Delayed Intensification - Day 1

Yesterday we started Phase 4 - Delayed Intensification. I've already expressed my anxiety in starting this phase and it was nice to rip the bandaid off and start it already. The sooner we start the sooner we can have it over with.

Our day was very pleasant - the doctor's visit went fairly fast and effectively, JP had his check up and then we went back to the infusion area where he received Vincristine and Doxorubicin through his port. They told us the Doxorubicin almost always causes hair loss, mouth sores, red/pink colored urine and nausea and vomitting. All things to look forward to I suppose...

After the clinic visit we went down to the RTU where JP had his lumbar puncture and Methotrexate put into his spinal fluid. Before we went back, Lindsey (a child life specialist) brought in the iPad with that Tom the Cat game. JP's played it before but you would think he was just seeing it for the first time with the way he was giggling over it. He had the funniest high-pitched laugh and Lindsey was cracking up. All the nurses were laughing right along with him - especially when he made the cat fart - that was his best giggle. Oh, the joys of boys right! He wanted me to take him back to the room so I did and Lindsey came with me with the iPad and normally when they give him the anesthesia his eyes roll back and he slumps over, but he did NOT want to go to sleep. He was pulling his legs up towards his body, arching his back and trying to reach out his arms. It wasn't like he was having a seizure - although the movements were similar - I could tell he was really trying hard to keep playing. It was still unsettling watching him pass out, but I did smile a little seeing how badly he just wanted to play.

He also woke up so much better this time. Normally, he is ornery and crying and mean, but I leaned over to him and rubbed his arm and whispered in his ear, "JPeasy, Mommy and Daddy are here. Do you want some Doritos?" and his eyes opened and he sat right up. He picked out some "Red Ritos" and got a chocolate milk. He acted more like he was just waking up from a nap, not anesthesia. It was such a nice change from what we normally experience... He was so happy all day and obviously that made it all easier.

After we got home, we could tell he wasn't feeling well. We gave him some anti-nausea medicine and he was crying about his tummy hurting. We started back on the steroids - almost 3 times the dosage he was on last time - so we have that to look forward to as well. Poor guy, he has to be so brave all the time. I sometimes wonder if he thinks that feeling yucky is just how people feel...

Here he is cracking everyone up before his LP

Here's his points of view for the day

Cars... of course!

Self portrait 

The research student gathering info from us about a study we're on...

 

His shorts...

 

Super focused while helping his nurse get his band on

"JP, do you feel ok?"

We're happy we had such a good day, bummed that we get to go back Monday morning for more chemo. He is such a trooper!

Midnight Thoughts

I should be sleeping, but I have so much to do there just isn't time! That, and sometimes I can't shut off my brain.

I'm worried about the next phase of JP's treatment. I am trying not to obsess about it but it is constantly on my mind and every time I think about it my chest gets tight and my heart starts beating a little faster. The next phase is called Delayed Intensification and is supposed to be pretty rough. It is similar to Induction, the first phase, but is much more intense in that there are 9 different medications he will be on and they all have their own days/schedule within this phase. 4 of these medications are new types of chemotherapy to JP - he hasn't had them before and I worry about how they will affect him. He still has all his hair, in fact we've cut it twice since the Buzz party into a "racetrack" aka a mo-hawk. He still looks like my little JP and I am scared that this next phase is going to change him into my little JP with cancer. I know that sounds weird because he has been my little JP with cancer since February, but I'm worried he's going to start looking and acting like a cancer patient and I don't know that I want to face that reality. I will, obviously because I have no choice, but we've had such a positive cancer experience thus far that I don't want it to become obvious to the world that my sweet boy is fighting cancer. The world already knows it so I don't know why that is a worry - when we go places I can hear people whispering (not very quietly) to each other "Look - that kid has cancer" or "Do you think he has cancer?" because he's wearing his mask. The first few times I noticed it I was caught off guard, had a hard time holding back tears and didn't know if I should react with a smile or nod or nothing. Now I pretend I don't hear it but every time I get a lump in my throat. I hate that he is fighting cancer. I know he has a fantastic prognosis, but that doesn't mean I'm ok with leukemia. It's still cancer.

I put together the calendar of the first 37 days of DI... I'm not sure how I'd keep it all straight if I didn't! I don't know if you can see it or not, but it's pretty involved with just a few days off here and there. Most of our Fridays will be spent at Primary Children's with the occasional Monday visit and Home Health will have to come out several times as well. Each Friday is count dependent and if he doesn't meet counts, they push us back a week to give JP more time to "recover" as they put it. Yikes. They also warned us that this is the phase where most kids are admitted for some time because they get sick and can't fight it on their own and  maybe that's why I'm so nervous. I don't want him in the hospital because that means he's sick. I want him at home because that means he's "healthy." I just need to take things one day at a time. Deep breaths...

Interim Maintenance 1 - Day 41

On Monday, June 11th we went in for JP's last treatment in this phase. His numbers were good so they increased the Methotrexate and he also got the normal dosage of Vincristine. He didn't have to have an LP this time, and it was seriously our quickest visit at the hospital - about 3 hours. JP has started wanting to "help" with his port so the nurses let him help push the syringe. He doesn't get to push the chemo administration, but the saline flushes and Heparin (that helps his line not clot) he can. He is trying more and more to be as independent as possible and we are enjoying the tantrums that ensue when he can't do it ALL himself. Haha! Oh, the joys of having a two-year old! Oh, and just in case you were concerned, we found Spiderman. We don't know where he was on Day 31, but he was back on the 3rd floor for this visit. Phew!

This is what I get when I ask for a cheese. He really is his father's child!

So helpful! 

Dream Night

On June 1st we went to the Hogle Zoo for the opening of their Rocky Shores exhibit. They have been working on this new exhibit for a long time now (we've had a zoo pass for almost a year and it's been under construction the entire time...) and Primary Children's Hospital hosted a Dream Night which just means the zoo closes to the public and it was a private event for those invited by Primary Children's. It was great - they fed us Chick-fil-A dinner and we got to see the brand new polar bear, seals, sea lions and otters. I apologize for the delay in posting - I've been busy getting ready for girl's camp! (For those of you that are not LDS, girl's camp is a 4-day adventure where I take the young women ages 12-18 from our neighborhood camping up in the mountains and teach them outdoorsy skills and we have friendship building activities that you just can't get in the city. We read from the scriptures, pray to our Heavenly Father, sing songs and have fun. It is a spiritual experience that draws us nearer to our Heavenly Father and each other as we learn ways to better ourselves, seek new ways to serve others and lean on our Savior for guidance. To learn more about my faith, click here.)

Anyway, the event was open to Primary Children's patients and their families. We invited my parents and Josh's mom and we had a really great time. JP had his face painted like Spiderman (he was so excited about it that we couldn't wash it off until the next day) and he got to meet a bunch of the local team mascots. We are so grateful for events like this and that JP has been feeling good enough to be able to attend! Here are about a million pictures of our night. I can't find my camera (seriously I just had it this morning...) so here are a few that Josh's mom took. I promise to get more up after the crazy week is behind me!

Interim Maintenance 1 - Day 31

Yesterday we took JP for his 4th visit in the 3rd phase. That meant a check up in clinic, a one-minute IV push of Vincristine, a 15-minute IV push of Methotrexate and a lumbar puncture with Methotrexate into his spinal fluid. Since yesterday was a lumber puncture, he couldn't have anything to eat until after the procedure. That always makes for a fun morning. The kid doesn't like food, but of course on the day he can't eat anything he is crying for breakfast. He really wanted M&M's so I had to pack some for the hospital and promised he could have them after his LP. He kept telling everyone he wanted some "en-a-mens" and it was pretty cute.

Normally we have the IV chemo before we go down to the RTU but it wasn't up from the pharmacy in time. We went downstairs, JP asked to watch Mickey Mouse Clubhouse and then they had me carry him into the operating room. He was happy to see Dr. Barnette again and gave him a big silly wave. He was really good to lay on the table and I told him as soon as he woke up from his sleepy-sleep he could eat all his M&M's and all of a sudden he got mad and started crying "I don't want to sleepy-sleep! Mom, I don't want to sleepy-sleep!" and then his eyes rolled back and he was out. Good ol' anesthesia. It is a little bit freaky watching your kid fall asleep with anesthesia, I don't know if I'll ever not worry a little bit.

When it was all done it took him about 45 minutes to start waking up. We went back to snuggle him and help him feel happy about waking up. He was coughing a lot (they usually put a tube down his throat during the LP so it always causes a nasty cough) and crying for his mommy. :( It really is so sad to see him feeling awful and disoriented. And, as is tradition, the first thing he wanted to eat was Cheetos. Once he had those he was pretty happy. We had to head back upstairs to get his regular chemo and we decided to order him some lunch since it was almost 2:00 and all he'd had to eat was Cheetos. He told me he wanted a cheeseburger and fries and when it showed up all he ate were a couple fries. Did I mention he has mouth sores? Chemotherapy, especially in increased dosages, can cause mouth sores. Add that to our already picky child and he literally doesn't want to eat anything. He has been losing weight, but he's still up a pound or two from diagnosis (3 months ago) so the doc didn't seem worried. His counts were all good this time (he went from an ANC of 0.5 to 1.3 in 10 days - we're so happy we kept him home and away from people because it really did help him build up a little bit of strength!) and they upped his dosage of Methotrexate. They aren't looking at a "goal" level of Methotrexate during this phase, they are just increasing it as long as he tolerates it.

Our next appointment should be June 11th and then hopefully we won't have to be back for 15 days to start the next phase. That means there is a window of opportunity for me to take the young women to girl's camp and not have to juggle my time between nursing a baby, taking care of JP, getting the girl's up the mountain and a hospital visit. It really is a tender mercy that we will have a small break from chemo so I can take care of my church calling without that added stress.

All our pictures from yesterday are on Josh's phone so I will add them when he gets home. I just wanted to get this posted!