Since getting home last Tuesday we both seem to have been very tired but have also managed to watch some good tennis from Wimbledon….

Noel besides feeling tired has felt cold all the time…. Even with the temperature in the house set to 75’F he is wearing his fleece jacket.

Today he has not felt so great and has been trying to sleep in bed… Not sure how much rest he is getting a there is a block party out side with a loud live band….been going since midday….Although a lot better than it was he still has problems with his digestive system…

A good friend from St Mary ‘s just popped round to bring the check from the fund raising concert that Alan held for us… playing and singing his folk songs… what an amazing gift… $2,150… This is such a generous gift and “Thank You” seems to small a response. We feel very loved. PTL.

Can you guess how much the 9 days spent in the hospital cost?

We got notification of it yesterday… $193,720… praise the Lord our insurance copayment is very much less than that figure! But we stil have many months of outpatients visits and drugs to face yet… Yesterday I picked up 6 refills at CVS of the long list of drugs he has… Those 6 cost a copayment of $1,286.99 and that did not include the most expensive drug he is taking… But we have to trust the Lord has a plan to see us through this next year of medical bills… And we do trust him…

So day plus 26 means we are 25% of the way to day plus 100, at the moment a number of the drugs Noel takes are to help prevent the rejection of the donors cells. After the 100 days the doctors hope to gradually reduce those drugs and although what is known as graft versus host GVH disease can happen at any stage… It then becomes more critical after the anti rejection drugs are reduced. We of course pray this will not happen. Although they say it can even happen after a number of years down the road… Noel will be always living in what is called the new normal.

Our snail mail bought cards with well wishes and we are grateful for thoses and your continuing messages here on this site and Facebook… everyone of your messages is an encouragement to us on this journey.

Our spirits stay high and our emotions stable, my only hic up was when I found our neighbor had cut off all the lower branches from the tree that our breakfast rooms looks over… It’s our tree and those branches were not over hanging the property line… So I have no idea why he did it… we had agreed that he could cut back the higher branches that hung over his property. I loved looking out on the leaves and watching the birds… so I cried… but I guess it was only a tree… May be I will plant another one.

We know the Lord has been watching over us during this time in the small and big important details. Please keep us in your prayers… Thank you.

On Monday we have a visit to see Noel’s hematologist at the Glens Falls C R Wood Cancer Center… She is interested to find out how things went. Then on Tuesday we drive back to Boston. For appointments at the DFCI on Wednesday… PTL we are able to stay Tuesday night at Hope Lodge… Although they have a minimum 3 night stay they will if you have stayed there before and they have a free room let you stay just one or 2 nights…. but we still hope to be able to get the discounted hotel price as Hope Lodge may not be available every week.

We hope you all had a good 4th of July holiday and are enjoying a good summer… and keeping cool… or dry according to your location.

God bless you.

Andy Murray did win the quarter final he fought and won a hard game…. Well done GBR! Sorry Spain…….

We have had second thoughts on Noel going to the concert… Best to stay with in the hospital guide likes about not being in crowds…. with his compromised immune system why take chances……

Happy 4th of July…..happy birthday America…..

We had a safe trip home yesterday, thanks for your prayers,’

Today we are both tired and taking it easy watching the tennis from Wimbledon, England on the TV. Andy Murray the Brit fighting to win but I think Spain has the better player…. Will Spain win both the soccer and the tennis this year?

About Noel’s silly question….it was a joke!, he was not serious. Men don’t need wigs, he just thought it would be funny to ask the question to see what styles folk would think up for him….. He is absolutely fine with his new look..ans so am I. We are not grieving his hair, pretty sure it will return anyway and not worried if it does not! No need for knitted hats or other coverings he has plenty of base ball caps for when he is outside……

So we will settle back ino life in the new normal ., going through the past months snail mail, thank you for your cards sent this way. Eating healthy although Noel cannot have any salads or raw fruit and veggies…other restrictions but we will work around them sadly no soft serve ice cream at Charlottes’s favorite ice cream shop.

One thing we have to remember to do each day is to flush the two access ports on Noel’s Hichman line…. One flush with saline , one flush with Heparin to prevent clotting in the line used for infusions. It is not difficult but as this line goes in to the large vein in his neck and directly to his heart it is a little disconcerting I find.but soon I will be an expert!

Noel has to remember to take all his many, many medications.

Our next weekly appointment at the Dana Farber Cancer Insitiute is Wednesday 11th July next week….too exhausting to drive there and back in the day so this week I will be trying to find us some ‘affordable’ overnight accommodation near the hospital.

This being Independance Day we hope to go to our local park this evening to listen to the concert and watch the fire works with our family…..Noel is restricted from going to places where there are a lot of people! Meetings, Church. Shops etc but we think as it is an outside event and he wears his face mask it will be OK….Looks like a fine warm evening.

Happy Independance Day… God bles America, God bless all of you.

Penned by Noel – the first time I’ve felt like writing in over three weeks!

The Boston Dome. Some fun feedback is in order! Someone suggested I should get a wig in an Afro style, with dreadlocks! What do you think? Or white-ish, to reflect the senior citizen time of life I seem to somehow arrived at. Or a ginger one? Ginger was the color of my youth and middle years. Short or long hair? Flat, straight or wavy? Would a wig make me look and feel more elegant, distinguished, good-looking, intelligent? Or not? What say you?

Prayers, visits, support, encouragement, love. I am overwhelmed by all the TLC shown me over the last month. The hugest thanks must go to my special caregiver and angel, Meryl. But also to everyone else who has read these pages, added comments, sent emails, made phone calls (thankfully we have not been overwhelmed by these); thanks to the huge numbers of people praying for us; to the several who have donated through these pages; to the wonderful medical and ancillary folk who have looked after me so well in the hospital and the cancer clinic; to those who visited me either at the hospital or at Hope Lodge; especially to the donor, who made the transplant possible in the first place – a marvelous gift of self sacrifice! THANK YOU, including anyone I have missed thanking.

British Army reductions. It seems the UK government is to announce a large reduction in the British Army this Thursday. The Army will be at its smallest size since the Napoleonic Wars about 200 years ago. I won’t make any comment about this except today it seems very likely that the infantry regiment, whose badges I wore for nearly 30 years, will be disbanded, having had a name change about 5 or 6 years ago. A sad day, if the news is confirmed.

Meryl and I have been praying for and greatly distressed by the sad news of two friends who have died whilst we have been in Boston, even though they are now at peace and no longer suffering, being united with Christ in glory. We have also been distressed by the news of several friends who have either had to leave their homes or be packed ready to evacuate at a moments notice. We do not know if any of them lost their homes to these terrible wildfires in Colorado Springs. They are still not yet fully under control. Finally we have also been prayerfully concerned about those who are affected by the powerful storms and heat over much of the mid-west and east of the USA, let alone the storms in UK over the last couple of weeks.

But, regardless, God is good – all the time!

And I’m so pleased to be going home tomorrow!

Thank you, one and all!

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.

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.

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.