“This is the day the Lord has made and we DO rejoice and ARE glad in it.”
We are sitting here on the 8th floor of the Dana Farber Cancer Institute in the infusion department in a room with a view across the medical district of Boston. It’s a beautiful sunny day and now at 4pm there are puffy white clouds in the sky.
Today at Noel’s weekly review appointment his blood tests showed his red blood count had dropped a little lower so he is receiving 2 units of red cells. We are grateful to the blood donor as this should give Noel a nice energy boost. This past week he has been feeling mostly good along the same lines as before and coping well. Amy Joyce, the nurse practitioner said sometimes you just get used to your body having low counts and that then seems normal until you look back after the counts have come up again. The infusion will take about 3 hours as it drips very slowly so not to raise his blood pressure too high.
Amy said she is still pleased with how things are. Although his progress is still slow and both red and white counts have dropped a little. But he seems to be keeping steady and there is nothing unusual or worrying happening. We can all give thanks and praise for this!
Today’s blood test results:
Red blood count — 2.6 / Last week — 2.86 / Normal — 4.2-5.6
White blood count — 1.8 / Last week — 2.4 / Normal — 3.8-9.2
Platelets — 41 / Last week — 40 / Normal — Over 155
His kidney and liver levels were looking better today… A result of the lower drug doses and all the water he has been drinking. Amy again lowered the Sirolimus and Tacrolimus anti-rejection/immune suppressant drugs. These work to prevent Noel rejecting the donor and the donor rejecting Noel. A good balance has to be found and this seems to be working well. Thankfully Noel has not shown any signs of rejection or graft verses host disease. We hope and pray this trend continues into the future but there is still a long way to go and setbacks can happen.
Praise the Lord for two definite indications that progress is being made. Firstly the disappearing spleen which I wrote about last week and now this week Noel has noticed for the first time in about 3 years that after having a shower, he no longer has bouts of incredibly horrible itching that used to last for about half an hour and was very irritating. So PTL these are good signs that all is well.
All Noel’s social and food restrictions remain the same but at the weekend we did enjoy celebrating the 38th birthday of Toby, our youngest son. We had a family dinner at our house and dessert was a traditional orange sponge cake. Noel’s mother was a fabulous cook and she would always make an orange sponge cake with orange icing for everyone’s birthdays so we try to keep up the tradition with Nana’s orange cake.
On Monday we also enjoyed a visit from our friend Bishop Dan who again brought the Holy Eucharist to us. This is always a blessing.
On Monday evening good friends from our days together in the British Army came to have a meal with us. They live in Florida for 6 months of the year and the remainder in Europe. They are on a trip visiting friends and seeing Boston and New England. We had not seen them since we visited them in their home in Florida 5 years ago. We had a lot of catching up to do and it was a fun evening. Of course I got double hugs as Noel could not give or receive any!
Yesterday we chose to drive a more scenic route to Boston. We took Route 2 though the Berkshires. It was a beautiful day and we enjoyed the quieter roads and the small towns and beautiful countryside.
We are again blessed as we are staying at The American Cancer Society’s Hope Lodge. I have now been able to pre book two nights each week through to the end of the year. This is a huge blessing as there is no cost (donations are never refused) for the great accommodation they offer. We are grateful to those who support the American Cancer Society and enable them to not only support research but also offer daily practical help to cancer patients and their families. We hope that Noel will soon move to appointments every 2 weeks. This will be when his counts are consistently higher and then we will be able to cancel some of those bookings at the Lodge.
We do read all your messages on CaringBridge and do appreciate every one… I think I should have hit the like button on everyone’s message to show we had read them. Sorry I did not think of that earlier.
Thank you also for your phone calls, e-mails, cards, your practical support and your prayers. This journey would be so hard with out you all. Thank you for continuing to walk alongside us. You help us to stay positive and resilient and to be cheerful, to the extent that several folk have said that Noel seems to look and act so normally it is difficult to believe he is ill. We choose not to interpret such comments in a negative way!
Today turned out to be a long one… We spent over 7 hours at the DFCI and felt like we had done a days work by the time we got home to the Lodge. But it was a blessed day.
We will be back here in Boston next week for our 8th weekly visit since our 4 week stay in Boston before and after Noel’s transplant. Noel will be about 3 weeks away from the 100 day mark. There is nothing special about this day and it is not the end of the journey but merely a progress marker. Most people who have developed acute GVH disease usually have done so by this time. Of course, GVHD can develop at any time in the future, even in several years time, so a close eye will continue to be kept on Noel to make sure there is no rejection by the donor’s cells. Last week a blood test was taken to determine the level of the donor’s DNA to Noel’s DNA. Hopefully the results will be back next week.
Thank you for all your prayers please continue to pray along the same lines as last week.
We thank God for you all, our family and friends world wide. God Bless you.