Tuesday, October 21, 2008

Oct. 21 Doctor Visit

Today Haven and I went to Johns Hopkins for the day. As you can see we had a lot of blood samples to take. Haven's toe is doing much better and we've finished off the antibiotics. I can see where this will probably come back - we'll continue soaking the toe two times a day.

Katie (Haven's nurse in Oncology) and Haven

Haven usually likes to draw her own blood but when Katie brought out to large bottles and about 7 small tubes Haven wasn't very excited. The two bottles kinda freaked her out. Above is one of them. Haven did extremely well as usually, I don't like to stay in the room when she does it but she wouldn't let Katie do it if I wasn't in there.
Haven flushing the port

So the news today - Haven's doing very well on the main counts - white blood cells are a bit high but she just finished with an infection so they expect that.

Prolactin levels are showing signs of going backwards in time. I met with the doctor and when she came in she was at a 70 and through the heavier chemo this summer she went down to a 30 and we saw a lot of improvement. Since ending that chemo in September they have noticed these levels are going back up. This is bad. The immune system is starting to attack her Hypothalamus again and there is the reason we have seen an increase in appetite, mood swings, potty problems, and sleep issues. We are simply falling back to the start.

The doctor was not exactly sure what the next plan of action is and was meeting with her other Oncologist to see exactly where we need to go now. I can't see doing this for another year and with stronger drugs. I don't know how I feel about it all right now.

They also want to move ahead with the surgery on the eye and possibly the surgery on the toe. Still don't know how I feel about it. Especially before Christmas and then her 5th birthday is coming up. She wants a party with all her doctors and friends and family to come.

Coming up we have:

Endocrinology - Nov. 10
MRI - Nov. 17
Chemo - Nov. 18

Waiting on:
Behavioral Psychologist meeting/testing
Sleep Study - overnight monitoring of her brain and actions
Nutritionist - I have to email her food for the next 7 days to the nutritionist then go from there

PS: If I sent you the family email and it had a picture called Katie Haven - sorry - her aunt is named Katie as well as her Nurse. :) I guess I should look at the pictures before sending them!


  1. Havey I am so sorry that things are not looking as well as everyone hoped; I think about you every night; G-Gma is always thinking about you; she just cannot come to see you at this time. I know Mommy will do everything she can to help and make sure you are happy.

  2. Hey there..

    I'm so sorry to learn that your daughter has been diagnosed with NB. I know these are some scary times for your family.. the best advice I can offer you is to "hang in there" and CLING to GOD! (It's our FAITH that's kept us sane)

    Take care...