Monthly Archives: June 2012

Transplant Day plus 3

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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.

Transplant Day plus 2

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Day plus +2 discharged from hospital now staying at the American Cancer Society’s Hope Lodge.

The day began early with Meryl leaving the home of her host where she has been staying while Noel has been in the hospital and going to Hope Lodge with her suitcase and collecting a packet of drugs which for some reson had to be shipped there and not to the hospital as the others were. then on tho the hospital. Today was discharge day, so lots of admin to get through, this mornings blood test showed Noel needed a boost of red blood cells so received a unit by transfusion.

A hospital pharmacist spent time with us explaining the 18 pills and potions Noel will be taking. Some once a day some twice and some three times…shake rattle and roll….we have printed out timetable to help us remember when and which…I think this is a good thing.

We also got the schedule for the out patients clinic appointments for blood work and daily shots ( injections) first appointment is at 7:30 am tomorrow Thursday….every day except Friday but for at least the next 12 days after that.

Got and signed the discharge papers and Noel was wheeled in a wheelchair to the car park where we had left our car on June 5th, thankfully the hospital give free parking for inpatients cars as other wise it would have cost $300. Meryl braved the Boston traffic and we drove to Hope Lodge. Where we have a very nice compact sitting room, bedroom and bathroom. We have cupboard, refrigerator and freezer allocated space in the family type dining area and use of one of the 4 fully equipped kitchen areas. Meryl was pleaseed there is a Wednesday and Monday run by the Lodge’s minibus to the local grocery store, where she stocked up on food for the next few days.

Everyone is pleased with how Noel is doing although they warned him he may have some more difficult days to come as it is early days so please keep up the prayers for the new cells to engraft and for there to be no rejection and minimum side effects to all the drugs. We said good by to all the wonderful staff on 6A and promised we would not see them again , not as a patient that is.

Many thanks for all your messages it is very encouraging to us that so many of our friends are taking the time out of their busy lives to read our updates and leave us messages and to pray for us. You are all a huge blessing to us.

Transplant Day plus 1

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Count down to 100.

Of course yesterday was not Noel’s birthday, that’s in April, but it seems to be a tradition among transplant paitents to have a second birthday!

Some mild side effects today but in good solider fashion Noel is on the march forward… right now he is free of his IV pole for a short time and out of his room wearing face mask and gloves walking in the pod, this isolation ward of 10 small rooms is in an air controlled pod, entered through air lock doors. So for the first time for a few days he is up and walking, no doubt be back in his room for a nap quite soon…

Yesterday we had a visit from the dietitian, to explain the guidelines for his nutrition for the next 100 days / one year. A lot of extra care and common sense about keeping everything super clean and free from bacteria and lists of permitted foods and those not permitted and restrictions like no restaurants, no takeout food so it will mean some changes but we will do it. No wine or beer and no spring water. The list is quite long of do’s and don’ts.

We still have to be instructed on all the oral drugs but I think we have decided to make daily visits to the Dana Farber clinic for his shots so I do not have to give him them but that could change and I may have to learn how to do it. I’m OK with flushing his lines but giving shots is out of my comfort zone!

We are looking forward to leaving the hospital and moving tomorrow to the
AstraZeneca Hope Lodge
125 South Huntington Avenue
Jamaica Plain, MA 02130

Although we will have a busy time with clinic visits and I will have to cook all Noel’s food. It will be more relaxing than hospital. The lodge has 40 guest suits for cancer patients and is run by the American Cancer Society.

This week we heard of one friend who lost her battle with cancer and another who received the diagnosis… as you pray for us please remember all those lives that are touched someway by this thing with many faces called cancer.

Yesterday Noel wore his Team Charlotte in honor of our granddaughter and her own battle 3 years ago with cancer. She now still cancer free is a healthy and happy soon to be Kindergarten Kid. Praise the Lord!

Please continue to follow our journey, we have quite a way to goand you are all a great encouragement to us. Please keep praying. Thanks.

Happy (New) Birthday Noel

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Happy (New) Birthday Noel… Noel started to receive his new stem cells at 9:18pm. This evening… nurse is sitting watching to make sure all is well. Noel given lots of anti rejection drugs… the hospital Chaplain came and said a blessing over them… We feel good about it all and believe this is the way God has chosen to bring healing to Noel, we give Him thanks and are grateful for the gift from the donor.

Thank you all for your ongoing prayers, please keep praying and following our journey over the next critical 100 days and year of recovery.

Transplant Day minus 2

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Hospital seems so much quieter than on other days when it has seemed like a major train station or airport, people everywhere and quite hectic. But just as busy here in room 12. Noel getting almost nonstop infusions of 3 chemotherapy drugs along with all the other IV cocktails,pills and potions and fluids, soon he will be walking drug store.

Noel says coming into hospital on June 5th and going through even the somewhat minor surgery to place the Hickman line in his neck and chest, then being admitted to an ICU/ bone marrow transplant ward all felt a bit like being deployed prior to battle, the first day of chemo sessions on the 6th, a type of ‘D’ day for him! A deep day mentally and emotionally.

We have had a visit from one of the interfaith hospital chaplains, a young Jewish woman, in training to be a Rabbi, doing a summer internship. She was a very nice person and we believe, as she sort to encourage us, she herself was encouraged. We have requested a Chaplain to visit us on Monday to bless the donor stem cells before the infussion (transplant) takes place.

Noel is feeling a little under par today, so resting under the quilt I made him… covered with love. Someone asked if there was a story behind the quilt. I have seen the healing power felt in quilt made and given with love so I decided to make him one as a surprise. Why the Pink Panther? It was his nick name during his time in the Army so I thought it would be fun theme.

Today we have enjoyed reading your messages, God bless you and thank you.

Transplant Day minus 3

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Noel now on day three of his intensive chemotherapy, 3 drugs over many hours, lots of fluids, anti nausea drugs, anti biotics, anti rejection so many pills and potions.

Noel is beginning to feel some of the effects of the assault on his body but all in all is still doing OK, resting and following orders, the Doctor on duty just said they are pleased with how things are. We attribute this to all your prayers.

Day seems to have been busy with medical stuff and more information about life after discharge to Hope Lodge next week. That’s when my role as caregiver will kick in! please pray I will begin to feel more confident about this.

Had a good visit from our friends Jim and Jean Morehead and enjoyed reading many messages of encouragement for which we are so grateful but are sorry we cannot reply to everyone.

Transplant Day minus 5

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Noel and his Pink Panther quilt

Noel and his Pink Panther quilt

Yesterday, June 5th, was a long and busy day. Checking in at the hospital which seems as busy as any airport, registration, lots of waiting, Noel getting a Hickman line implanted for his treatments and blood work. Then settling into his isolation room, small but does have window and looks over the tops of very close tall buildings and we can see the blue sky. Before Meryl left for her hosts home she gave Noel a special gift, a quilt she had made him to cover him with love. (when I work out how I, Meryl will post photos).

All the nursing staff are great. The food is OK.

Today, Noel began his isolation ( face mask and gloves for staff and visitors ) he started the chemotherapy and has just finished receiving 2 different drugs plus an anti nausea drug he will get more chemo later this evening. Then again for the next 3 days. Sunday will be a rest day.

We are trying to keep these updates short but if you would like greater detail please e-mail us and we will do our best to reply. Thank you all for your messages and prayers, we have great peace and are full of hope and praying for a successful transplant.