September 30, 2007

Dear Family and Friends,

We’ve moved again. After 4 weeks in one room, Shannon’s been moved to a smaller room with a double doorway because she is in isolation. A few days ago, an out-patient with whom Shannon had become friends, popped in to say “hi” and later was diagnosed with shingles (comes from the Chicken Pox virus). The chicken pox virus is life-threatening to post-bone-marrow transplant patients, but “Thank God” Shannon was only potentially exposed and did not get the disease! The other patient was caught in time and given proper care so she is OK too. Yet another blessing!

This experience, I believe is Divine Providence red-flagging for us the importance of infection control. Illnesses that we don’t blink an eye at can often be fatal to these patients. Two months ago at Johns Hopkins a child died after contracting chicken pox a couple of months after a successful bone marrow transplant.

So here are tips when visiting Shannon:
Please don’t come directly from school or from a place where you have direct contact with other children.
Wear clean clothes.
Purell your hands when you enter the hospital, after getting off the elevator, before entering the Oncology wing, and before entering Shannon’s room.
Don’t touch Shannon.
Don’t sneeze or cough in Shannon’s room, even if it is from allergies.
Don’t visit if you have a cold or are sick.

Other than moving to isolation, dealing with pain and nausea is a 24/7 issue. Shannon has been too sick from the side effects of her transplant to be photogenic or very talkative (if you’ve tried to call her). So you’ll find only pictures of her room and some the Super-heros who visited last week.

Although the side effects make everyday living quite difficult, we have found that nothing is impossible for God and with Him we have been able to endure. The side effects she’s experiencing involve a great deal of pain in her mouth, throat, stomach and G-I tract. A base-line of morphine is supplied continually through I-V to control the continuous pain, while a morphine pump is available for added boosts when the pain exceeds the base-line level. Eating is quite difficult, so intravenous nutrition supplies her calorie intake. Your prayers make it possible for Shannon to persevere in taking a small amount of food and drink by mouth, which is protecting her liver from veno-occlussive disease. Up to 5 different products at a time decorate her IV pole like a Christmas tree while what looks like a massive web of tubing enters her body through two different ports that have been surgically implanted in her chest. School studies have not been possible since we entered the hospital on September 3rd. So, as I mentioned earlier, as her body tries to heel, and Michael’s marrow tries to engraft, she simply sleeps around the clock.

As I’m writing … Shannon’s counts have come way up, meaning the engraftment is taking place! If this is so, we may be here for only a couple more weeks. Once we are discharged we must remain in special Bone Marrow Transplant Housing in order to ensure that we are no more than minutes away from Hopkins. The housing is called St Casimire’s and is located on Boston Street in Canton. This will be our new home for the next 100 days, more or less. This is where we’ll be for Shannon’s birthday on Oct 19th, Thanksgiving, Tammy, Brittany, and Michael’s birthday, and probably Christmas too.

Please continue to pray that Shannon will remain in remission provided that this is God’s will.

God Bless,
Bonnie and Greg