Monthly Archives: January 2013

Transplant Day plus 227

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Hampton Inn, Boston

‘Give thanks unto the LORD, call upon His name, make known His deeds among the people.’ 1 Chronicles 16:8

This week we have much to give the Lord thanks for. Here are some of the reasons why.

We left Glens Falls yesterday in bright sunshine but freezing temperatures fully expecting to see snow as we drove east. But thankfully the day stayed clear and dry as today has been, along with the coldest below freezing temperatures for 2 years… we hope tomorrow’s drive home will also be dry and clear.

We are thankful again to be able to stay here at the Hampton Inn in Boston as there was no room at the Hope Lodge… thankfully getting a hospital discount on the normal room rate.

We were thankful today that Noel’s blood work was stable, much the same as last week and although we patiently wait to see higher numbers we are happy – as is Dr. Soiffer – that for now the results stay stable. This being so, and as Noel has not needed any transfusions for the last couple of months, we give thanks that today Noel’s Hickman line was removed… this only involved a little discomfort and the wound should heal quickly. After over 7 months of daily flushing the lines to prevent clotting and covering the site with ‘press and seal’ before Noel showered, I am happy for both of us to no longer be doing this ‘caregiver’ task.

This weeks blood results were almost exactly the same as two weeks ago.

Red Blood cells, 2.66 — Two weeks ago, 2.68 — Normal, 4.2-5.6
White Blood cells, 3.4 — Two weeks ago, 3.4 — Normal, 3.8-9.2
Platelets, 56 — Two weeks ago, 58 — Normal, 155-410

We are thankful Noel’s liver and kidney levels were also much the same. The toxicity levels seem to be affected by the anti-rejection drugs he takes and so should eventually return to normal.

We are thankful that Dr. Soiffer seeing the GVHD is still slowly improving, again lowered the steroid dose… Noel has put on some weight because of the steroids and also has a ’round face look’ typical of those on steroids and we are thankful this should eventually go away after he comes off them.

We are thankful that, although Noel’s progress is still slow, Dr. Soiffer confirmed what Amy said 2 weeks ago. Appointments can now be spaced 3 weeks apart so the next one is planned for Wednesday, February 13th. (Five years to the day when Charlotte has her port inserted for her cancer treatments).

Noel eats an Angus Bacon Cheeze BurgerNoel was thankful that, whilst waiting to hear this afternoon’s appointment time for his Hickman removal, he was able to have lunch of a freshly cooked Angus Burger with bacon and cheese. This was his first meal not cooked by me since May last year!! He is not yet cleared to eat normal ‘take out’ food or to eat in restaurants but we found a quiet place to sit, away from others, and the chef at the grill at the Dana-Farber restaurant was willing to cook the burger fresh for Noel. Normally during the busy lunch time they are pre-cooked and kept warm – a big “no, no” for the food Noel eats.

  • We are thankful even with coughs and colds in the family we have stayed well.
  • We are thankful that we are able to walk for exercise at the Glens Falls Civic Center away from crowds and in a warm and dry environment.
  • We are thankful for seeing our grandchildren Eve and Will in England in real time via the computer and have some one on one interaction with them.
  • We are thankful for the time we can spend with Charlotte and Lucy.
  • We are thankful for Father Dave bringing us the Reserved Sacrament each week.
  • We have been thankful for Bishop Dan Herzog’s ministry as interim priest-in-charge at the church we attend, but haven’t set foot inside for over 7 months. He and his wife, Carol, have visited us numerous times, bringing Communion when Fr. Dave could not come.
  • We are thankful for phone calls and emails and even Facebook that keeps us in contact with friends.

Above all, it is to the Lord we are most thankful and we know that all things work for the good for those who love Him… and we are grateful for so many answered prayers and blessing. Please give thanks with us.

Please continue to pray as before for us on this journey to full health.

  • For Noel’s new donor bone marrow to make good strong blood cells.
  • For the resources to cover all the ongoing medical and drug costs.
  • For patience as we spend more time at home but still with many restrictions.
  • For our families here and in England.
  • For safe traveling in winter conditions.

With love and prayers for you all. Thank you for reading our updates and praying for us. Your encouragement to us has been amazing over the last few months… God Bless you.

First Update of 2013 – Transplant Day plus 213

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Hampton Inn, Boston Crosstown, MA.

” If you look at the world, you’ll be distressed. if you look within you will be depressed. But if you look at the Lord you’ll be at rest”. Corrie ten Boom.

” I lift my eyes to the hills. Where does my help come from? My help comes from the Lord………..Both now and evermore.” Psalm 121.

Happy New Year to everyone! The new year here in the North East USA brought us expected very cold temperatures and snow… ‘beautiful to look at’ is all I have to say about it! But we were blessed by Toby and a friend of his and JoAnn’s who snow plowed our driveway and side walks after the two heavy falls. We are sure the winter will bring us more snow but hopefully sunny days too.

Today is day plus 213 or 7 months post transplant… and we continue to see slow but steady progress along the road to recovery. We saw Amy, Dr S’s NP today. She was happy with Noel’s general health and pleased to hear he is regularly walking for exercise…
His WBC was looking a lot better today and almost into the lower range of normal. His RBC remains much the same as do the Platelets. His blood DNA is still at 99/100% which is good and expected; and his GVHD is slowly getting better but energy levels still fluctuate daily.

Today’s bloodwork results
White blood cells, 3.4 – Last time, 1.9 – Normal, 3.8-9.2
Red blood cells, 2.68 – Last time, 2.65 – Normal, 4.2-5.6
Platelets, 58 – Last time, 58 – Normal, 155-410

Amy, seeing the improvement in the GVHD, has again lowered Noel’s dose of steroid so hopefully he will soon be off it altogether. His liver and kidney levels were also looking a little better.

We talked with her about his immune system and when we could expect to see it recover… She said it is still early days and described his immune system as having 3 components: first, the system itself, Noel’s being a ‘baby’ one just 7 months old. Secondly, the blood count levels, especially the white cells. And, thirdly, the drugs he is on that can suppress or affect the immune system. She thinks it will be later in the Spring around March when restrictions can start to be lifted but is willing to keep reassessing this. But this is the worst part of the year for coughs, colds and ‘flu, evidenced just today when the Mayor of Boston declared a state of health emergency, the city having had over 700 flu admissions to hospital in the last few days, more than 10 times the total for last year. This week the ‘flu virus seems to have hit many areas country wide and hospitals in several cities are overwhelmed with cases and a number of deaths. It seems that although the vaccine does help it is missing one strand which is hitting some people very hard. We are trying to keep away from people and germs as Noel is more susceptible than the average person, even though he had a ‘flu injection back in November.

Noel is very much hoping to have all the restrictions lifted by mid March as he would like to fly to Atlanta for an important 3 day CANA Convention. But as this involves travel and being with a lot of people we will have to see how things pan out… Amy is not willing to take risks and neither are we… We have come to far to have any avoidable set backs.

Noel’s next appointment is in 2 weeks on January 23rd with Dr. Soiffer. We hope he will say Noel can have the Hickman line taken out as it now seems redundant as he has not needed a transfusion for over 2 months. Amy said she was hopeful he will also be moved to appointments every 3 weeks… So that will be another step forward.

This visit we were unable to have accommodation at the Hope Lodge but thankfully have been able to stay at the Hampton Inn at the reduced hospital rate. This was an answer to prayer as when I first tried to book there were no rooms available. With so many hospitals in Boston and so may out of town patients, subsidized rooms are greatly sought after. Praise the Lord for his faithfulness to us. Our prayer this year continues to be that He will provide for our needs as he did throughout the last year.

We continue to be blessed by our friend Father Dave (formally Deacon Dave) who was ordained as a priest in December. He brings us Holy Communion each week. Also by visits from friends and family (germ free, of course). And we are enjoying having Lucy for some day care days and seeing Charlotte after school some times. Thankfully they have remained well and healthy. Long may it last!

We hope your new year has got off to a good start. We were pleased to have lots of news from people over the Christmas time and we would love to hear your news and prayer requests at other times too… Do keep in touch.

Prayer requests

  • for movement forward to appointments every 3 weeks.
  • for resources to meet all the medical bills and associated costs.
  • for accommodation needs in Boston, either at the Hope Lodge or reduced rates at the hotel.
  • safety as we travel in winter weather.
  • good health keeping free from seasonal germs.
  • for our families here and in the UK.

And please give praise with us for so very many blessings that have seen us through the past almost 2 years since Noel was unexpectedly diagnosed with cancer. A journey we would not have chosen but one of many blessings.