Delayed Intensification on hold...

Just a quick update - JP did not make counts to continue treatment this week. That just means he needs more time to recover from the last "round" he received. His ANC (ability to fight infection) has been 200 for two weeks and was 300 on Thursday. We'll have blood drawn on Thursdays until his ANC gets up to 750 and at that point we'll resume chemo. Thanks for all your thoughts and prayers!

ER, DC and BMs

BM stands for bowel movements in case you didn't get it... How's that for a blog title??

After finally talking to the doctor with the (good enough) results from JP's CBC last week, Josh and I took a quick trip to Washington DC. Whaaaaaaaat?? You left your son who is fighting cancer?? Yes we did. Also, we left his sister. Don't worry, they were left in the very capable hands of their grandmother and we flew standby with the plan that if something happened to JP and we needed to be home we could always purchase a ticket and get home in a matter of hours. I thought we'd be able to get away from cancer for a minute and remember what it is like to be carefree again, but I was constantly missing my kids and looking around at everything through my "cancer-mom" eyes and I was so grateful JP was not with us. Everything around us is covered in germs - especially airports and subways - and I am sure I would have been a freak about sanitizing every surface if he had been with us.

We went to see the Braves play the Nationals... it basically rained on us the whole time, but that just made me and my frizzy hair more beautiful for Josh to look at.

  

Did you know the Nationals have a statue of my husband? Well they do. Because he is that awesome.

Anyway, JP is considered neutropenic - meaning his ability to fight infection is basically non-existent and if he gets sick it will manifest itself by a fever and if it's 101 or higher that means an ER visit. I asked the doctor if he thought it would be ok if we left for a couple days and he said if it were his child, as long as Grandma knew the rules, he'd go. We decided to chance it and left Sherri with the warning signs to look for and instructions not to go anywhere or let anyone come over just to keep germs at a minimum. I guess I should have known that if I tried to leave his side he'd get a fever...

We left on a red-eye flight Thursday night and Friday he was fine, well Delayed Intensification fine. He was complaining about his tummy hurting and wanted to be held most of the day, which is what he's been doing this whole phase, so we figured he was ok. Saturday he wouldn't walk and complained about leg pain also. We knew he had been constipated and thought that could explain why he wouldn't walk and maybe the tummy aches too. He's been on Miralax for a while (basically since cancer started since all the medications cause constipation) but the doc always told us to give Miralax until he has a bowel movement, then stop and start again when he seems to be having troubles. Well, with 3 poops a day we figured that wasn't his problem.

We had a fun day on Saturday with Colette around DC and on our way back to the hotel (at 11 pm) got a phone call that JP was having a fever of 100.3... talk about your heart dropping into your stomach. Here we were, 2,000 miles away from our boy that probably needed to go to the emergency room, and all we could do was make phone calls. The thing about a low-grade fever is that if it's 100.4 for more than an hour or EVER hits 101 he needs to be in the ER. We are never, ever to give him Tylenol because that will mask a fever and they need to know what is causing it. I called our neighbor (who used to be an oncology nurse) to go check on him and when she took his temp it was 100.8. Yikes. We decided to try and fly home on the first flight out in the morning (just 5 hours away at that point) and I called Primary Children's to speak to the on-call oncology doctor. She said since he hasn't hit that "magic" 101 and was acting ok, that we should wait it out and see if it was going to get worse. That gave us some time to get back to the hotel, pack our things and head out for our flight home. Turns out we didn't make the first flight out, JP woke up much happier with just a 99.7 fever and by the time we did get on a flight and got home later that night he was still acting pretty good, aside from the tummy complaints. We were so glad to be home and even more glad that JP was feeling ok-ish.

Oh, Colette. 26 years is a long time to be friends with someone and we still act like kids when we get together. Some things never change and I just love her! Now if only I could see her more often...

We managed to squeeze in two baseball games and most of the monuments in our very short trip

On Monday, JP still complained about his tummy hurting. I called into clinic and asked for our doctor or a nurse to call us back - it still seemed like his medicine wasn't helping. Of course, they took all day to call us and by the time I got ahold of someone, it was after hours and the doctor advised we head to the ER because, even though he didn't have a temperature, there may be something else going on besides the normal heartburn side effects. We got to the ER and they decided to do some x-rays. He was so good to lay so still and gave us thumbs up every minute or two. The doctor came in and says, "Well, he is very constipated!" We both looked at her like, how? He literally had been having poop after poop all day. She almost couldn't believe he'd been having bowel movements, but we assured her we'd changed 4 poopy diapers in less than 24 hours. She thinks that the Miralax is softening his stools, but that the soft stool is going around the hard stools and coming out. Poor guy, no wonder his tummy has been hurting so bad! When I can post them, you'll have to check out the x-rays - the dark spots are all hard stool in his intestines - and he is clear full up through his ribs. He is so constipated even though he is still having regular bowel movements! Weird. They couldn't decide what to do since he is immuno-compromised - it's too dangerous to do an enima because of the risk of infection and surgery isn't really an option either. They gave us some Exlax to use in addition to the Miralax and told us to call clinic if he's not feeling better by Wednesday. We're so glad it's not something serious and that they sent us home instead of admitting him. Funny that we are so looking forward to messy diapers, it's the small things that make us happy! Next time you or your kids poop, just think about how blessed you really are. Haha :)

To make matters worse, he's lost his hair. Maybe that doesn't actually make things worse, but it makes this cancer thing more obvious on the outside. His bald little head breaks my heart, but it is so soft to rub I think I will rub it for good luck every single day. We decided to shave Josh & JP's heads again - JP was not happy to have his shaved but had a good old time shaving his dad's! I don't know how long it will be before his hair comes back but I already miss his bright blonde hair. :(

I hope this post isn't too scattered... JP seems to be feeling a little better so hopefully we can move past this terrible constipation problem soon.

Garbage

JP has felt like garbage ever since his chemo last Friday. Not that I'm counting, but that was 6 days ago and I figured it might be rough for a couple days after but not this long! We've been fortunate enough that JP has handled everything up until this point pretty well - playing-baseball-and-shooting-hoops-after-chemo well. He complains all day that his tummy hurts, not surprising because (we've heard) the new chemo he's getting can cause crazy bad nausea. He's never thrown up since he was diagnosed, which I think is a miracle in itself given all the awful things we've pumped into his little body. When I ask him to point where it hurts, he grabs his ribs, dead center in his chest. That makes me think it's heartburn, which makes sense because the steroids came with Zantac to combat heartburn. The only thing that worries me is that Oxycodone doesn't even take the edge off of his pain. That's some strong heartburn to be able to still hurt after Oxy! I take that back, sometimes after he's had Oxy he's silly for about 15-20 minutes and then goes right back to complaining, but more often than not we aren't seeing any pain relief for him. One of our neighbors came by the other day right after he had gotten some Oxy and he was acting like himself, he was talking away to her and when she left he said, "Mom! She had pretty lips! And eyes like us!" Cracked us up and just 20 minutes later he was back to crying/whining on the couch about his tummy. They switched him from Zantac to Prevacid (our first really expensive prescription oddly enough) and I don't know how long it takes for that to start working but he's had it for 2 days now and still no marked improvement. Maybe today. I really wish I could take it all away. That, or I wish cancer was a person or a thing that I could punch in the face and kick in the shins for what it's doing to my sweet boy. Stupid cancer. 


In other news, his appetite is quite funny. We've gone through at least 12 ounces of Cafe Rio's tomatillo dressing, about a dozen burrito sized tortillas, countless corn tortillas (made into "little chips" like they top your salad with), and almost 3 bags of Lay's BBQ chips. Highly spicy and/or salty seem to be his preference. He doesn't like anything but water to drink - yesterday I did get him to drink some Pediasure juice but he gagged after a few sips. I wish (if I can't fight this for him) that for just a moment I could taste what he is tasting or feel the way he is so I can understand it better and know what to offer that might help him feel better. I had a CBC (complete blood count) done yesterday to see where he is and to see if it's normal but the hospital won't call us back. I called at 3:30 yesterday knowing they close at 5:00 and they said that a nurse would have to call us back. At 4:30 Josh called and they told him the same thing - he asked if they close at 5:00 and they promised someone would call back... we still haven't heard. I just hope they call this morning so we know what plan of action to take - I guess no news is good news but I don't like that we got the bloodwork done and to the lab in plenty of time for us to have known yesterday but we still don't know anything! Oh, the impatience of a mama bear trying to fix her cub...

Delayed Intensification - Day 15

Yesterday we had our shortest day at the hospital - 2 hours! - but the after effects have been the most rough. His numbers dropped way down - last week his ANC (ability to fight infection) was an all-time high of 3.8 and yesterday he was 0.2. The 3.8 was probably not very accurate, he was on steroids at the time and they give a false sense of health. It's just scary to think that the chemo he's being given is so strong that it can drop his levels that drastically in such a short amount of time. JP would need to be at very minimum 0.5 but preferably at least 1.0 for us to feel okay taking him places - needless to say we cancelled our reservations to a private screening of Brave and a work party at Seven Peaks.

The actual hospital visit for his chemo was fine, he laughed with the doctors and nurses, told them how much he loves boxing on the Wii, got two bags of yummy BBQ chips and picked out a root beer. Once we were home, we could tell he was not feeling well. He's very emotional and cries about most things. It's hard to know what he wants because he won't stop sobbing about it long enough to tell us what is wrong or what he needs. Thank goodness Elsie is pretty easygoing because we need to focus a lot of our efforts on JP right now. Days like today remind me how sick my son is. Most days I can pretend he doesn't have cancer because he acts so normal. Not today. I'm not usually a Debbie Downer, but today I hate cancer and what it is doing to my son. Stupid cancer.

Here's our hospital pics from the day:

Anyone surprised we found Spiderman?

Last night after we got home... just laying on the couch

Thank goodness for Angel Mail when you feel yucky!

Got some Oxy in him and managed a few smiles

But this is how a lot of the night went. Poor little man just feels crappy!

Today we are snuggling on the couch while Dad is out getting some supplies. Namely: tortillas, chip strips, and "sauce" (the house dressing) from Cafe Rio. Then, at JP's request he is also grabbing goldfishes, root beer, BBQ chips and yogurt from the grocery store. Basically if he wants it, we will buy it for him. It's hard to say no to your kid fighting cancer (especially one on steroids)!

I do love that he is still our sweet JP and has good moments among all the bad he's going through. I just wish we could take it away and fight it for him! I think he handles it all better than I ever could, and he doesn't even realize just how brave he is. Most people never get the chance to meet their heroes, but I've been fortunate enough to have given birth to mine. We just love our little man!

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.