Hope Lodge. Wednesday 28th November 2012

Rejoice in the Lord always, I will say it again, Rejoice! Philippians.4.4

We are rejoicing and praising and thanking the Lord this Thanksgiving season for so many blessings, not least for our son Charles, who was born the day after Thanksgiving, 40 years ago on November 24th 1972. He and his family are a blessing to us in so many ways.

Yesterday we set out to drive to Boston knowing that the weather forecast was for snow over the Berkshires and in Boston… so we loaded the car with boots, snow shovels and blankets and extra food… thankfully none were needed as all we saw was light snow and some rain… not sure who got the snow but so glad we did not.

Noel’s appointment early today started as usual with getting his blood drawn for testing. Today the nurse drew 19 vials of blood, some of which will be used for the research program Noel signed up for earlier in his treatment. The others were for the normal multiple tests he always has. We are so grateful for these tests as besides showing how his progress is coming along they show early indications of any ‘ problems’ that could arise. Two weeks ago at Noel’s appointment Amy, the NP, ordered an extra test, using the blood that had been drawn that day, as it was suspected that part of Noel’s high liver function levels could be due to a dormant virus common to most humans. She called Noel 2 days later to say there was evidence of this virus so a prescription had been sent electronically to our local pharmacy for him.

The virus, known as CMV (Cytomegalovirus) is usually contracted in childhood and can cause some childhood fevers and then generally lies dormant in the body with no symptoms ever again. In people with a weakened immune system it can cause major problems, so we are grateful for this early detection and the powerful (amazingly expensive) drug that Noel is now taking to prevent any attack on his body from this virus. Thank the Lord for such good medical care.

Today Amy came into the consulting room with a big smile on her face and the good news that Noel’s liver function tests are now with in the normal range… Thank you Lord… Noel will continue to take the drug to ward off any CMV and she has lowered one of the anti-rejection drugs which should also help with his levels…

It is a fine balance with the many drugs he takes. We have complete faith in her and Dr. Soiffer’s ability and experience when it comes to ‘getting it right’. Amy also lowered the steroid dose, as the GVHD seems to be under control, which is good progress. He continues to take his many other medications.

Noel’s Red and White cells and platelets showed little change from 2 weeks ago…
Red cells 2.5 — Two weeks ago 3.0 — Normal 3.8 – 9.2
White cells 2.52 — Two weeks ago 3.02 — Normal 4.2 – 5.6
Platelets 48 — Two weeks ago 48 — Normal 155 – 410

So a slight drop in Red and White levels with the Platelets staying the same, Amy says Noel must be very careful not to do anything that would run the risk of injury as platelets this low can cause major bleeding. We are patiently waiting for Noel’s levels to become normal.

The thrush Noel has now had for some weeks in his mouth and throat is slowly getting better but still very uncomfortable and sore. The good news is, he has had some greater levels of energy and motivation, we have been blessed with quite a few warmer sunny days recently and he has ridden his bicycle a couple of miles most days to try and build up his strength again… as he can not yet go back to his exercise routine at the YMCA. Amy said again today he is still restricted and cannot be in public places or with groups of people for at least a couple more months, when she will review the situation again. So this means no Christmas Church services and no Christmas Parties for us this year. In January, Noel will also miss taking part in the very first Welcome Home Initiative solely for female Veterans who have served in a combat zone (the 15th Retreat overall, of which Noel has co-led or led 13 in the past 5 years).

If fact our Christmas is going to be slightly unusual this year. Because Noel is now on a regime of appointments every second week, his next appointment is the 12th of December and two weeks after that brings us to December 26th but because of the holidays his appointment has been brought forward to the afternoon of Christmas Eve, Monday the 24th.

We will plan to drive down to Boston early that morning. After the appointments we find it is usually too much to drive back to Glens Falls, so we plan to stay over night in Boston. I have asked to stay here at The Hope Lodge but there is ‘no room in the Inn’. All rooms are fully booked. Cancer does not take holidays so people need to be in Boston even during Christmas week for appointments and treatment. We are on the waiting list for a cancellation But we will also make a booking at a hotel to make sure in any event we do have somewhere to stay. We will then either drive home on Christmas Day or the next day the one we call Boxing Day. We plan to celebrate the real reason for the season with a traditional English Christmas family meal together with Toby, JoAnn, Charlotte and Lucy on Sunday the 23rd.

So to sum up Noel’s progress… The road continues to seem slow but this is not unusual and the Doctors are pleased with the progress. Yes, there have been some issues to deal with along the way and the road has not been the smoothest. There is still a way to go but we are confident all is well and all will be well.

We give thanks and praise for the love that our Lord God has shown to us during this past 6 months in so, so many ways. His loving kindness has sustained us and given us hope, strength and peace and you have all given us encouragement and support in so many ways. We can not imagine how we would have got through with out the Lord and you, our friends and family. Our Thanksgiving Day thanks were for you all. God Bless you!

Please pray with us this week…

• We ask for prayers for Ron, JoAnn’s father. He has not been well recently and was admitted to hospital via the ER on Monday with congestive heart failure. Pray for his healing. Two ‘out of action’ grandfathers is not good. For the past 6 months while we have not been able to help, Ron has been playing a major role in Lucy’s day care and Charlotte’s after school care. Please pray we, as a family, can still all help provide the daily care the girls need while their parents are at work. Hopefully we can now help a little so long as the girls are well.
• For Noel and all who are in regular contact with him (that’s mostly Meryl and the family) to stay healthy during this season of colds and coughs. A common cold could be serious for Noel could even put him in the hospital.
• For Noel to continue to move forward in his recovery and all blood levels to be good.
• For safe travel to Boston and back in winter weather.
• For a room to become available at Hope Lodge for our Christmas week stay in Boston.
• For the Lord to continue to meet all our various needs as He has been doing. PTL!
• Have a blessed season of Advent. As we await the Christmas celebration of God’s amazing gift to us all… Jesus, for us He is the reason for the season.

And to our Jewish friends and family we wish you a happy and blessed Hanukkah.

“It is good to praise the LORD and make music to your name, O Most High, proclaiming your love in the morning and your faithfulness at night…” Psalm 92:1-2

 

“He gives power to the weak……….He increases their strength”. Isaiah 40:29

Here in Boston we are praising the Lord as He is faithful and does bring power and strength and healing.

The news is good! Over the last 2 weeks since Noel’s last appointment here in Boston he has been slowly feeling so much better… he still has some GVHD symptoms but they are less and not so bothersome and he has had more energy although often just in short bursts. He even felt motivated to read his emails and to talk on the phone even hosting a telephone ministry prayer hour and taking part in another one – things he has not done since last May. The Doctors don’t recommend stem cell transplant patients return to work for 12 months so seeing Noel motivated is encouraging. But life is still just one day at a time on the road to full recovery and often the ‘ups and downs’ come within a day as well as between days.

Today’s appointment was with Amy, the NP, but she said she had discussed Noel’s blood work with Dr. Soiffer immediately before the appointment (she always does) and they had decided to reduce his steroid dose by a third… as Noel is doing so much better, this is good news since long term steroid use can have unwanted side effects.

Noel’s blood levels today showed some improvement in his liver levels but they are doing an extra check because one level remains high. White and red cells counts have improved a little. His platelets remain low and his glucose levels too high but hopefully this will stabilize as he reduces the steroids. So, altogether, there is concern but not over-worry.

Today’s blood levels
White cells 3.0 — Two weeks ago 2.9 — Normal 3.8 – 9.2
Red cells 3.02 — Two weeks ago 2.89 — Normal 4.2 – 5.6
Platelets 48 — Two weeks ago 54 — Normal 155 – 410

As his platelets are still remaining low no date has been set to have the Hickman line removed but as soon as it becomes less likely he will need infusions Noel will be able to have it removed. He asked about how soon he would be able to return to the swimming pool at the YMCA after it is removed. Sadly this will not be for some time yet, Amy said public swimming pools were one of the last places to be restored on the list of places that transplant patients can visit again. She said patients were allowed to swim in private pools and the ocean – not quite the weather yet for either in NE New York (!) – before they could return to public pools and definitely no hot tubs.

A Chimerism test… taken on October 24th, showed Noel’s blood DNA to be 100% that of his stem cell donor. This is exactly the good news we were waiting for as it shows the transplant was/is a success his cancer is in remission and from here on recovery should move only forward. Apparently, it is most likely to remain at this level. Praise God!

Our trips to Dana-Farber and stays at Hope Lodge bring us into contact with a lot of different people with many different cancers. We had two very brief encounters today:

… Over the weeks we have had a number of conversations with a Marine Veteran who is battling and had rediscovered his faith in the Lord. The last time we saw him at Hope Lodge he had been told his treatment options had come to an end but they would not give up on him. He had been much in our prayers and yesterday we had a moment with him, as we got out of a full elevator he got in. In the time the doors opened and shut, he was able to give a thumbs up sign… we took this as encouragement from the Lord telling us He was looking after him and answering our prayers.

… Then, on leaving the building, waiting for our car from Valet parking we saw a young boy about 8 years old with his mom. He was obviously a cancer patient and greatly distressed, weeping silently in his mothers arms. We did not intrude but we both prayed for the Lord to be with them, and silently wept ourselves for them.

We thank God for these brief encounters to encourage and be encouraged. Emotional and spiritual highs and lows come so fast and closely together at places like DFCI and Hope Lodge.

Noel’s next appointment is in two weeks time on Wednesday November 28th. This is good news as it means we will be at home for Thanksgiving. JoAnn has a 5km road run in the morning after which she, Toby, Charlotte and Lucy will all come to our house to share a traditional Turkey dinner… sadly JoAnn’s parents will not be able to join us this year as Darlene has to be at work by 2pm in readiness for the early shop opening time on Thanksgiving Day evening with pre-Black Friday sales… It is very sad that the buying frenzy of the pre-Christmas season is eroding away a traditional family day… bargains enticing people to shop and causing those who work in retail to have to be at work. But none of us will be shopping either day!

Thankfully Charlotte and Lucy have remained healthy, so last week, as we did not have to be in Boston, we were able to help out again with limited day care time… having Lucy for a few hours and Charlotte after school… It was good to have more time with them both again. We will be able to continue to do this as long as they do not have colds or coughs or another infections. Also, we can have visits from friends who are healthy but restrictions remain in place for being in groups of people.

News from Charles, Sarah, Eve and Will in UK is good, the building of the extension to their house is going to plan so hopefully will be finished by Christmas. School and work is going well for them all. But sadly Sarah’s sister and her husband and 3 children who live in New Jersey did suffer extensive flooding damage to their home during Superstorm Sandy… and were without power for many days… but thankfully there are all OK physically.

Toby, JoAnn, Charlotte and Lucy are all doing well… busy with Church, work, school and, for Charlotte, dance, and along with Lucy, gymnastics and swimming.

Please pray this week for:

• Noel to continue to move forward with his recovery and to continue to feel good.
• For safe travel as the weather deteriorates as we move further into winter.
• For us both to stay healthy during the cold season.
• For Meryl to sleep better, feel less tired… and to feel more motivated especially as the holidays approach.

A word added here by Noel: I continue to be completely amazed at how Meryl copes with the stress and strain of all this care giving. She has remarkable peace and strength, which, in our experience, can only come from/by the power of the Holy Spirit!

Give thanks with us for:

• the Lord’s faithfulness towards us during difficult days.
• for His provision for us to continue through the holiday season.
• for Noel’s healing and returning strength we are seeing day by day.

We wish you all a very Happy Thanksgiving, surrounded by those you love and who love you. As we count our many many blessings we give thanks for all of you, your support and love for us. And we ask the Lord to Bless you and your families with health and happiness.

We enjoy reading your messages… thank you for them!

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.

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.

Noel is now sporting his new hair style, the Boston Dome! 🙂

Remember that this site – www.supportnoel.org – is available for financial Gift’s of Love to Noel and Meryl, or you can follow updates on Facebook at www.facebook.com/supportnoel/

Finished getting the platelets ‘now getting red blood cells. He also got an injection to boost his white cells. Lfets hope all this will make him feel somewhat better as today is a down day.

No shower as the say he is neutropenic so won’t let him shower in case of getting an infection so had to wash up at the sink and do feet in a bowl.

Noel now on day three of his intensive chemotherapy, 3 drugs over many hours, lots of fluids, anti nausea drugs, anti biotics, anti rejection so many pills and potions.

Noel is beginning to feel some of the effects of the assault on his body but all in all is still doing OK, resting and following orders, the Doctor on duty just said they are pleased with how things are. We attribute this to all your prayers.

Day seems to have been busy with medical stuff and more information about life after discharge to Hope Lodge next week. That’s when my role as caregiver will kick in! please pray I will begin to feel more confident about this.

Had a good visit from our friends Jim and Jean Morehead and enjoyed reading many messages of encouragement for which we are so grateful but are sorry we cannot reply to everyone.

Yesterday, June 5th, was a long and busy day. Checking in at the hospital which seems as busy as any airport, registration, lots of waiting, Noel getting a Hickman line implanted for his treatments and blood work. Then settling into his isolation room, small but does have window and looks over the tops of very close tall buildings and we can see the blue sky. Before Meryl left for her hosts home she gave Noel a special gift, a quilt she had made him to cover him with love. (when I work out how I, Meryl will post photos).

All the nursing staff are great. The food is OK.

Today, Noel began his isolation ( face mask and gloves for staff and visitors ) he started the chemotherapy and has just finished receiving 2 different drugs plus an anti nausea drug he will get more chemo later this evening. Then again for the next 3 days. Sunday will be a rest day.

We are trying to keep these updates short but if you would like greater detail please e-mail us and we will do our best to reply. Thank you all for your messages and prayers, we have great peace and are full of hope and praying for a successful transplant.