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Friday, February 12, 2010

A long day

Yesterday was by far one of the hardest and longest days of this journey. The hard part had nothing to do with Sarah's health as she did well with yet another chemo treatment, and the prayers for limiting the side effects from chemo are being answered. Praise God for that.

The stress was in an unexpected twist in our plans. All along we felt that if we could go back to the U.S. that was the best option for our family. Being a third-culture leukemia patient and the parents of a child with Leukemia in another country has been unbearable at times. All of the stress came to a head yesterday as we received good news from our doctor at Children's Hospital in Dallas. With Sarah's numbers looking so good, they have a treatment plan with a lower/less toxic dosage of chemo for the remaining 6 months of intensive treatment. The problem is that the doctors in Dallas need to confirm that this option is doable from the bone marrow test scheduled on the 19th. This would be Sarah's final treatment in HK. In discussing this with the doctors in HK, who have been great to us, we found out that HK does not lower chemo and will continue to give Sarah high chemo doses even though she is a low risk. Since they continue with the same dosages, they do not really depend on the bone marrow test on the 19th because it takes them two weeks to receive the results back. Thankfully Dr. Furlan from Dallas was able to talk to me while I was at the hospital with Sarah. He said he would try to have Sarah scheduled for the bone marrow test in Dallas on the week of the 22nd.

This development led to stress point number two. The flights returning to Dallas. With Chinese New Year starting this weekend, this is the peak travel time. A group of people donated miles so Sarah, Anne/Rebekah were able to not only get a free flight but they will be in business class so Sarah can be comfortable and more secluded. (Cathay has the lay down seats with your own little cubicle). The problem is we thought we needed to move the flights earlier (we still might). But around 3am my time I found out that Dr. Furlan was able to make Sarah an appointment in Dallas on the 24th for the bone marrow test. She has to be put to sleep for this procedure so it is stressful for her and she wants to do it in the US because she, for some reason, wants a Chick fil A sandwich after the procedure (since she has to fast the night before), if the doctor allows it.

So somewhere around 4:30am, I was able to relax enough for a couple hours of sleep. In the midst of all this came stress point number three - our housing in Dallas. This has been a total nightmare as the good houses (clean, not much carpet, near the hospital) go so fast it is hard for us to get them. Along with the fact that the rental market is hot because many people can't buy homes. Even though it is for a short time, we feel a home will be better for us since we will be in virtual "house arrest" during the treatments. This way we can have a backyard for Sarah to go out and play without contact with other kids who could pass along their germs.

In all of this, God is giving us the fruit of endurance to keep focused on Sarah and our family. Finding out that the next phase of treatment is less toxic in the US compared to Hong Kong has encouraged us that making the decision to go back to the States is the right one. We hope to be settled soon and able to keep in touch with everyone -through 'virtual' means at least.

1 comment:

Tim said...

Dear Jay, thanks so much for sharing your heart with us, both the good and the bad. I am so grateful for your willingness to be vulnerable in sharing the struggles you are going through. Even as you share these stresses, I can see God's gentle hand at work leading the way before Sarah and your family. That's a beautiful thing!

Please know that my family and I pray for you and Sarah regularly, including with Lukas when I put him to bed at night. Thank you for the privilege of standing with you before our wonderful Father who obviously loves Sarah so deeply.

Bless you, my friend,
Tim Amstutz

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