Treatment number 11

Kait:
Jake is being admitted today for treatment number 11. This is the last time that he will get doxorubicin, the "red devil" that causes mucusitis and heart damage. Because it can cause heart damage, Jake will have an echocardiogram before they start chemo today. I'm guessing that if there is anything wrong with his heart that they won't give him dox today. He has had echocardiograms before with clear results so we are hoping for the same today.
We are sitting in a clinic room watching Thomas the tank engine while we wait for an inpatient room. Admit day is the longest day of waiting. We got here at 10am for his appointment, signed consent forms, got labs and vitals, waited for the lab results, and got some juice. His EMLA cream is on his port and we are ready to get the port accessed and start his fluids.
Now it's 12:00 and he has just had his port accessed. He screamed "no no no no don't do it. Please no," over and over. The nurse is very quick so it's done within a few minutes and now he's back to watching his movie. He did ask for an extra piece of tape on his tube so that "mommy won't pull it out and hurt me." Kids have such great memories. Ugh.
Once he gets a bag of fluids in him he can give a urine sample and then the chemo can be ordered from the pharmacy. Although, not before the echo. So that is an added thing to wait for today.

Tomorrow is Ethan's last day of school and he is so excited to celebrate his birthday at school. Randy is going to bring cupcakes at lunch and I am not happy to be missing it. At least this is only a two day treatment so we can be home tomorrow afternoon and then celebrate his birthday on Saturday. We are hoping he will feel happy, special, and loved. We are trying to make his day extra special because he feels the effects of Jake's cancer too and he deserves to be the center of attention.

This past week, Jake has started physical therapy. He is to go twice a week for 8 weeks. They are mostly doing strength training for his arms and right leg plus stretching and massage on his left leg since he isn't allowed to walk. He loves it and it's so nice to take him to an appointment where he doesn't cry about going. This summer is going to be a challenge because Jake wants to do everything that Ethan does and doesn't understand why not. He wants us to be his legs to play tag and hide and seek. Of course we can do this sometimes but not all the time. I mean, he is heavy! Plus we have Aubrey to chase after as well. And, her favorite thing to do outside is run away. Hopefully, Jake will be able to learn to maneuver better in his wheelchair so that he can have a little more independence while simultaneously saving my aching back.

One other piece of news is that Jake's oncologist is leaving for a position at Vanderbilt in two months. We like him a lot so this was sad news for us. We are thankful that he is his doctor for the majority if his treatment and we know there are wonderful doctors who will take over for him.
It's a scatterbrained post like usual! Thanks for all of the well wishes, thoughts, and prayers for our whole family and for following our journey.