Maintenance

This is not in chronological order, just so you know. I still need to write about our CureSearch walk, Interim Maintenance II days 31 and 41 and Disneyland. Be prepared to back track! These feelings are just so fresh and I can't stop thinking about it so I had to write it out.

After a wonderful few days in Disneyland, we had to come back to our reality and get back on track with our treatment of this ugly monster. We had blood drawn on Sunday, November 4th to see if JP was healthy enough to start Maintenance. You see, after you finish all the treatments in each phase there is typically about a 2 week recovery period where counts are usually pretty low but "recover" so you can start the next phase. In this instance, JP needed to have an ANC of 750. (Remember that normal people are usually 5,000.) So Sunday night we call the lab to find out where his ANC is because we had an 8:00 am appointment Monday morning. His ANC is 700. Hmmm... we weren't sure if we were supposed to show up in the morning or not! I called the on-call doctor and she went over his labs and told us there was no way - his ANC was actually 690-something. We decided we'd call in the morning to see what they wanted to do. Once we got ahold of clinic they told us we could recheck his counts or wait 4 days and recheck then. Well Josh's grandpa died on Nov. 1st so we were planning to fly to New York for the funeral on Thursday night and we did not want to leave JP right after he started a new phase so Josh and JP headed to the hospital hoping he made counts. His labs came back at 800 so I found a sitter for Elsie and went to the hospital.

Like I've mentioned before, we are participating in several studies to (hopefully) improve the treatment plans for ALL kids and the main study we are on randomizes patients in their Maintenance phase to see how they respond to treatment, whether higher doses of the medication improves the mortality rate or if lower doses can yield the same results, thus lessening the long term side effects of treatment. Many people don't realize that simply treating cancer can cause serious late-effects - infertility, heart problems, secondary cancers, disabilities, the list goes on. Our hope is that JP will beat this beast and go on to live a normal life. We realize there will likely be late-effects and we can only pray they do not interfere with his ability to live as normal of a life as possible.

Before I got to the hospital they randomized JP. In addition to all the medications he has to take daily and/or weekly, the arm of the study we were placed on involves the lowest dose of weekly oral chemotherapy and Vincristine through his port just once every 12 weeks. When I heard this, my eyes welled up with tears and I couldn't help but to shake with fear. How do we go from weekly/every 10 days of chemo to once every 12 weeks?? Sure, lower doses of the chemo should lessen the likelihood of late-effects but what if the leukemia comes back in between treatments?? Or, even worse, what if it's not enough chemo over the next 2.5 years to rid his body of every single leukemia cell and we end up right where we started, only 3 years later and no further ahead?? I am so terrified of relapse. I don't know if there will ever be a time that I won't worry about it. I sat down with one of his nurses and expressed my fear. She explained that we'll still have bloodwork and clinic visits every 4 weeks so we'd know if something was off. If there is any reason to believe it isn't enough, we would immediately take him off the study and increase the Methotrexate and/or adjust his treatment plan. That made me feel better but I'm still consumed with fear. Cancer is a terrible thing to have to deal with. I know we are incredibly blessed to have "the good cancer" and so many people praying for us and we know the Lord is carrying us through all of this, but sometimes I still feel so heavy with the burden of watching my son fight cancer. How is this fair?

Happy 3rd Birthday JP!

For JP's big day, we decided to celebrate it after the CureSearch walk. He technically turned 3 on Monday, September 24th, but we figured family and everyone would be in town for the walk on Saturday, September  29th, so we'd have the "real" party then. I can't believe my little man is already 3! He is the still the size of a 2-year-old, my very own pint sized boy! 

Some little facts about JP at age 3:

His favorite food is Cafe Rio salad with little chips and sauce (tomatillo dressing)

His favorite superhero is Spiderman

His favorite movie is Cars 2

He is in the 5th percentile for height and weight, or in the 50th percentile for 2-year olds (meaning he is the size and weight of your average 2 year old)

He says the funniest things to us every day (I asked JP what his shirt said (it says "let's roll") and he paused for a second before he exclaimed, "Hey wagon! Let's bounce!" or "I have a diagnosis - you have stuffed bellyosis!" or one day I took my hair down and JP ran his hands through it while saying, "Mom, your hair looks great!" He followed that by holding my face in his hands while saying, "Oh Mrs. Gibson!" with a big kiss on my cheek or "I want to tell you a secret!" so I lean over and he puts his hands around his mouth and whispers, "I'm so silly!" then covers his mouth and giggles. I could probably go on and on...)

He loves, loves, loves anything Utes related. Mostly Swoop.

He adores his baby sister but sometimes the chemo/steroids/cancer drugs get in the way of his better judgement and his sweet hugs turn into choke-holds and pats turn to hits. Maybe that's not a cancer thing and just a toddler thing?

Every morning when he wakes up he needs to know where his "cute baby," "sweetie," or "my baby" is. And the moment he sees her it's, "Hey Elsie girl! It's brother boy!"

He loves his Nurse Amanda, our home health nurse. She comes to draw his labs before chemo so we see her quite often. He calls her Nurse Amanda and himself Dr. JP and he will give us a full check up after she leaves - the same way she gives him check ups. 

He can count to a million (ok, slight exaggeration)

He is better at the iPad, PlayStation and Wii games than me - how is that possible? 

He loves to play NCAA football (PlayStation) with his daddy.

He has a huge heart and hates to see anyone sad. "Mommy, are you sad? *kiss* There, don't you feel better?" and "Let's take these cars to my cancer kids at the hospital so they can feel better like me!"

He is an amazing example of strength - without even realizing it. He has no idea how brave he is.

Moving on to the celebration part of him turning 3... We have a friend from when we lived in Cedar City who bakes amazing cakes for her friends. She sent me a message on Facebook and asked if she could make JP his birthday cake. Um, yeah! We all know I can't frost cakes to save my life so this was an amazing offer. I didn't realize just how amazing it was going to be until she delivered it and JP broke it basically immediately because he tried to pick it up to put it on thinking it was a real Utes football helmet! It really was incredible - I can't even imagine how long it took her. All I know is that every cake he will have for the rest of his life will never be as awesome. And that's ok.

We went to a park and had a small lunch and let JP run around playing with his cousins and a few friends. I remember sitting at a picnic table watching JP run around on the grass giggling and chasing/being chased by his friends/cousins/uncles and I had to keep blinking to clear the waterworks from my eyes so I could see it clearly. He was just SO HAPPY. I hate that cancer took our care-free summer of running and playing away from us. I hate that we couldn't even do "normal" summer activities (like playing at the park) because his numbers were too low to be around other people. I hate that all I see is germs wherever I go. That being said, JP's birthday could not have been more perfect and even if it was just for a day, we were able to pretend we were kinda normal. It was nice!



Just look at the joy on his face! 

He seriously loves Swoop. As in L-O-V-E-S Swoop.

Tearing into his gifts

Ever wonder where JP gets his silly personality?

Thank you to everyone that came to the walk and/or to JP's small birthday gathering. We are tremendously blessed to have such a large support system.

Aaaaand we're back! Almost.

I realize there has been a very long time between posts. I am so sorry! It seems like since JP turned 3 we've been so dang busy. A lot's been going on and I have a lot of thoughts and feelings that I've been holding in and if I don't type them out I'm pretty sure I'll forget about them. I am committing myself to writing one catch-up post a day until we're all there. I have to wait until naptime or bedtime but I promise I will be updating. See ya soon