Yesterday was our second-to-last BIG chemo. The next BIG chemo will be the last treatment before scans.
Jackson once again showed how well he is adjusting to all of this and how far he has come since the first clinic visit. It's a bittersweet thing. We are thankful that he is handling it all so well, but it stinks that he is having to do it in the first place.
To be honest though, there are moments when we see all of this affecting him. He broke down (literally just collapsed on the floor q1in tears) when I tried to give him his medicine before leaving the house and he had a rough few minutes in the truck after we parked at the hospital...it's most likely a combination of his age and just pure exhaustion of medicine, doctors, hospitals, etc. Overall though, he is really doing well. Nurse Eryn commented on how well he is adjusting and that made my day. The nurses and doctors see so many children day in and day out and if THEY think he is doing well then I feel more at ease.
This is how it goes when we arrive: check in, waiting/play room, weigh/measure/blood pressure room, examination room and on BIG chemo days, all-day chemo room.
So when it was our turn to go back to the weigh/measure/bp room he walked in and IMMEDIATELY bent down and started undoing his shoes to get on the scales! Such progress. Nurse Eryn actually had to ask him to get OFF the scale! His weight was up a little from last week-score! We didn't quite get that 1/2 pound back yet, but we are moving in the right direction.
Next up was blood pressure. He asked politely to push the button and Nurse Eryn obliged. Such excitement--he loves pushing buttons! It makes me so happy to see him sit on that table like a big boy. Ryan and I used to have to hold him to get his bp checked.
Jack got his height measured next and then we were on our way to the examination room. He protested a little about unbuttoning his shirt to access his port, but not NEARLY as much as he used to. He is such a champ about getting his port accessed--he doesn't even flinch. I, on the other hand, have to take deep breaths after it is over.
Nurse Eryn did the blood draws and sent them down to the lab while Dr. Weinthal examined Jack. The counts came back quickly at 1470. The highest they have been since starting chemo on May 23rd! We were very excited and started asking if we could go different places. Dr. Weinthal very kindly reminded us that while his numbers were good for Jack, they are not
good and told us to still use caution. Basically, unless we can verify that every single person at whatever place we want to go has not been sick, then it's not a good idea. So while the zoo and church are out, we can get out of the house more this week! Hopefully the weather will cooperate.
After spending some time talking with Dr. Weinthal about Jack's diet and potty-training, we moved on over to the all-day chemo room. Ryan had to go back to work, so he got us settled in and then left. It was just Jack and Mommy the rest of the day :)
We hung out in the bed and ate snacks, played and watched movies. It was a long day, but he was such a champ! He didn't complain once. He did have a bit of a fit when I pushed play too soon on his Scooby-Doo movie...he likes to sing along with the opening credits and Mommy forgot :)
Throughout the day, nurses are in and out checking on him, changing out his meds, etc. At one point I asked how radiation would work for him since he is so young. Earlier in the day, Dr. Weinthal had been talking about our ultimate goal of surgery and how to get there. It got me to thinking about our options after scans--radiation is one of those options should chemo not be working.
This is what I was told: radiation would be every day, Monday-Friday. We do not know how many weeks he would require. I was also told that it is highly likely that he would have to be sedated for radiation. Our days would look like this: drive to Dallas, sedation, radiation. And repeat.
I would drive to Mars and back every day if it would make him better, don't get me wrong, but that daily routine will be very hard. The hardest part will be the sedation. OMGosh I canNOT imagine how that is safe to sedate him EVERY day. I tried to Google it (I broke my self-imposed Google ban--it's almost pointless for us to Google anything pertaining to his cancer, so I've just stopped) and I got nothing on sedating a 2 year old every day.
All this worry could be for nothing. I pray it is. PLEASE pray that the tumor has gotten small enough with chemo so that the pediatric surgeons feel comfortable operating. PLEASE pray that the chemo is working at all.
I struggle every day, every diaper change, with the fact that I can see his tumor. I measure it with my eyes constantly. I stopped measuring with a measuring tape a month ago...I knew I was making myself crazy over millimeters. Although I struggle with the fact that it's visible, God reminded me that its visibility allowed me to find it. Early. Hopefully really early. Since this is so rare (really hate that word now) we really don't know how to classify the stages.
When we finally got home yesterday, we were beat! We played and rested. When Ryan got home from work, we went into town to get Jack more medicine and dinner. The rest of the night was great because he did NOT get sick! Thanks to a ton of prayers and liquid Zofran :)
I heard this yesterday and I think it fits.....Faithful and Fighting.
I am FAITHful that God will heal my baby.
I will not stop FIGHTing for him.
{Good morning tishies!}
{Good morning giraffe!}
{Takin' a break}
{Such a big boy!}
{"Can I push the button? Please?"}
{38 inches!}
{Dr. Weinthal checking him out}
{Building}
{Yummy grapes}
{Watchin Dora..."Swiper no swiping!"}
{Checkin the dinosaur's heartbeep}
{Playin a silly game with his Percy}
{My happy boy}
{My brave boy}
{My beautiful boy}
Thank you so much for your prayers!
Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.
Romans 5:3-5Faithful and Fighting,
