Hi guys,
It's dad and I've been away from the blog for a very long time. It's about time I say thank you.
First, of all let me say thank you to Lenore. What a woman. I love her dearly and I'm always impressed by her ability to communicate our journey. As devastating as this disease is - it hasn't attacked our relationship. We continue to draw strength from each other - day and night. We both acknowledge the power of positive thoughts and even when things are hardly positive we keep pulling each other out of the mental blackness that surrounds us. I couldn't do this without you - thank you my love.
I also want to thank the many people that have helped us over the past two years. This is the journey of a life time and not one to go alone. Thank you for all the moral support. Thank you to everyone that have donated money or time. We would be in a very different space if not for you. Every single last person. Thank you for buying a t-shirt or a chapstick. Thank you for donating gifts for our fundraisers. Thank you to all the people that we have never met but have heard our story and then contributed to our lives in some way. The kindness and compassion never ceases to amaze me. I had no idea people could be so compassionate. I am humbled by you.
Extra special thanks to the Kobbe's for being the kindest and most generous people I have ever met. Now that we have been home for 4 or 5 days we have had the pleasure of waking up and going to bed - to the most beautiful healing view of Oregon's wine country. It's one in a million and so are you both. Thank you - thank you- thank you:-)
As I mentioned before we are home. After 104 days straight at the hospital they released us late last week. Out of the past 7 months we have been home about a total of 3 weeks. So going back to the hospital almost every day for check ups is a small price to pay for a little freedom. Hunter is stable with no fevers but his energy is low and he seems to be without his usually strong life force. It has us deeply concerned. He lays in bed all day and still isn't eating. We feed him by NG Tube ( I call it the nose hose) and we give him a concoction of liquid drugs thru the hose three times a day. I think we are administering somewhere between 9-12 life saving drugs a total of 20-30 times per day. It's a full time job. Then we have to get food and water into him - again thru the hose. Too much fluids at one time cause him to vomit so we are constantly balancing between too much and not enough. It's rough and somewhat discouraging to watch him so low. However, we have to be thankful that the fevers are gone and especially that his bone marrow came back free from cancer. It was only a week or two ago when we were thinking the worst was happening and the terror of losing Hunter crept into our minds and destroyed us until his marrow results came back free of cancer. That was a huge relief - when we got the wonderful news - Lenore and I held each other and sobbed for 30 minutes absolutely overcome with joy. What a ride. LOL.
Monday, August 3, 2009
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