Quick Post

Hi to all......I'm extremely tired even though I was asleep by 9:30pm last night.

Haven had a pretty rough day on Friday with chemo. She did not handle it very well and had an even rougher time at home that evening. Haven usually doesn't feel well about 2 days after chemo so it was very odd for her to have such a bad day. Her nurses were concerned as they had never seen her like that either.

I will give a better update tomorrow. We tried to spend a bit of time with my brother today. He just arrived home from 15 months in Iraq. So we have been trying to enjoy the day. Aunt Katie and baby Stryder are visiting as well.

I will give more updates tomorrow and maybe even take a picture or two!

Love to all

Fighting ROHHAD

I received a phone call today from Haven's nurse confirming her schedule and list of medication.

Rituximab will be every Friday and we will continue with Cyclosporin at 2 times a day with levels being check every other day. With Rituximab she will get Benadryl in the port prior to administering the chemo. This helps her with any reactions to the chemo and I like it because it relaxes her.

Rituximab takes about 7 hours to get the entire bottle in her system each visit. This also usually makes her quite sick about the 2nd day after receiving it. She will probably throw up on the drive home - as this was the case last year on the lower dose. So the car will be packed with proper buckets and such. We have a lot of risks with this chemo and this is why they don't really like to use it and definitely don't like to use it for very long. I have been refreshing myself with this chemo. Usually this chemo is used to treat non-Hodgkin's lymphoma.

We have received the possible side effects of Rituxan (same as Rituximab).

This is one dose of Rituximab - which takes about 7 hours and goes in to the port in her chest

RITUXAN IV: Rituximab may infrequently cause serious (sometimes fatal) side effects including severe breathing problems (e.g., hypoxia, pulmonary infiltrates, acute respiratory distress syndrome) or heart problems (e.g., heart attack, irregular heartbeat, low blood pressure). These effects are more likely if you already have heart or lung problems.

Due to the high risk of infection - if you are sick or think you are sick please respect that we do not want our daughter in the hospital and cancel your visit to our house. Anyone entering our house and planning to touch or be near Haven will need to use the hand sanitizer that is placed in each room.

For those visiting our house - a complete list of common side effects that are most likely to occur with Rituxan please click HERE. Knowing the side effects helps in determining when to call the doctors.

A temperature of 100.4 requires Haven to be in the emergency room due to high risk of infection in the port.

Tomorrow she heads back to Cardiology and has her levels check at Oncology.

Thursday she will have the MRI for the Ganglioneuroblastoma Tumor

Friday she will begin Rituxan and have her Cyclosporin levels checked

thank you to everyone for thoughts, prayers, and letters of encouragement! We continue to fight this with Miss Haven and all the other children we have learned about and love.