D+107: September 26, 2012 โ€“ And Feeling Good, Praise God!

Happy Meryl on a sunny afternoon at Crandall Park, Glens Falls, New York
September 1, 2012

D+107:September 26, 2012โ€“ And Feeling Good, Praise God!

Doxology: Revelation 5:13 (Louis Bourgeois and Thomas Ken)

Praise God, from Whom all blessings ๏ฌ‚ow;
Praise Him, all creatures here below;
Praise Him above, ye heavโ€™nly host;
Praise Father, Son, and Holy Ghost.

Thank you all so much for your messages and ‘likes’ on this site, and at CaringBridge and Facebook (Click the links on the home page to access them), let alone your prayers and good wishes. Thanks for all the cards, letters, phone calls and a few home visits too. We welcome every one of them.

Today is the first Wednesday in nearly 4 months we have not had to see my specialist in Boston. I didn’t realize what a pleasant relaxation not having to be there would be! Although my energy levels are not yet what they need to be, being at home gives me an incentive to get on and do some of the things that have dropped by the wayside recently, especially answering emails and social media messages, as well as praying for God’s overwhelming blessings on each person replying to these ‘posts’.

Health condition seems unchanged since last week, so we pray this good news continues and is reflected in better blood counts in Boston next Wednesday.

I bought a bike recently and have gone out on it a couple of times as part of my campaign to get fit again. I cycled 5 miles on a local cycle path (largely flat) last Friday and by the time I got home my legs were like jelly! I didn’t realize this illness would cause me to be so out of condition. Once the Hickman line (a port) is taken out of my chest – maybe next week – and the wound heals up, and the doctor gives me permission to do so, I’m looking forward to doing some gentle swimming at our local YMCA swimming pool, if I can find a quiet time to go. However, with the Autumn/Winter flu season soon to start, I suspect this might not happen for quite a while. ๐Ÿ™

Didn’t get to sail my small dinghy this year either. ๐Ÿ™

Following on from Meryl’s comment about an impromptu support group of combat Veterans and Bone Marrow transplantees at Dana-Farber Cancer Institute (DFCI) last week, I’m asking each of you to pray for the upcoming Welcome Home Initiative (WHI) Retreat – the 14th one, 12th at the Greenwich, NY Christ the King Spiritual Life Center. It takes place from November 12-14. There are about 30 combat Veterans, several spouses and the largest number of female Veterans coming we have ever welcomed. I want to carry out my usual role of co-leader, leading the two Tuesday morning sessions, but it looks extremely unlikely at this stage. So pray for a miracle to happen that the doctor says I can be involved. Also pray for the right number and quality of hosts to be available for every Veteran. Pray for sufficient money to run the Retreat, which is free for the Vets. See www.christ-the-king-center.org/WelcomeHome for more details. How about a STAFFORD Vet coming sometime? (I served and did my combat tours in Northern Ireland with the STAFFORDS – The Staffordshire Regiment). ๐Ÿ™‚

Pray also for a highly successful Warrior Retreat taking place near Fort Campbell, Kentucky, from October 4-6. This has been inspired by the example of the WHI Retreats. I was asked to help but I had to tell the pastor organizing it yesterday that I am not able to go. Fort Campbell is a key base for Special Forces and the 101st Airborne Division (Air Assault). The STAFFORDS and 101st have a historical connection. The 101st jumped into Nijmegen, Holland as the South Staffords landed by glider near Oosterbeek, to the west of Arnhem. The STAFFORDS and its successor regiment, 3 MERCIAN (STAFFORDS) commemorate the Arnhem battle on September 17 annually. ๐Ÿ™‚

Finally today, I want to pay a very special tribute to my wonderful wife, caregiver extraordinaire and Special Angel. She’s a Special Angel ’cause no other woman would ever put up with the likes of me for the 44 years we have known each other. She is the most unconditionally loving person I have ever known and she is always here for me. Thank you, Meggiewife (and I’m the only person who ever uses that name)! ๐Ÿ™‚

Transplant Day plus 100

Hope Lodge, Wednesday 19th September 2021

Jesus spoke to them, saying, “Be of good cheer!”.
Mathew 14:27.

“For I know the plans I have for you” declares the Lord “not to harm you, plans to give you hope and a future”.
Jeremiah 29:11

BMT/SCT +100 Days SurvivorToday 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. ***

Transplant Day plus 93

Written in Boston, Wednesday 12th September 2012.

“Then our mouth was filled with laughter and our tongue with singing……The Lord has done great things for us and we are glad.”. Psalm 126: 2-3

“A merry heart does good, like medicine… ” Proverbs 17: 22

Over a year ago when Noel was first taken ill and diagnosed with cancer we both decided that we would trust in the Lord our God to have a plan for our good, we would not be downhearted or allow anything to rob us of our joy. So we praise the Lord that we have been able to keep our focus on the positive and have been able to remain cheerful and our lives have been filled with much joy and laughter… some people may find us a little strange but hopefully they find us encouraging too.

From one week to the next time seems to go increasingly fast and this week sees Noel at +93 days since his transplant. Back in June, day +100 seemed so far away but now it is just one week away… For us it will bring two changes… After next week Noel moves on to fortnightly appointments at the Dana Farber Cancer Institute, so long as nothing unusual suddenly happens with his progress. And he will have the Hickman Line removed… he will be glad not to have to stick on a waterproof cover every time he takes a shower and for me to not have to flush out his access lines each night. Although no longer having it will mean at each appointment he will have to have an IV put into his arm so they can draw the 9 to 13 vials of blood they use for his tests and if needed to receive blood products through, although this will be removed after each appointment.

Transplant Day plus 93 September 12, 2012

This week Noel saw Dr Soiffer and he had a Harvard medical student with him as the Dana Faber is also a teaching hospital. Dr Soiffer said it is still early days in this long recovery process, Noel’s blood test results this week show little change from last week, just very slightly lower but Noel feels well and looks good so Dr S. is not too concerned.

Dr S. looked at Noel’s right foot as last Friday Noel had called him because his foot was suddenly and inexplicably extremely painful. Dr S. said he thought it was gout (!) and that Noel should see his Primary Care doctor, which he did on Friday afternoon; he also thought it was gout… prescribed pain killers and suggested Noel went back to drinking the 3 liters of water a day. Thankfully his foot is now looking much better and the pain has gone.

This weeks Blood test results. Still low but Praise the Lord… relativity stable.

Red Blood cells 2.93 — Last week 3.12 — Normal 4.2 – 5.6
White Blood cells 2.3 — Last week 2.5 — Normal 3.8 – 9.2
Platelets 37 — Last week 38 — Normal 155 – 410

You may remember I wrote about a DNA test called a Chimerism. When I said Noel’s DNA was 14% his own and 86% his donors… Noel and I had misunderstood the result that was being sought… We thought we were waiting to see the DNA being 100% Noel’s but what we are actually waiting to see is for Noel’s blood DNA to be 100% that of his donor! This seems a little strange but since the blood manufacturing stem cells in Noel’s bone marrow are those that were transplanted from the donor it actually makes sense. At this stage some transplant patients blood changes and becomes the same blood type as their donor but Noel was fortunate as his donor was A Positive, the same as he is.

We are so blessed to be able to stay here at the American Cancer Society’s AstraZeneca Hope Lodge… Accommodation is offered here to cancer patients and their care givers free of charge no matter if your stay is for several months or just a few days… funding for this is provided through fund raising and donations to the American Cancer Society and by the drug company AstraZeneca. This evening we had a group of research scientists from the company come to give us a presentation about their work in developing new cancer drugs… which was most interesting. They also brought a light supper of sandwiches and cookies for us all to enjoy (except for the transplant patients, including Noel, who sadly cannot have outside food: Noel cast his eyes longingly over the delicious ham, cheese and salad rolls!)

Family news is all good. Our granddaughters Charlotte and Eve both took big school in their stride and seem to be doing great. And everybody else is doing well… and keeping very busy.

Although the daytimes here in the Northeast are still very warm the nights are definitely getting cooler and Fall (Autumn) is on the way… we are looking forward to the changing colors of the leaves as we drive to and from Boston… the New England area is famous for the beautiful foliage at this time of the year.

We have continued to be blessed this past week by your support, cards, messages and telephone calls of encouragement along with a visit from our good friend Michael, the first English man we met in Glens Falls five years ago, and a visit from Deacon Dave and his wife Barbara, who shared the blessing of the Reserved Sacrament with us. We are not sure when we will be allowed by the Doctor to attend Church again… Noel’s blood counts need to be higher before he can be with groups of people again. I could of course attend Church but have decided to avoid being around people as much as possible as if I was to catch even just a slight infection it could be very serious for Noel if I passed it on to him…

Please continue to pray along the same lines as other weeks, travel safety, rise in blood counts and general well being for us both and give the Lord all the Glory for answered prayers and His provision for our needs.

You are all in our prayers, God Bless you and your loved ones.

Transplant Day plus 86

Written at Hope Lodge, Boston. Wednesday, September 5th 2012

Trusting God’s faithfulness dispels our fearfulness…
Psalm 56:3

Thank you all for your prayers for Noel’s blood count numbers… Praise the Lord, they are on the rise! Any negative thoughts we may have briefly felt after last week’s lower figures, have been dispelled.

It was an early start this morning , with an 7:45am blood work appointment at the Dana Farber Cancer Institute. The results were good. Not yet within the normal range but signs of improvement are slowly being seen. So after last week’s drop this is a good sign and one for thanks and praise.

There was no need for any blood products today… PTL… so all Noel needed was a dressing change on the insertion site of his Hickman Line. Amy, the NP said maybe in 2 weeks he could get it removed if his numbers continue to rise. Although he is used to it now it will be good to be free of it.

Today’s blood work results:
Red blood cells 3.12 — Last week 3.06 — Normal 4.2 -5.6
White blood cells 2.5 — Last week 1.6 — Normal. 3.8-9.2
Platelets 38 — Last week 18 — Normal 155- 410

Results from other aspects of the blood tests are also looking good, Noel’s liver and kidney levels look better so he can now drink less water, dropping down from 3 liters of water to 2 and a half liters per day.

Noel has appointments scheduled for next week and the following week and if the trend of rising numbers continues it very much looks like he will be moved to appointments every other week toward the end of September… this will be really good news. One reason that will be good for us is that in the 2nd and 4th weeks of October we have visitors from England. Noel’s sister Joycelyn and her husband Bill and his brother Julian and his wife Ann. It will be great if we we don’t have to spend time in Boston during those 2 weeks.

We had a number of questions to ask the Doctor this week:

Q. When could Noel book his next dental check up and cleaning, he normally gets this done every 6 months?
A. Not before late December and only if blood levels are good.

Q. Should he have a Flu shot?
A. No, but possibly in the new year when his numbers are higher. Other shots? Noel lost all his immunity, built up over a life time in the transplant process. Childhood immunizations and others using ‘live’ vaccines will be given 2 years post transplant. It is very important that I, Meryl and others close to Noel should get the Flu and other seasonal shots now! This will hopefully keep us from getting sick and infecting him.

Q. When can he go back to the YMCA to walk on their indoor track and use the exercise equipment?
A. Not yet, numbers need to be higher and then only at quiet times of the day, not when there are lots of people there and especially not when there are lots of children there.

We had a quiet Labour Day weekend… being blessed on Sunday by receiving the Reserved Sacrament brought to us by Deacon Dave of St Mary’s. And also having a friend visit with us.

This week is a busy week for both our two oldest granddaughters. Both began full time school in the USA and England respectively. A big step for both families. Please remember them as you pray.

Prayer and Praise this week:

  • Give praise and thanks for all the many answered prayers, for love and support from family and friends and continuing good blood test results and for good overall health.

Please pray :-

  • For safety as we travel.
  • For Noel’s bone marrow to recover fully the ability to produce good healthy, red and white cells and platelets, so that his numbers will be within the normal range.
  • For continued renewed energy and good health for both of us.
  • For all Noel’s lingering side effects from the Chemotherapy and transplant to completely vanish!
Thank you for reading our updates, your electronic messages and your messages sent by the more traditional way. Everyone of them gives us great encouragement.

God bless you all as you are all a blessing to us.