Transplant Day plus 44

Our four days back in Glens Falls seemed to fly by quickly. Noel felt basically the same health wise. Which is good with not much change either way. So we count this as a blessing.

More blessings came in the mail….more get well cards and good wishes to encourage us which they do and also in the form of support. Thank you for your generous gifts to help us at this time…we praise the Lord for this being his provision for us..

Sunday was the final day of the Tour de France… Very exciting… Made even more so because of the brilliant achievement to the British riders, first Brit to win in the history of the race… Then Noel also enjoyed watching the British Open Golf….Since Noel’s transplant he has been very fatigued and we seem to have watched a lot of sport on the TV. Something we have not normally done in the past…another blessing no time to be bored during this change in life style from our previously very busy lives.

We also had short visits with our granddaughters Charlotte and Lucy on Saturday and Monday always a blessing. They are so much fun to be with. We interacted with our grandchildren Eve and Will in England via Skype. It is not quite like seeing them in person but always fun and a blessing.

We came back to Boston yesterday. The rain held off till we arrived in Boston… Yet another blessing as interstate driving is horrible in the rain.

We are blessed to have a room at the Hope Lodge… It feels like home now..although quite a few of our new friends have gone home…. More blessings…new faces and people to get to know.

We arived at the Dana Farber Cancer Institute at 9:15 am….after check in Noel had his blood drawn for testing..that was on the 2nd floor….then up to the 8th floor to wait to see the doctor. This week we saw Amy, Dr Soiffer’s NP. She is so nice and well up to speed with everything. Noel’s counts today were all still low and he did need to have an infusion of 2 units of red blood cells. His red cells are a bit slow at returning and are lower again.. But this is not unusual in these still early post transplant days so nothing to be concerned about. Another blessing as we choose to see having blood as a positive thing not a negative one.

This weeks numbers,
WBC 2.6. Last week 2.8. Normal are 3.8 – 9.2
RBC. 2.75. — 3.08 — — 4.2 – 5.6
Platelets 47. — 37. These are steadily creeping up. But normal is over 155 so quite a way to go……

Because Noel gets bouts of shuddering chills as well as feeling cold most of the time, Amy decided to be on the safe side and have blood cultures done to make sure there is no sign of infections..unlikely but she wants to be sure.. No results yet.

The 2 units of red cells took four hours to be infused as the drip goes very slowly. We did not leave the hospital until 5:30pm having been there for 8 hours today…..sitting reading, napping, looking at our iPads…is not difficult but very tiring. But one blessing was we did get the free lunch provided in the infusion center.

We were glad to return to Hope Lodge…..where we know the blessing of a comfy bed awaits us this evening….

We return next Wednesday for more appointments….but as yet there does not seem to be a room at Hope Lodge so we may have to stay at the Hampton Inn again…but are blessed we can at least get the reduced room rate for Dana Faber patients.

Two things I talked about in last weeks up date did not happen. Because of Noel’s continuing low counts he did not have his Hickman line removed, it looks like he will now keep it for a few more weeks.

We did not manage to start our early morning walks but may be this week we will have greater motivation and energy.

So the slow journey continues a day at a time with blessings to count every day. Thank you for walking with us, for your prayers, your cards, calls and gifts are a great encouragement to us and a blessing. Thank you.

We are focusing on what is positive in our lives not on anything negative and even though we do not know what the future holds we do know who holds the future…..please continue continue to pray for:

  • Noel’s counts to go up.
  • Better energy levels, should be good after the 2 units of red cells today.
  • For no adverse reactions to any medications.
  • For safety as we travel.
  • For the Lord’s continuing provision for us.
  • And give thanks for answered prayers and many blessing.

We keep you all in our prayers, God bless you.

Transplant Day plus 37

It’s amazing how fast time is going after getting back to Glens Falls last Thursday the 4 days at home have flown by… we once again thank you for the snail mail you have sent… both of us appreciate your good wishes and kind thoughts, your phone calls and the messages you leave here on this site. We enjoyed a visit from our friends Dave and Barbara on Sunday, sharing the reserved Sacrement with them and catching up on news from St Mary ‘s Lake Luzerne.

We are counting the many blessings everyday brings in different ways small and big to encourage us and remind us that the Lord is in the detail too. On Friday the family were coming over for a short visit ( Noel has to wear his face mask but short vists are OK ) so that we could celerbrate Charlotte’s birthday, she was 5 on the day before… because Noel would not be able to share a store bought cake, I was making a cake but wanted a little Strawberry Shortcake decoration for the top to go with the candles… I asked the lady who decorates the cakes at our local supermarket if I could buy one… she said no but I could have one put on any of their cakes. So I explained why I was not going to buy a cake… She said she was sorry and I went my way… moments later when I was buying eggs she came to me with a small package and said, “We don’t do this but I am a grandma and I hope your granddaughter has a happy birthday and your husband does real well very soon…” There and then in the super market I cried at her kindness… I hope some one blessed her as she blessed me that day… So Charlotte was thrilled to have her decorated cake and Noel enjoyed a big slice… Charlotte was also thrilled with the Strawberry Shortcake dress up outfit we gave her… even with the dress I made in a hurry on Friday morning when I realized the one I had ordered from Amazon was the wrong size… another blessing… I was taught to sew when I was young and like to sew.

Her hair party on Saturday was so much fun too… Seeing 5 little girls getting their hair done like Princesses was very special.

Noel had felt tired and suffered bouts of being chilled over the weekend, when the rest of us were trying to keep cool he was trying to keep warm. But on the whole he has continued to feel good… taken things easy and rested when he has needed too. We both want to get back into doing some walking but have felt a lack of motivation but hope to begin some early morning walks around the small lake at a local park this next week.

Yesterday we drove back here to Boston, grateful for the AC in the car as the outside temperature was in the high 90’s… this week we were unable to get over night accommodation at the American Cancer Society’s Hope Lodge but are blessed to have been able to stay at a Hampton Inn here in Boston at a reduced rate for Dana Farber patients. It is a comfortable room but of course no kitchen or microwave so as Noel can not eat in restaurants he has been on a diet of sandwiches… Next week we know we have a room at Hope Lodge and use of the kitchen, so that ‘s is another blessing.

Today we took the free shuttle bus from the hotel to DFCI , another blessing for Noel’s appointments… after his blood work we saw Dr. Soiffer again… he is not unpleased with Noel ‘s progress but his blood levels are not rising very quickly, not a great cause of concern at this early stage but as Dr. Soiffer said today “we are not out of the woods yet”…

today’s numbers, slightly lower than last week, were:
White Blood Cells 2.8 last week 2.9, normal 3.8 – 9.2
Red Blood Cells 3.08 last week 3.25, normal 4.2 – 5.6
Platelets 37 last week 42, normal 155 – 410

Dr. Soiffer did not order any infusions of blood products today, another blessing and even said that after next weeks appointment Noel can have his Hickman Line taken out… which is normal after a few weeks of it being in place. Noel will be very pleased to get rid of it although it will mean every time he needs blood work done and that will be often, he will need to get it taken with a needle from a vein in his arm.

One of the blood tests measures the toxicity levels in the kidneys which can cause damage if not corrected. Today Noel’s levels were elevated so Dr. Soiffer has reduced the amount of one of the anti-rejection drugs Noel is taking for the prevention of HVG, Host verses Graft disease and asked him to up his intake of water to around 3 liters a day to keep the kidneys well flushed.

Today Noel’s spleen had again reduced in size, a blessing, last week it was 6, today 3. Soon be tucked back under the ribs and not felt at all!

Noel has appointments for next Wednesday so we will do the same as this week, travel to Boston on Tuesday and home on Thursday.

Please continue to pray:

  • For Noel’s blood levels to rise
  • For his Kidney levels to return to normal
  • For his digestion system to return to normal
  • For there to be no adverse effects from reducing the anti rejection drug
  • For no signs of infections or HVG disease
  • For his energy levels to increase
  • For a better night time sleep pattern
  • For safety as we travel
  • And for provision each month to cover the medical bills.

Thank you for continuing to walk this road with us… Your encouragement is a huge blessing to us to… we pray that you all will find you can count your blessings everyday day, as we are doing, however small or big and we hold you up in our prayers as we know so many others are facing various health problems and difficulties in their own lives…

Faith is essential it makes all the difference as we weather the perilous and uncontrollable storms in our lives. Our faith in Jesus is a blessing.

God Bless you!

Transplant day plus 30

Since being back home Noel has felt somewhat lacking in energy and cold almost all the time… and this is a hot summer… but everyday his other side effects are less than they were… although sleeping not great he is doing remarkably well. My skill at flushing the 2 lines on his Hickman with saline and the anit blood clotting drug have increased with the daily practice. And I even changed the dressing once but was glad they did that at the hospital today.

Back tracking to Monday, Noel had an appointment with Dr GG at the CR Wood Cancer Center in Glens Falls… as she waw very interested to see him and catch up with how he is doing. Although she had received the reports of the transplant from the Dana Farber. She was pleased to see Noel and she remains his secondary Doctor.

Tuesday we drove back here to Boston where we had managed to book into the Hope Lodge for the night and then a hotel for Wednesday night. We were welcomed back like long lost friends and it was good to see some of the people we had met again, new faces too. This moring I asked if there was a room free for tonight as things can change daily with people leaving. Yes , thank you Lord, we could stay another night, so I rang and cancelled the hotel. What a blessing this amazing place is.

Today, Noel’s appointment was just after Lunch. We arrived early at the DFCI as we had to get our parking ticket validated… and hand back the swipe card from when Noel was an inpatient. Thankfully we still qualify for Free parking. Another blessing as not all patients do.

All these small blesses add up as we are now receiving many copayment accounts… Noel has had a lot of appointments in the past month and a lot of tests and blood products.

Today’s visit with Dr Soiffer went well, he is not only a very bright Doctor but is a very nice man, talk ranged from football. tennis, cricket, Noel’s blood work and his spleen… His bloodwork is still good enough not to have needed any products today, no red cells or platelets needed… Although his counts are still low compared to the normal reference range today’s numbers were:

RBC red cells 3.25 up from 3.14 last week
WBC white cells 2.9. Actually down from last weeks 4.4
Platelets 42 up from last week at 35

Dr Soiffer says Noel’s spleen which was so very large before the transplant measuring 13 finger widths (real hands on measuring) has shrunk to 6. We look forward to the day when he can not measure it. normal spleens sit under the lowest rib and can not be felt during a hands on examination.

He also discribed Noel in one word today ‘GOOD’ he is pleased with the progress, he says he only goes day by day as he knows full well the twists and turns the recovery time from a stem cell transplant can take… he can not predict anything as things can still go wrong. There are many days ahead for Noel yet… But every good day is a day closer to his return to good health. SO we give thanks and praise to be good at this stage one month past the transplant and pray it will continue this way.

We have to return next week for more blood work and Dr appointment so will again travel to and from Boston on Tuesday and Thursday… appointment on Wednesday. Please pray for accomodation needs… We are on the wait list for a room here at the Hope Lodge… And please pray for Noel to continue to be ‘GOOD’ his energy to increase so he feels more able to catch up on emails and snail mail. Thank you for the many cards he has received.

Tomorrow is Charlotte’s 5th birthday… we give thanks for her and she herself now being cancer free… a survivor! Friday night family party and cake and Saturday morning a Hair Party for her girlfriends at local Hair Salon… she has asked me, Granny, to also be her guest because she says I am a girl but Poppa can not be there because he is a boy! But she did suggest to him she could maybe get him some new hair, so sweet… I am excited my first hair party…

Thanks everyone for following our journey… Hope you will continue to do so and one good day turns into another good day… God Bless YOU!!!

Transplant Day plus 26

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.

Update to last entry…

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……

Transplant day plus 23

Happy July 4th, 2012Happy 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.

Some random thoughts

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!

Transplant Day plus 21

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

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.