Noel’s 3rd re-birthday… Thursday, June 11th.
It was a Monday back in 2012 and was the day Noel received the donor cells as the stem cell transplant. On June 12th, we participated RELAY for LIFE! And this evening, our health updates… from Boston and Glens Falls.
This day 3 years ago Noel was in the Brigham and Women’s Hospital in Boston, having undergone intensive chemotherapy to kill his immune system and make his body ready to receive the donor stem cells. These cells would then make their way to his own none functioning bone marrow and take up residence as his new bone marrow and start to manufacture all his blood. The transplant was and is the only possible chance of giving Noel more years to live. The donor cells are still doing a great job, have cured the cancer and are keeping his blood count levels within a normal range. As we thank God for this wonderful blessing of life, we are also incredibly thankful for the amazing gift of life-giving cells from his then unknown, unrelated donor, Ryan. And we are so grateful to have met Ryan and his wife last Fall, much enjoying the evening we had together. As Noel received the cells through the port he had in his chest we asked, “how do these cells know where and how to get to the large bones where the blood is made?” Noel’s eminent oncologist, the head of the stem cell transplant team at Dana-Farber, replied, “we don’t know. We simply don’t have a clue!” So, to us another part of the miracle was that God created the
capability from the beginning for theses cells to ‘know’ exactly where they must go to!
However, those donated cells sometimes really do think they are ‘boss’ and occasionally just try to take over control and reject Noel! This manifests itself as the Graft Versus Host Disease (GVHD) that we often talk about. This has been a long and somewhat difficult year for Noel after catching a nasty respiratory virus back in January, which was the cause of this latest bout of GVHD but at yesterday’s visit to Dr Soiffer at the Dana-Farber things looked brighter as he reduced the dose of steroids by another 5mg…. down to 15mg. Noel was on 40mg each day last January. So hopefully the side effects of weaning off the Prednisone will begin to improve and be less bothersome. The GVHD is still producing mouth sores and the clinical trial Noel has been in for the last month ended yesterday. Testing a medication as a mouth wash seemed to make little significant difference to the sores… so he will now go back to using the mouthwash he was using before. Dr Treister, the oral care doctor, was grateful for Noel’s participation in the trial and will continue to work with Noel to try and find something to help with the sores. The sores are better than they were and are mostly bearable. Although GVHD is very unpredictable, Noel is a lot better than he was 6 months ago..but we know another extreme flare up could happen again. But we pray not. His fatigue comes and goes… but he perseveres on… Next appointments with both doctors are scheduled for one months time.
I had a funny episode myself last week , with terrible chest pains. Although different to when I had the heart attack just 12 months ago. Noel took me to the ER to get checked out. This ended up with a 30 hour stay in the hospital… And lots of tests. Nothing of any
significance showed up. The pain subsided and it remains a mystery… but I have appointments to follow up with my Cardio and PC doctors and a lung doctor… I guess it is best to get everything checked. But I feel OK now…
Last Friday was our now yearly family event RELAY for LIFE… at Greenwich NY… It’s our 6th. We would like to thank everyone who have supported our efforts to raise money for the American Cancer Society… your donations to Charlotte’s Relay Fund will make a difference. Overall it seems that fundraising for the Relay this year has been down…we also found this. But we will continue to try to pay it forward to the American Cancer Society… because we have benefited so much in being able to stay overnight at the excellent ACS owned and run accommodation in Boston almost every time we have needed to be there for Noel’s appointments over the last 3 years. Although Hope Lodge is responsible for raising it’s own operating costs (more than $1M a year), so direct donations are welcomed, there is no charge to stay there (Relay for Life donations go to the wider work of ACS). With this blessing, we have ‘saved’ thousands of dollars that otherwise we would have found it extremely difficult to pay for hotel rooms at the same time as buying some expensive medications even though Noel’s health insurance policy is a very cost-effective one. One day I will sit down and work the ‘savings’ out!
So a big thank you for supporting us and others by supporting the American Cancer Society. You can still donate by visiting Charlotte’s page… Which remains open for the next few days.
Noel adds, ministry over the last month has become rather busier than earlier in the year, as Spring turned to summer. I have been able to listen to, encourage, pray with and have good one-to-one fellowship with the ten or so Chaplains and combat Veterans I count among my friends. I know the Lord blesses me throughout these relationships and, I pray, they also bless my friends. The main ministry event was the annual Convention of the Diocese of Albany. Held at a purpose-built summer vacation camp about 60 miles from home. Meryl and I, with three others, twice presented a workshop informing those attending about the Welcome Home Initiative. It was successful even though attendance was light. Those who came were clearly in the ‘right’ place and we pray they will either come to a retreat on their own or, better still, with a buddy; help finance a scholarship ($300); feel called to help WHI in some other way; and pass the information on to others. The weekend was blessed with sunny weather, many friends whom we had not seen for a while, wonderfully uplifting worship services, especially the Eucharists, and excellent faith deepening and uplifting preaching by the keynote speaker, former Archbishop of Canterbury, George Carey. My testimony of healing, given at Saturday evening’s service of healing, was well received and I was able to pray for and encourage several people who were challenged by differing moral, soul injuries due to combat and other military related traumas. Additionally, as a Lay Chaplain and Prior of the Order of St. Martin of Tours, I have been involved in planning for the annual convocation of the Armed Forces and Chaplaincy Jurisdiction (aka Diocese) of the Anglican Church in North America (ACNA). This included the regular monthly video-telephone conference call to keep in touch with our other Lay Chaplains. Please pray that the fruit of these successful activities will bless us at the convocation from July 9-12 at Wright-Patterson Air Force Base, Ohio. Please also pray for us as we take part in a Welcome Home Initiative at a church in West Palm Beach, Florida from July 16-18, led by our good friend, Rev. Nigel Mumford.
Meryl again, thank you for all your prayers, we know your prayers are being answered, please continue to stay in touch with us, we love hearing your news as well as writing about our own. Both our sons and their families are doing well, no family reunion is planned for this summer but both families have busy summers ahead of them, so please continue to pray for us all.
God bless you and your families as the vacation season gets into full swing.