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.