Hope Lodge, Wednesday 19th September 2021
Jesus spoke to them, saying, “Be of good cheer!”.
“For I know the plans I have for you” declares the Lord “not to harm you, plans to give you hope and a future”.
Today is a ‘special’ day and one of good cheer! 100 days since Noel received the gift of new life in the form of stem cells from an unrelated donor. Donors are special people as they freely volunteer and receive nothing in return except the grateful thanks of those who receive their gift. We thank God for them and all the many doctors, nurses and other patients that over the years have made stem cell transplants one of the Lord’s miracles here on earth.
+ 100 days…. What does is actually mean? For Noel, it means he is very blessed and has survived the most dangerous initial post transplant period, when some people do suffer very difficult physical symptoms including rejection of cells, Graft Verses Host Disease (GVHD) and even death. Noel experienced some difficulties over the past weeks but one’s that were in hindsight short lived and although serious and unpleasant passed without long-lasting consequences. At the 100 day point for many the significant change would be being able to return home. We have met many patients who after their Stem Cell transplant have had to remain close to the hospital for 100 days but Noel was blessed in the fact that his doctor was willing to let him leave after a month and return each week for a visit since he was doing well and we live close enough (225 miles each way) from Boston, to make this feasible… Thank you Lord!
At this stage his doctor would normally begin reducing many of the post transplant drugs but this already has been steadily happening over the last few weeks as some of Noel’s drug doses have been reduced to prevent increasing toxicity in his kidneys and liver… We saw Amy, Dr. Soiffer’s NP, today and she said both Dr. Soiffer and she were pleased with Noel ‘s progress at this stage… and although his blood levels are still remaining low they are pleased he reports feeling well.
On seeing his low blood numbers today she did offer him red cells but we all agreed that as he was not feeling unwell and, himself, did not feel he needed them, she would be happy for him not to have them but to see what the progress is over the next couple of weeks – so Noel chose to wait. Too many transfusions of red cells can cause dangerous problems with iron overload in the blood.
Noel had hoped today to have his Hickman line removed but as his platelets were low, Amy said the medical team would require him to have a unit of platelets by transfusion before they removed it to prevent any excess bleeding during the procedure. Amy and Noel made the decision not to remove it today but to wait until his platelets are higher. So we continue with the nightly routine of flushing his lines at home, as well as protecting the dressing before he showers by waterproofing it with a plastic covering.
Today’s blood count results… not a great change… stable but too low!
Red cells 2.83 — Last week 2.93 — Normal 4.2 – 5.6
White cells 2.5 — Last week 2.3 — Normal 3.8 – 9.2
Platelets 29 — Last week 37 — Normal 155 – 410
Praise the Lord for other progress signs today! Noel is moving towards fortnightly visits to see Dr. Soiffer or Amy. They said Noel can skip next week and return on October 3rd for his next appointment. But if he is feeling unwell at any time he must call them.
Some of Noel’s dietary restrictions have also been lifted… Noel can now eat some ‘take out’ restaurant food but this has to be freshly and well cooked. No food that has been sitting around under the heat lamps! We are not great ‘take out’ food eaters but it is good to know that he is progressing and getting back to normal. He cannot yet eat in a restaurant as he is still on restrictions of being with the public in public places. The restriction of uncooked fresh vegetables and salad is also lifted but only for items washed at home… No ‘take out’ salad bars or pre-packed salads.
Amy said the Fall and Winter cold and flu season will most likely lengthen the time Noel has the restrictions on him of being with the public in public places… like social meetings, crowded shops, Church and travel. Although this is somewhat frustrating we will be very cautious and follow the rules. To risk getting sick is just not worth it for either of us, a few missed meetings etc. is nothing when we think of the extra years to participate in everything this process will give us.
Last weekend was blessed again by receiving the Reserved Sacrament from Deacon Dave on Sunday afternoon. On Monday we had a fun ‘tea time’ with our good friends Jeph and Barbara from Lake George. Their motel season is almost over so they are able to relax a little and spend time away from the job… we first met them just about 5 years ago… a chance meeting in a local coffee shop and have been good friends ever since.
You never know what plans the Lord has for you in chance meetings! Today we sat down in the waiting area at the Dana Farber and found ourselves with a very highly decorated (for valour) US Marine Viet Nam Veteran; and the parents of a serving Marine who is also married to a Marine, both with tours in both Iraq and Afghanistan. Both these men had had stem cell transplants so we were able to talk to them about shared experiences and Noel shared with them about the work he does with the Welcome Home Initiative Retreats in which they both showed interest. We were able to pray briefly with them, as well as with several others during this visit to Boston.
Being the 100th day we also decided to revisit the Brigham and Women’s Hospital ward and say hello and thank you to the transplant unit nurses… Those on duty were very encouraged to see us and see Noel looking so well. They promised to pass on our greetings to the rest of the team.
Prayer requests are on the same lines as before:
- For Noel to continue to feel well, to have increased energy, for his blood counts to improve.
- For our family in both the UK and USA to all be well as life is busy with work and school for them all.
- For us both to remain healthy and free from seasonal bugs.
- For continued safe travel as we enter in to the variations of the seasonal weather.
- Noel is approaching his many military contacts to find a suitable speaker for the Closing Ceremony of the next Welcome Home Initiative (WHI) on November 14. So far several have been invited to speak but none are able to do so. Noel is not expecting to take part in this retreat, although he dearly wants to. Pray for the Lord to “provide” the right speaker.
Praise the Lord with us for all his many blessings, for the plans he has for us and for his continuing provision for us. We also praise and thank Him for all of you, near and far who faithfully stick with us and encourage us and support us… You are such a blessing, thank you.
God Bless you and your loved ones!
*** Unless there is anything to report in the meantime my next update will be written after Noel’s appointment here in Boston on October 3rd. 2012. ***