Happy Easter to you all and more news from us!
This is the day which the Lord has made; Let us rejoice and be glad in it. (Psalm 118.24).
Last Wednesday saw us back in Boston for Noel’s appointment at the Dana-Farber. In the last 3 weeks there has not been any improvement in how he feels. His mouth is still very sore and the shots he got in his mouth last time, sadly, made no difference. His digestive system still troubles him and he is on less than top form. He is not sleeping well either and also gets leg cramps. All this is from the GVHD (Graft Versus Host Disease).
One good thing is that his blood tests now show his liver functions are good and his platelets are in the normal range as are his other blood levels, so his new bone marrow is doing it’s job very well. But the GVHD, where the donors cells don’t much like Noel is the main problem. So it was decided to put Noel’s steroid dose back up to 30 mg a day.
As we have said before long term steroid use is not recommended as it brings problems and other unwanted health issues with it. If Noel continues to show no real improvement other options will have to be considered, like, maybe, entering a clinical trial for the research they are doing on new drugs for GVHD. It is a somewhat mysterious illness, not yet fully understood and with no clear cut effective treatment. We will have to wait and see.
Noel has also been prescribed a drug he had come off last year. Bactrim is an antibiotic designed to prevent a certain strain of pneumonia that can be very dangerous in stem cell transplants. He is also taking the prescription meds for his digestion again as the over the counter ones not having helped much. But we stay hopeful that this is just a valley in the journey and it too will pass.
In 3 weeks, on Wednesday April 22nd. Noel has an appointment with Dr. Soiffer; and with Dr. Treister, the mouth doctor, 3 weeks later (May 13). Thankfully we already have a room booked at the Hope Lodge for each visit. We were blessed by the Lord this past week as a room became available just before we needed it. We had been on the wait list. We were so thankful to have this refuge as neither of us felt well on the drive to Boston – in fact Noel was quite sick with a fairly short lived but debilitating stomach bug, which was probably made worse by his low immune system.
Spring is now here. Winter was long and cold but our snow has gone in the past week. The grass is looking a bit greener every day and very soon we will be seeing new buds everywhere. We wonder how many of our bushes and young trees will have survived the cold.
Easter is always a wonderful time to rejoice and give thanks for everything the Lord has given us and provides for us. We will celebrate with our family here in Glens Falls with a roast lamb dinner cooked by Granny! We will also be celebrating three birthdays: mine; our daughter in law, JoAnn’s; and Noel’s which all fall in the next 2 weeks.
Noel’s ministry activities have been somewhat less these past 3 weeks, although he was able to complete an intensive personal spiritual retreat called Cursillo. Although he was just getting over a bad cold and cough, he enjoyed the retreat and felt benefit from it. He also took part in several online video conference and other phone calls as a board member of Rev. Nigel Mumford’s healing ministry, By His Wounds (www.byhiswoundsministry.org) (BHW) and the Special Jurisdiction for the Armed Forces and Chaplaincies of the Anglican Church in North America (SJAFC/ACNA) (www.anglicanchaplains.org) in which, as a Commissioned Lay Chaplain, he is a member of the Executive Council and also Prior of the Order of St. Martin of Tours. Sadly, the Welcome Home Initiative retreats for female combat Veterans which should have taken place 2 weeks ago was cancelled due to Noel’s and another staff member’s illnesses and lack of registrations. In his capacity with ACCTS (www.accts.org) he has been in Facebook contact with a Croatian Veteran (Bosnian War) who wants help to bring relief to many of his “buddies” suffering from combat trauma.
We thank you all for your continued support in different ways and your prayers… As we continue on this journey… Please continue to keep in contact with us even if we are slow to respond to emails and messages… God Bless you.