Every January 11th I celebrate my very own unofficial holiday of AJ Day O' Wishes Come True (if anyone knows how much it cost/what to do exactly to make it official, please let me know:). Last year I didn't write about it (I did the year before) due to Marshall taking over the blog for a while. He had posted about his first crazy experience with chemotherapy. That was a wish come true in a way because it was a step toward his remission---and hopefully cure!
Marshall has been doing well. He still has tons of pills he takes every morning and night. Most of them are vitamins. His weekly visits to the hospital have gone down to bi-monthly visits. I always get anxious before and during these check-ups and lately I have been staying home with Kez to try to keep my anxiety in check since Marshall has been healthy enough to go on his own. Each time they check his blood levels- if leukemia returns they would drop, tacrolimus level- this is the drug that suppresses his new immune system so his graft verse host disease is under control, and he meets with a doctor to talk about how he feels.
His most recent visit he brought up how his skin has been itchy for a few weeks. The doctor said it sounded like graft verse host of the skin. His tacro level that day was later called in at a whopping 15. It is supposed to be from 8-10, so we are hoping the itchiness was due to high tacro levels. Once you have chronic graft verse host (anything 100 days post transplant is considered chronic) there is not much you can do for the rest of your life but try to treat it with creams and medication, stay out of the sun (the ultraviolet rays can cause the disease to spread to liver, etc. that could be fatal) or steroids.
Like many other cancer related ideas it can be a curse and a blessing. With the GVHD disease, the cancer is less likely to relapse--- the new marrow and immune system is working well to fight not only healthy cells, but bad cells. With no graft verse host the cancer is more likely to return. At this point, Marshall has been clinically diagnosed with acute (acute is anything in the first 100 days post transplant) GVHD of the gut. Clinically diagnosed means that they gave him the diagnosis based on his symptoms since when they scoped his stomach and intestines they did not find hard evidence of the disease. This may have been because it was too early to have developed enough for the scope to find or it may have been his stomach and intestines were still healing from the full-body irradiation.
Okay! So some of my wishes that have come true since the last time I posted on this day:
1. I have a child! A handsome, healthy son with his mom's button nose, cute little toesies, and huge hands (he gets those from the Jensen side-neither of his parents have them). He has been talking more and more and I am SO enjoying this stage :). Today we got 3 feet of snow (3 feet on 1/11 ya!) and he just LOVES snow! I also have a much greater reason to adopt/be involved with the IVF science like I always wanted with Marshall's current fertility status.
Oh, I also have a dog. His name is Booker- like Booker T. Washington. Even if we can't have our own kids for a while if ever again, the fam is still growing.
2. If Marshall survives this for years, I have lived my part in my wish to find a cure for cancer.
3. My wish of helping people internationally is coming true. It may not be Save the Children because I need my Master's in International Health before I get the position I would want there. In a way it is more than I dreamed of because I was wanting to help the physical state of children. The new job I have started at the Global Service Center will help people of all ages in Brazil spiritually.
4. Along the lines of helping kids, I didn't think I would learn to craft well with my hands after making a baby outfit with different lengths of arms when I was 12. This only became a desire one day in my mission when I was studying the scriptures about good traits of mothers and one of them is to work well with their hands. Proverbs 31 says she will seek wool and flax and willingly work with her hands. Well, I made this sweet mohawk hat and cute ribbons and pins for my nephew and niece.
Marshall has been doing well. He still has tons of pills he takes every morning and night. Most of them are vitamins. His weekly visits to the hospital have gone down to bi-monthly visits. I always get anxious before and during these check-ups and lately I have been staying home with Kez to try to keep my anxiety in check since Marshall has been healthy enough to go on his own. Each time they check his blood levels- if leukemia returns they would drop, tacrolimus level- this is the drug that suppresses his new immune system so his graft verse host disease is under control, and he meets with a doctor to talk about how he feels.
His most recent visit he brought up how his skin has been itchy for a few weeks. The doctor said it sounded like graft verse host of the skin. His tacro level that day was later called in at a whopping 15. It is supposed to be from 8-10, so we are hoping the itchiness was due to high tacro levels. Once you have chronic graft verse host (anything 100 days post transplant is considered chronic) there is not much you can do for the rest of your life but try to treat it with creams and medication, stay out of the sun (the ultraviolet rays can cause the disease to spread to liver, etc. that could be fatal) or steroids.
Like many other cancer related ideas it can be a curse and a blessing. With the GVHD disease, the cancer is less likely to relapse--- the new marrow and immune system is working well to fight not only healthy cells, but bad cells. With no graft verse host the cancer is more likely to return. At this point, Marshall has been clinically diagnosed with acute (acute is anything in the first 100 days post transplant) GVHD of the gut. Clinically diagnosed means that they gave him the diagnosis based on his symptoms since when they scoped his stomach and intestines they did not find hard evidence of the disease. This may have been because it was too early to have developed enough for the scope to find or it may have been his stomach and intestines were still healing from the full-body irradiation.
Okay! So some of my wishes that have come true since the last time I posted on this day:
1. I have a child! A handsome, healthy son with his mom's button nose, cute little toesies, and huge hands (he gets those from the Jensen side-neither of his parents have them). He has been talking more and more and I am SO enjoying this stage :). Today we got 3 feet of snow (3 feet on 1/11 ya!) and he just LOVES snow! I also have a much greater reason to adopt/be involved with the IVF science like I always wanted with Marshall's current fertility status.
2. If Marshall survives this for years, I have lived my part in my wish to find a cure for cancer.
3. My wish of helping people internationally is coming true. It may not be Save the Children because I need my Master's in International Health before I get the position I would want there. In a way it is more than I dreamed of because I was wanting to help the physical state of children. The new job I have started at the Global Service Center will help people of all ages in Brazil spiritually.
4. Along the lines of helping kids, I didn't think I would learn to craft well with my hands after making a baby outfit with different lengths of arms when I was 12. This only became a desire one day in my mission when I was studying the scriptures about good traits of mothers and one of them is to work well with their hands. Proverbs 31 says she will seek wool and flax and willingly work with her hands. Well, I made this sweet mohawk hat and cute ribbons and pins for my nephew and niece.
Marshall took it to another level and got me a sewing machine for Christmas, so watch out! Something else I have been trying to do with my hands is make some nutritious meals.
5. My wish of all three brothers serving a mission came true with my youngest brother going to Kobe, Japan.
6. We celebrated Marshall surviving one year with the family at Friday's! Now that is a wish come true!
7. This year I made a Drops of Awesome Box for our family. This will be to remind us of the amazing things people do for us and the amazing happenings throughout our days- even on the bad and 'nothing special' days this year. My wish is that every year my family can look back through the drops of awesome and remember how awesome we are and how awesome the world is!
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