LONG UPDATE

This update feels long overdue, so here’s the latest on what’s been going on! Caleb has been doing very well during his first 7 days of Cycle 5, and his blood counts are holding strong at the moment. Grandma and Bruce also visited for the Holiday weekend, so we have been busy having lots of fun! I am glad Caleb has been feeling good and was able to take part in the fun! He still tires out easily, but has been in great spirits and has been eating very well!

So, going back to the middle of last week Caleb began Cycle 5, which starts with his oral Chemo (Alisertib) at home. We definitely celebrated that this is the last time we will have to do this while in Memphis! Caleb has handled the oral chemo very well this round and still seems to be feeling pretty strong.

At the end of last week, Tyler had his last T-ball game of the season AND his last day of school. I now have a Kindergartener! I am so incredibly proud of all he has accomplished this year. His school has been amazing and has been one of the most positive things (besides St. Jude) about our time in Memphis. We will miss everyone at the school very much, but they gave Tyler such a strong foundation for starting elementary school. We will miss everyone, and I know Tyler will miss the friends he has made here, but he still has a few weeks of summer camp to attend before we move home to Florida.

On Friday Grandma and Bruce came into town!! The boys were SO excited and we all drove together to the airport to pick them up, followed by a Memphis BBQ dinner!

We started off the weekend with a visit to the Bass Pro Shop in the huge pyramid in Downtown Memphis. Grandma and Bruce had never been. They had kids activities and we also bowled at their favorite bowling alley, the under water themed lanes that are in the Pyramid!

Caleb was pretty tired after this, so after bowling we came home for nap time. Most of our days are split like that. He can handle one activity in the morning, then we come home for rest time which is typically about a 2 hour nap, and then we can do maybe a late afternoon activity before dinner and bed time. I don’t mind this too much because I like naps too! ha ha!

Saturday night Grandma and Bruce watched the boys so James and I could have a much anticipated date night. We made reservations at the most delicious restaurant in Memphis! It’s a place called Flight. Each of the meals is comprised of 3 small plates (a flight) and you can either choose one of their themed flights or create your own. Everything James and I chose from the menu was out of this world!!! It was nice to have a quiet meal, some great wine, delicious food, and uninterrupted conversation. We even came home and rented a movie… and I didn’t fall asleep! I was proud of myself for that ha ha!  And the boys had a wonderful time with Grandma and Bruce sleeping in a tent they made so they could pretend they were “camping”. I am not sure who had more fun, grandma or the boys!

The next morning Grandma and Bruce (and the boys) made an awesome breakfast and delivered it to us after we got to sleep in!!!!! Then we went to play Putt Putt golf and play the games at one of the places we found a few weeks ago. Caleb made it through about half the round of putt putt, which was pretty good because of the heat!! They had so much fun playing golf and games!

That evening we threw Tyler a celebration for graduating pre-school. His pre-school back home always does a graduation from VPK, which I think is adorable and something I was definitely looking forward to. I didn’t want to not celebrate this milestone and make him feel super special. So we threw him a party with dinner, balloons, and a cake. I even got him a cap and gown which he called his “graduation costume”. I wanted him to understand how proud I was of him going to Kindergarten, and he has talked for days about how much fun he had at his party!

Monday was the last full day Grandma and Bruce were in town and we decided to go see the new Aladdin movie. It was so good and we all loved it! The boys also like to play the games at the movies when we go so that has sort of become a tradition. It was a nice relaxing way to spend the day and stay out of the heat!

So that bring us to today, Tuesday. Grandma and Bruce had to say goodbye. It’s always sad, but knowing that we are so close to being home made it just a little easier this time! I know Grandma is having a hard time going months without seeing her boys, so everyone will be happy when we are back in Florida!

Caleb and James headed to St. Jude for a count check, and Tyler and I stayed home and played some games. I am happy to report that Caleb didn’t need any transfusions today. I am not sure if his numbers will hold over the next few days, as his counts could still be dropping from the chemo, but for today his numbers looked good! And not only were his numbers strong, he also gained weight… he’s now 17.6 Kg. This is a very positive thing as we are followed closely by the nutritionists to make sure he doesn’t lose too much weight. But I can’t say I’m surprised because I spend 50% of my day making him meals and fetching him snacks. We feel so lucky that for whatever reason Caleb has handled the chemo and the nausea better than most and during the majority of each cycle has maintained his appetite. He was extremely tired today and slept in his wagon almost the whole time they were at St. Jude. We definitely had an exciting weekend and I think it all caught up to him!

So the next part of the cycle is a one week break before we are admitted for his inpatient stay. If his numbers stay up we will be admitted this Tuesday. This past cycle (Cycle 4) we were delayed a week because his numbers were so low, so we are expecting the same to happen this time. We would be thrilled if it didn’t, because the sooner we get admitted for the inpatient chemo, the closer we get to going home. So we will see where his counts are at his next appointment on Friday. Also, his hearing aids are in and we will be receiving those on Friday as well. I am nervous about him getting used to them, and me learning all about how to use them. But I know Caleb rises to every challenge and I am sure he will get used to wearing the hearing aids as well. So we’ll have another update for everyone by Friday. Until then pray for me because Tyler isn’t in summer camp until next week and I have both kids at home with me the next couple days. I will be drinking lots and lots of coffee!!!