Transplant Day plus 59

It’s Thursday evening and we are home after this week’s trip to Boston. I was unable to update this journal yesterday as the WiFi connection at the Hope Lodge was down…

Our 4 days at home last week went by quickly with a couple of brief visits with Charlotte and Lucy and their mom and dad. Noel was able to take Charlotte for a round of mini golf and I took her for an ice cream before taking her to her dance class at the YMCA. Lucy will soon have lots of Poppa and Granny time as Charlotte starts Kindergarten in September.

A girl friend treated me to lunch at a local restaurant, which I enjoyed. Our friend, Deacon Dave, brought us the blessing of the Reserved Sacrement and another local friend, Michael, popped in for a short visit. But mostly we spent time resting, catching up with mail, making phone calls and enjoying watching the Olympics on TV…

So many great athletes and events to watch it is good to see both our nations doing so well collecting many medals but it is also good to see the smaller nations of the world competing as it is not just about winning medals. It was great that Muslim women were for the first time able to compete, the rules being changed so they could conform to their religions dress code, a move forward for women in those nations.

For us one of the best moments even greater than seeing any performance or medals awarded, was when just after winning a gold medal, the young American female gymnast Gabby Douglas said,

“All the Glory goes up to God and he pours His blessing on me.”

This is exactly how we feel!

Although Noel continues to have struggles in different areas we are both praising God that we can still say things are overall “good”.

This week his blood levels were actually lower than last week and this was a little disappointing as we would like to see a more upward trend. Dr Soiffer says Noel’s blood levels recovery is slow but this is not unusual for patients with Primary Myelofibrosis and he does not see any great cause for concern. We are very confident that he knows what he is talking about. We have great trust in him and his team.

This weeks blood levels:
WBC — This week 2.1, Last week 2.6, normal 3.8 – 9.2
RBC — This week 2.87, Last week 3.09, normal 4.2 – 5.6
Platelets — This week 36, Last week 39, normal over 155

Noel was also showing some raised toxicity levels again. Even though he is drinking over 3 liters of water a day to flush his kidneys. So Dr Soiffer decided again to slightly reduce the anti rejection drugs he is taking. This could have a good effect on lowering the toxicity levels and also a good effect in promoting the donor’s stem cells to work harder in the production of new blood cells, but in lowering the dose there could be a slight risk of rejection. So a close eye will be kept on him and we will be returning to Boston for more tests next week.

I have mentioned before about Noel’s spleen which has been the object of much interest right from the start. Being so greatly enlarged as is often seen with Primary Myelofibrosis. It has been shrinking since the transplant and yesterday Dr Soiffer said he did not think he could even feel it. Amazing! It must be small enough to be hidden behind Noel’s ribs as it should be. Praise the Lord! We now think the swollen spleen may have been the cause of Noel’s breathlessness. We had always thought it was caused by the anaemia but since he still has the very low blood counts and not the breathlessness may be the spleen was pressing on his lungs. A huge praise item as he can climb the stairs again with out being puffed out.

It was a blessing to again this week have a room at the Hope Lodge. Meeting new people and saying goodbye to some whom we had got to know over the past 2 months. they having now finished their treatments are going home. They will all be in our prayers and hopefully we will be able to stay in contact with them though email.

We stopped in at the Spiritual Life Center in Greenwich on our way home to say hello to our friends Father Nigel and Lynn… being also blessed to see Kate, Lynn and Margaret from the Healing Team and even saw Bishop Bill… No hugs for Noel of course… But I got double hugs.

Again this week we have received a number of messages and blessings. Thank you for your kindness and thank the Lord for his provision for us.

This weeks prayer requests are much the same as previous weeks.

  • Safe travel to and from Boston.
  • Better energy levels for both of us.
  • Continuing improvement for Noel’s digestive system.
  • For good blood cell production and rising levels.
  • And for the Lord’s continuing provision for us.

Tomorrow, Friday, Noel has a scheduled 12 month review appointment with his heart doctor. This is the Specialist who found nothing wrong with Noel’s heart after the episode in April 2011 that put him in the hospital and ultimately led to him being diagnosed with the bone marrow cancer. We hope this will be the last time Noel sees this doctor as we are quite sure there is nothing actually wrong with his heart.

Please do keep in touch with us, let us know your news and prayer requests… So we can pray for you. Thank you for continuing to walk this journey with us. God Bless you.

“It is good to praise the Lord … For you make me glad by your deeds, O Lord; I sing for joy at the works of your hands.” – Psalm 92:1-4 (NIV 1984)