Monday, July 16, 2012

Leukemia - How is Jemma? - Day 29


Today was my husband's birthday so Jemma and I made him a flourless chocolate cake. I love this quick and simple recipe from the Raw Food Made Easy cookbook. Dates, cocoa powder, vanilla, walnuts and a little bit of water and salt are mixed together in a food processor. Then the sticky mixture is shaped into a cake. It's so quick and delicious. 

We gave him a Star Wars t-shirt. He was surprised that we got one here in the hospital. Actually I ordered it on the internet and he unknowingly brought it to me.

A lot has happened since the last update. The biggest news is that if everything continues to go well we will be going home on Friday afternoon. Today Jemma had chemo. Thursday she will have a brain scan which is part of the routine baseline testing. Friday she will have a lumbar puncture, bone marrow withdraw and chemo. Then we will hopefully go home for the weekend.

For the next seven days all the children in the cancer ward will be taking nine pills daily in addition to their normal regimen. Apparently a few days ago a patient was in the ward with an extremely contagious virus. The pills are a necessary precaution because the children have poor immune systems.

Also today, Jemma's steroid dosage was reduced. Over the next nine or ten days the daily dosage will be gradually decreased to zero. Steroids are the medication that has had a major impact on her diet.
A few days ago a German friend brought us stachelbeere (gooseberries). I had never eaten them before. At least not that I remember. They were very good. Although I liked them, Jemma did not. It's very strange, because her food preferences have changed. For example, normally she would eat as many blueberries as she was given or could get, but over the past two weeks she has decided they are too sour and she doesn't like them. She would rather eat a big piece of meat.

The last bit of news is her stomach aches and the rashes on her hands and feet have all disappeared.

Leukemia is by far the most difficult thing I have ever had to deal with. But as bad as it is, when I look around the hospital, I am reminded constantly that it could be worse. Jemma was diagnosed only three days after we initially visited the pediatrician. There are many kids here with undiagnosed conditions. Because doctors have a decent understanding of Leukemia, her treatment plan is very well laid out. Unfortunately the process cannot be speeded up. She will not get better soon. She will get better in two years. Fortunately, the doctors know exactly which medications and dosages she will receive over the next two years, and what to expect after giving her those medications. I have always been someone who functions better when I know what to expect, and this plan helps me a tremendously.

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  1. Oh so excited Jemma will be going home on Friday!!! Such wonderful news. You have managed this difficult situation in your life with such strength. Happy Birthday to you husband

  2. so happy to hear that you will be able to go home for a while. wonderful news about the rash and the stomach aches!!
    Bless you all

  3. Oh have a wonderful wknd at home Julie and Jemma!

    1. Hi Julie.
      I'm Anne-Gaëlle.
      Happy birthday to your husband!
      I may have an idea of small excursion for you and your family, if Jemma can go out of hospital:
      Do you know the mare's milk? We visited in June in France near Bitche (45 minutes away from Ramstein) a horses farm, where they make bio-dynamic mare's milk. very high quality. It seems, it's very good for the people under chemotherapy treatment, to fight the side effects and more. They have 23 years experience. I wrote a mail to the owner that had received us. She told me that they speak a little English and would be ready to explain how take this milk. Here is the web site of jum'vital:

      Here is the address:
      La Voie Lactée - Eschviller
      57720 Volmunster - France
      Pays de Bitche

      Here, another web site on the mare's milk:

      I am still in kindergarten tomorrow and Friday morning.
      I hope that this can help Jemma.

      Thinking of you!

  4. Thank you. That is an excellent idea. We were talking about you today. Jemma received the snail glove you made her. Tonight she tried it on and was very excited that it was big. She told me it would last a few years while her hand grows.

    1. I am glad to read that Jemma likes my puppet!
      I forgot: the Voie Lactée is open Monday to Friday 9-12 and 14-18. You can also come on Saturday morning, if you call, but there would be no Secretary.
      have good days at home.

  5. wow. what a story. so sorry that you are going through this, but such a blessing that she's doing so well.

  6. What a blessing that she will be going home soon! Jemma looks adorable making the cake!

  7. Your cake sounds great, is it ok for me to pin so we can try it out? And I'm glad to hear Jemma's stomach ache has gone. You guys are doing an amazing job. I really feel connected to you all through reading about how you are managing.


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