Daily Archives: June 9, 2015

Latest updates on Xavier

Day -7, -6, -5, -4

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Day -7

The extreme metal taste from chemo has arrived! Sooner than I thought it would. Xavier woke up this morning with extreme metal breathe. It doesn’t really seem to bother him except for the fact that everything is starting to taste yucky to him. He still likes chocolate milk though. 🙂 And grape bubble gum. Hey, me too!
So it was not the easiest day for any of us. And honestly, it really has nothing to do with his specific treatment here. Xavier has been extremely constipated ever since we entered the hospital. Not my favorite topic to talk about but I’m sure parents out there understand that this can be really difficult for a child. For the past couple of day he’s been taking multiple medications to help him. He got to the point where he just didn’t want to go. At first they were a little weary of giving him too many medications for this because the opposite issue should be kicking in very soon because of the chemo. But they eventually figured out that it was pretty serious. Xavier’s tummy hurt so bad and he was just so mad at John and I for trying to get him to go. It crushes me to see him so angry because that is a feeling no child his age should ever experience. John and I were getting nowhere. Finally, the nurse came in and kindly told Xavier that if he goes, he could push the call button and she would bring him a prize. About 45 minutes later we had success. Never thought it would be something to celebrate but oh man we were happy. Xavier’s mood changed drastically for the better. He was his old self. The nurse brought him in some tools, so he was happy! The nurse told Xavier that she was holding the batteries to his drill hostage until he took a shower. 🙂 She then suggested that we talk to the child life specialist about making a sticker rewards chart. This has never been something we have used at home in the past but I thought it may be a good idea, and some fun for Xavier! It’s crazy; Xavier doesn’t need extra motivation to do the hard things. He takes his oral medication, he is extremely cooperative and helpful with the nurses, he does his mouth care. BUT he does not want to take a bath or shower!  So yeah, this pretty much summed up the whole day.

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.

Could he look any happier!?!
Could he look any happier!?!

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.

 After speaking with the nurse John immediately went downstairs to the gift shop and dropped off a few gifts for the little girl with the nurse. He let the nurse know that he’s not even sure if she’s allowed to have anything or if it would be OK. But if the nurse thought the little girl would like it maybe they could drop it off to her. If not, there are lots of kids around here that like prizes. 🙂
Not 20 minutes later the nurse returned with the most beautiful letter from the parents of the little girl. I will not go into detail but it was truly heart warming. It was a good reminder to me that even when you are in the worst of situations and you are struggling to stay afloat, be thankful for what you do have and the people and support you have around you.

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!

mail
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!