Last week, I finally received the results from Simon's latest bone marrow. Given Simon's counts, I fully expected the bone marrow to also be up. (The previous marrow had been at 30%). At the clinic, they have all been astounded by Simon's progress. Dr. Cook was expecting Simon's marrow to show continued improvement and was even talking about weaning him off his medication.
Then the doctor called. 15-20%. Not what any of us were expecting. I am trying desperately to take my cue from the good doctor and hold onto hope. God says He will never "leave thee, nor forsake thee." It is Dr. Cooks hope that the lower cellularity of the marrow is due to a sampling error, rather than actual further failure of the marrow. Rather than wait 3 months, they will do a bone marrow biopsy in September. Next time, the will take a sample from both hips. Which ever side has the highest cellularity will give a more accurate picture of the state of Simon's marrow.
Simon will be visiting the doctor at 11 this morning. While I am trying not to worry, I am also preparing myself for the worst. If his counts are falling, it will indicate the likelihood of failure. If Simon's marrow is failing again, it will require transplant.
None of Simon's siblings are bone marrow matches, which means Simon would have to find a match through the general registry. Transplants from an unrelated donor are more risky than from a relative. Bone marrow transplants are also more risky than other organ transplants. To start with, Simon would have to endure intense chemotherapy to totally wipe out his immune system. From the beginning of the process to the end, would require 3 months of living in Denver, either in the hospital or in special housing. He would not be able to leave Denver at all.
I start my new job next week. I have been hired as a kindergarten teacher at the school the kids attend. It is a dream job, and while I am a bit nervous, I am mostly excited. I feel like everything has just fallen into place for this job to happen for me. I call it a God thing. Not only will I be doing something I love and working with the best staff in the universe, but I will also be able to accelerate our debt elimination, build up our savings, and have some extra to be able to do some fun stuff with the kids.
While I know in my heart that God is in control, and that He knows the future, I am really struggling. I am trying to find solutions to problems before they occur. How can I be a full time mom to 4 kids in Elbert and a mom at a very sick child in Denver? How can I manage all of that while working full time? Neither of my cars are dependable enough to be driving back and forth to Denver everyday, not to mention the cost of gas to do so.
Bob is speaking to the powers that be at work about being able to work form home, should Simon have to go to Denver. He had been home for the last 6 months, but went back on the road 2 weeks ago. This one was supposed to be for 5 weeks, but it is looking like it may be much longer.
I am worrying and fretting about reliable, inexpensive transportation for the commute to Denver, when it isn't yet a certainty. I am worrying and fretting about juggling the demands of family and career and a sick child as a single mom. I am worrying about being up to the task that God has set before me.
The other day, I made a list of things that I am worrying about. Things that I have no earthly control over, or just seem unable to find solutions for. Topping the list, of course, is Simon's bone marrow. Many of the other items on the list are tied to the details should he go to transplant. (Reliable, good gas mileage car, is right up there.) These are the worries I need to hand over to God. These are the worries I hand over to him on a daily basis. Trouble is, I keep taking them back! The day I wrote these things down, I also decided that I was going to tie my hands behind my back to prevent me from taking them back. They are worries I do not want or need. I have given them to God, and I will keep re-tying my hands, until I am no longer able to escape the knots.
And I give thanks for a God wo is so much bigger than all my insurmountable worries.
A diary through the thoughts of a mother whose son was diagnosed with a critical illness.
Wednesday, July 29, 2009
Saturday, July 25, 2009
Summer's End
I have been neglecting my blog. Shame on me. What began as a means of keeping others updated on Simon's struggle with aplastic anemia became so much more. . This blog has provided me with a means for venting my frustrations, joys, and sorrows. By pulling the jumbled thoughts out of my head, I am able to give them some sort of organization. I am able to come to grips with my own struggles and better see how God is working in my life. It has enabled me to strengthen my faith and serves as a reminder of how far we have traveled on this road over the last 6 month. I regret my neglect.
Following spring break, life, for all intents and purposes, returned to normal. Simon was back in school. Visits to the doctor have dwindled to only once a month. (Simon misses the weekly visits, and while I do miss the wonderful staff and doctors, I do not miss trips and the reasons behind the trips!) I worked almost every day during the last month of school. My days in the classroom convinced me that teaching was something I wanted to pursue.
I registered for the Praxis, which is a standardized test that is required to get a teaching license in Colorado. I studied for the test and began researching my options for obtaining my license. I have a B.S. in elementary education, but did not student teach, so additional schooling of some kind is required. The full-time job of mothering a sick child was replaced with the full-time job of trying to figure out my life!
June was a month of blessing amidst the whirlwind of activity. The church volunteered to finish the 2 bedrooms we had planned for the basement, so mom would not spend another winter in an unfinished basement. (And just in case you are wondering, living in the basement was her choice. She was not banished! She prefers to have a place to get away from the nonstop activity and noise that are unavoidable in a family with 5 children, even if it means living in a dimly lit, poorly heated area of the house.) When my brain was overflowing from cramming for the test, I would take a break and work on the years worth of clutter that was crammed into the basement. Throw in swimming lessons, the nonstop chore of trying to keep 5 kids on summer break quiet while dad is working from home, and very drizzly, damp, and cold June, and you have an inkling of what that month was like! I credit my survival with the fact that Annette, my older sister, was able to come out for a week and help mom with her part of the clutter. There is no way I could have managed without her help.
Simon's June visit to the doctor was encouraging. His platelets were holding in the normal range, as were his granulocytes. His total white count was just out of the normal range, as was his red counts. For Simon, these results were huge. The staff at the clinic were thrilled. On July 7, Simon had another bone marrow test. On that day, his hemoglobin was in the normal range for the first time since this all began. Even following transfusions, his counts were never this high! Dr. Cook was talking about waiting 3 months for the next bone marrow test, and beginning to take Simon off of the immune suppressing drugs! In all the years, the clinic had never had a patient respond so well to the ATG treatments. They were all holding Simon up as a miracle.
The quiet of the house has rapidly vanished. It has been replaced by a whiney bi-polar 11 year old and an over-energized 17 year old. Not a good combination! The blogging will have to be put on hold.
Following spring break, life, for all intents and purposes, returned to normal. Simon was back in school. Visits to the doctor have dwindled to only once a month. (Simon misses the weekly visits, and while I do miss the wonderful staff and doctors, I do not miss trips and the reasons behind the trips!) I worked almost every day during the last month of school. My days in the classroom convinced me that teaching was something I wanted to pursue.
I registered for the Praxis, which is a standardized test that is required to get a teaching license in Colorado. I studied for the test and began researching my options for obtaining my license. I have a B.S. in elementary education, but did not student teach, so additional schooling of some kind is required. The full-time job of mothering a sick child was replaced with the full-time job of trying to figure out my life!
June was a month of blessing amidst the whirlwind of activity. The church volunteered to finish the 2 bedrooms we had planned for the basement, so mom would not spend another winter in an unfinished basement. (And just in case you are wondering, living in the basement was her choice. She was not banished! She prefers to have a place to get away from the nonstop activity and noise that are unavoidable in a family with 5 children, even if it means living in a dimly lit, poorly heated area of the house.) When my brain was overflowing from cramming for the test, I would take a break and work on the years worth of clutter that was crammed into the basement. Throw in swimming lessons, the nonstop chore of trying to keep 5 kids on summer break quiet while dad is working from home, and very drizzly, damp, and cold June, and you have an inkling of what that month was like! I credit my survival with the fact that Annette, my older sister, was able to come out for a week and help mom with her part of the clutter. There is no way I could have managed without her help.
Simon's June visit to the doctor was encouraging. His platelets were holding in the normal range, as were his granulocytes. His total white count was just out of the normal range, as was his red counts. For Simon, these results were huge. The staff at the clinic were thrilled. On July 7, Simon had another bone marrow test. On that day, his hemoglobin was in the normal range for the first time since this all began. Even following transfusions, his counts were never this high! Dr. Cook was talking about waiting 3 months for the next bone marrow test, and beginning to take Simon off of the immune suppressing drugs! In all the years, the clinic had never had a patient respond so well to the ATG treatments. They were all holding Simon up as a miracle.
The quiet of the house has rapidly vanished. It has been replaced by a whiney bi-polar 11 year old and an over-energized 17 year old. Not a good combination! The blogging will have to be put on hold.
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