Medical Updates

Haven has Rituxan tomorrow - her full day of chemo at the hospital - and it has been requested by her Oncologists that I join Kris and Haven at this meeting to review everything. I do not normally go to the chemo appointments but since her doctors are urging me to be there I will join them.

(PS: Hi Oncology Doctors - they told me they read Haven's blog so this will be a test!)


What I know:

Haven will remain on Cyclosporin twice a day for a minimum of 6 months
Haven will remain on Rituxan for a minimum of 6 months

They will not alter this schedule or make any changes. I have been and will continue to keep a daily log of Haven and monitor her for any changes - positive or negative. At the end of her 6 months her doctors will discuss her files with the medical board for further review.

Haven is still on schedule for surgery on March 26th. Haven is at a high risk on this surgery due to the ROHHAD and the chemo. The biggest concern for her doctors is her being in anesthesia. The risk of her stopping breathing is significantly higher due to the ROHHAD. We have already been called about Haven staying over for observation - but I have requested that this only be done on an as needed basis and not automatically.

I also spoke with Haven's nurse today - the ABG (Arterial Blood Gas) will also be performed during surgery. She has to be under anesthesia to have this done so we had to make sure it happened at the same time as the other surgery. Haven's ABG will be done through her wrist. I am told she will have more pain from this than the actual surgery.

On March 27th - Haven will be back at the hospital for her full day of Rituxan.

April 9th - We will meet with Haven's Pulmonary doctor - Dr. McGinley. He will begin to handle Haven's case from this point forward - re: respiratory functions. He will review her ABG results with us and begin to keep a constant monitored file for Haven.

Early May - We will meet with Haven's Endocrine doctor Dr. Cooke - for her 6 month check up. We will look at her growth and talk about her immediate future where he is concerned. He has been working close with Haven's Oncology team and the Orthopedic doctor.

Chemo and Infections

Haven started her first dose of this other chemo last Friday. By Saturday, there is an infection in her big toe on the left foot. By Sunday morning, there are three more toes on the right foot that are infected.

By infected - I mean green, gooey, swollen.

By Sunday afternoon her big toe on her right foot is cracked open and bleeding. The bleeding has continued and during chemo yesterday at the hospital it was bleeding again.

She had 3 doctors look at her feet yesterday and the decision was made that she needs surgery on the toes.

Haven has less than a month to do this surgery because at that point her immune system will be gone and the risk increases significantly.

Considering that we already have surgery scheduled for her eyes on March 26th this only leaves me with next week available. Haven has an appointment with the surgeon on Tuesday, March 17th and hopefully we can get the surgery done next week.

Making it two surgeries in two weeks. If we're hard to reach over the next few weeks you will know why.