Losing My Mind

So I thought that I had posted last week letting everyone know that we were discharged last Saturday and having a nice Thanksgiving week at home. But I checked the blog and I didn't. In my mind I had, or at least I had the intention of doing it. Sorry.

Andrew was discharged last Saturday. The rest of the week of treatment was a little scary. On Tuesday, he did suffer a great amount of pain. The worst thing in life is watching your child screaming out in pain. It was the worst pain he has felt throughout this entire process. He received more morphine and after an hour or so he was drifting off to sleep. Wednesday was pretty uneventful thankfully. Thursday however was a different story. His entire face swelled up including his throat. You know it is bad when the PICU doctor decides to sit in the room with you for 3 hours just in case your child stops breathing. But after lots of benadryl and some epinephrine, his swelling went down enough that the PICU doctor thought it was okay to just monitor Andrew from the desk outside his room. We were scheduled to go home on Friday but because of the swelling on Thursday they wanted to monitor Andrew for one more day. So we stayed until Saturday.

Andrew was happy to be home. He went back to school on Monday just in time for the Thanksgiving party. His favorite part of the meal - the whipped cream. The rest of the week was nice and relaxing. Since this was a two-week round, Andrew was pretty weak from being in bed for so long so we tried not to do much. On Thanksgiving day, we went to the auto show and saw the Ferraris and a Le Mans race care. Andrew liked that. We then headed to my parents' house for dinner. We had so much to be grateful for this year- for Andrew and of course for all our friends and family who have been unbelievably supportive throughout this whole year. We could not have made it through without you. So thank you for being there for us and helping us get through this.

As for Paul's dad, the cancer diagnosis has come back as Epithelioid Angiosarcoma. It is a rare cancer and because it is so rare, there is no treatment protocol, so we are still researching and getting third and fourth opinions as to next steps. PawPaw is still in the hospital recovering from his surgery and regaining his strength. The good news is that they are planning on discharging him in a couple of days. I'm sure he will be happy to be home again. Please continue to pray for PawPaw.

Andrew is back on his oral chemo and this time is having no problems swallowing the pills! Yeah! He doesn't seem that moody this time either. In two weeks, he heads back to the hospital for just a one week stay for the antibody treatment. Because of continued staffing issues on the Peds floor, we will be back in the ICU for the week. One final plea - Andrew is still in need of blood transfusions (and will likely have one when he goes back in the hospital in two weeks) and we have no more blood banked at City of Hope. So if you have any time to go to City of Hope and give blood, we would greatly appreciate it. No need for platelets at this time.

We hope you had a wonderful Thanksgiving!