Return to Boston, Back in Glens Falls

Give thanks to The Lord, for He is good!
His love and mercy endures forever.
1 Chronicles 16 :34

After extending our stay in Boston by a day, last Friday, a week ago today, we decided to drive home to Glens Falls… 7 weeks to the day since we had left for our long international trip… Nether of us felt well… so were glad to be home and have an early night.

On Saturday morning I went to the Doctors as I felt no better from the cold and cough I had been fighting for almost 2 weeks… seems I had developed Bronchitis, most likely as a result of my cold being either the same RSV virus Noel had or the ‘flu. Seems the ‘flu shot I had last Fall was not able to protect me… since the infection was viral… I was given a 5 day steroid course and codeine cough mixture. It was turning into a frustrating weekend for us both.

Our Health Insurance company twice refused coverage on the special medication for Noel’s mouth that had been ordered by the head of Oral Surgery at Brigham and Woman’s in Boston. Eventually, after many phone calls, I was able to get it directly from the pharmacy in Boston by paying out of pocket and them giving me a 50% price break
and have it sent in the overnight express mail so thankfully Noel was able to begin using it for his mouth on Saturday. The ointment prescribed for his lips was also refused cover. Today at the Dana-Farber a special case is being put forward to try and get it paid for as the out of pocket cost will be $550. And the Doctor thinks it will help. All very frustrating.

We just spent the whole weekend resting, we did not even attempt to unpack from our long trip or read all the accumulated mail the mail man delivered, that had been held for us… It will just have to wait.

By Monday we were both beginning to feel some healing effects of the medications and lots of prayer from friends and family.

Tuesday… We were back on the road to Boston for Wednesday’s appointments. We were glad to be able to return to our room at the Hope Lodge.

Noel’s medical team of Dr. Soiffer and Amy Joyce his PA were pleased to see Noel looking a little better. Having mostly got over the RSV virus… and the medication beginning to bring some relief to his mouth. Although he is still drinking Ensure he has been able to have some Chicken Noodle soup and canned pears which I have put though the blender. And speaking is somewhat easier.

Dr. Soiffer says that the sores in his mouth, the digestive discomfort, the constant hiccups and reflux, his loss of 20 pounds in weight, the skin rash and muscle aches are all caused by the GVHD (Graft Verses Host Disease). The virus contributed to worsening it. Noel’s liver function tests showed some improvement, which is

They are now treating the GVHD aggressively with a high dose of daily steroids… and some prescription medications for the hiccups and reflux and codeine cough mixture for the lingering cough.

Noel is very tired and hopefully will now be able to sleep better with out too much discomfort.

The next appointment to review him is in 2 weeks time. Wednesday, February 4th. at the Dana-Farber. We are on the wait list for accommodation at the American Cancer Society’s Hope Lodge, please pray for a room to be available, as otherwise it means a hotel room.

Although getting Noel’s health balanced again must be his first priority at the moment, it is noteworthy that Feb 4th brings some disappointment too. This was to be the first day of one of his main ministry events for this year. Along with two Anglican Bishops of the
Anglican Chaplains jurisdiction of ACNA, Noel, as Prior of the newly created Order of St. Martin of Tours, was to have led several discussion and teaching sessions at the 2015 Lay Chaplains Academy near Birmingham AL. St. Martin is acknowledged worldwide to be the patron saint of military chaplains. He also had a significant ministry
towards ordinary men and women, also an important ministry for Lay Chaplains. He lived from AD 316-397, became Bishop of Tours, France in AD 371 and his festival day in the same as Veterans Day/Remembrance Day, November 11th. Please pray the Academy will be hugely successful for the training, community spirit development and growth of Lay Chaplains (currently totaling 9) in the Anglican Church of North America.

All Noel’s ministry is on hold at the moment but we hope he will be well enough before too long to get involved again, especially to co-lead a healing retreat for female combat veterans from March 16-18 at the Spiritual Life Center in Greenwich, NY. But in the mean time please keep him in the loop if you are involved with any of his projects: ACCTS, Lay Chaplains ministry, WHI, Spiritual Life Center (SLC). He needs to stay connected.

You can always contact us by phone 1-518-824-5863, I am trying to be Noel’s ‘secretary’ and answer calls. You can also send emails. Copying to us both [email protected] and [email protected]. By sending to both of us hopefully one of us will see it!

Please continue to pray for Noel’s healing and that we both feel well again soon… we continue to be encouraged and not discouraged and please pray for our return journey to Boston on the 4th for good travel weather. It’s a very cold winter here in Glens Falls.

Today our granddaughter Charlotte, who had told me before we left on our long trip that “it isn’t normal, Granny. It’s just not normal” was happy to see us today as we collected her off the school bus and said, “now it’s normal” and we all agreed it was good to see each other again.

Thank you for continuing to support us in prayer . Please keep in touch. God Bless you!

Happy New Year and News from Glens Falls!

Dear friends and family

Meryl and Noel in South Africa

Meryl and Noel in South Africa

It is now 2 months since my last update… And much has happened… We left the day after Thanksgiving for our trip to South Africa and to spend Christmas and New Year in England… The trip went well we had a fantastic time in both countries with many blessings and answered prayers… much to share and talk about from Global Interaction, sightseeing in such a beautiful location and time with the grandchildren and other

At The Angel of the North

At The Angel of the North

family members. I could write a book! But all that now seems far behind us, as we arrived back in the USA on Monday evening with Noel feeling very much under the weather as the old saying goes.

Even before leaving home in November Noel had been experiencing some troublesome recurrence of sores in his mouth, a symptom of the Graft Verses Host Disease (GVHD) that has bothered him from time to time since the stem cell transplant, now 2 1/2 years ago. During our trip the sores continued to become more and more bothersome and painful, making it difficult to enjoy much of the delicious food he loves, he put on a brave face and complained little. But by last week even eating bland soft food had become difficult as the sores now covered his whole mouth and inner lips… he was also showing some other signs of GVHD, a skin rash and a lot of digestive discomfort. Noel then developed what we thought was a bad cold and cough..

By the time we boarded the flight home on Monday he was not at all well feeling very poorly. Thankfully we had Tuesday here at the Hope Lodge in Boston for him to rest all day. Unable to eat, even drinking Ensure through a straw was very painful. Wednesday morning we went for his regular appointment at the Dana Farber Cancer Institute. Dr Soiffer was visibly shocked to see his condition and ordered numerous tests. Called the head of the Oral Surgery Department at Brigham and Women’s Hospital, Dr Treister to look at Noel’s mouth… He has prescribed a new medication mouth wash and ointment, which will hopefully bring some relief from the pain. Noel’s liver functions are all over the place and he tested positive for a virus, RSV (Respiratory Syncytial Virus) which is particularly dangerous to newborn babies and anyone with a compromised immune system such as Noel… no wonder he feels so very ill. He is being treated with a 2 week course of antibiotics and has to be seen back at the Dana Farber next Wednesday.

Hopefully by then the virus will be much better and they can better access the GVHD and decide how to treat it. They are reluctant to rush back into prescribing steroids as these in themselves have lasting side effects and consequences. But whatever they decide it’s going to be weeks before Noel is anywhere back to normal. He is exhausted.

As you can imagine all this is frustrating for Noel as this new year held so much promise with new Ministry opportunities and a full calendar of events. All of which are on hold at the moment.

So please pray this is a journey with twists and turns, mountain tops and valleys… we do not loose sight of what The Lord has done for us giving Him thanks and praises as we hold on to His promise that he has good plans for the future. We are a little discouraged but not downcast. Pray for relief of this pain which Noel described to me to day as torture for the virus to leave him, and for the GVHD to subside. For renewed strength. But also for patience for both of us to get through the tough times.

We are looking forward to being home in Glens Falls. Seeing our friends and family.

We pray you all have a blessed year ahead… Please do keep in touch with us… We did not send out traditional Christmas or New Year greetings… But we want to be in contact with you. God Bless you!