Thursday, November 1, 2012

OUR LIGHT

As Jacob is really sick again, and we truly worry about his life, it is a true blessing for both Joakim and I that we have Sarah. She keeps us balanced. She makes sure that we keep a foot in the world outside of the hospital. She makes us busy with the day-to-day activities of life. She makes us laugh. She makes us happy. She makes me think about other things than seizures and mitochondrial disease.

On Monday morning, I had told Sarah that I didn't think we would be home when she got home from school. She understood that Jacob wasn't doing great at that time. She came to see Jacob in the ER Monday night. As we walked out of the hospital, she told me that she wasn't alone in this situation. I asked her what she meant. She reminded me of her classmate who lost her brother last year. She said that it had been good for her friend to know that he was dying, so she could say good bye. I was surprised by how well Sarah could explain the seriousness of Jacob's situation. When Jacob was as sick as he is today three years ago, Sarah would run out of the room, if I tried to have a talk with her regarding our sick Jacob. She didn't want to listen to it. Three years later, she initiates the conversation. It reminded me that she is as invested in Jacob's life as Joakim and I are.

When you live in the uncertainty of your child's future, holidays suck. There is not much fun about a day when everybody is having a blast and enjoying themselves, and you get exhausted by simply thinking about it. What is so great about having Sarah is that she forces us to go on with our daily lives. It was my turn to be home at night on Halloween, and my intention was to make this year's Halloween as good as other years despite Jacob being on both of our minds.

We live in a great neighborhood for trick-or-treaters. People decorate their houses, there are lots of kids who can't wait to go trick-or-treating. It is a family feast in the whole neighborhood. Sarah had decided to be a witch this year. She is a very cute witch, if I get to say it myself! We were going to celebrate the evening with our Swedish neighbors. We walked around the neighborhood, and Sarah had two serious trick-or-treaters with her, so there was candy in overflow to say the least! When they were done trick-or-treating, I decided that Sarah could stay up to enjoy the holiday despite it being a school night. She loved organizing her candy, and then trading it with her two friends. She could have done that all night long! I also got to sit down with good friends, enjoying their fire pit, some good conversation, wine and s'mores. It turned out to be a great holiday (and break) for both of us. In fact, Sarah thinks it is one of the best Halloweens she has had despite Jacob being in the hospital.



I know if it wasn't for Sarah, I would camp out in Jacob's room and never leave the hospital. What would I do at home in an empty house? There are many times where I simply don't want to leave Jacob and the hospital, but I also know that my girl needs me as much as Jacob does. I love to hang out with her, be in her world, and get a break from being "on" in the hospital all the time. Sarah is our light.

Jacob unfortunately did not have a good day today. Seizures were back. I felt as if we were back to exactly the spot as when we came in to the hospital on Monday. Jacob spiked a fever tonight again, and his diarrhea is beyond control. This is most likely from the antibiotics he has been on. Dr. C. says that we need to give IVIG some more time. She is also looking into starting Jacob on the mitochondrial drug epi-743, which has helped several mitochondrial patients with uncontrolled seizures. The problem is that it is not FDA approved yet, it is still in clinical trial stage. Jacob doesn't qualify for the clinical trial right now, but she thinks she can get an exempt from FDA, and start the medication on Jacob next week. It almost sounds too good to be true, but we'll see. In the middle of no answers, it is amazing to have Dr. C. who is constantly looking for new solutions and possibilities.

Sarah is off from school tomorrow. She is coming to spend the day with her brother. We're hoping for a better day, and some time together all four of us.

Love,
Maria.

8 comments:

  1. Replies
    1. Rebecca, she is! We are so lucky to have her.

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  2. Hej Maria, du skriver så berörande, sorgligt och varmt. Följer med er såhär på långt håll och önskar er styrka och allt det bästa! Kramar från Helsingfors

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    1. Tusen tack, Jonna. Det betyder mycket.

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  3. Praying Jacob will be put on EPI-743! My heart is heavy, it's like watching our lives being replayed. Same situation, same time of year, same circumstances. We have been praying for you all! What a blessing to have a doctor like Dr. C!

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  4. Do you have an email address? I wanted to give you some info about the Epi-743. I have contacts that helped us when we were in the same situation.

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    1. Krissy, you can email me at mhopfgarten@gmail.com. Thanks!

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  5. Maria, thank you for sharing the wonderful Halloween story. With our travels being different yet the same in many areas, our hospital stays consume ones energy, and mind. Having an a child to bring light to your soul and heart is big life line. We continue to pray for Jacob in hopes that EPI 743 is the answer. Please let us know how we are able to help. Hugs, Michelle

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