Round 10 was yesterday and we celebrated! We are SO thankful that we now have 10 rounds of chemo behind us. In some ways these 10 weeks have been so drawn out and in some ways they have flown by.
The next two weeks are pretty much a waiting game. The scans (a PET scan and an MRI) are tentatively scheduled for Monday, August 9th. We should meet with the doctors that same day or the next day to discuss the next step--surgery, more chemo or radiation.
We go back next Monday for a count check only, which is a bummer because we thought we were getting a week off. His counts yesterday were much lower than normal at this stage (last time he had big chemo his counts were at their highest since starting chemo) so they want to check his counts again next week to make sure he doesn't need a blood or platelet transfusion.
Thankfully, his counts were high enough to get treatment--but it was close. We just weren't expecting that since they were SO high at the last big chemo. The doctor said the change in the pattern we were used to is likely due to how much chemo he has had...the further along we get, the more unpredictable his counts are from what I understand.
He also pointed out that his reflexes are mostly gone due to one of the chemo drugs. They should return as soon as we stop chemo. The same drug is known to cause joint pain and he does complain of his legs or hands hurting occasionally.
We had a lengthy conversation with one of the doctors about recurrence rates, which scans to do in two weeks and how the process works for testing after they consider a patient to be in remission. I have some issues with the spacing of the remission scans and feel like some of the information they have given us is conflicting. I fully realize they are way smarter than me and this is their job, so they probably know best. BUT. This is my baby and I am just not at peace with it. So, while this is not something that has to be resolved right this minute as he is not in remission (although hopefully we will be there sooner rather than later!!) it is bothering me. Most of the things we talked about were fairly upsetting because they were harsh reminders of how serious our situation is, but he did say a couple of positive things.
When we first got to the hospital, we went up to the 6th floor which is the floor we stayed on for 3 days when Jack was first diagnosed. At first, he was fine. He saw the huge Chipmunk statues, the fish tank and some new toys. Then we turned the corner to go towards the nurses station. BREAKDOWN. He lost it. He has never had such an immediate reaction to something. It was so upsetting for him--he must have thought we were staying. We calmed him down and he was ok, but unsure, after that. He wanted to be held and I was happy to oblige. We went down and visited with the head nurse and asked a few questions about donating books and toys. Jack wouldn't talk to her, but he was very happy to tell her "Bye!" and get outta there!
There were some definite low points to the day, but we still celebrated our sweet boy and his big milestone. I am so proud of him. He is the bravest boy ever!
{Happy day!}
{Chick-Fil-A to start our celebration!}
{Sneaking a drink in the waiting room}
{He found Woody and immediately put him into the school bus}
{Being independent and insisting on taking his shoes off all by himself!}
{Weight was down a tiny bit, but still over 35lbs}
{BP was great}
{So happy after pushing the button}
{Open wide}
{Reflexes}
{Singing to pass the time}
{Coloring to pass MORE time}
{So brave}
{Checking Woody's reflexes}
{Checking out the goody bags full of Smarties and Lifesavers for the doctors and nurses--another part of our celebration}
{Convincing Dr. Goldman to share his candy}
{Coloring on a Toy Story paper}
{Coloring on his hand}
{Skis for feet}
{So handsome}
{Giving Nurse Eryn her goody bag}
{Celebratory cupcake}
{DONE!}
{Leaving with balloons}
{Toys R Us on the way home for being SO brave}
{BATMAN!}
After we got home, Jackson played for hours with his new Batman and Batmobile! He LOVES it and that makes me love it--loud noises and all. We were all beat from our long day and thankfully Jackson did not get sick. He did today though which caught me completely off-guard. However, after some crackers he was back to himself, playing and trying to wrestle with his brother!
Thank you all so much for your prayers yesterday and the past 10 weeks!! Please keep them coming! Knowing we are not alone is so helpful. We are nervous and scared for what the scans will tell us but our faith is keeping us afloat in the sea of unknown.
And without faith it is impossible to please God...
Hebrews 11:6
