One gift came through this morning in the area of an answered prayer. One looming concern was going to be the loss of a bus to get Warren to and from school. The city bus he has been taking all year is going to be eliminated on April 5. At 8:23 this morning, I received an e-mail from Warren's school. They will be re-routing their buses in order to pick up the kids from Falcon! Warren will be picked up and dropped off at Walmart by the CSEC school bus, starting March 30! He will have to be at the bus stop an half hour earlier than before, but that will actually make it easier to get him to the bus and get back home to get the other kids ready and to school.
As far as Simon, the week-end was one of ups and downs. His energy level has been high, but his body hasn't been able to keep up with what he wants to do. If he is up and running around like he wants, he gets really bad headaches. The headache goes away as soon as he sits down and rests for a few minutes. Being cooped up is starting to take its toll on him. He doesn't feel sick, so he wants to act like a normal 10 year old boy. He can't be a normal 10 year old boy, so he is becoming moody. He has his ups and downs.
Yesterday, we were at the clinic for a routine check. His counts were holding steady. His platelets were at 26. His hemoglobin was at 7.4. Still very low, but no longer dropping. His granulcytes were back down to .5, which is kind of the cut of mark for being able to be around people. While none of the counts were good, they were all acceptable. He is not getting better, but he is also not getting any worse.
The doctor suggested that we get Simon into the dentist to get his teeth cleaned. It would need to be done before he would be able to have the transplant. I took him in last night. One hour before his appointment, he had to have 2000 milligrams of amoxicillin. He had 8 HUGE pills that he had to CHEW! (The smell alone made me want to gag!) He had a hard time getting them down, but once they were down, he was able to keep them down. When they do dental work, bacteria enters the blood stream, so the antibiotics needed to be there to combat anything that might harm Simon. Simon, of course, bled more than normal during the cleaning, but nothing that required any special measures.
Today, I was able to take a break from the medical world and work. It felt good to be back at the school. I love being able to be an occasional part of the incredible work they are doing there. It also was a much needed break.
Simon's doctor was going to talk to the transplant team today. Hopefully, we will know more when we go in on Thursday. Tomorrow will be 6 weeks from the beginning of this journey, 5 weeks from the "official" diagnosis and his first hospital stay. On February 10th, he began his immune suppression treatments. Today, we are 4 weeks from the beginning of that treatment.
How can only 6 weeks feel like a lifetime? In the scheme of things, we are only at the beginning, and yet I am already so very weary! How will I be able to complete this journey? We are probably at least a month away from transplant, perhaps even 2 or 3 months. The transplant journey itself will be another 3 1/2 months and that will be away from home! At least on this part of the journey, we are able to sleep in our own beds most nights and we are together as a family.
As transplant is looking more and more likely, I am trying to learn as much about it as possible. God will have to give me the gift of wisdom for the decisions ahead. On Monday morning, I learned that Children's Hospital in Denver has only done 1 bone marrow transplant for severe aplastic anemia. They have performed a total of only 185 bone marrow transplants. The data is as current as December 31, 2008. That makes me nervous!
Our other option for a hospital at this time would be the Children's Hospital in Seattle, which is part of the Seattle Cancer Care Alliance. They are a leader in bone marrow transplants and have performed 61 for severe aplastic anemia and a total of 2211 bone marrow transplants. I have family in Seattle and a small group of friends out there. Statistically, I like that option much better.
While I do have family and friends in Seattle, my strongest support system is here in Colorado. Denver is only an hour away from home, so I would be able to take turns staying in Denver. Both Bob and Mom would be able to be with Simon for periods of time, allowing me to spend some time at home with the other 4 children. The other children would be able to go to Denver on the week-ends to see their brother. Emotionally, I do not know if I would be able to cope with being away from my children for 3 1/2 months. I worry about the toll that would have on Warren, Oliver, Ezri, and Beau. It is going to be hard enough only seeing them on week-ends.
And then a part of me says that with so very much at stake, Simon's very life, how can I not give up 3 1/2 months of being with the other kids? My heart is telling me to stick with Denver, but my head is screaming for Seattle. I need wisdom like I have never needed it before!
Then those blasted statistics have been very discouraging. Simon needs the gift of a matched donor among his siblings. With a sibling match, survival rate at 5 years out is 80-90%. With a matched, unrelated donor, survival rate drops significantly to only 60%. I have to constantly remind myself that my son is not a statistic. He is a living, breathing human being, and he is my child. Regardless of what the statistics say, I can never lose sight of the gift of hope.
This past week has been filled with a combination of hope and discouragement. Moments of joy and moments of sorrow. I have to recognize the joy for the gift that it is, and I have to find strength in the knowledge that sorrow may last for the night, but joy comes in the morning.
And I have to give thanks.
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