Tuesday, February 17, 2009

Oncology ROHHAD Meeting 2-13

So I remembered this morning that I forget a lot! I believe it's because we see way too many doctors and we have way too many conversations with doctors and ourselves that we forget who we've told something to and what we've even told them. I was talking with my friend Emily this morning and realized I had already told her and then I was talking to Julie (Mason's mom) and realized I hadn't told her. AND I talk to Julie multiple times a day. I know I've called family this weekend to tell them but I don't talk to all of the family. So here is an update from Haven's meeting last Friday with Oncology.

So as most know, I'm the loud one in the family and I am constantly challenging the doctors. Which I'm sure is really annoying to them. Well, I have not been very happy with the chemo we are on and felt like Haven was getting worse and worse. I thought this was supposed to be the cure to her ROHHAD and I haven't seen anything.

On Jan. 1st Haven was 68 pounds and on Feb. 13th she was 78 pounds. Instantly I was upset and emailed her doctors and had Kris talk to them about it. I wanted her off the chemo immediately. 10 pounds in one month is crazy! I also gave Kris a list of questions I had so he could ask them for me and he was texting me while he was in there. The doctor always tells him to just incase he forgot anything. The doctor knows Kris will be in trouble if he forgets anything....I think it's a joke between the two of them!

When I got home on Friday Kris explained what happened at the visit and now I understand why Haven is on Cyclosporin and what we are doing.

APRIL 1ST - this will be a big day! Here is what I now understand:

She is on Cyclosporin until April 1st when her doctors will take all of the results, good and bad, to the medical board. At that point they will decide one of two options.

1. IF we are seeing results and noticing changes: They will change her chemotherapy
2. IF we are not seeing any results they will start to monitor her without the chemo

As always, we ask for straight to the point honest scenarios from the doctors. The chemo she would change to (which he did not give a name) would be a heavy dose and would make her sick. Guaranteed she would be sick and that she will be at a high level risk for infection. Essentially putting Haven in a "bubble" world for a while. Everything would need to be sterile and she would be wearing the mask.

IF we go this route we will most likely not allow visitors to the house as we will need to keep her away from anything she could possibly get.


Our last resort would be for nothing to work and to just monitor her. Why? Everything can go bad so fast. We know there are 30 or so kids in the world that have ROHHAD. But what we also know is that ONLY 6 children have Ganglioneuroblastoma Cancer mixed with ROHHAD. Haven has both. Of those 6 children, 2 have passed away before age 12.

So I will lay off the doctors for a while and follow their programming and appointments and keep notes of anything new or any changes. If you are planning to visit Miss Haven the best times would be between March 1st and March 22nd. After March 22nd we will be preparing for her surgery and hopefully news from the medical board.

PS: the charts were wrong on Haven. She was never up to 77 pounds. On Feb. 4th she weighed 74 pounds and today she is down to 71 pounds. We have lost about 1 pound per week.

1 comment:

  1. Elizabeth Gaustad & FamilyFebruary 18, 2009 at 7:52 PM

    Haven you look so cute in your sleep study picture! That is so great you were able to sleep and show them what your sleep is like. It must feel really funny all wired up like that! We hope you get good news from the bone scan and your other doctor visits. You & your family are so brave and strong. We are saying special extra prayers every night for the chemo to work and for you to feel better! Have a good day and know that you are in our thoughts. TerriAnn & Elizabeth Gaustad, Lebanon, IN

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