Since getting home last Tuesday we both seem to have been very tired but have also managed to watch some good tennis from Wimbledon….
Noel besides feeling tired has felt cold all the time…. Even with the temperature in the house set to 75’F he is wearing his fleece jacket.
Today he has not felt so great and has been trying to sleep in bed… Not sure how much rest he is getting a there is a block party out side with a loud live band….been going since midday….Although a lot better than it was he still has problems with his digestive system…
A good friend from St Mary ‘s just popped round to bring the check from the fund raising concert that Alan held for us… playing and singing his folk songs… what an amazing gift… $2,150… This is such a generous gift and “Thank You” seems to small a response. We feel very loved. PTL.
Can you guess how much the 9 days spent in the hospital cost?
We got notification of it yesterday… $193,720… praise the Lord our insurance copayment is very much less than that figure! But we stil have many months of outpatients visits and drugs to face yet… Yesterday I picked up 6 refills at CVS of the long list of drugs he has… Those 6 cost a copayment of $1,286.99 and that did not include the most expensive drug he is taking… But we have to trust the Lord has a plan to see us through this next year of medical bills… And we do trust him…
So day plus 26 means we are 25% of the way to day plus 100, at the moment a number of the drugs Noel takes are to help prevent the rejection of the donors cells. After the 100 days the doctors hope to gradually reduce those drugs and although what is known as graft versus host GVH disease can happen at any stage… It then becomes more critical after the anti rejection drugs are reduced. We of course pray this will not happen. Although they say it can even happen after a number of years down the road… Noel will be always living in what is called the new normal.
Our snail mail bought cards with well wishes and we are grateful for thoses and your continuing messages here on this site and Facebook… everyone of your messages is an encouragement to us on this journey.
Our spirits stay high and our emotions stable, my only hic up was when I found our neighbor had cut off all the lower branches from the tree that our breakfast rooms looks over… It’s our tree and those branches were not over hanging the property line… So I have no idea why he did it… we had agreed that he could cut back the higher branches that hung over his property. I loved looking out on the leaves and watching the birds… so I cried… but I guess it was only a tree… May be I will plant another one.
We know the Lord has been watching over us during this time in the small and big important details. Please keep us in your prayers… Thank you.
On Monday we have a visit to see Noel’s hematologist at the Glens Falls C R Wood Cancer Center… She is interested to find out how things went. Then on Tuesday we drive back to Boston. For appointments at the DFCI on Wednesday… PTL we are able to stay Tuesday night at Hope Lodge… Although they have a minimum 3 night stay they will if you have stayed there before and they have a free room let you stay just one or 2 nights…. but we still hope to be able to get the discounted hotel price as Hope Lodge may not be available every week.
We hope you all had a good 4th of July holiday and are enjoying a good summer… and keeping cool… or dry according to your location.
God bless you.