Day 29

We knew today would be a hard day, and it was. Last night we tried to keep JP up as late as possible since he wouldn't be able to eat anything after midnight in preparation for his little surgery but by 10:30 he was begging for "mine bed!" We put him to bed and tried to get some sleep ourselves. Thankfully he slept until 5:00 this morning, but from 5:00-6:30 he cried and yelled for any food he could think of. When we didn't give him a roll, he asked for mac & cheese. When he didn't get that, he asked for pizza. When that didn't happen, he asked for cereal. And so it went until he had listed literally every food he has ever eaten in his life. At 6:30 Josh decided a drive up the canyon was in order so they left Elsie and I at home. JP fell asleep and Josh enjoyed some peace and quiet. When they got home at 7:45, the crying/yelling resumed. Our appointment at clinic wasn't until 10:30, and boy it was a long couple hours before we left for PCMC. Of course, we couldn't leave until JP was dressed and he insisted he wear "MINE NIKE SHIRT!" Being the wonderful mother that I am, I had not washed it from 2 days ago (it's the t-shirt and shorts in the last post where he's dancing) and when I told him it wasn't clean he threw a huge tantrum. I pulled out a brand new Utah Jazz t-shirt and offered several other basketball shorts and he wasn't having any of it. It was Nike or nothing (he is is father's son after all...). Sometimes there are battles worth fighting over and sometimes there are TJ Maxx stores 5 minutes away that will have a Nike outfit for $12.

At clinic, JP yelled at everyone and as soon as we were in our room he started demanding my bag. He knew there were goldfish and an uncooked mac & cheese packet in there (he asked me to bring them) and he also knew we were at the doctor's office so he figured it was time to eat. We had been telling him all morning that he could eat when the doctors were done seeing him, but he obviously only heard the eat-at-the-doctor's part.

He wore himself out and wanted his mommy. Of course I was happy to hold him and he was out in just a few minutes.

Once we were done at clinic they sent us to the RTU for his LP (lumbar puncture) and bone marrow biopsy. We were early, so we were shown to our room to wait. JP still wanted me so we laid on the bed and 40 minutes later we woke up. Seriously, snuggles are the best. Thanks to Josh, we now know what I look like while sleeping!

The procedure took about an hour and a half and we'll have results sometime next week, hopefully by Tuesday. When they called us back, our sweet boy was laying there looking miserable. I really hate this part of treatment because he feels so awful. Ok, I am truly grateful for the treatment but I really hate that cancer has taken over our lives and now dictates where we will be for the next few years. My son's childhood is not going to be what I thought it would and for that, I hate cancer and anything that relates to it. I know he needs the treatments and procedures, but it rips my heart out every time I have to take him to a place he doesn't want to be, hold him while they poke and prod him and then send him off for a procedure where I just have to trust he's going to be ok. I know we are in amazing hands, it just breaks my heart to have to go through all these motions.

He had a really hard time waking up this time. He was yelling, hitting and swinging his head back and forth trying to head butt me. We have never seen him so angry and I choked up a few times. It's just the medication, it's not our son. We are no longer on the steroids and they told us it will take a few days before they are completely out of his system, and we are so happy that our boy will be coming back to us soon.

As far as his levels, his ANC is up to 3.1 (normal is 5.0). This is amazing, but sometimes the steroids can give a false sense of health. His platelets are up to 221,000 (normal is 150-400,000) and his white blood count is up to 6.5 (normal is 6-17). We will have some blood drawn a week from Monday to see if JP is healthy enough to start the next phase a week from Tuesday. Yep, that means we will not be going in at all next week! 10 days without a visit to the hospital, what are we going to do with ourselves?! I joked that we should go on a mini-trip to St. George or something... but I work weekends and Josh doesn't have a lot of hours he can take off work so it probably won't happen.

The doctors said we can start taking him out, but not to places like church, the grocery store or malls. Basically if lots of people will be there, we won't be. But we are looking forward to some play dates and trips to the park in the coming weeks so we can get a sense of normalcy back.

Thank you for all your thoughts and prayers today. We feel so blessed to have so many friends and family that love and pray for us. We love you all and pray for you too.