Marcel Winatschek's Tokyopunk

The Blog


June 19, 2007

Well, today wasn’t the best news we could have hoped for…but we are keeping our spirits high.

Misty has finished 2 months of chemo and last week was time to get an MRI. Today we met with Dr Raval (neuro-oncologist) and reviewed the MRI to see if the chemo is working. Unfortunately, the scan was largely, inconclusive. We will have to wait another month and get another scan.

Kinda bummed.


April 24, 2007

The chemotherapy drug Misty will be taking is Temodar. Its about $2000 per treatment (thank God for insurance – they pay most of it). We went to the doctor a week ago to get the OK to start this and unfortunately, we couldn’t. It seems the Hypersensitivity reaction Misty had a few weeks ago screwed up her bone marrow and was taking a while for her white blood cell count to really come up. We felt like we wasted too much time already so the Dr ordered 6 days of Neupogen injections for Misty. Neupogen stimulates the bone marrow to make more white blood cells. Anyway, this stuff worked so we are starting that treatment tonight. Its taken orally for 5 days in a row, then the rest of the month it works its magic.

Please pray with us that this treatment works and that Misty won’t get too sick from this.

What is Chemotherapy
Chemotherapy is a drug that keeps cells from reproducing. Cancer is basically a group of cells that are reproducing with no purpose. Chemotherapy can potentially stop some of these cells. In the process, it also kills good cells…so its not the most pleasant process usually. There is no medical cure for cancer yet – but chemotherapy has come a long way and is getting better and better. Seven years ago when Misty had her first round of cancer, this drug (Temodar) didn’t exist. Today its the #1 drug for treating brain tumors. If God continues to inspire medical researchers the way he has, in another few years, we all may just have a cure.

Anti-Convulsant Hypersensitivity Syndrome

April 7, 2007

This was probably the worst week of my life. I spent most of the week feeling like we were in the middle of a “House” episode.

It started friday…Misty had a pretty big seizure. Shortly after, we realized that she had a 101 degree fever. Being only a week after her brain biopsy surgery, the neuro-surgeon decided it was best to get up to the hospital in case there was infection. So we go to up to New York Presbyterian. A simple chekout turned into an overnight stay, which turned to two nights, which turned into a week. Every day we were greeted by news that her white blood cell count had plummeted once again and that her liver was increasingly inflamed. Additionally, her fever never broke…it went up to 105 (and jumped back up there multiple times a day) and the doctors could find no infection or cause for it. After a few days we realized the most likely (and hoped for) answer what a reaction to a drug she was on. After stopping the seizure medications we had to wait 3 days before the medicine was out of her system and she slowly started to get better. Those days were tough. Misty continued to have an extremely high fever and white blood cell count kept dropping. The thing that made it all worse was that I felt like we couldn’t get the proper care we needed. I literally had to be the one by my wifes side taking her temperature and hooking her up to a cooling machine to bring her temperature down multiple times a day. I complained to the nurses but most of them had no idea how to use the cooling machine…it was completely surreal. The fever finally broke on day 6 and was followed by a full 24 hours of migraine. Misty described the migraine as more painful than giving birth (she had given birth 3 months before – so it was fresh in her mind). Again I felt helpless. Shortly after that though, we were able to head home.

Turns out Misty has Anticonvulsant Hypersensitivity Syndrome. One our of every 5000 people taking older style anti-convulsants (carbamazepine, phenytoin, phenobarbitone, etc.), end up with this (Misty is once again the lucky one). One week before when Misty had the bad seizure after her brain biopsy, they put her on phytoin (Dilantin). When the liver is involved, as it was with Misty, the mortality rate of this hypersensitivity is up to 40%. The good news is, we caught it in time and this should have no long term effects on her. It was a terrible week…but its over and she is feeling better. We are home now…and so glad to be with our baby girl. I think as bad as the physical situation was for misty, being away from Olivia was just as bad.

Thanks to everyone who visited and sent cards while we were in the hospital. That was really encouraging. We apologize for those of you drove up to NY and weren’t able to visit with us – 95% of each day was so bad we couldn’t take visitors. Thanks again for all your prayers and concern.

The Biopsy Report

March 28, 2007

Sorry for the lack of clear information about Misty thus far…public relations hasn’t been on the top of my to do list. Last week Misty went into the hospital to get a biopsy on her brain tumor. The surgery was successful. Unfortunately, Misty experienced some complications after the surgery. She had a prolonged complex partial seizure with loss of speech and all cognitive abilities and with excessive automatisms (random repeated movements of body). After regaining understanding she took a couple days to regain full speech and full use of her left hand. The good news is that this was caused by agitation of the brain during the surgery and will likely not have any long term effect. This was a relief. Sometimes even getting the smallest bit of air into the brain during a surgery can cause this.

We followed up with a Neuro-oncologist at New York Presbyterian on Monday to get the pathology report. Turns out she has an Anaplastic Astrocytoma. This is a grade 3 cancer (there are 4 grades marking the reproduction rate of the cancer). It’s classified as a high-grade, aggressive malignant tumor. Additionally, the tumor now has “fingers” into the good cells of the brain so the only potentially effective treatment will be chemotherapy. In contrast, the tumor Misty has in 2000 was a grade 2 astrocytoma that was mostly in a local area so the surgeon was able to remove the tumor and followed up with radiation treatment. After that Misty was in remission for about 6 years until this past summer when she starting having symptoms again (this length of remission was noted by the surgeon as unusual – in most cases, this type of cancer comes back more quickly). Misty will be starting a 12 month chemo treatment as soon as the medication comes in. The doctors expect her to respond well to it.

We are praying for a couple things:

  1. The chemo will stop and reduce the cancer cells. (temporary stopping is about 60% likely, with reducing being a much smaller percentage…we’re praying for a reduction!)
  2. Misty will not get overly sick while on this treatment. (this is a newer treatment which is overall much more easily tolerated)
  3. God will comfort and encourage my wife through this.
  4. A cure for cancer…so no one has to go through this.

We are thanking God for a couple things as well:

  1. Misty was in remission for over 6 years. During this time we were able to have our wonderful daughter who is bringing us joy through this whole process.
  2. Misty and I have been blessed with incredible families and friends. You are all appreciated more than words can express. I am so humbled by how people have shown us God’s love through prayers and meeting practical needs for us.

Overall we are in good spirits. God is bigger than anything and we are learing to lean on Him more and more. Thanks for caring.