Quote from Haven's Oncologist that sticks with you: "I feel a lot of pressure. Chemo is a slow methodical process that you have to tweak to make right and it takes time. ROHHAD is a scary syndrome and can become a life threatening emergency overnight. Time is against us with Haven".
Haven had a full day of chemo on Friday. Dad and Haven got in to the hospital around 7:45 am to get ready for Haven's 8:00am blood test for her chemo levels. Then immediately after that started the other chemo for the day. I heard that after they gave her the Benedryl she passed out for a while. Let me tell you, when we do all day chemo treatments at the hospital and Haven is just laying in the bed waiting for the bottle to empty (6 hours later) it can be a LONG day! So sleep is always welcomed......I always request it to be taken through the port instead of orally! It hits her faster and helps her sleep quicker. Plus throw a hot blanket on her (they have these heated like from the dryer at home) and she is OUT!
Kris met with Haven's Oncologist for quite a while in the morning. Then I got a call around 11am to let me know what they had discussed and if there was anything I needed to add or if I had questions. I had to work so I couldn't be there. I know Kris gets nervous going in by himself because I'm the one the keeps track of dates, surgeries, doctor appointments, and research of ROHHAD. So I sent him a text of a few key items that he needed to discuss.
Haven will be having another surgery planned. We're waiting to hear from her surgeon as to when he feels it should be. Her eye surgery is March 26. This other surgery will be for the massive lump on her back. No one knows what the lump is but it is bothering her a lot lately. So once I hear more about that I'll update everyone. We will also be meeting with an Orthopedic doctors for her back and starting physical therapy as she is having too many back pain issues.
I received a printout from the doctor of Haven's weight and height since last January. I wanted the comparison for my records from the past year. It also shows her blood pressure each week and temp. So this was very exciting to me! I'm easily excitable!
We are now required to do a daily log of any changes and anything we notice. So we can look back on the records in one month and decide if she should be off this chemo and put on something else.
Haven's chemo dose was increased on Friday and Haven and I will be at the ER at Johns Hopkins on Monday morning at 7:45am! Whew.....luckily I have the day off and don't really like sleeping in! :)
Love to all!