New Central Line and Radiation News

Friday, August 31, 2012

Dill Pickle got his new central line yesterday morning; also known as a Broviac, which is another kind of port with 2 tubes hanging out of his chest.  Dillon, Luca, and I got up at 5 a.m. and were checked into the surgery center by 5:35 a.m.  We were tired but in good spirits.  Dillon did not get anxious until right before the surgery but, when he discovered that at this hospital the parent is allowed to go into the OR and stay there until the child is asleep, he calmed down and was in high spirits.  The staff here are AMAZING....they were so funny, friendly, and personable that many of Dillon's normal fears did not even show up.  They all made him feel welcome, safe, and comfortable.

These two Buckley boys get ornery when they have a lot of unstructured time...and although that can be frustrating as a parent, it is such a joy to see so much love and affection and good-natured fun happening between them.  It is just so "normal."  There was none of the "tiptoe around because my brother is sick" coming from Luca and no "don't bother me because I am sick" coming from Dillon.

Deep discussion on exam table about how to spend credits they earned on a game earlier in the day

A long tedious day of waiting, praying, and then the after effects of the anesthesia and the dose of chemo they placed in Dillon's spinal canal. Overall, it was not as difficult or as scary as I was anticipating.

I am not going over in detail all of the appointments that we are going to....you would get bored and I would run out of space....but we have seen lots of doctors this week and have more to see next week.

Today, Friday, Dillon and I went to Radiation Oncology.  While Dillon played games in the children's room, I sat with 3 doctors and learned all about radiation including why they do it, what it is, how it is given, and the long long list of potential side effects.  There are 3 levels of side effects; immediate, short-term, and long-term.  The only ones I will share at this time are the immediate because those are certain and right around the corner.  So the main ones are nausea, vomiting, diarrhea, and fatigue.  Next came a "low level" CT scan to make a map of Dillon's body so when he goes in for radiation they know just exactly how to place him on the table.  Here is Dillon going through that process.

Going into the CT scan for his mapping for radiation

High Spirits and Silliness all day long

The red lasers help the docs map Big D's body for future radiation. Also you see the new central line (the white tubes)

For the grand finale of excitement today......we were told that because of Dillon's amazing and complete response to the last round of chemo; i.e. being completely cancer free; HE DOES NOT NEED CHEST RADIATION!!!!  This is great amazing news.  The plan was initially that he would get 9 days of direct chest radiation, which has a long list of significant side effects including issues with the lungs, heart, esophagus, and thyroid.  He will still receive the Total Body Irradiation, which is part of getting ready for transplant, but this is at a much much lower level and the risks are then also lower.  So this was great news.  I have worried about that chest radiation for weeks.

The pre-BMT regimen for obliterating his immune system is 3 days of total body radiation twice a day (so 6 doses) and then 5 days of very very aggressive chemotherapy.  The radiation and chemotherapy both have 2 jobs.  The first is to make sure every single cancer cell is really really really gone (even the tiny ones hiding out and playing dead) and then also to kill off Big D's bone marrow/immune system.

As it stands, Dillon's radiation will be on September 18, 19, and 20.....we check into the hospital on September 21 and begin chemotherapy.  About 5 days later he will receive his new bone marrow and begin he long climb back up the mountain.....a mountain with ice storms, man-eating lions, and noxious gasses.....but we will dodge and avoid and manage all of the obstacles and the outcome will be a brand new immune system and a boy who has been CURED of cancer.  My boy....my sweet, innocent baby boy will be back on track with evolving into the amazing man that he was put on this earth to become.