Delayed Intensification - Day 29

On Thursday, JP had a CBC done to see if his levels were good enough for chemo. His ANC came back at 1100, plenty high to continue treatment. I was a little sad that he was able to continue treatment, he had been feeling so much better and was acting more like our JP and I knew as soon as we took him back for more he'd be right back to feeling crappy. On the other hand, I'm so ready to get through this awful phase so let's do this!

I got a phone call reminding us of our appointment and the girl had said, "Clinic is at 12:30 and your RTU appointment is at 12:30." I was confused - they can't be the same time - and since clinic is usually 2 hours before RTU I assumed she meant RTU was at 12:30 and clinic must have been 10:30. We arrived at clinic and (at 11:15) they tell us his appt wasn't until 12:30 which meant RTU wasn't until 2:30. Dang. The worst part about going to the RTU is that JP can't eat or drink anything prior to the appointment and that's hard for a 2 year old! They were pretty busy in clinic and couldn't squeeze us in so they asked us to come back at 12:30. I asked them to order up his chemo - he was receiving two new kinds through his IV and with just a 2 hour window before RTU I didn't want to have to come back up to clinic after his lumbar puncture, it was already turning out to be a long day ahead of us.

We decided with our one-hour window of opportunity we'd go to the zoo. Hogle Zoo has a new Rocky Shores exhibit and it's amazing! Seriously, go see it. The zoo got about a million times better when this opened. We had just enough time to walk down to Rocky Shores, wave to the sea otters, see the polar bear swimming and wave to the brown bears then we had to make the walk back to the car to get back to clinic. Good thing we have a pass so walking in and out isn't a big deal. :) I'm glad we were able to have a few happy, quiet moments with JP because the rest of our day turned out to be pretty awful.

We got to clinic and got our room pretty fast. I knew we had to move fast because he was supposed to get two new kinds of chemo and one was supposed to be a 30-60 minute IV push and the other was a 15-30 minute IV push. Thankfully we had Jessica as our nurse and she was all over it and got him going as soon as we got there. Usually we go back to the infusion area and then get hooked up, but she started him in the room while he was having his check up and then wheeled him over to infusion. That was pretty fun for him to go for a ride!

Here's one of the toxic chemicals we gave him - Cyclophosphamide. This was a one-time dose of this chemo. He received that and Ara-C through his IV before we went down to RTU for his lumbar puncture where they put Methotrexate into his spinal fluid. We came home with orders for HomeHealth to administer Ara-C through his IV every day for the next 3 days and they will come back and do another 4 days in a row at home starting Friday. That, and there is another oral chemo (Thioguanine) we are giving him every day for 2 weeks at home too. When I say we, I mean Josh. I can't go near the stuff since I'm still breastfeeding Elsie girl.

Waiting for the lumbar puncture, JP was so cute and silly. Love this boy.

The doctor came to talk to us after his lumbar puncture (while he was still sleeping) to tell us that the anesthesia didn't work all the way at first. I had gone back with him before the procedure and was asking him for kisses and he was giggling and yelling "NO!" while he tried to duck my kiss attacks then he returned the kiss attack and we were all laughing until he got the anesthesia. He laid back and I left the room. When the doc rolled him over to his side to do the lumbar puncture he started moving around and moaning. They gave him more anesthesia and began the procedure. Sometime during the spinal tap he threw up so they had to stick a suction tube down his throat to keep him from choking on his own vomit. When we got to go back and see him he was not happy. He was having a hard time waking up from the anesthesia and was crying about something hurting. We couldn't understand him because he was mumbling through his words - the anesthesia is hard to talk through - and he was getting more and more upset that we couldn't understand what he was trying to tell us. He wanted to be held first by me and then by his Daddy. He was all sorts of drooly and coughing like crazy. We finally figured out he was saying his mouth hurt - probably more accurately his throat since there was a suction tube shoved down there - and we got him some pain medication to help him calm down. That put him into a snuggled up sleep and they had to keep us for another hour to watch him since they gave more medication. When he finally woke up from that it was more of the same crying, saying his mouth hurt, etc. We decided we could handle it at home and gathered our things. It was 5:45 before we made it to the Crandall's to pick up Elsie. Longest day at the hospital by far.

Once we were home, he was still not happy but he asked for a salad. He's been craving Cafe Rio lately but his sights have shifted from the tortillas to their salads. Josh and I usually get one and share, but now there's a third party trying to eat our dinner! JP would say, "Mommy, I need more lettuce!" so I had to go get some lettuce from the fridge and chop it up so he had more to eat. What a weird craving to have - salad! Especially since he's burned through 3 Costco sized bags of Doritos and 6 bags of Lays BBQ chips in the last month...

I was thinking about how weird our "normal" lives are now. This is what JP's medicine looks like - it comes in a thick plastic bag with instructions on how to stay safe while having the medication in our home. There are caution stickers on a lot of his medicine and some can only be handled while wearing gloves. Who would have thought our home would have so many things that are hazardous and dangerous to most humans, yet ironically they are necessary in saving our son's life. 

 I just wanted to share a sweet moment we had on Friday night after all the madness of the day wore down. We knelt for family prayer just before JP was going to bed and after we said "Amen" Josh asked JP to give Mommy and Elsie hugs and kisses goodnight. He sat still on Josh's lap, shook his head and looked up at Josh and said, "No, Daddy, I want a blessing." Of course it brought me to tears, what almost-3-year-old asks his Daddy for a blessing? It made me realize that he pays attention to everything - he must remember Josh giving him several blessings and maybe he even felt peace or comfort after receiving one the last few months because we didn't ask if he wanted a blessing - he came up with the idea on his own. In our faith, we believe that worthy priesthood holders have the power to bless the sick and afflicted here on the Earth by the laying on of hands. These blessings are available to everyone and work by our faith in our Savior and Father in Heaven. I've been blessed to have a wonderful husband that honors his priesthood and can give blessings when called upon and I truly don't know how I would be getting through JP's cancer treatments without those blessings lifting me up. The power of the priesthood is real and I know our Heavenly Father knows us individually and wants us to call on Him for strength and guidance. Anyway, I was so impressed that our sweet boy recognizes the spirit and the healing powers a blessing can have.

It must have worked because JP woke up Saturday morning feeling pretty good and has been pretty happy since then. He is so cute - today while getting his chemo he decided his "guy" needed treatment too. We pulled out all the "medical supplies" and JP helped his guy get his medicine through his IV just like JP does. He used an alcohol prep pad to clean the clave just like the nurses do before hooking up his fluids and meds. Then he scrubbed the area clean, administered the medicine and got a gauze pad and bandaid when he was all done. He told me the other day he wants to be a doggy doctor when he grows up, and I have no doubts about it - I'm sure he will be a doctor someday.