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!

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.

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

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.