Day -7

Day -6

Last day of our first of two chemo’s! It was definitely a better day for Xavier. The best part… Having lunch and play time with his big brother W! He brought us dinner the night before, but got to stay for a long time today!! The boys had a great time. Xavier got to show his big bro his room and all of the cool machines. He even got to show him how fast he can ride his bike around the halls. W was drilling the nurses with so many questions. What is that? Why is that? Inquisitive like his Dad I guess. You’ll never know if you don’t ask the questions, right? We LOVE W and want him here with us while Xavier still has a bit of an immune system, but you could tell his high energy was exceeding what this hospital room had to offer. He did do amazing though.

The boys were so happy to see each other. There is nothing like the love and bond between two brothers. Way deeper than they can even understand right now…

Day -5

It was the first day of the second high intensity chemo. It’s called Cytoxin and it’s supposed to be even more intense than the first. This chemo is just given one time a day at 9am for the duration of one hour. While taking this drug Xavier needs to be weighed twice a day, blood tests twice a day, and pee every 2 hours. This is all over a 4 day period.

The morning started out great! Xavier was feeling good. We sat at the window and ate breakfast in the sun. We’ll take the vitamin D in whatever way we can get it… And then to top it all off, W stopped by again for a little visit! The boys had a great time playing and just being in each others company.

Not 5 minutes after W left Xavier was sitting on my lap and he became extremely ill throwing up. So much so, his whole face became completely covered in broken blood vessels. Don’t get me wrong, I came prepared knowing full well Xavier would be getting sick, but I was not prepared to see his face immediately become covered in red dots after doing so. The nurse came in, saw his face, and got the doctor. The doctor was surprised, but just attributed the broken blood vessels to how violently he was getting sick. I was so glad W was not there to witness everything that went down, or up for that matter.

It took a while for us to get his nausea under control. All of the options cause drowsiness but at this point, we all agreed that it’s better to sleep through the nausea then be awake struggling with it. By night he was feeling good and slept like a baby aside from being woken up to pee every two hours.

Day -4

Yet another day on the yucky chemo. I knew that we had found some anti-nausea medications the day before that were working, but the catch is that the Cytoxen keeps compounding over the 4 days so each day it gets more intense. This means the nausea will keep getting worse. We added yet another drug to help with the nausea after his 9AM chemo dose and it knocked him out. In all honesty, he really did need the sleep. He woke up refreshed and doing great.

He got on his bike for a while going as fast as the first day we had arrived. Then he started playing basketball with John in the hallway until the physical therapist came along and got him to do some additional activities. So yeah, he had a very active afternoon.

After walking and biking through the halls so much over the last week with speed racer Xavier, John noticed that there was a little girl a couple doors down that was there by herself most of the day with quite a few nurses and doctors constantly in and out of her room. It was apparent at quick glance that her room was completely bare with no toys like most of the other young children’s rooms here at the hospital. Our nurse was assigned to both Xavier and this other little girl so John asked a couple questions about the girl in which the nurse answered very delicately because they are not allowed to go into detail about other patience.

Later in the day the nausea caught up with Xavier once again and he just felt extremely yucky . That’s the best way to describe it. I just hate that he has to feel this way. All he wants is for us to hold him close.

One a funny – so very not funny note, Xavier threw up right in John’s face before bed after taking his oral medications. If John didn’t have his mouth closed… yikes. Now I know your asking yourself how this is actually funny. Well john had just rejected my attempts to help and to give him a bucket and from the angle I was standing, all I could see was Johns face and mouth get covered. It was one of those incredibly inappropriate times to laugh, like at a wedding, but I did. Sometimes when you are in a serious situation, it’s OK to use humor and have a chuckle once in a while.

Xavier asks daily when we are going to go home. We tell him that we are going home after we get him better. That we are here with him and we are all in this together. He just simply says without fail, “OK Mommy” or “OK Daddy”.

He is SO strong. It’s truly inspiring.

Here’s to a peaceful night and only 2 more days left of Chemo!

——-

We’ve had a lot of people reach out and ask how they can help… And I have an idea!

Xavier has this little mailbox here at the hospital that he loves to play with. He has cute little pretend postcards he plays with all the time. The other day I put a real letter in there for him and he thought it was so special!
It got me to thinking… How cool would that be for Xavier to check his mailbox and receive letters to open from some of his friends!
I’m sure it would brighten his day to get a little something to take his mind off of what is going on around him.
That being said, we’d definitely would want it to be something super positive and nothing about him being sick, but about something fun. Positive words if encouragement would be ok. Drawing or coloring a picture would be very neat! He’s got lots of white walls around him that he’d be excited to fill with some color.
If you are interested, just pop me a message or email and I can send you our home address if you don’t already have it. Since Xavier’s big brother Westin is at home I can put him in charge of collecting the mail for his brother. He would think that was pretty special to be able to do something nice for his brother too!
A cute way to address it would be:
Xavier c/o Westin Makus

Thanks again for all of your continued support. We can’t thank you enough!