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.

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.

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.

Day plus +3. Just now day 100 seems so far away…

The day began early as Noel’s clinic appointment was at 7:30am….valet parking is a wonderful thing..to our surprise when Noel checked in he had 4 appointments this morning…so we actually spent over four and a half hours there, not what we were expecting. Blood work, an IV infussion of one of the drugs he needs, a discussion and review the the PA and getting the shot of neurogen to boost white blood cell production….this shot and he needs one each day, costs over $1,000 a time if you don’t have insurance …with it’s just a couple of hundred!! Say it quick and it just sounds like pocket change…………….

Today, as to be expected and ‘normal’ Noel is very weary, has some physical reactions to the transplant and all the drugs..so I am glad he is taking a good long nap….sleep I believe is all part of the healing process.

We thought from the printed schedule tomorrow was a day off from the clinic but no. We do have appointments, bloodwork and shots so it will be every day but to vary the timetable not always at the same time.

Weather in Boston is warm and sunny after all the rain yesterday. Sadly Noel has to coverup and wear a high factor sun cream he never did enjoy being in the sunshine but now has to avoid it…

Impossible to comment on everyone’s posts. But to answer the question why no spring water to drink ? but tap water is Ok…spring water is pure but not treated with any chemicals to kill any bacteria as is tap water…you and I have enough anti bodies in our immune system to cope but Noel no longer has a functioning immune system .hence all the rules and regulations about his food and life style.

Also a couple of people have quoted my favorite verse….Isaiah 40 :31
……they will renew their strength……run and not be weary…..walk and not faint…….this a great verse of encouragement to us…. Noel wants to run again with Charlotte and Lucy. Who love to run……..and he will.

So progress is slow and infact it is quite normal for the graph to have dips down before it reaches back up to normal…..we still have a long way to go.

Thanks Sarge..we love you! God bless and protect you all…..XX.