#GabeStrong: Day 16-22

I apologize for the delay in posting a new blog post. I’m happy to say there hasn’t been a lot of excitement going on here!  We have fallen into a routine of medicine, doctor appointments, labs, chemo, and resting at the hotel.

Since my last update, we got to spend time with Daniel, Bella, and Jacob’s parents.  Gabe loves it when they come to see him.  We try to face time a lot, but it’s always better to see them in person! We also had my Aunt Linda and Aunt Teresa come see us, and they brought Gabe a leap pad tablet.  He loves it, and he gets frustrated with himself when he messes up tracing the alphabet (with a stylus) but I think for a three year old, he is doing awesome!

Gabe had to have his Picc Line dressing changed, and let me tell you, that was rough! I’m thankful for the release swabs that make it easier for the tape to come off.  It has to be changed once a week to make sure it stays clean and I’m already dreading the next time we have to do it.

Gabe has some cranky days, especially when his appointments are early in the morning, (he usually perks up after breakfast) so I joked with Jacob that he may become known as the cranky boy. LOL!  The nurses just laugh and say that they would be cranky as well if it was them.

We had a big chemo day yesterday, and spent twelve hours at the hospital.  Gabe had his usual lab work, then two hours of fluid, chemo, and then six more hours of fluids.  It’s hard being in isolation, because we are in a tiny room, and it’s hard to keep a three year old entertained all day.  His doctor came by to see us and said that Gabe is still responding very well and he is very happy with how he is responding to the treatment.  They also did a nasal flush today, so we can see if he can get out of isolation! We hopefully will have the results soon.   We go back Monday to meet with his doctor again to discuss the upcoming phase of treatment.  We still have few more weeks for the induction period, but it is weird to think that we have been here for almost a month.  Some days seem to drag on, and some days seem to fly by.

 

Jacob went out to explore the Bass Pro shop this afternoon, and as I was hooking up Gabe’s eclipse (antibiotic IV medicine) he was reminding me of the steps.  He told me not to forget his medicine bag (it’s a small black bag that goes over his shoulder and holds the medicine ball) and it bothered me.  I mean really bothered me.  Gabe should not have to know what a medicine bag is.  He shouldn’t have to take all these meds, sit in a hospital bed hooked up to an IV. He shouldn’t know the name of one of his medicines, and cry, “Don’t take the Gabapentin one!”  He shouldn’t have to have a PICC line that goes into his skin, up his arm, and across his chest.  Jacob shouldn’t have to stop calling him by one of his nicknames (that he has for him) Buddy, because that’s what the nurses call his PICC line and now that name is tainted.  He shouldn’t have to be used to nurses checking his temperature and blood pressure.  He shouldn’t be used to seeing the nurses and doctors wearing masks, gloves, and gowns because he’s in isolation and can catch other viruses, or pass them to other patients.

This shouldn’t be happening at all.

But it is. 

This shouldn’t happen to any child.

But it does.

I told you all that I wouldn’t hide my feelings from you.  I’m not going to sugar coat our journey and only tell you the highlights.  I’m not going put on a mask and pretend that I’m okay with everything that is happening, or even pretend that I’ve come to a place where I’ve figured out this journey and accepted it.  I want to be honest with what I’m thinking and feeling, because I want something good to come from this.   As a writer, I’ve never wanted to be afraid to show the messy parts in my novels, to talk about real life issues and struggles.

I will tell you that there are good days and bad days.  There are days when I’m so optimistic that I can’t imagine feeling down.  Then there’s days when Gabe is having a rough chemo day, and I can’t stand to see my baby feeling so down.  There’s a constant stream of emotions that flood me on a daily basis.

I will tell you that I know that we have a wonderful support system of family, friends, and even strangers that we have never met.

I will tell you that we are in the best place possible for Gabe.  The level of treatment and care that he receives is amazing.

I will tell you that I know God has a plan.  I know that He has been with us every step of the way, and I know that He is the reason that Gabe is doing so well.  I know that He is my strength, comfort, and peace and when those moments of sadness, anger, and fear creep in, He is there telling me that He understands them all.

#GabeStrong