Transplant Day plus 170

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.

Empty Vials - 19 in all

19 Empty Vials

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.

Collecting the blood

Collecting the blood

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…

Labels, labels, labels!

Labels, labels, labels!

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.

Transplant Day plus 156 – Encouraging news from Boston

“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

Boston Dome no more, fuzzy fluff starting to return!

Boston Dome no more, fuzzy fluff starting to return!

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!

Transplant Day plus 149, from Glens Falls, NY

On this very cold, sub-zero, day I’m very blessed and pleased the specialist in Boston didn’t want to see me this week. Only the second week since coming home from ending a month’s stay there in early July that we haven’t had the tiring nearly 500 mile round trip there and back.

Next visit on November 14th.

The thrush in my mouth and throat is still present and sore – but I do feel somewhat more energetic and motivated most days.

Hoping the US election result will cause all parties to work together in a united way and get the country governed better.