xavier spiked a fever in the middle of the night. The nurse immediately drew blood to get cultured to make sure there was no infection. Since we had not started  chemo yet, just anti-seizure medication, she could give him Tylenol to lower his fever. She started doing vitals every hour, instead of every two hours, as that is protocol for a patient with a fever. They also started him on antibiotic. By morning the fever had subsided and we were ready to start the first round of high intensity chemo.
Just hangin’ out building a fire truck…
 Day -9
Busulfon is the first chemo. We take it every 6 hours for a four day period. It is a two hour drip. They give him lots of other medications with it to prevent side effects as best as possible for now. After his 6AM 2 hour drip of Busulfon, they take blood about 6 different times to see if they need to adjust the does. Â He ended up needing it increased.
Xavier was tired from the night before so we had a pretty low-key day as far as activities…
He refuses to eat the hospital food. I mean literally he won’t even try it. I guess I don’t blame him. Today he had Starbucks egg and cheese english muffin for breakfast, lunch and dinner! At this point if he likes it and he’ll eat it, that’s all that matters. They believe eventually he will not want to eat or drink so he will just get IV nutrition. The crazy part is that he has actually gained wait since being here at the hospital. Apparently you get your most accurate body weight between the hours of midnight and 4AM, so they wake him for that every night.
Overall a good day.
Day -8
No fevers so we had a great night sleep. Well, good considering he had chemo at midnight, vitals every couple hours, weight taken at 4AM , oral medications, and then began chemo again at 6AM. But again, all that said, it was a good night. A good night made for a great day. We brought his bike from home. He had found one that he really liked at the hospital, but the little boy down the hall has been hiding it in his room. 🙂
Xavier is putting up a huge fight because he does not want to take a shower. That is definitely our biggest and really only struggle each day.
We continue to miss Xavier’s brother W like crazy! Xavier keeps asking when brother is going to visit. I am glad that we do get to be honest and say “soon” because his brother will be brought to our room after his marrow donation on the 12th. We also may bring him to the hospital on the 11th for John’s birthday.
I know W is missing Xavier, but I sure am glad he’s having a great time at home!
 W’s friend currently caring for him at home is exactly what he needed right now. She has been keeping him busy with fun activities and keeping us connected with him so well.  What a huge weight of of our shoulders knowing he is being so well cared for!
All considered, things are going great so far. Xavier has endured so much all ready and he’s done incredible. I know that they anticipate things getting more difficult for us, but we’ll take it one day at a time. Like the doctors said on their rounds today, he looks “perfect”. He does, and I’ll just look forward to hearing that again tomorrow.
Day -7 has just gotten underway…. one day closer to cancer free!
One thought on “Day -10, Day -9, Day -8”
Me and the girls pray for you guys every night
X and W are such brave and strong little boys!
Pls let us know if there’s anything we can do to help!
Hoping and praying for a quick recovery…stay strong!
much rather get the buzz than watch his hair slowly fall out from the chemo. Not going to lie, John and I both had tears in our eyes. Not because of the loss of Xavier ‘s hair, but because of the look on both of our boys faces. No words were necessary to know that they knew this was not a typical hair cut. As difficult as this was, I can’t help but imagine how hard it would be on a little girl…
All considered, things are going great so far. Xavier has endured so much all ready and he’s done incredible. I know that they anticipate things getting more difficult for us, but we’ll take it one day at a time. Like the doctors said on their rounds today, he looks “perfect”. He does, and I’ll just look forward to hearing that again tomorrow.
Me and the girls pray for you guys every night
X and W are such brave and strong little boys!
Pls let us know if there’s anything we can do to help!
Hoping and praying for a quick recovery…stay strong!