Monthly Archives: June 2012

Transplant day plus 18

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A day of praise…..

  • *Noel says today he feels the best he has for 3 weeks…..still a few side effects but nothing like what has been. PTL
  • *Afternoon visit to the DFCI for blood work……levels all on upward trend so no need today for a boost of any kind. PTL
  • *Doctors NP Amy says if all stays the same Monday will be our last visit before we go home…just returning for a weekly review visit….most likely on Wednesdays. PTL
  • *We give praise today for so many things here is a list but I expect I have missed something……
  • thank you for the unknown BM donor
  • thank you for those who donate blood and platlets, Noel has needed quite a few units.
  • For all the research and those who have gone before us in this walk trialling all the drugs and procedures..resulting in better care and treatments.
  • For amazing doctors and great caring and compassionate nurses
  • For a good place to stay for me during Noel’s hospital stay through Hospitality Homes of Boston
  • For this amazing facility where we have been able to stay together, Hope Lodge, through the American Cancer Society
  • For Noel ‘s good health right up to the transplant
  • For, although very nasty, his side effects seem short lived
  • For increasingly better blood counts
  • For last nights concert at St Mary’s Lake Lurzerne, what a blessing the money raised will be to us as the many medical bills roll in
  • For all those who have sent personal gifts to us
  • For all the loving messages we have received
  • For our family and friends who are walking this journey with us
  • For prayers of so many, many people all around the world
  • For answered prayers
  • For these and others we give thanks and praise the Lord.

Other news:
Yesterday Chaplain Paul Minor from the National Guard visited us again and shared Communion with us, another blessing to give thanks for!

As we move forward in the outside world next week there are still many restrictions to follow as Noel will be at risk of infection. He has to stay away from all places where the public are like shops, church etc and of course restaurants are out of bounds. No public transport. This is because he has a very compromised immune system. Although he can have home visits from others who are free from any infections on a one on one ( or 2). After day 100 post transplant the Doctors will begin to reduce the anti rejection drugs he is on… This then becomes the most likely time when folk can get what is know as GVHD, graft versus host disease although that can also happen during those first 100 days…. But with the fully matched donor we are praying this will not happen.

So Noel stays for now on the many, many drugs he is on to fight rejection and infection.

So a great day for praise…. Please keep following our journey, I will post updates from time to time….. And we will continue to read your comments. Once home we will try and be in better personal contact with you….feel free to email or call us.

Transplant Day plus 16

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Praise the Lord for all the many answered prayers this has been the best day yet……Noel feeing relief of all his bothersome side effects not yet gone but so much better…We had an early start with blood work at the Dana Farber Cancer clinic….then appointment with Dr Soiffer, Noel’s Doctor, one of the top guys here for Noel’s disease. He said looks like we are on track with white cell count going up, also the platelets. Red cell count a little low today so ordered him a unit of red for a boost by infusion. Said engraftment is a little slow but that is typical for Primary Myelofribrosis so no worries there. He felt and measured Noel’s spleen and that seems already to have reduced in size. He said Noel needed to have bloodwork done Friday with a review appointment and one on Monday too. Then it looks like we shall be heading home to Glens Falls on Tuesday, after a month here it will be great to be home……of course we do have to face weekly appointments back here for some time to come. But that has yet to be worked out.

So it is a day to give thanks and praise and we do, as we move on towards the plus 30 day mark and onward………..please give thanks with us for all the blessings of the last month…not least that we know we can continue to stay here at Hope Lodge until Tuesday, accommodation here is highly sort after and not always available. To move to a hotel would have been no fun.

As Noel’s hair has been falling out for day’s now, today at the Friend’s Place ( for hats and wigs, scarves etc) at the DFCI they gave Noel a hat great hat….but what will Toby say?
it is a bright red Red Sox baseball cap…..but still great to cover his head. Go Yankies!

Another cause for praise, yesterday our granddaughter Charlotte went to see her oncologist at Albany Medical Center for her 6 month check up and besides being a brave girl getting bloodwork and a scan done she is doing great, still cancer free and moved up to 12 month appointments. she will be celebrating her 5th birthday on July 12th….for a cancer survivor it is all about more birthdays…..

When we were in the hospital we heard stories of how a lot of the bone marrow/stem cells comes from Germany, where it was said donors receive large payments….I did not think this could be true so I wrote to both the US and German organizations to ask… Had a reply… Neither the American or the German one pays, it is all collected from volunteers and all their costs are covered by the recipients health insurance…so it turned out to be an urban legend… I am pleased to say.

You can volunteer to be a donor Check it out at www.bethematch.org

Please continue to pray for Noel’s journey, still a long roard ahead….and please continue to follow our story and leave us messages everyone is very important to us and an encouragement to us. God bless you.

Transplant Day plus 14

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The weekend was quiet with just short appointments at the DFCI for Noel’s Neupogen shot and Hickman line flush, Sunday afternoon we had a good visit from our friends Jim and Jean Morehead, we sat outside as thankfully the weather was warm and sunny. Hope Lodge is very quiet at weekends as many people go home or away as they don’t have appointments.

Over the weekend although Noel still has the problems with those nasty side effects and can still only manage oatmeal and soup. He did start to feel better within himself and his voice sounded brighter……we took this to be a good sign and so although an added side effect is his hair falling out we felt the corner was turned as the Doctor’s had predicted, as today Monday Is day plus +14.

First stop at clinic today was for blood work…. Then the review with Doctor, actually his NP Amy, we really like her and the good news…. PTL

White cell count 2.5
Red cell count 3.09
Platlets count 12

So every one up by a little… Of course they are still way low compared to normal but high enough not to need either a transfusion of platelets or red cells today…. So Noel just got an infusion of magnesium and his daily shot for the white cells……and the great news no clinic tomorrow. A day off ! it will be strange not having to go anywhere…hope it won’t feel like a long day.

So right on track as expected for day plus+14. Appointment on Wednesday will hopefully confirm this upward swing in all his levels……and we will also see progress in the side effects lessening….

He still has that very impressive list of over 20 medications , pills, potions and lotions……

He has lost a little weight and a little hair but considering everything his body has been through and is going through I think he is looking good.

We are both able to say it is well with my soul, rejoice and give thanks as morning by morning new mercies we see and sing our special ( wedding day ) hymn Great is thy Faithfulness……

On a different note here at the Hope Lodge it was “corn toss” this evening in the very nice court yard garden….. I would call it bean bag toss…… Simple game of tossing a corn or bean filled bag and getting it in the hole….a game I don’ t think I have played since Elementry School days.

Noel did not join in the fun so missed me being the joint second place winner…I lost the play off toss but won the 3rd prize.. a gas gift token for $25. So what with our super market gift cards and tonight’s prize we have been very blessed. All the gift cards are donated to the Hope Lodge.

Weather here in Boston has turned very wet…..tonight we have a huge thunder storm…..

Thank you for your continuing prayers for us, Noel still has a long way to go on this journey so please keep praying…. God is surely hearing your prayers and answering them…..and all your messages are of great encouragement to us…. God Bless you.

Transplant Day plus 11

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I read a quote from Martin Luther today. ” It is not how well you are doing but how well you are doing when you are not doing well “. So we give praise to the Lord that although just now our circumstances are not great we are doing well. As in 1 Thessalonians ‘be joyful always, pray continually and give thanks in all circumstances..’ so we are and we do !

Yesterday was a short clinic visit just to receive the daily white blood cell boosting shot……….not a great day for Noel but the evening highlight was a icecream and trivia evening, here at Hope Lodge hosted by two college seniors. Noel and I and a lady from Rochester NY and a young man from Georgia, the country not the state, formed a team for the trivia game, we called ourselves The Internationals….sadly Noel had to retire half way through for health reasons but the 3 of us remaining team members went on to win the game…Each receiving a gift card to a local grocery store…One question was.. ” which domesticated animal is not mentioned in the Bible”. I am pleased to tell you was the only person from all the teams who knew this answer…..” the cat” along with being the only person from all teams who knew what language the word Molasses comes from….answer “Portuguese”

Apart from deveioping some large nasty mouth and throat sores ( again seen as normal ) Noel has been a fraction better today but still plagued by all the nasty side effects…and just on a oatmeal and chicken noodle soup diet….

His blood tests to day showed he still needed to get a unit of platelets but his red count was a fraction above the transfussion level so he did not need red cells today, just the platelets and his shot for the white cells both of which are still too low.

Saturday and Sunday he just has to go to the clinic to get that daily shot and Monday it’s back for blood work and seeing the Dr /PA and what ever is needed……. As Monday will be transplant day plus +14 ( yes two weeks ) the Doctors expect to see some improvements in his cell counts…. Then we should begin to see signs of engraftment of the new stem cells in the bone marrow anywhere up to day +30. A real milestone on the road to day +100. Which still seems so far away.

Thank you for all your on going prayers, thoughts and messages….. They so encourage us…..Noel as yet does not feel up to talking on the phone or replying to your messages but he sends you all his love and when he feels more like himself again will be back ‘on line’ as they say……….till then hopefully I am keeping everyone posted but again sorry I can not reply personally too every message……but know every message is important.

A have a blessed and happy weekend end after a mini heat wave here in Boston with record temperatures this evening we got rain and it seems refreshingly cool…..

A huge thank you to those who are generously helping us though this journey, your support is a blessing and greatly appreciated.

Thank you also to the 3 friends who have donated to Caringbridge who provide this free web site ..you donation helps them do that.

If you live in our home area a friend Deacon Alan Hart is putting on a benefit concert of his and others folk songs this coming Thursday evening at 7 pm. In St Mary ‘s Church, Lake Luzerne, New York. Noel and I have greatly enjoyed the other concerts Alan has given in the past and we wish we could be there to hear his great music…..”Thank you Alan”

Transplant Day plus 9

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Yesterday was low today lower on all counts…

..PA says he sould see improvements by day 14… Right now that seems a long way off…

Doctor said fully expects him to feel like S*** today!….. and he does!

Getting platelets and 2 units of red cells again plus the daily shot…. Infusions will take over 3 hours so having already being here since 7am and now being 10:30am it’s another long day at the DFCI. Where it is Celerbrate Cancer Surviorship Day. Yes, for more birthdays!

Noel will try with Dr’s permission taking a double dose of sleeping med this evening and hope for better sleep and trying something different for the terrible itching, sadly they don’t want to give oral drugs for the horribly painful yeast infection as it would react badly with a couple of the other drugs he is taking.

We are trying to stay positive keeping our focus on the positive things to come. And trying to encourage those we meet with a smile… And a blessing…

Thanks for sticking with us through this journey… you are a great blessing to us both… God Bless you.

Record day for time spent in the clinic. 7 hours 15 mins. No wonder when children have a BMT they stay much longer as inpatients…

Transplant Day plus 8

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Noel’s lowest day to date….

Noel did sleep a little better last night with the aid of the new drugs but suffering greatly from the effects of his greatly compromised immune system and from the huge amounts of antibiotics he is getting…he has a very painful yeast infection and the topical treatment suggested by PA yesterday is bringing little or no releif.

After our 8am visit to the clinc today for his Neupogen shot , no tests or infussions sheduled for today, we retuned home to Hope Lodge where he feeling very chilled decided to go back to bed and has been sleeping.

So this I would say is his lowest and most difficult day both physically and mentally……..at around 2 pm we have a local guy coming to bring us communion so I am praying that will bless Noel and lift his spirits…

We have longer day at the clinic tomorrow with a 7am start again please pray this will be a better day in all respects.

Transplant Day plus 7

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It’s a week since the transplant.

Super early start….had to be at the clinic for 7am. A blessing they have muffins,tea / coffee and fresh fruit. Noel can eat fresh fruit only if it has thick skin…so he had an orange…he is missing fresh fruit and salads.

Blood counts first….no real change. When we saw the Doctor’s NP she said they did not expect to see any real change till around day +12 and his very low counts are normal…also feeling well below par is normal…..today white cells the same at .9 ( point 9) 3.8 to 9.2 is normal
Red cells 3.24 yesterday 3.1 normal 4.2 to 5.6. The 2 units made a little difference. And platelets today where 13 from 9 yesterday they should be 155 to 410 !

Noel did not need red cells today just got a unit of platelets and his white cell boosting injection, which untill I reminded her the nurse almost forgot to give him!
NP prescribed a prescription medicine for the itching and rash he has from low platelets and a sleep aid to help him sleep, fatigue with no sleep is not good.

Question was asked in one message from friends about Noel’s neutrophil level quoting the normal UK counts…. Not sure the system for measuring is the same here ( I know measuring my diabetis is way different between the two countries) but Noel does have Neutropenia hence he is getting the shot of Neupogen daily to help encourage the growth of new white cells. Today his white count was 0.9 when normal range is 3.8 to 9.2. So has little or no resistance to infection right now. Hence all the different antibiotics he is taking which in themselves have unpleasant side effects that he is having to deal with…….. But every day is one day closer to the 100 on the year’s road to recovery….

We are so enjoying reading messages posted by friends we have not seen for quite some time ( years) it is amazing how the word has got out and through the wonders of modern technology we can be in touch
again..

We are always sad to read of others who are on their own journey with cancer or other health issues and we are keeping you in our prayers. For full healing, strength and courage as you fight the battle. Remember FROG. Fully rely on GOD……

Such beautiful weather here, sunny and warm, hot in the sun….although we are not in it. Here at the Hope Lodge they have a large stand with tourist brochures, there are so many interesting places to see…I am looking forward to the day we only have to come back for 3/6 or 12 monthly reviews and maybe then we can play at being tourists…..

God Bless you all for walking this walk with us….the Lord’s rod and staff comfort us and your friendship encourages us, thank you.

Father’s Day 2012 – Transplant Day plus 6

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Friday was day plus 4 and back to the clinic at the Dana Farber Cancer Inistute for Noel’s blood level tests and a shot of Neupogen to boost the white cells…most of the day spent resting.

Saturday was day plus 5 and we spent over 4 hours in the clinic as Noel needed to get blood work done along with the daily shot of Neupogen and he also needed an infussions of another unit of platelets and a unit of red blood cells…. He felt very fatigued and bothered by side effects.

Today Sunday day plus 6 our visit lasted over 5 hours…..with Noel being infussed with a chemo drug called Methotrexate which helps to stop the rejection of the new stem cells along with the other anti rejection drugs he is taking daily in tablet form. Received his daily shot for the white cells and today he needed another unit of platelets and 2 units of red blood cells….and also an infussions of magnesium. All this took a long time to drip into him. He read a little but mostly napped and I watched old TV shows on my iPad.

We were able to have a sandwich and a drink from the food cart at lunch time. Provided free for paitents but they always have plenty so let caregivers have some too for which I am grateful.

Noel is not sleeping well at night, has some bouts of terrible itching and soreness and his digestive system is disturbed requiring frequent bathroom trips, antacid medication and imodium are helping a little. He is very fatigued, feeling way below par….Please pray that these ‘normal’ but very unpleasant side effects will soon be less bothersome.

Today Sunday Noel’s blood levels were at their lowest, for those who understand this….
Platelets. 9. Normal reading would be 155-410
White cells 0.9 … … …. 3.8-9.2
Red cells. 3.1. … … …. 4.2-5.6

As I understand it a sign of the new stem cells engrafting to Noel’s bone marrow will be when his counts go up without having to get the frequent transfusions.

Our faith stands strong and we have great peace of mind that all will be well….and even though the walk is not easy we realize it is so much easier than many others we meet along the way who have tremendous battles to fight. We are so grateful for all your payers.

We are also grateful for the many , many messages we are receiving. All are a great encouragement to us and every message blesses us.

Both of us are very sorry we can not reply to you all personally….please don’t feel rejected in any way….your messages are important to us and so are you.

Happy Father ‘s day to you all….. I, Meryl am so grateful for my own father who I was blessed to have for the first 38 years of my life and I am blessed to have had a good father for my sons and that they are now good fathers to my grandchildren.