Interim Maintenance 1 - Day 21

On Monday we went for JP's 3rd treatment in Phase 3. Sunday evening we had some blood drawn to see if he was going to make counts and his ANC (ability to fight infection) was low. Remember that a normal ANC is around 5.0 and JP's highest since diagnosis has been 3.2. He was on steroids at the time, which sort of skews the actual number. Anyway, on Day 1 of this phase he was a 1.1 and last Sunday he was a 0.75. Since they increase the dosage of chemotherapy based upon his ability to tolerate it, they needed to know for sure where his level was because if it was actually at 0.75 or higher they would be able to increase, if it was lower they would not increase it but give the same dosage as on Day 11. Turns out he dropped to a 0.5 from Sunday to Monday, so the dosage did not increase. That's fine, the doctor said he is responding the way they anticipate he will. They expect his ANC to drop just like it has been. The scary thing is that he was a 0.6 when we were first admitted to Primary Children's and ultimately fell to a 0.1. With an ANC at a 0.5 we have to be very careful with who he comes in contact with and be even more diligent about hand washing and sanitizing. We've basically quarantined him, haha! We did ask the doctor about taking him to see some friends or going up to Thomas The Train at Heber Valley (Primary Children's had given us tickets and it was the next day) or if we should steer clear of contact with the outside world. She told us that as long as it's just a few people and nobody's sick it would be fine, but larger groups of people and activities that are not outdoors should probably be avoided. Needless to say, we did not go see Thomas the Train and we have not taken JP very many places this week.

Here are pictures from this week - it took an especially long time for the lab to get our doc the results and once the results were finally in and she made the decision not to increase the dosage, she had to order the chemo to be made and the pharmacy then took its sweet time. So we hung out for quite a while in the infusion area where JP couldn't decide if he wanted to watch a show, play the iPad, eat lunch or popsicles. 

After the doctor's, we made some delicious chocolate cupcakes with peanut butter frosting and had dinner with our friend's Cortney and Chris. Their two little boys are JP's little buddies and JP thought it was hilarious to spray them with water. For the record, their own father suggested the idea to JP and then helped him carry out the mission. Silly boys.

Interim Maintenance 1 - Day 11

We had our second treatment in phase 3 last Friday. We had bloodwork on Thursday to make sure he is heathly enough for treatment and he was so we went ahead and kept our appointment on Friday. While we were getting ready to head out, JP grabbed his football and insisted I put it in my bag "in case my nurses want to play." He is the cutest kid! Always thinking of how to make others happy.

It was a fairly easy treatment day. We had the check up with the doctor, got his port accessed and went back to receive his chemo. He is receiving two types of chemo right now - Vincristine and Methotrexate. The Vincristine is given in the same dosage it's always been given but the Methotrexate dosage is increasing with each visit. He seemed to handle them both well, but he always does. He is amazing.

Again this week, he didn't want to sit still during treatment. I had to follow him around with the machines again...

He loves to be in charge of the camera. Here is his point of view this week:

Dad playing the iPad

The nurse trying to catch him (the purple blur is a chemo glove. The nurses have to suit up and wear special gloves when they are administering chemo.)

Mom and JP toes

 And then we met Spiderman. Turns out even superheroes have to visit the doctor once in a while.

Of course, at the end of each treatment we have to stop by the fountains and make a wish. Can you guess what Josh and I wish for every single time? :)

All tuckered out. It's tough to be so brave every week. Notice he's still holding onto his mask. Such a good boy.

We met a 10 year old and his mom in the infusion area (where chemo is given) and found out he has Ewing's Sarcoma (a bone cancer) in his heel. He will have to have his leg amputated. My heart aches for them and the journey they have ahead of them. I feel like every time I meet someone new my heart aches a little bit more. I really hate that our cute kids get cancer and have to deal with so much at such a young age. Someone told me once that "only mean, old people should get cancer, not our precious babies!" and while I don't think anyone should get cancer, I semi-agree. Cancer is a mean, ugly thing.

Go Utes!

Several weeks ago Josh took JP to the Utes scrimmage game. He LOVES the Utes and they had so much fun. He is so good at wearing his mask even though we know he doesn't like it. Josh had to take a backpack full of preparations - a blanket to cover the bench, Clorox wipes to clean the surfaces around them, hand sanitizer to wash hands and of course, his muscles to carry JP because he doesn't like to walk. With leukemia being a cancer of the blood it makes bones and joints hurt. Sometimes we're not sure if he's just being lazy or if his legs really are hurting. We tend to carry him more often than not to avoid a complete meltdown. This may or may not come back to bite us in the rear later...

At the game Josh said the cheerleaders were taking pictures with people in the crowd and he thought about asking them to have a picture with JP but decided that might make him sound creepy, so he didn't. Haha, that made me laugh. I love that the weather is nice enough that we can get out and do things, finally!

Interim Maintenance 1 - Day 1

Today we started Phase 3 of treatment. This phase is different from the previous 2 phases in that:  -it's expected to be 8 weeks long instead of 4
  -we are on a 10-days-between-visits schedule instead of once a week
  -we are not doing weekly lumbar punctures and will have just one on day 31
  -no more daily chemo given orally which means we won't have to wear gloves every time we change JP's diapers except for the 48 hours after chemo day (yay!)
  -each treatment is "count dependent" meaning the day before treatment we have to have blood drawn and as long as his numbers are at an appropriate level we keep our appointment. I think this is because if his levels are low his little body won't be able to handle the chemo
  -JP will be given two kinds of chemo at each visit - Vincristine and Methotrexate - we've had each of these before but the dosage will be increased with each visit and hopefully he will tolerate the increases well

While I was getting JP ready to go this morning he wanted to wear his cape. All the doctors and nurses loved it and he put on a show everytime someone mentioned it. He'd put his arms behind his back and hold the cape out. He is such a ham! He was extra goofy today, making sure Rachelle (our Child Life Specialist) knew he wanted his race track right off the bat. While we were getting the chemotherapy, he didn't want to sit still. He was up and about between his chair with the cars and the table where he was coloring. Since he was hooked up to the machine getting treatment, I had to follow him around, rolling the machines behind him. He kept getting twisted up in it and didn't like that every few minutes I'd make him spin around to get untangled. He'd greet anyone that walked by with a smile, a "how-ya-doin?" and a "look at my cape!" We found out that the day you start Phase 3 is the date they use to determine your end of treatment date. That means our end of treatment date is May 1, 2015. I'll almost be 31, Josh will be almost 34, JP will be 5 1/2 and Elsie will be 3 1/2. That seems so far away, but my Discover card doesn't expire until December 2016 so I guess it's not that far out... haha!

While we were back in the infusion area (where chemo is administered) we saw all the nurses and doctors gather around a boy that was just finishing his treatment. I didn't realize he was finishing his treatment until they started singing the Happy Birthday song but the words had been changed to "Happy off treatment day to you! Happy off treatment day to you! Happy off treatment day, dear Kyle! Happy off treatment day to you!" and started cheering and clapping when they were all done. Then they all followed  him to the door where he rang the bell three times and everyone cheered again. I was brought to tears. Sitting there, I couldn't help but feel so happy for that family. Their son was finally off treatment! After all those years of weekly/monthly trips to Primary Children's to receive treatment that saved their son's life... now they are able to find some sense of "normal" again. There I was, holding my sweet son at the beginning of our journey looking ahead at the next three years. It was a bittersweet moment - so happy for that family and feeling a little bit sad that we have such a long road before we are there. We'll get there.