Transplant Day plus 142… or 5 months!

Hope Lodge, Wednesday , October 31st 2012

“Rejoice and be exceedingly glad”. Matthew, 5:12.

We are rejoicing and are exceedingly glad… for the way the Lord looks after the details. I discover today that the bookings I had made to stay at the Hope Lodge through to the end of the year were not quite as I had thought. I had thought I had asked for a room every week but for some reason the lady who looks after the bookings had made them from the start of October for every 2 weeks… so the weeks Noel’s sister and brother were visiting and Toby drove us to Boston and home in one day, we actually did not have bookings! Kate said she was confused by the voice mails I had left canceling the room for those weeks… as we did not have one anyway! And since Dr. Soiffer today told Noel to take next week off we don’t need one next week… good thing as it was not booked! Now the prayer, please, is that Noel will stay well and will be on 2 weekly appointments from now on… as otherwise there is no room in the Inn and we will have to pay for a hotel room as the lodge is fully booked to the end of the year. Praise God for being in the detail.

Hurricane Sandy blew through our area on Monday night but we were spared any lasting damage for which we are thankful: but our hearts and prayers go out to the many, many people who have suffered devastating losses and long term damage. The only slight effect it had on our family was to extend JoAnn’s little vacation by a day. On Monday, when she and her sisters arrived back from their cruise, JoAnn and Melanie’s flight to Albany was cancelled although Judy did get home to Kansas. Lucy took the news of Mommy not getting home as expected for a 2 year old – in her stride, being quite happy being in the company of those who love her. For Charlotte it was more difficult, as you would expect from a 5 year old. She was upset but showed great courage and strength of character and was able to put her disappointment aside and be her normal cheerful self… thankfully fights to Albany resumed on Tuesday and JoAnn got home safely then.

This past week Noel has been regaining some strength and eating more even put on some of the weight he had lost, although he still has the sore mouth and upset digestive system… he is coping OK with it. We were looking forward to encouraging news this week from his tests and at his appointments today we were encouraged as his blood and liver function levels were not any worse but had stayed very much the same as last week. Dr. Soiffer took this a good sign, so said he would leave all his medications at the same level but added one more to prevent Noel’s sore mouth turning to thrush. He also said ‘lets take a week off, come back to see me in 2 weeks’… So this is also a huge encouragement to us.

This weeks blood tests
White cells 2.9 — Last week 2.4 — Normal 3.8 – 9.2
Red cells 2.89 — Last week 2.76 — Normal 4.2 – 5.6
Platelets 54 — Last week 55 — Normal 155 – 410

Noel did not need any transfusions today so he just got his dressing changed and he also got a ‘flu shot. Which should help protect him from picking up any ‘flu like infections.

In two weeks time when we are back here in Boston it will the same week the Welcome Home Initiative for Veterans of all wars being held at the Spiritual Life Center in Greenwich, NY (12-14th November). Noel is normally a team member and speaker (this would have been his 14th WHI) at this 3 day retreat for veterans and their spouses who are mainly suffering from PTSD and other unseen wounds of war. It is a safe place where they find acceptance, understanding and love and can begin to find healing. Please pray for this retreat and for those who are booked to attend it that they will find the courage to actually attend and while there that the Peace of the Lord will transcend all their nightmares and memories and healing will take place. Please also pray for Noel who is very disappointed he is unable to be there not only because he has to be in Boston but also because he is restricted from meeting with groups of people as his immune system is still not strong.

We both continue to rejoice and be glad as we move forward on this journey. It sometimes seems very long at other times seems to be passing very fast… as we are now just 4 weeks away from Thanksgiving and only 8 weeks away from Christmas!

Please continue to give praise and thanks for all our many blessing and for the Lord’s continuing provision for our needs.

Please continue to pray as other weeks for our family on both sides of the Atlantic and for continuing progress towards restored full health for Noel.

God bless you!

Transplant Day plus 135

Praise God for His present help in times of trouble. Psalm 46. 1-2.

For I will restore health to you and heal your wounds, says the Lord. Jeremiah 30.17.

We are thanking the Lord for seeing us through difficult times. This past week has seen Noel with slightly more energy and his appetite has been better but his mouth and throat are still very sore and uncomfortable from the GVHD. He doesn’t want to talk much. Thankfully his spirits have been lifted and he felt well enough this week for Deacon Dave to visit on Sunday and bring us the Reserved Sacrament, having missed the last 3 weeks when Noel was not feeling up to having visitors… this was a blessing to us both, and also a visit on Monday afternoon from Bishop Dan encouraged us.

The highlight of this week has been the visit of Noel’s brother Julian, and his wife Ann, from London… they arrived in Boston and drove up to have a late dinner with us on Monday evening before checking into their hotel here in Glens Falls. We spent Tuesday catching up with them. It has been well over a year since we last saw them. We all enjoyed a happy family evening together with Toby, JoAnn and the girls… today Wednesday we left them to explore the local area and Toby once again took the day off work to drive us to Boston and back in the day… We are so grateful to him. Tomorrow, after breakfast with us here at home, Julian and Ann will leave to drive back to Boston for their return flight early Friday morning to London. Seeing his sister and her husband 2 weeks ago and now his brother and his wife has been an enormous blessing and encouragement to Noel.

This week at the Dana-Farber Cancer Institute, Noel saw Amy and she explained how the GVHD, graft verses host disease, is causing some negative ‘activity’ in Noel’s body… evident in his very sore and dry mouth and in his elevated liver function tests, so she doubled his daily dose of steroids… but still assuring us this is a relatively low dose so we need not worry about adverse side effects.

But on the other hand the results of his latest blood DNA/Chimerism test showed it was 95% that of his donor and could be 100% by now. This is such good news and a wonderful answer to prayer, although it brings a higher risk of more GVHD activity especially in his liver… so a very close watch is now being keep on Noel and we return next week for another appointment… There was little change in his other blood levels. Which this week were…

White blood cells 2.4 — Last week 1.8 — Normal is 3.8 – 9.2 — So a slight rise
Red blood cells 2.76 — Last week 2.78 — Normal is 4.2 – 5.6 — Little difference
Platelets 55 — Last week 62 — Normal is 155 – 410 — Just a slight drop

We hope with the increase of steroids Noel will continue to gain more strength and the GVHD will not become any worse or cause any lasting damage but will soon start to show signs of improvement as the donors cells begin to reconsider Noel as being part of them selves.

He continues to have a compromised immune system so is still restricted in his activities.

JoAnn and her sisters, Judy and Melanie left today for a short cruise. They have been planning this little holiday together for over a year… I am trying to help out more with Charlotte and Lucy while JoAnn is away and to also give her parents a bit of a break as her father has not been well recently. They have been doing their and our share of the girls’ day care for almost 5 months now besides still working their own jobs. We have been so grateful that they have been willing to shoulder this extra load – another answered prayer!

Please give thanks with us for…

  • the ways our needs are being met.
  • the blessings we see daily.
  • for good friends and family.

Prayers please along these lines…

  • for Noel to regain his strength.
  • for his liver not to be damaged by the GVHD.
  • for his sore and dry mouth and throat to heal [then he will want to talk again, :-), hmm!]
  • for his new bone marrow to make more good blood cells.
  • for safe travel to and from Boston each week….especially as the weather is now changing.
  • for our family here and in England.
  • for Ron, JoAnn’s father that his health problems will soon be sorted out and he will feel better.

We are grateful that you are still reading our updates and for your messages of encouragement here on the internet and in the mail and on the telephone. 🙂

God Bless you.

Transplant Day plus 128 – Better News from Boston!

Hope Lodge, Boston

Thank you all for all your prayers this past week. Last week’s not so encouraging news turned out today to be much more encouraging. Praise the Lord for strengthening Noel and sustaining us through these difficult days!

The Lord will sustain him on his sickbed and restore him from his bed of illness. — Psalm 41.3

Today, Noel was scheduled to see Amy, Dr. Soiffer’s NP, although Dr. S did pop into the consulting room to share the better news with us… Noel’s blood work today showed a slight rise in his red cells and platelets. His liver and kidney functions were much better and the chimerism DNA test showed his donor’s cells to be on the increase again back up to nearly 60%. All very good signs. So although he still has the extremely uncomfortable and debilitating GVHD (graft-verses-host-disease) and is not feeling much better, there are good positive signs things, including the building up of a new immune system and fighting the GVHD, are moving in the right direction. This is all very encouraging and we are so grateful to the Lord for answering all the prayers from around the world… Please keep praying- prayer works!

The steroids seem to be having a good effect, so Noel will remain on them at the same low level and continue to see how he feels. It is better for the long term to be on lower doses as this lessens the likelihood of nasty side effects. His very sore mouth makes eating hard so he is mainly on a diet of soup with soft bread and Ensure (a special over-the-counter health drink). He longs for the day he can go out for a nice prime rib or something Chinese or Indian. Thankfully he has not lost any more weight which is also a good sign.

This weeks blood tests
White cells 1.8 — Last week 2.5 — Normal 3.8 – 9.2 — So a slight drop this week 🙁
Red cells 2.78 — Last week 2.42 — Normal 4.2 – 5.6 — So a slight rise 🙂
Platelets 62 — Last week 34 — Normal 155 – 410 — So a better increase here 🙂

Although the oral steroids Noel is taking are helping him generally feel better, he is still tired and fatigued and needs to rest a lot – but his spirit is encouraged by today’s better news, as is mine. Last week when his sister and brother-in-law were here he only got short ‘at home’ visits with them and felt unable to join me when I took them out and about sightseeing in the local area. But even the short time together was enjoyed by everyone and we are so grateful for them making the effort to fly over from London to visit us.

Next week Noel’s brother and sister-in-law, also from London, fly in for a short 4 day visit and we hope Noel will be feeling much better by then. Unfortunately we do have to be in Boston again next Wednesday for more blood work and a review appointment. But we are hoping Toby might be able to be our driver again and we can do it all in the day like last week, so as to maximize the time with Julian and Ann. Charlotte is looking forward to seeing them and they will be meeting Lucy for the first time.

The past 2 Sunday’s we have missed receiving the Reserved Sacrament as Noel has not felt well enough for Deacon Dave to come over for a visit; but hopefully this next week things will be different.

Last week our son Charles was in California and, this week, Florida for his work. Both on the same continent as we are but too far away to visit… He, Sarah, Eve and Will are all well and doing great. So are Toby, JoAnn, Charlotte and Lucy.

Please pray this week for:

  • the donor cells to grow and multiply in Noel’s bone marrow.
  • for all his blood tests to be moving towards being normal.
  • for increased energy and vitality.
  • for the GVHD to subside and his sore mouth and other side effects to get better.
  • for our plans to travel to Boston next Wednesday, October 24th.
  • for Julian and Ann to have safe travel and a good stay in the USA.

We are sorry we have not been better at returning your calls and reply to your messages but even as it is far from normal, life seems more than normally busy. Noel especially has not felt up to either speaking on the phone much or dealing with email etc. But please don’t stop calling or writing as you encourage us so much. God bless you!

I will lift up my eyes to the Hills, from where comes my help. My help comes from the Lord, who made Heaven and Earth… AMEN! — Psalm. 121. 1-2

Transplant Day plus +121

Glens Falls, Thursday 11th October 2012

This is the day the Lord has made ; let us rejoice and be glad in it. Psalm 118:24

The joy of the Lord is our strength. Nehemiah 8:10

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day… So we will fix our eyes on not what is seen but what is unseen, for what is seen is temporary, what is unseen is eternal. 2 Corinthians 4.16-18

This weeks news is not so encouraging as we would have hoped for. Noel has not felt well for nearly 13 days now, since before we returned, returning home from our extra visit to Boston last Thursday. He even asked me to drive all the way home as he just did not feel up to it. He then spent most of the last 6 days feeling very under the weather, resting and sleeping.

This week our son Toby offered to take time off work so he could drive us to Boston for Noel’s appointments, there and back in the day (something I could not do; and Noel could not have done this week and would not normally do unless no other solution were available). This was a huge blessing as it meant we could spend more time with Noel’s sister and brother in law who are visiting this week from England, staying in a local hotel.

After a phone call on Tuesday with Amy, Dr. Soiffer’s NP we had thought that there was a chance Noel would be admitted to hospital and she suggested that we pack overnight bags just to be on the safe side, we are very grateful he was not kept in Boston, for many reasons!

Noel saw Dr. Soiffer yesterday and on hearing how Noel felt and reviewing his blood results confirmed that the ‘activity’ Noel is experiencing is mild GVHD, Graft-verses-Host Disease. This is actually considered, at this stage 100 plus days after a stem cell transplant, not to be uncommon and is known as Chronic GVHD (before the 100 day point it is known as Acute).

Graft-verses-Host Disease is when the donors white cells (known as ‘T’ cells) become very active and begin to grow and identify the patients organs and body tissues as ‘non-self’ attacking them and reducing their ability to work normally.

Noel will continue to take the the immunosuppressive drugs he has been on since his transplant and Dr. Soiffer has started him on a course of steroids. This should help Noel to feel much better in a few days.

Noel’s blood test results this week showed little change and he did need to have a unit of red blood cells and a liter of hydration fluids by infusion but his platelet count was up so he did not need to receive any platelets. His levels all still remain lower than they should be.

Blood test results:
Red cells 2.42 – Last week 2.52 – Normal 4.2-5.6
White cells 2.5 – Last week 3.7 – Normal 3.8-9.2
Platelets 34 – Last week 19 – Normal 155-410

Dr. Soiffer is concerned but not worried and will continue to keep a close eye on Noel saying he will see him weekly, This, of course, is a little disappointing as we had been so looking forward to not having to make the long journey to Boston every week.

It has been good having Joycelin and Bill here. But sad they have not had the quality time with Noel we had all hoped for. But they have been able to do some local sight seeing and we did have a family meal with Toby, JoAnn and Charlotte, whom they last saw in Ireland at a family wedding in 2009, and they met Lucy for the first time.

Prayers please for:

  • Noel to feel better, less fatigued, less cold, for his digestive system to return to normal and his sore mouth and throat to heal. Noel says if this is how one feels with mild GVHD he cannot begin to imagine what a full blown dose would feel like.
  • For the steroids to be effective with no lasting side effects.
  • For safe travel weekly to and from Boston.
  • For us to keep our focus on the Lord and all his many blessings.
  • For our family here and in the UK.

Thank you for your prayers, love and support during this difficult time.

God bless you.

Transplant Day plus 115

Written at Hope Lodge, Boston on Wednesday, October 3rd, 2012
Transplant Day plus +114

Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge him and he will make straight your path. Proverbs 3:5-6
Be joyful always, pray continually, give thanks in all circumstances, for this is God’s will for you in Christ Jesus. 1 Thessalonians 5: 16

The two week break from our trips here to Boston passed by extremely quickly as we both felt quite tired and so tried to take life easy… It was a blessing to be at home for 2 full weeks. You will see from Noel’s own update last week, he felt quite well and energized, even getting back to writing emails and updates on his computer but as the time progressed he began to feel under the weather. Nothing we could really pinpoint; just very fatigued and feeling cold all the time; definitely not on top form. He found the drive to Boston yesterday exhausting. But did have a good night’s sleep before getting up early for his appointments this morning. But since returning here has been resting and sleeping, feeling pretty ‘yukkie’.

Today’s blood count numbers:
Red Blood cells 2.52 — 2 weeks ago 2.83 — Normal is 4.2-5.6
White Blood cells 3.7 — 2 weeks ago 2.5 — Normal is 3.8-9.2
Platelets 19 — 2 weeks ago 29 — Normal is 155-410

So, as we expected, as Noel was not not feeling great, his red count was down and he did need to have a unit of red blood cells today. His platelets are very low so he has to be very careful not to do anything that could cause bleeding and he may need a platelet transfusion next week. His white blood cell count had actually gone up and is almost within the normal range which does indicate some type of good activity in the bone marrow. But there are other issues that caused Dr. Soiffer to describe Noel’s condition today as being ‘like walking on a tightrope’. He thinks, but is not certain, that Noel might be in for some ‘activity’ (his word) in the coming few weeks.

Noel has some elevation of toxicity in his liver, has a slight skin rash and dry skin; and some returning digestive problems all of which coupled with the fact that his donor DNA levels had dropped in mid-September’s chimerism test from 86% to below 50% (higher is better). He thinks the recent improvement in the white blood count (WBC) may indicate an increase in donor DNA. Apart from the WBC, Dr. Soiffer thinks the other symptoms might indicate the onset of mild Graft Versus Host Disease (GVHD)… So a close watch needs to be kept on Noel. This means he has to see Dr. Soiffer next week instead of two weeks time. We had been banking on not being in Boston next week as Joycelin and Bill , Noel’s sister and brother-in-law, are visiting from the UK and staying in a hotel near to where we live. But we will come up with a new plan once we have spoken with them… Maybe all drive to Boston for the day! As Noel has midday appointments this maybe possible if we share the driving. Please pray that J-&-Bs holiday will not be overshadowed by Noel’s condition.

In saying all this, we are concerned but not overreacting. We are trusting the Lord to make straight the path and we are thanking him in all circumstances for his loving kindness, his protection and his healing… praising him for his faithfulness to us and for his mercy towards us. We continue to have peace of mind and to stay resilient and strong in our faith.

Last week we enjoyed a short early evening visit from some friends, Jos and Ruth from the UK. They had been out in Colorado for the ACCTS Staff meeting. Jos heads up MMI (Military Ministries International), ACCTS’ sister organization in the UK. They were touring our area before flying home from Boston. It is always good to catch up and fellowship with old and ‘not seen enough’ friends.

Both Sunday afternoons Charlotte spent time with us while Lucy was home taking her nap… Having quality time with Charlotte is good for us all. Charlotte enjoys seeing Deacon Dave and Barbara when they visit to bring us the Reserved Sacrament. She calls him ‘the man who comes to bless Poppa’ (amazing spiritual insight in a 5 year old!). I spent a happy Saturday afternoon with Lucy, Charlotte, JoAnn and Toby, apple picking at a local orchard. Apples straight from the tree are so very tasty, along with cider donuts and fresh apple cider. Noel stayed at home resting.

My highlight of last week was (said with my tongue in my cheek): getting a tooth pulled. I developed a very painful abbess and extraction seemed the best solution… glad to say I’m now pain free even if somewhat sad to see the tooth go. Wonder why we don’t just grow a 3rd set!

We received some new photographs of our grandchildren which are attached to this update… Evelyn and William are the children of our eldest son, Charles and Sarah. They live in the north of England. Sadly we do not see them very often. Charlotte and Lucy are our youngest son Toby and JoAnn’s children and live very close to us. So we are very blessed to see them frequently. All four are very close in age and growing up very quickly.

William and Evelyn Charlotte and Lucy

Please pray this week for :-

  • Our families on both sides of the Atlantic and the busy lives they all lead, work and school wise.
  • For Noel to walk the ‘tightrope’ without falling off and for all his cells to become normal.
  • For there to be no more signs of GVHD.
  • For us both and those around us to stay free from seasonal ills. Dr. Soiffer said he would arrange for Noel to have a flu shot next Wednesday, so please pray his delicate immune system will not react adversely to this.
  • For a safe and great visit to the USA for Joycelin and Bill.
  • For the Lord to continue to meet all our needs just as he has been doing. PTL.

We pray for you all and hope that you and your families are all doing well. Please do continue to keep in touch with us. We do miss contact with many of you and love to hear your news whether you live close or far away. We will try and return your calls and reply to your letters and emails… But forgive us if we seem a little slow in doing so.

God bless you and keep you.

PS.Thursday evening, we just got home to Glens Falls… I drove home, not my favorite thing to do on the Interstate or in the rain… But we made it. Noel had woken this morning feeling what he described as ‘fragile’ and said he did not think it wise for him to drive. He is now resting in bed trying to get warm as he feels so very cold.