We received a wonderful surprise today in being able to go home after just one night in the hospital. Yippee! That usually doesn't happen for us! So we are home still connected to IVs for nutrition and antibiotics. We continue to switch between our roles as parents and nurses.
Now on to other things...
Eek! And Aak! And Ugh! And Seriously?! As of a few hours ago I will be flying out to San Francisco on Tuesday to take Case to a consultation appointment at UCSF for radiation therapy. We will have appointments on Wednesday and fly home Thursday.
Why does everything have to happen so last minute? There are no frequent flyer tickets available and Corporate Angel was already closed by the time I found out we were going. Thank goodness we have some funds from all of our awesome friends' fundraisers and generosity!
And also thank goodness that my mom and dad will come with me. They lived there for four years while my dad went to dental school, so they are my emotional support, chauffeur, travel agent, babysitter, and best of all, my mommy and daddy! Graydon will stay in Texas with Xavier.
The actual treatment would take place in about five to six weeks. We have one more chemo to do and recover from that will begin September 4th. The treatment is called MIBG therapy. The technology is also used diagnostically with a scanner. Case has had several MIBG scans that show bright spots where there is live cancer in his body.
With treatment, a much higher dose of radioactive isotopes are injected into his body that targets the NB cells. He actually won't feel sick or get neutropenic like he does with chemo. The big problem = his whole body will be radioactive in and of itself. He has to stay in a lead-lined room with a catheter in bed for 3 to 7 days until he is no long radioactive. Which leads to another big problem = we are not allowed to spend more than ONE HOUR with him every 24 hours. So essentially he has to stay by himself...in a room...with IVs and a catheter...while he is radioactive. He is 20 months old.
So that leaves me as a big old ball of stress, which is a huge understatement. We wouldn't not do a treatment that could save his life just because it is hard. I am just scared and my heart already hurts for him for that isolation time. We apparently will have him mildly sedated during those days.
I feel like life just keeps getting harder and harder. There is still so much to be thankful for, and I recognize that every day. It would just be easier for me to get through all of this crap if I knew he was going to make it in the end. It feels like the biggest slap in the face to think of going through all of this as a family and to lose him in the end anyway. I guess what I just wrote defines what faith is. A belief in things unknown. I have faith; now I just hope I have the courage to do everything I have to do.