This past week, with a few days still remaining, our family has enjoyed holiday time. Time that for many reasons has been much needed and though I am still battling bronchitis it's been restful. We went to Great Wolf Lodge, and Niagara Falls, the Royal Winter fair and we have made tons of time for 'family' time between the boys school schedules. I have had alone time (wow?!) and Tim has managed to get in a movie, a golf game and tonight he's off to see the Bills play. Josh, who is (as I write, getting his MRI done) is once again my main reason for writing this post.
The last you heard from me the doctors were putting him on some new meds that they were hoping would buy us more time before the next surgery. She said that we would notice a change within ten days and that if we didn't notice a change that we should stop the meds. I have been watching him (as you can imagine) intensely. Ten days past and still I watched, unable to trust myself or my eyes.
Josh is a different child these days. He's happier (if that's possible?), he's full of beans, he's chattier, he's able to walk to and from school, he wants to play, he fights going to bed, he is almost at par with Kaleb's energy levels. It has been a beautiful, fun, exciting thing to see this change emerge in Josh.
Our Cardiologist gave us enough meds to see us through the two weeks, and after a few days I went to the pharmacist and said that I thought it might work and asked him how long I had to wait before ordering more. He told me to come in a few days before we ran out to be sure because they had to special order it, so when we were getting close I went back to the pharmacy and asked him to order more but just smiled and said 'I was hopeful it would work so I already ordered you more' and he poured it out for me. He smiled and said that he hoped it would buy time and though I didn't say it, my heart was screaming 'it will!!'
That realization, the knowledge that this medicine may actually forstall the next surgery is a warm balm to my soul. The more I read about the advances in heart medicine the more excited I get about Josh's future and the more time we can get means the better the chances he has. Did you know that they have already grown a heart from human tissue, put it into a rat and the rat survived?! Next steps are clinical trials and then maybe one day in Joshua's lifetime they can really cure this thing!! How exciting is that?! A cure for CHD?? Amazing! God is awesome!
Laurie,
ReplyDeleteBob Massie is a friend of mine. Charming, warm, quick-witted, courageous, a great guy. Ordained Episcopal minister, Phd ethicist, pioneering crusader for corporate accountability and social justice.
Bob had hemophilia. His knees were ruined by age seven from unstoppable bleeding. Through weight training and positive thinking during his university years , Bob taught himself to walk with crutches, then without them.
Massive continuous blood transfusions are a way of life for hemophiliacs. In the 1980s, New York had no tests for the HIV virus and Bob was infected. Of all the millions known to be HIV positive, only a few have been shown to reject the virus completely. Bob has a genetic variant that allowed his body to overcome the HIV virus. Completely negative. Gone! Bob's written up in medical journals. That's one.
With his wife and infant daughter on Cape Cod one summer 15 years back, Bob was out in the waves, an extremely strong swimmer. Lifeguards called everyone in, riptide. Bob was too far out to hear, struggling to keep his head up and losing.
Anne started screaming, a teen-aged surfer heard her and ignored the lifeguards. Snatching his board he paddled out and saved Bob. That's two.
By 2000, a life of transfusions was gradually shutting down Bob's liver. It cost him his vitality. Too healthy to be at the top of the transplant list, Bob was homebound in 2002, coping as best he could. Dozens of false alarms in seven years. Each time the family dropped everything and ran to the airport and then to a hospital someplace in the US, hoping for a suitable liver donation. Dozens of times the couple flew home disappointed.
Then in 2009, a four-way domino transplant deal gave Bob a new liver. His transplanted liver makes the blood factor that hemophiliacs need. The liver transplant cured Bob's hemophilia! That's three.
My friend Bob has been saved from "certain death" three times.
I wonder about the moral implications of Bob's amazing life. I can't decide whether God has something planned that only Bob can do, but the message has not been lost on me.
You can read more about Bob here: (http://bobmassie.org/about)
(http://en.wikipedia.org/wiki/Bob_Massie_(politician)).
I tell you all this because your your despair and shock remind me of Suzanne Massie's despair, who had no idea how she could deal with a baby whose bleeding never stopped.
See the family's story in the book the parents wrote about raising Bobby through hemophilia:
http://www.amazon.ca/Journey-Robert-K-Massie/dp/0394490185).
Your relief and hope and prayers sound like Suzanne's story, too. Other families' experience have no power to predict your family's outcomes, but if my prayer has any effect, your will experience joy like Suzanne's, too. The same boy she once was assured would live his short life as a cripple who could not risk physical activity, she saw grow and become an extraordinary contributor to humanity. who has been snatched from death not once, but three times.
Kirk
Kirk,
ReplyDeleteI love hearing stories like this... Thank you for sharing it! I have had the pleasure through this blog to hear so many beautiful stories of hope and healing and it offers so much encouragement. Josh and Kaleb always amaze me with their ability to bounce back, to take things with their health in stride. I get a cold and and I am miserable for weeks, they have taught me much about suffering and taking life in stride. :) They are my hero's in so many ways. There is no doubt in my mind that I have been blessed by these two amazing little people. God is good.
L