Friday, February 27, 2009

Rituximab Update - High Dose Chemo Immediate

Haven spent half of today at the hospital having her chemo levels taken - she was at a toxic level earlier this week and today was in good shape. They met with her Oncologist for about 40 minutes and went over any questions we had. I had a few sleepless nights this week and sent a few emails to the doctors.

As I was driving home this evening her doctor called (he actually called 3 times today but I didn't answer). Remember April 1st! ...... well things change fast around here

During the 15 minute conversation her doctor informed me that he is very concerned and extremely anxious about Haven. He has reviewed all of her tests she has undergone the past couple of months and all the blood work. As noted by him (as best I can remember):

I have been working closely with Haven for 2 months and reviewing everything from the past 1 1/2 years of treatment. Haven is regressing too fast. There are new areas of concern and some of the recent damage can not be repaired. We have lost too much time and ROHHAD is progressing. We need to move to the next step. Cyclosporin is too slow for ROHHAD. I need to stop everything now before it gets worse. I need to see results and I need to see them now. Haven will begin Rituximab next Friday at 9am. We will discuss next week when you come in for her Cyclosporin levels.

Haven will begin heavy Rituximab starting March 6 and will continue on Cyclosporin at the same time. She will be on for a longer period of time now. This is one month sooner than originally scheduled. We will start her back on the Zofran - as this will help to keep her from being too nauseous.

Haven will also have an MRI on the Ganglioneuroblastoma tumor next Thursday at 9am.

As this is now our last weekend before this immediate increase in chemo, we will be taking the weekend to relax and hang out. We have crafts to make and lots of thank you cards to send out. Haven will be sick on this chemo - we know how the lower dose of it made her last year.

Thank you everyone for always sending cards and gifts to Haven. We truly appreciate everything. Haven has been working on small gifts to send to her new friends out there.

Rare Disease Day 2009


  1. I hope Haven has a wonderful weekend before this next round. I found Haven on MACS, and have been so glad to be able to get updates on her. I didn't know I could get so attached to someone I've never met. She's a sweetheart. Our thoughts and prayers are with your family,

    Love, Jen from NY

  2. I have no Idea if my post went; I am so sick of doctor's you cannot believe. Have no trust in them since 2006; tell Havey hang in and I hate what they are doing to her. I thought they knew what they were doing I am so unhappy! Havey is strong and determined but enough is enough they need to get on the ball with this. Tell Havey Candy is looking for another kitten; if I find one I will name it Haven that way I can hug her from Ohio.
    I miss you Haven.

  3. Misty and Kris,

    I will be praying that the change of chemo treatment will be successful for Haven. Tell Haven "Hello" for me. I think of Haven and her family quite often.

    Love and Prayers,
    Vicki from KY

  4. Hi Jen - thank you so much! We appreciate that you check in on her! She has a special magnetism....sometimes we go out and 3 or 4 ladies will just come running up to her and saying she's so beautiful and just love on her. We loves those people......I wish others would see the beauty and the happiness she brings to us.

  5. Candy - No one knows what to do about ROHHAD. that's the thing - everything is a guess. Other doctors are managing children and some doctors are trying other different medications and testing. We feel very confident in JH and they listen to me all the time - when doctors give you all their phone numbers and emails then I know they want to hear me. I am happy with them - I just can't believe we're doing this.

  6. Hi Vicki

    Thank you for all your love to Haven. She received a special package from you and just had to watch the movie. She'd never seen it before. We appreciate all your prayers. All our love to you. Thank you for being a part of our lives.