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!
It’s official we leave for home tomorrow…..PTL
At the clinic today Noel’s counts were stable enough for him to go home! Although no where near normal.
Red cells 3.14 last Monday 3.09
White cells 4.4 last Monday 2.5
Platelets. 35 last Monday. 12
Returning for a Review Wednesday 11th July. We were given the choice of Monday or Wednesday so decided on Wednesdays. It wil be the first of many Wednesdays in Boston……still a long way to go yet.
PTL the protocol of the Dana Farber Cancer Institute is to allow those who live a reasonable distance way to go home at this stage unlike the other large hospital here in Boston, Mass General who require their Stem Cell transplant patients to stay in Boston for the 100 days post transplant , I think Noel would have gone crazy to have to stay here for another 79 days but we have met people who are doing just that.
We are unable to stay less than 3 nights at the Hope Lodge so I am waiting for a call back from the social worker at the Dana Farber who helps with housing. I hope she will be able to get us a one night stay each week at a local hotel at reduced rates. Item for prayer please.
The many perscription drugs Noel is taking are begining to need to be refilled….so we talked to the pharmasist today to have the orders transferred to a local CVS….he told us to call ahead before Noel needed them as some would be special orders…he quoted one of the anti rejection drugs he is on….which is not available in a generic form. These drugs have very expensive co-pays some of them cost over 4 figures a month… This is also an item for prayer that the Lord will provide the where with all for us to afford so many expensive drugs for an extended time and for us to still meet all our normal out goings each month.
It was a quiet weekend at Hope Lodge with many people going away for the weekend…others visiting OPP SAIL and the tall ships in Boston Harbor. I would have loved to have visited them but Noel can not be where there are crowds of people, the newspaper reported thousands went. But we did have visitors… A friend from CMF Christian Military Fellowship who was in Boston with his wife for a friends birthday party, took the time to stop in to see us… Thank you Greg and a local Anglican Priest Micheal Bickford, who also visited us last week, was great to see you again. And on Sunday afternoon Jim and Jeam Morehead came to see us again….always good to see them.
So our time at Hope Lodge has been blessed…. Although it has been the time when Noel was at his lowest health wise since the Transplant he is now so very much better and even in those horrible times the blessings have been many….most of all for me, Meryl as I have had great interaction with other care givers and some patients and actually enjoyed my stay here.
Tomorrow is an early start as we (me ! ) have to wash all the bed linen etc and clean the sitting room, bedroom and bath room which have been our home for the past 3 weeks….. The Lodge relies a lot on residents to do the housekeeping and a certain amount on volunteers along with a skeleton of paid staff…this is an amazing place to have been able to stay at. If you have ever wondered what the American Cancer Society does…. Here is just one tiny example. PTL.
Please keep following our journey, reading up dates here or on face book, call us or email us or if local visit us in small numbers but please ‘phone first.
518 824 5863 for our home number.
Please pray for safe travel for us tomorrow as we drive home to Glens Falls….
For easy readjustment to normal but abnormal home life…with restrictions
For Noel ‘s donor cells to engraft well and for them to make healthy new
cells.
For Noel to remember this is early days and not to try and run before he can walk….very hard for an A personality.
Thank you again for walking this walk with us..
God Bless You all.
The Boston Dome!
Noel is now sporting his new hair style, the Boston Dome! 🙂
Remember that this site – www.supportnoel.org – is available for financial Gift’s of Love to Noel and Meryl, or you can follow updates on Facebook at www.facebook.com/supportnoel/
A day of praise…..
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.
Drugs!
DFCI Boston Red Sox Hat
More New Blood!
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.
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”