October 23, 2007

Dear Family and Friends,

Yesterday we received promising results from Shannon’s first bone marrow aspiration since June, and thanks be to God she is still in remission. Her type of cancer, although rare and with little data available, has a tendency to relapse despite it’s initial response to chemotherapy. But because of your prayers for Divine Intercession to occur through the doctor’s hands, her unique chemotherapy “road map” is like no other tried before for this particular type of cancer. I believe that due to the continual outpouring of your prayers this road map has been altered 3 times. (See previous posts for previous updates that mentioned the change of plan) Each time this happened there was no apparent reason other than the doctors’ opinions that, “after rethinking... we believe this change to be best”. I attribute their “rethinking” to God’s intervention.

Just this week was the 3rd time the chemotherapy road map was changed. After ‘rethinking” her regimen, Shannon’s doctors felt it best to begin a low dose of chemo through her spine at weekly intervals for the next month even though all chemo was due to end prior to the transplant. Please pray that God’s intervention and scientific advancement will continue to work together in keeping Shannon healthy.

Other than the God-given miracle of Shannon’s progress, and all the blessings that have been revealed to our eyes so far, we continue to experience God’s goodness. This time it is through our transitional housing at St. Casimir’s, 2712 O’Donnell St, Baltimore. This is the special bone marrow transplant housing that places us within minutes of the Hospital, which is important because of Shannon’s high risk of infection due to her compromised immune system. The housing is part of the organization “We believe in Tomorrow,” which provides housing and vacations for families who are experiencing life-threatening illnesses at Johns Hopkins ( www.believeintomorrow.org). In addition to being bright and cozy, we’re located on the end, which allows the sun’s light to stream inward all day. There is also a charming garden courtyard and a rooftop view of the harbor from which we’ve experienced exquisite sunsets.

Located within steps of St. Casimir’s Catholic Church (www.stcasimir.org), a stunning church, filled with artwork that is full of historical and theological significance, we are awed by it’s magnificence and the closeness we feel to Christ’s special presence inside. We couldn’t be more blessed than to hear the chime of the church bells hourly and to look out our window everday and see this church as a symbol of how close God has been and continues to be throughout this journey.

As we’ve marveled in God’s glory, we celebrated Shanon’s 18th birthday on Friday the 19th. Because of her severely compromised immune system, the festivities had to be kept to a quiet minimum, but they felt extra special after being enclosed in a hospital room for so long. Not completely free of the hospital, we have out-patient appointments 3 times a week that seem to take a better part of the day. But despite this, Shannon is determined to get caught up between out-patient visits and naps from exhaustion, so when she returns to school she can enjoy the 2nd half of her senior year. So please pray Shannon is open to God’s grace in helping her persevere with the studies that are needed.

By the way, flue vaccines are highly recommended for all those that would like to visit Shannon, but NOT the vaccine that’s sprayed in the nostrils. Exposure to this type will put Shannon in the hospital because it contains the live virus. Getting a flu shot would help minimize Shannon’s exposure.


God Bless,
Bonnie and Greg

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