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.