Looking to the Sun

It is 3:30 on Friday afternoon, and I am SO ready for the week-end! I am sitting at the clinic, typing this, while Simon gets his once a month dose of pentamadien and another dose of nuepegen. This is the fifth day in a row that we have been here!

Yesterday, I was here with all of the kids for HLA blood typing, to determine whether or not any of Simon's siblings are a match for Simon's bone marrow transplant. They had to take 4 LARGE vials of blood from each of the kids.

Beau went first, and he was such a trooper. He loves having his blood taken! He watched while they poked him and he watched as they drained his blood. He thought it was pretty cool!

Ezri was next. She was nervous, but did fantastic. She did not like being poked, but didn't fuss at all. As they filled the last vial, she started feeling dizzy. Her face had totally turned green! We got her some juice, and she perked right up. (That and the promise of being able to chose a toy from the treasure box when all 4 kids were done!)

Oliver and Warren were the last to go. To them, it was no big deal.

Yesterday, the clinic was very busy, and I had all 5 kids with me, so I did not have the opportunity to ask all the questions that needed asking. Today, I came prepared with the 2 big ones.

It will take 1-2 weeks to learn if we have a match. In the mean time, Simon will continue to visit the clinic regularly. We had been coming twice a week, but this week, we have been in every day, due to his low counts. The neupegen he has been receiving is to boost his granulcytes, to prevent infection.

The pentamadein is to prevent bacteria from overtaking his lungs. He gets that through the IV every 4 weeks. It takes about an hour for that medicine and 30 minutes for the neupegen.

While it has been a very long and busy week, it has also been a good week. Simon's energy levels have been fantastic. (I only wish I could keep up with him!) He got the same cold the rest of the family has been fighting, but he didn't get as sick as the rest of us! His hemoglobin had been dropping steadily, but it appears to have leveled off. It has been right at or near 7 for 3 days in a row now. We have made it through another week without a blood transfusion. As long as his hemoglobin remains steady AND he is not symptomatic, he will be able to avoid transfusion.

Transfusions have to be done in the hospital. The more he has, the more problems he will have with his transplant.

The next major hurdle we will be facing is the transplant. It will require 4-8 weeks of in hospital stay. Not only that, but he will be required to stay up in Denver for 100 days! They do have a place for transplant patients and family to stay during those 100 days. As long as Bob is in town, we will be able to split our time between Denver and home with the other kids.

If I thought life could not get any more complicated, I was sadly mistaken. Warren came home from school with a letter from the city, notifying us of the fact that his bus will be canceled, as of April 5. All I can do is laugh!

The absurdity of it all just strikes me as funny, for some odd reason. God has more than taken care of our needs from the day we first went to the doctor's office to have a rash looked at. Needs we did not even realize we would have, have been met in so many unexpected ways. Not only have our physical needs been met, but also our emotional and spiritual needs. We have met many new people along the way, and been so blessed by the generosity of strangers who are becoming fast friends!

I am sitting back and laughing, wondering what new and wonderful plan God has for us in the coming months. I wonder what miracle He will pull out of the hat to get Warren to school and manage the 3 kids at PPSEL and Simon and one parent up in Denver. I have no idea how it will happen, but God is so good, and He will once again surprise and amaze us. (I kind of feel like a little kid at Christmas, wondering what wonderful gift I will unwrap next!)

The 4 healthy children received a package in the mail this week from an organization called SuperSibs. It is a group that acknowledges the difficulties the other kids in a family go through when a critical illness strikes a sibling. In the package was a book for teens on how to cope when a brother or sister is diagnosed with cancer.

In thumbing through the book, I found a quote that really struck me as profound and simple at the same time. It spoke volumes of truth and has helped to keep me focused on the positive. "Look to the sun, and the shadows fall behind you." As I have turned my heart to God, my sun, I have witnessed the shadows fall behind me!