Delayed Intensification - Days 4 and 8

Delayed Intensification - Day 4:

Monday, July 2 was Day 4 of treatment, which meant a visit to the hospital for Pegaspargase chemo. JP has had this chemo once before - in the very beginning, on day 4 right after diagnosis. This chemo is administered over 1-2 hours through his port and then we had to hang out for an hour to make sure he didn't have an allergic reaction to it. The problem is that our appointment was at 11:00 and the chemo didn't arrive up from the pharmacy until just after 1:00. We assumed it would have been ordered and ready for us since he didn't have to have a clinic visit or blood drawn prior to receiving it, but it wasn't. JP was not thrilled to be there until he saw the airplanes he could paint. All of a sudden he HAD to paint. What color did he choose? Red, of course. It had to be a Utes plane. Check out his cheesy grin - that's totally a Josh face. Love my boys!

This poor kid's skin gets so irritated every time we go in. We have to put a numbing cream on over his port about 1/2 hour before they access him so that the skin is numb and he won't feel it. Problem is that we have to put a huge blob of the cream on then cover it with a large clear bandage so it stays in place and doesn't get on anything. Then we get to the hospital and they remove that bandage, clean the area and access his port. The picture doesn't get close on how red his skin gets... one week it was so bad that the sticker ripped a thin layer of his skin off and he scabbed over in this large square. Thank goodness we had more time in between treatments then or I don't think it would have healed. We are trying a new kind of sticker and the only way I can think to describe it is that this new one feels more like saran wrap - super thin and flimsy - where the other stickers felt more like that laminating paper you can buy at the craft store. It still makes his skin super red, but he doesn't seem to hate having it ripped off as much...

Josh couldn't stay for the entire appointment this time. I can't believe how blesssed we've been with his job being so accomodating that he's been able to be at each and every appointment so far. This time we only got him for 2 of the 5 hours, but I'm glad he still got to be with us. We did a lot of sitting around while Josh was with us and it was after he left that they finally started the chemo. JP was extremely exhausted and took a nap on me for the entire 1+ hour it took for his chemo to be administered. That's extremely rare - ever since he was diagnosed he has basically refuses to nap so I just snuggled him and let him rest.

 Going...

Going...

Gone!

All snuggled in and trying to wake up.

Oh, and on our way home we had to find Spiderman so JP can show you how he holds his hands. JP always gets excited to see him and yells out, "He goes like dis!" I'm thinking that finding Spiderman and throwing coins in the fountains are becoming tradition with each visit... That's a lot of Spiderman pictures and even more coins I'm going to have to come up with!

After we got home I was doing dishes and noticed there were 6 medicine syringes and 4 medicine cups in my dishwasher all at once and I realized that's a lot of medicine I'm handing out in less than 24 hours... It really is crazy. He doesn't love it when he sees me coming but he's always pretty good to take his medicine so I count myself lucky; I've heard from other parents how hard it is to get their kids to take their meds so I can't complain. He really is a good boy that trusts us to know what is best and what he needs to get better. I have to laugh at the picture below - this isn't even all I was giving him at that moment, but I could only carry 3 syringes at once.

And here's a glance at our pharmacy:

Delayed Intensification - Day 8:

Friday, July 6 was Day 8 of treatment. This meant the same chemo as Day 1 - minus the lumbar puncture. He received Vincristine and Doxirubicin through his port. We finished up the week of steroids the morning of our appointment and have 7 days off of them. While his appetite had increased, he wasn't waking up in the middle of the night hungry and we didn't really see a change in his behavior during those 7 days. Now that it's 4 days later, I can assure you those steroids are still lingering in his system! He is so emotional and irrational - he will be laughing one moment and then freaking out screaming/crying the next. It's so hard to get him to stop sobbing to tell me what's wrong and most times I have to just hold him until he calms down. Part of me thinks it is the two-year old in him, but it's very easy to blame the steroids because he doesn't feel well and I know he's on a ton of medications. I give him the benefit of the doubt. And when he's really mean, he gets a time out.

He's taken to hitting our dogs and/or his little sister. I think he's feeling yucky and he wants someone else to feel bad so he takes his anger out on everyone else. Have I said that before? I'm sure I have, and probably recently. Anyway, this evening he walked up to Elsie, smacked her across the face and knew immediately he was in trouble. I watched the whole thing - he got that look in his eye, clenched his teeth and swung and as soon as he hit her his expression changed to concern and he put both his hands on her face and said "I'm sorry, Sis!" It's never okay to hit in our house, and he spent some time in time-out, but it's so hard to help manage emotions you don't know he's having until they are boiling over. I really think it's that "roid rage" and I'm not looking forward to Friday because just as they've had time to exit his system we're going to put him right back on them. So frustrating, but I'll do anything to get my babe cancer free. He also flips out when his pain medication wears off because of the dang mouth sores the chemo has given him. He cries out in pain and doubles over telling me how bad his mouth or his tummy hurts. This is the first time since diagnosis that we have been using the Oxycodone prescription they gave us to help him with his painful side effects. I keep saying we just take things a day at a time, and it's the honest truth. Sometimes I'm taking things an hour at a time. And sometimes I'm just holding on for the ride (or dear life)!

Dr. JP did a check up with Josh and gave him a clean bill of health 

He raided the fridge for treats

Wouldn't sit still for his chemo

Oh, and found Spiderman.

There was a little girl in the infusion area with her parents and by the look on her dad's face, I could tell they were "fresh." I didn't know that I'd be able to recognize that, but I did. He actually started talking to us first, asking where we were in treatment. It was interesting to talk to them - their little girl also has ALL and they are just two weeks in. Phase 4 is similar to Phase 1 of treatment so we talked a little about that, maybe we scared them a little bit, but I think it was good to talk to some new parents and let them know they aren't alone - nobody did that with us. We're both on Friday schedules for a little bit, so I'm sure we'll see them again.

In other news, we're revving up for the CureSearch walk in September! I set a goal for us to have 100 people on our team by the end of July and maybe I'm crazy but I think we can do it! If you can walk with us, it's Saturday, September 29th at Sugarhouse Park. You can go HERE to register to walk on JP's team, and if you can't make the walk, there is an option to be a virtual walker. It's only $10 to register and 100% of that money goes directly into pediatric cancer research. If you'd rather just make a general donation to our team, you can go HERE. Obviously I'm passionate about finding a cure for all types of pediatric cancers because my son is fighting leukemia, but the more I learn about childhood cancer the more passionate I find myself becoming. Did you know that the chemotherapy JP is receiving has not changed in 25 years? The treatment plan, or "road map" has changed through trial and error, but there has not been a developement in the type of chemotherapy administered. Childhood cancer research is ridiculously underfunded! That is another post for another day, but just know that I am detemined to be a voice for my son and every other child fighting cancer.