Transplant Day plus 79

Written at American Cancer Society’s, Hope Lodge, Boston, Wednesday August 29th 2012.

Morning by morning new mercies we see, all we have needed your hand has provided, Great is your faithfulness Lord unto us! Great is the Lord and greatly to be praised!

No time to read my whole update?Then just fast track to the end to read prayer requests and praises…

How quickly the weeks seem to pass as our routine of 4 days in Glens Falls, 2 travel days and one day in Boston continues.

This past weekend was relatively quiet. On Sunday we enjoyed a visit from our friends Grant and Mandy and little Daniel. They will be moving soon to Norfolk, Virginia as Grant has been assigned to the Naval Base there. Noel and Grant talked about trying to put Noel’s boat in the water and go for a sail before the end of the summer. Amy, the Nurse Practitioner said today that it would be OK, once Noel’s platelet count comes up. Noel must not intentionally swim in the lake water!! Bishop Dan and his wife Carol also came after the morning service at St Mary’s to bring us the blessing of the Reserved Sacrament. It was good to spent time chatting and catching up on news.

On Monday, Noel had an appointment at Glens Falls Hospital – a review with his hematologist to keep her up to speed with his progress. We ran into friends from St Mary’s, Tom and Rosemary, while waiting to see the doctor as they were also waiting to see Tom’s doctor. It was good to catch up with them. We then popped into the main part of the hospital to briefly visit with Ron, our daughter-in-law’s father. He was admitted last Friday with very low oxygen levels. Thankfully he was released today but has to undergo a sleep study as they think his problem was related to sleep apnea. We thank God he is feeling better.

Then on Monday afternoon Noel and I, Toby, Charlotte and Lucy all went to Lake George for the girls to play on the beach and in the lake… just after we arrived it began to rain and we had to take shelter except for Lucy who loved running about in the rain! The rain stopped but before we even set foot on the beach it was closed by the lifeguard. There must have been a thunderstorm warning although there was no thunder or lightening. Charlotte was very disappointed but she was a good girl and we headed to the small play park and the girls played for a while. Before we left for home we enjoyed ice creams, except for Noel who can not have ice cream except when served at home. Click here to see photos.

Today’s appointment at Dana Farber was interesting… Firstly we found out the results of the blood tests taken 2 weeks ago to determine the ratio of DNA in Noel’s blood. This showed that 86% of the DNA belongs to the donor and 14% to Noel! A month ago it was 87% and 13%. This will be closely watched to make sure the numbers rise in Noel’s favor. One day it will be back to 100% Noel.

The results of today’s blood tests we’re also interesting… Red cells were 3.06 this week, which reflects the boost from the 2 units of red cells Noel received last week. We need the number to increase without receiving an infusion as this will show the bone marrow is making good red cells. The white cells were 1.6 today and 1.8 last week so although a fraction down there is not much change but as with the red cells, we do need to see higher numbers. The surprise today was the platelets. For some unknown reason they have dropped from being at 41 last week to being 18 today. Amy said she is not worried but Noel must be careful not to have any bleeding; no skateboarding she said!!!! And if he does for any reason start to bleed we must call her and also seek local medical help. If next week the number has dropped below 10, he will need a transfusion of platelets. We need to see this number rise, as normally platelets should be over 155. But as I said, Amy is not unduly worried and will see Noel again next week. He, this week feels about the same as last so not much change to report on how he is.

We did have an interesting conversation between ourselves and Amy about what we now see were signs of the bone marrow not working correctly for some time before Noel was diagnosed with this type of cancer (we are no longer saying he has it. Amy said he is in remission and recovering). Looking back over about 8 years… we now know certain things were signs but of course we only know that in hindsight and not all people who have these physical signs have this or any other cancer… But Noel had been slowly losing weight not doing anything different. He was actually pleased to be slimmer, but this slow continuous loss with no change in life style is apparently an indication of something being wrong. Then there was that itching for over 3 years which I have talked about before; and latterly the swollen spleen and the anemia. But we decided that since the disease was slow growing and there was no drug or other type of treatment for it, we are glad that it was not diagnosed until April last year as 14 months was quite long enough to cope with it before the transplant. We are so grateful that Noel remained pain free and in reasonably good health as some people suffer greatly as the disease develops. We are grateful that he was offered the transplant, that a donor was found and that Noel is doing well. We can say the Lord has provided all we have needed and we are grateful.

It’s the unofficial ‘official’ end of summer next Monday… This must have been the fastest summer ever… Charlotte, age 5, becomes a Kindergartner next week, riding on a big yellow school bus. One friend from preschool will already be on the bus when Charlotte is picked up, so she is pleased about that. However, she is a little unsure of the unknown, but then who of us is not? She will not have any of her preschool friends in her class, as the little girl who will ride the bus with her is in a different one and all her other friends are in different school districts. Our granddaughter Evelyn, age 4, in England, starts her first year in Primary School but, unlike Charlotte, will walk to school and will have many friends from her preschool in her class. Next year they will both be First Graders. Lucy, age 2, will go one morning to preschool and her cousin William, also age 2, over in England, will be going 2 mornings to the same preschool where Sarah, his mummy, is going to be teaching this year.

During the past 3 months I have tried to keep in contact with everyone. I know I have not done so, as we have folk telling us they did not know what was going on. But I hope that this journal has in some way given you, who read it, a sense of what our lives are like on this journey we are on and that we are grateful for you all. Because we are. Thank you!

Prayer requests this week are:

  • For rising blood levels, red and white cells and especially platelets.
  • For energy levels to improve and energy to be sustained for longer.
  • For Noel’s digestive system to continue to improve.
  • For safety as we travel…

Praises for this week:

  • For the continuing ability to pay all the medical bills.
  • For family and friends who care about us.
  • For progress, although slow, on the road to being healthy and remaining cancer free.
  • For it being well with our souls and for the joy and peace that comes from the Lord.

Thank you for taking the time to read this update… Please do stay in touch with us… By signing the CaringBridge guest book and/or by email to both. Please copy emails to us both as I check my email much more frequently than Noel does.

Thank you for you support and love, God Bless you!

Transplant Day plus 72

“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.

Transplant Day plus 65

Thank you Lord for your mercies, your blessings and for giving us patience in this journey of slow progress. Please don’t let disappointments capture our minds but help us to have a positive perspective and to be happy as we look at what progress is being made.

We arrived back in Boston yesterday evening and are staying at the Hope Lodge again. There has been quite a turn over of guests, so many new faces and names to get to know.

Today’s appointment at the Dana Faber Cancer Institute was with Amy Joyce, Dr Soiffer’s Nurse Practitioner. We have a good relationship with her and she always seems genuinely interested in our lives as well as Noel ‘s health.

Noel has been feeling well, although still having some of the same physical problems that have plagued him these last few weeks. But he is able to cope with them. He even told me yesterday he felt really energized, for a short time anyway! As he still gets fatigued.

Today’s blood test results were a little disappointing as Noel’s progress is still very slow but there was encouragement that they had not dropped lower (except the RBC but only by a tiny fraction.) This was a blessing as they were all above the level for receiving infusions of blood products. So all he needed was his dressing and line caps changed. Noel is looking forward to the day he can have the Hickman line removed. That will be when the doctors feel his levels have risen and he has passed the period of time when he would need transfusions.

Today’s results.
Red Cells RBC — 2.86, Last week’s 2.87, Normal 4.2-5.6
White Cells WBC — 2.4, Last week’s 2.1, Normal 3.8-9.2
Platelets — 40, Last week’s 36, Normal over 155

His liver and kidney toxicity levels are still being watched carefully and at next weeks appointment they may decided to further reduce the anti-rejection drugs.

Noel is only 5 weeks away from the 100 day mark. This is when normally it has been found that with most patients the anti-rejection drugs can be reduced even further. It is around this time that the donor’s stem cells should have become really well established and Noel’s bone marrow should be producing healthy red and white blood cells and platelets. It is expected by then Noel’s clinic appointments will have been moved to every other week and then eventually to monthly.

Noel asked when he could expect his lifestyle to return to being more normal. Amy said it was usual for transplant patients to be able to return to work after around 9 to 12 months. But when he asked if he would be able to attend meetings with groups of people by October or November, Amy said she thought it most unlikely but agreed to review the situation nearer the time.

Noel is a typical A type personality as well as he and his donor having A Positive blood!

He would like things to be moving faster and to be able to get back to his ministry, working with Chaplains and Veterans, something he has a passion for and he so loves. He is beginning to feel energized enough to talk for short periods of time on the phone and to be involved in ministering to people over the phone. He does have better energy levels but still gets fatigued and ‘ hits a wall’ if he does too much. But I am keeping a close eye on him to make sure he does not do too much as it is still early days.

Other news from our 4 days back home in Glens Falls:

Noel ‘s appointment with the Heart Specialist went well and Noel does not have to see him again. PTL…his heart is healthy. Even so, he remains under the watchful eye of a local Glens Falls cardiologist and will have his next 6-monthly visit to him in November.

On Saturday we celebrated Lucinda Violet’s, aka Lucy, second birthday. She was pleased with her presents and enjoyed blowing out her candles. We give great thanks to the Lord for her. Her birth has it’s own miracle story to tell and she is a blessing to us all.

On Sunday we had a couple of short visits from church friends. It is always nice to catch up with what other folk are doing and to pray for them.

Noel had his fortnightly appointment at the CR Wood Cancer Center in Glens Falls and Dr GG was so thrilled with the fact that his spleen has shrunk to being normal size again. She was pleased to see us and hear of the progress Noel is making.

So as we Praise the Lord we can both say ” It is well with my soul” and we do see His hand in Noel ‘s recovery and see his provisions for us daily.

Thank you for your love, your encouragement, your support and for following these updates. Please forgive us for not replying to everyone personally.

Please keep us in mind as you pray because God is answering your prayers. And we praise him for our many blessings daily.

Please continue to pray:

  • For a steady rise in all Noel’s blood levels.
  • For continued well being and energy levels.
  • For continued patience during this slow journey back to full strength and health.
  • Not to be frustrated or disappointed; and to turn negative thoughts to positive ones.
  • For continued ability to minister to others even if not being able to be with them.
  • For the Lord to continue to provide for our needs.
  • For the time spent with Charlotte and Lucy to be quality time if not quantity time and for continued safety as we travel back and forth.

God works for the good of all those who love Him, God Bless you all.

PS: As the Internet connection was still not working at the Hope Lodge I am posting this from our home in Glens Falls on Thursday evening.

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)

Transplant Day plus 51

We are just past half way, 49 days to go to the the 100 post transplant day mark. Noel will then move into the second phase of his recovery. As he is slowly weened off most of the anti rejection drugs.

We arrived back in Boston after being home in Glens Falls for 4 days. This week we are staying for 2 nights at the Hampton Inn as the Hope Lodge could not offer us a room. But we are blessed again to be staying here at the discount rate for Dana Farber patients. It is a very comfortable hotel.

To recap on last week. Noel received 2 units of red blood cells at the clinic last Wednesday to give him a boost as his counts were low. Thursday morning he did not feel so great. Not what we expected but thankfully by mid day he was feeling much better. We were able to drive home; even stopping briefly to say hello to a friend who lives just outside Albany. We then made it home just ahead of a big storm and were once again glad not to have been driving in the rain…another blessing.

On Friday Noel had an appointment with hid Doctor at the Glens Falls Cancer Center. She was pleased to see us again as we were her. These appointments with her are basically to keep her up to date with Noel’s progress. As one day in the future Noel’s care will again be shared between her and his Doctor in Boston. This will be another blessing as it will mean less traveling to Boston.

Over the weekend at home we enjoyed being able to watch the Opening Ceremony of the London Olympics with Toby, JoAnn and Charlotte. Lucy was sleeping. As we were at their house Noel had to wear his face mask and gloves but it was so much more enjoyable watching it on their large HDTV… another blessing. If you also watched it I hope you enjoyed it as much as we all did.

On Saturday Noel was not having the greatest of days so he relaxed in his Lazyboy and watched the Olympics. I have to admit I also watched them. My new role as caregiver is not difficult but sometimes I too feel quite tired. It is a blessing being able to enjoy spending time together.

Sunday was a better day for Noel and the family came over after church for Lunch and Toby blessed us by cutting our grass. Noel must not be outside when grass is being cut as it brings up mold spores which are not dangerous for us to breath in; unless like Noel you have a compromised immune system. Our evening blessing was Dave, our friend and a Deacon at St Mary’s Lake Luzerne, visited us and shared the Reserved Sacrament with us. We are looking forward to the day we can both go back to Church.

Thankfully Noel has felt well this week. Within his new normal that is. Today at his appointment at DFCI we saw Amy Joyce the NP. We had a couple of things to ask her…. Noel had developed a reddish rash on his face, she does not think is anything serious and suggested using an OTC hydrocortisone cream. She also decided to cut the dose of magnesium oxide he takes from three to two times a day. She hopes this will help improve his digestion and he won’t have to rely so much on taking Immodium as he has had to do since the transplant.

Amy says Noel’s counts are still being slow in recovering but she thinks that is just the way it is for him and is not greatly concerned. There is no right or wrong speed of recovery. It is just one day at a time.

White blood cells. Today 2.6 Last week. 2.6 Normal is 3.8 – 9.2.
Red blood cells. Today 3.09 Last week 2.75. Normal is 4.2 – 5.6.
Platelets. Today 39 Last week 47. Normal is over 155.

So the blessing in all of this is that there is some stability even in the low readings.

Because Noel feels quite cold even in this rather hot weather we are having in the north east. Someone had suggested he might enjoy sitting in the warm sunshine; sadly not because of the drugs he takes it is very important to stay out of the sunshine.

Please keep praying along the same lines as before:

  • For Noel’s blood counts to go up.
  • For increased energy.
  • For his digestive system to return to normal.
  • For safety as we travel.
  • For the Lord’s continuing provision for us as the bills arrive in our mail box. We continue to trust that He has a plan for how we pay those bills.

Thank you for continuing to walk this walk with us. Although the walk is slow we are glad you are hanging in with us. You are all a great encouragement to us and we enjoy hearing from you. May God Bless you as you bless us.

So again we count our blessings and give thanks to our Lord for him also walking this road with us as he promises in Hebrews 13:5 ” I will never leave you or forsake you”

Just one final note …as some have asked…. Donations to Caringbridge do not come to us. They help provide this web page at no cost to us. Please make donations directly to us here on the website.