Updates and News of Clinical Trial

We have this anchor for the soul, firm and secure.
Hebrews 6:19 NIV

Last week on Wednesday, we were back in Boston for Noel’s appointments at the Dana-Farber Cancer Institute and the Brigham and Women’s Hospital.

The three weeks since Noel’s last appointment, when Dr. Soiffer lowered his prednisone dose, has been difficult. Noel has experienced great fatigue, very swollen feet and legs and loss of muscle strength in his legs. All seemingly side effects of lowering the dose. But on the other hand, we thank the Lord that Noel’s blood work was all within the normal ranges. We hope that any future further reduction of the prednisone with not make the side effects any worse – we are praying it actually eases them. Since needing to take the high dose when he was so poorly in January, it now seems crazy that the treatment to relieve the horrible GVHD flareup back then, now 5 months later, has caused him to have these difficult side effects. Please keep praying.

The mouth sores caused by the GVHD (Graft Versus Host Disease) have continued to be bothersome but have slowly improved, for which we thank God. As we expected Dr. Treister, head of the oral department at B&W, suggested Noel join a Clinical Trial that he and his research team are running. The trial is researching into new treatments for oral GVHD, since there is nothing as yet that has proved greatly beneficial. So after it was discussed, Noel decided to join the trial. It involves using a solution of a drug that Noel took orally for over a year after the transplant to help prevent the rejection of the donated stem cells… Dr. Treister is hopeful that patients will find relief by using a solution of the drug as a mouth wash. So, every day for a month I mix the solutions together, then Noel uses it 4 times a day, keeping it in his mouth for 5 mins. One could have hoped the drug would be provided by the trial but it seems this is not possible, so Noel’s co pay was $270. But worth it if it helps… We pray it will, not only for Noel but for others who suffer from this extremely painful side effect of a stem cell transplant.

This means that our next visit to Boston for Noel to see Dr. Soiffer at the Dana Farber and Dr Treister at the Brigham and Women’s will be on June 10th. Then we have made appointments for a month after that, on Monday July 6th. We have had to make the appointment for that Monday as later in the week we are going to the annual Convocation of the Armed Forces and Chaplaincies Jurisdiction (aka Diocese) of the Anglican Church of North America (ACNA). Noel, as an ACCTS staff member working with military Chaplains and Veterans, ministers as a commissioned lay Chaplain under their endorsement. It takes place at Dayton, OH from June 9-12 and is followed immediately by a Welcome Home Initiative retreat at West Palm Beach, FL (June 16-18) being led by Rev. Nigel Mumford. We pray for a good number of Veterans to come and find peace and healing for their combat stress and trauma. We plan to return home soon after the retreat ends.

Meanwhile, and not withstanding his health, Noel has been able to meet three Veterans individually, continuing relationships of friendship, acceptance and growing healing from their soul, moral and physical injury. Every time they meet the Holy Spirit does something good in each of their lives. Noel has continued to be involved in a small committee examining how best to finance and build grass roots contacts with needy combat Veterans to strengthen and improve future Welcome Initiative retreats at the Diocese of Albany’s Spiritual Life Center at Greenwich, NY. Please also pray for that the 45 minute presentation about WHI and the associated display table at the Diocesan Convention on the weekend of June 5-7th will be highly successful in developing and building successful WHIs.

Our families on both sides of the Atlantic continue to lead full and busy lives. All the grandchildren are doing well in school and preschool. It is hard to believe that there are only a few weeks left of this school year. And in September, Charlotte and Evelyn will be 3rd graders, William will be in first grade and Lucy will be in Kindergarten.

IMG_9985One coming event for our family is our annual participation in the American Cancer Society’s Relay for Life at Greenwich, NY. As many of you know, we are a small family but one that seems to have it’s share of cancer. There is no history of inherited cancer in our forbears. However, I became a cancer survivor in 2008. Our first grandchild, Charlotte at the young age of 18 months, was diagnosed with a very rare but aggressive cancer of the liver, Hepatoblastoma. After surgery and chemotherapy, she became a survivor in 2009. Noel was diagnosed with a rare cancer of the bone marrow in 2011 and had a life saving stem cell transplant, with cells from an unrelated donor in June 2012, three years ago. So we are the Dawes Survivor Trio – the DST!

Our hope every year is to raise funds for the American Cancer Society. This will be our 5th Relay. The ACS do amazing work funding research and supporting cancer patients and their families. We, ourselves, have been hugely grateful recipients of this support. We have been blessed with accommodation in Boston at their Hope Lodge on many, many occasions at no cost to us (they do welcome donations, of course) saving us what should have added up to thousands of dollars in hotel costs over the past 3 years. So we are asking you to help us pay it forward for the sake of others as we raise money for them through the Relay for Life. Our main hope is to have donations made to Charlotte’s Relay page, so please will you consider making a donation. Last year $3,000 her padre raised made a difference. What difference can be made this year? Thank you for your support.

This is the link to her page… http://main.acsevents.org/goto/charlotte-emma

If you prefer not to donate on line you can send a check to me, made out to The American Cancer Society/Relay for Life. I will see it reaches Charlotte’s page. Oh, by the way, our address is 22 Davis Street, Glens Falls, NY 12801.

Thank you for keeping on keeping on with us as we continue this journey with it’s ups and downs…we are so grateful for all your prayers, love and support. We thank The Lord daily for your faithfulness. Please keep in touch with us. We love hearing your news
too.