Thankful

“Overall, there is evidence of decreased manifestations of the patient’s Langerhans Cell Histiocytosis. The lesion involving the left maxillary is markedly smaller as is the lesion of the left mandible. The skull base lesion is stable though it does have a slightly elevated SUV. The lesions involving the feet have also almost completely resolved. The are not new foci of hypermetabolic activity identified.”

Good news, good news, good news!!!! The PET scan shows positive results! Methotrexate appears to be working! The doctors are very pleased and I’m following their lead. The area of concern is the skull (why couldn’t it have been a bone farther away from the brain?) since it has not changed in size and since the skull SUV is elevated since the last scan. The doctors have stopped short of telling me the SUV numbers are meaningless, but they have said we can’t put a lot of faith in the PET scan since it has only recently become a tool used in histiocytosis diagnosis. The confusion for me is that we are putting faith in it when it says the SUV numbers have decreased, so shouldn’t it work the other way? There is also the thought that “baby” cells trying to regrow the damaged area would light up on the scan also.

Our question of whether or not the damage around his orbital area is scar tissue still remains. Our doctor is considering a biopsy on the area. I feel like that is too invasive and unless it would change the course of treatment I’m not in favor of it. The plan right now is for Trip to have three more rounds of intravenous methotrexate so he will have a solid six months of this treatment under his belt. After that, assuming that everything is stable, we will move to an oral methotrexate at home. If there is a reactivation in less than a year, we will have to go to clofarabine. If Trip can go more than a year without a reactivation of disease, we could go back to methotrexate since we know that has worked for him.

We are in the hospital now getting chemo and have hit a bump in the road. Last night while sleeping the needle somehow became dislodged from Trip’s port, so methotrexate was going into the soft tissue surrounding is port instead of his blood stream. The methotrexate will take about a day to completely absorb into his body, but luckily, thankfully it is not one of the chemo drugs that could do long-term damage to his tissue. It is extremely painful for him, but in true Trip form he was a trooper telling jokes to the nurses in one breath and then crying and yelling in the next breath when he had to be accessed again. The next disappointment came when no there was no blood drawback from his newly accessed port. The fear is that the blood has clotted and the port will not longer be able to be used. They are trying to breakdown whatever is in there causing the blockage, but so far nothing has worked and everything put into the port has been very painful for Trip. This started around 5:00 a.m. today and by 8:00 a.m. he had his port accessed for the 2nd time in 24 hours and an IV in his arm in order to continue the chemo. The chemo has to be completed in 24 hours after beginning, so it was imperative to start it again quickly. Since chemo is the priority right now we will finish it tonight then focus on the port issue. The hope is tomorrow he can be accessed again (don’t tell him that) and he will be pain free and not so stingy with his blood. Otherwise, we are looking at surgery.

The lesson this week should have been a no-brainer as a parent, but we blew it… don’t give my kid something to look forward to without knowing for sure it is going to happen. With the good news we got from the PET scan, we decided to take Trip to the lake this weekend with friends. Even though he can’t even put a big toe into lake water, being out of town for a change of scenery with friends was going to be a big deal for all of us. He has been so excited and it’s one thing we keep talking about when things get painful around here. Now, with the port issue I’m not sure we will get to go. I can’t stand the idea of breaking his heart, but hopefully I can distract him by taking him to Toys R Us for anything he wants. (I folded like a cheap lawn chair in the early morning hours seeing tears stream down his face while being poked and prodded on and promised him the sun and the moon.)

I feel relief. I feel gratitude. I feel blessed. I am still confused, exhausted and worried, but overall the breaths I’m taking today are easier than the ones I took yesterday. Thank you to all prayer warriors/positive energy contributors/love providers. You all have made a difference and we are so very thankful.