Day one, again

Well I’v said it before and I’m sure I’ll say it again, I hate chemo!
I hate that I know so much about it, I hate that so many other people have to knows so much about it. I hate having to pick which one my baby should get and I really hate watching him get sick right before my eyes as it drips into his veins. I hate that this is the best shot we have to help him. I hate everything about it.

Kai was bright and smily and interactive when we got to the clinic. Everyone was happy to see him doing so well and by the time we left he was a different baby.

I feel like I’m back at the beginning again, questioning everything. Wondering how this can possibly be the right thing to do..but here we are starting all over again. New drugs, new side effects, back into the unknown.

Between labs, pre-meds, and chemo we were at the clinic for over 7 hours. He tolerated the Avastin well but once the Irinotecan began things started to go down hill. About 15 mins. in he was visibly uncomfortable, gaging from nausea, miserable laying down but to tired to sit up. He kept cycling in and out of hot and cold sweats.

It was so hard to watch but really, it was nothing compared to what we would deal with once we got home.

I will admit was pretty nervous leaving with Kai once the infusion was done. He wasn’t looking good and it was just after 5:00. I was worried he’d be sick and we’d be stuck in rush hour traffic on the Mass Pike. As always, our wonderful infusion nurse made sure we were comfortable taking him and set us up with everything we needed just in case he were to get sick on our drive home. She gave him an IV does of Ativan (anti-anxiety/nausea) and sent us on our way with disposable chucks, a puke bucket, gloves, and liquid Imodium, just in case he had the explosive diarrhea or vomiting that often comes with the Irinotecan.

I am happy to say the ride home was a breeze! Unbelievably there was no traffic. We flew home and Kai slept the whole way. What a relief!

As usual, as soon as the car pulled into the driveway his little eyes popped right open. He began to wiggle and whine so I scooped him up, wrapped him in his blanket and carried him in. By the time we got in the house I knew he was not doing well. He was shivering and moaning and making just the saddest little face you have ever seen. I decided to change him into some clean, warm Pj’s and that’s when he really lost it. As I pulled his shirt over his head he began screaming and crying hysterically, tears streaming down his face and there was nothing I could do to console him. It was like his whole body hurt even just from being held. I don’t know if the chemo made him hyper sensitive or if it was the combination of all the drugs he had that day, but he just reacted and could not stop. Eventually I laid him down he took one sip of his bottle and drifted off to sleep. For a mom there is no feeling worse in the world than feeling your own touch is hurting your baby. All I wanted to do was kiss him and hold him, and tell him how sorry I was that he has to feel this way, but what he really needed was for me to put him down and walk away…it was completely heartbreaking.

Thankfully he slept well all night, waking at his usual 3 am. He was a little better by then but still obviously uncomfortable. He spent most of today in and out of sleep as well.

He enjoyed a lot of time in his crib, which is very unusual for him, but I am so thankful he found some relief in the quiet dark comfort of this own bed.

He did eat his usual waffle for breakfast and peanut butter sandwich for lunch. He’s had lots of snuggles and love. By the end of dinner he finally perked up a bit but it didn’t last long before he was off to bed. I got a few good smiles of him at the end of the day, so I will go to bed tonight with hope that tomorrow will be a better day.

5 thoughts on “Day one, again

  1. My Dear, My heart aches so for you and Kai. I wish, somehow, we could make things better, but all we can do, right now, is support your strength with our love and that you have forever and always. Stay strong. Hugs and kisses.

  2. My heart aches for all of you. I’m just praying it will all be worthwhile in the end. You are in our prayers,

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