Monthly Archives: April 2015

End of April update from Glens a Falls and Boston

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Those who put their hope in The Lord will renew their strength, They will soar on wings like eagles; they will run and not grow weary, they will walk and not faint.
— Isaiah 40:31 NIV

Noel on his recent Birthday enjoying his cake...

Noel on his recent Birthday enjoying his cake…

Last weeks visit to Boston saw us blessed again with accommodation at the Hope Lodge…even though somehow I had not made the booking for the correct date, the first mistake I have made in almost 3 years of making many booking. But Praise the Lord on arrival a room was found for us both nights..on Tuesday we were in room 413 and on Wednesday in room 314… I have now double checked that I have made the booking next time for the correct dates !!!

Noel, has over the past month, has not really seen any improvement in how he feels and has caught yet another head/chest cold/cough and his mouth continues to be very bothersome. Dr Soiffer is now weaning Noel slowly off the high Prednisone (steroid) dose he is on, that has caused him to feel very low and has done nothing to strengthen his immune system and left him with what he describes as a puffy face, bulging belly and swollen ankles, with a lack of energy and a general slowing down and loss of strength. So we hope as the dose reduces he will feel much better. Dr S has also put him back on the antiviral medicine, Acyclovir, to see if any of his symptoms are actually being caused by a virus along with what we know is caused by the GVHD. Dr S has recommended that Dr Treister at the Brigham and Women’s Oral Medicine Department start Noel in a clinical trial for treatment for the GVHD in his mouth. So we will see what Dr T says at the appointment with him on May 14th. If you have ever wondered what oral graft verses host disease is all about this is a very good article.

We are also very grateful for the suggestions of how to treat Noel’s symptoms from many people, because we know you care and are concerned but we hope that none of you are offended because we don’t try your well meaning ideas…we made a decision way back when Noel was diagnosed that we would only follow the doctors instructions and do nothing not sanctioned by them.

We try to live a normal life…around all the medical stuff. The girls, Charlotte and Lucy, help keep us focused and busy…and life seems very full. Funny how as you get older, time seems to go much faster, along with things taking longer to do!

So it’s back to Boston on the 13th of May for appointments at both the Dana Farber and the Brigham and Women’s on the 14th. We’ll do another update after that visit.

Meanwhile, in ministry, Noel was able to attend video-conferences for the management and direction Boards of both By His Wounds ministry and Olive Branch International. Both have significant Christian spiritual impact: BHW for individuals to be healed in soul, mind and body in the USA, and OBI working with seriously traumatized Ukrainian Soldiers and their families, both at the front and when they come back home. At the front, some of our Ukrainian friends act as Chaplains (OBI Ukraine has led their training courses) even though there is no official military Chaplaincy. They take food and other humanitarian supplies as well as, most importantly, pray for folk. We would love to give our colleagues there more support, if anyone feels called to help. In Sierra Leone, we train and support several Hospital Chaplains who continue to spiritually sustain families in contact with ongoing Ebola.

Also, Noel re-started a successful monthly Lay Chaplains video call for the Anglican Armed Forces and Chaplaincy Jurisdiction; as well as taking a leading part in a sub-committee praying, planning and implementing ideas to improve the fund raising and marketing aspects of the Welcome Home Initiative retreats being held at the Greenwich, NY Spiritual Life Center (licensed by BHW). We are praying for the Lord to provide 50 scholarships of $300 each for this year’s retreat (November 9-11) so Veterans can be blessed with their food and accommodation when they come. If you feel called to help, please contact Noel.

Thank you for your love and support as we continue on this journey… Please continue to pray for us and keep in contact with us. We are interested in your news too. God Bless you!

Happy Easter!

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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.