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Tue Jan 3, 2012, 11:28 PM

What a roller coast ride this has been ...

my husband was diagnosed with MDS RAEB 2 in May 2010, started one of the prescribed drugs (Dacogen) unfortunately that did not slow the progression to acute myeloid leukemia. He then had induction chemo and a bone marrow transplant from his sister (in reality a stem cell transplant, T cell depleted) in October 2010 and has been doing well. No real GVHD, but complications from a reactivation of the Epstein Barr virus and subsequent treatments with Rituximab for EBV Lymphoma have played havoc with his WBC. We're still waiting for certain levels to return to a level where he can begin to receive the childhood vaccinatons, all wiped out with his immune system prior to transplant and then with the Rituximab.

So we wait and continue to watch the counts. Fingers crossed for the blood tests done today at Sloan, hoping they call in the next day or two for some vaccinations next week

We have several new friends from the time we spent at the ACS Hope Lodge in NYC (required for to be close to to the hospital for 100 days post transplant) what a blessing it was to have that available, and we are thankful we had an insurance policy which allowed treatment from one of the premier cancer centers. We met others who did not have such access

With AML and a bone marrow transplant there is not much time to shop around for the "best" transplant center as time is of the essence, we chose to stay closer to home because that is where we began ... and there was not much time to search for "the best." We spoke with the NIH as well, but as the doc at Fred Hutchinson in Seattle said in a phone consultation, Sloan Kettering is not "chopped liver" and the window of time might trump the medical facility and approach. So you go with the flow and are swept with the tide.

We're looking to sell our home, those out of the pocket annual maximums really hurt, stopped any renovations to get ready for the sale as the doc said that was one of the last things a bone marrow transplant could be around. Fortunately we have a family member that stepped up to the plate to help with financial matters, they live in a country with socialized medicine, and they said the most important thing is to focus on getting better, not medical bills. What a novel concept!

A short intro of where we have been and wishing all those on this roller coaster a good outcome. My Mom had cancer and I've had cancer as well, not a roller coaster that we choose, but we are on this ride together.

A Healthy New Year to All, takes on a whole new meaning when you have been there.

Step by step






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Reply What a roller coast ride this has been ... (Original post)
slipslidingaway Jan 2012 OP
jumptheshadow Jan 2012 #1
slipslidingaway Jan 2012 #3
wordpix Jan 2014 #40
slipslidingaway Jan 2014 #41
cmd Jan 2012 #2
slipslidingaway Jan 2012 #4
tavalon Jul 2012 #16
slipslidingaway Jul 2012 #20
slipslidingaway Jan 2012 #5
tavalon Jul 2012 #18
slipslidingaway Jul 2012 #21
slipslidingaway Jan 2012 #6
slipslidingaway Mar 2012 #7
Irishonly Mar 2012 #8
slipslidingaway Mar 2012 #9
slipslidingaway Apr 2012 #10
Irishonly Apr 2012 #11
slipslidingaway Apr 2012 #12
slipslidingaway Jun 2012 #13
Irishonly Jun 2012 #14
slipslidingaway Jun 2012 #15
tavalon Jul 2012 #17
slipslidingaway Jul 2012 #19
slipslidingaway Aug 2012 #22
slipslidingaway Sep 2012 #23
Irishonly Sep 2012 #24
slipslidingaway Sep 2012 #25
Helen Reddy Sep 2012 #26
slipslidingaway Nov 2012 #28
Tab Sep 2012 #27
slipslidingaway Nov 2012 #29
Irishonly Nov 2012 #30
slipslidingaway Nov 2012 #31
slipslidingaway Apr 2013 #32
slipslidingaway Aug 2013 #33
cate94 Aug 2013 #34
slipslidingaway Aug 2013 #35
slipslidingaway Nov 2013 #36
slipslidingaway Nov 2013 #37
Tab Dec 2013 #38
slipslidingaway Dec 2013 #39
slipslidingaway Sep 5 #42
cate94 Sep 7 #43
slipslidingaway Sep 9 #44

Response to slipslidingaway (Original post)

Wed Jan 4, 2012, 08:14 AM

1. What cool relatives you have

They certainly have the right priorities. Betty88 and I extend you a big hug and a welcome from Brooklyn where we, too, are taking it step by step and one day at a time.

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Response to jumptheshadow (Reply #1)

Wed Jan 4, 2012, 08:18 PM

3. Thanks so much and yes we are lucky to have relatives ...

who are in a position to help and understand that stress does not help the immune system recover!

Big hugs for you both.

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Response to jumptheshadow (Reply #1)

Fri Jan 3, 2014, 05:36 PM

40. thank your relatives for me for showing the meaning of family

I was just diagnosed and my bros. are stepping up to help me financially, too. I've had "issues" with them about doing more for my mother (she has Alzheimer's) but they're rallying around me this time.

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Response to wordpix (Reply #40)

Wed Jan 8, 2014, 12:06 AM

41. Sorry for the late reply, you just never know how people will react ...

to situations, some rally and others fade away. As my sis says it is a true measurement of those who are in your lifeboat and those whose are not. It is not meant to belittle people who do not step forward as sometimes they mean well, they might just be less assertive under different situations. But there are people who take charge under most conditions ... the people you want in 'your life boat.' We are so fortunate to have some people in that category. A friend of my sister's who lost her husband to lymphoma last year while waiting for a transplant said to me tonight 'you have the best sister' ... I could not agree more.

Thanks for acknowledging the unsung heroes, both family and friends, they mean so much on this journey. I'm so happy that your family has stepped up to help you during a difficult time.

All the best to you and everyone on this path, it is not easy, but family and friends make the path less daunting.

Hugs







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Response to slipslidingaway (Original post)

Wed Jan 4, 2012, 08:32 AM

2. A roller coaster it is!

Every day has its highs and lows. Right now I think I am going up, but I may be coming down. I have made so many wonderful friends throughout the ordeal. It's hard to believe, but I actually look forward to seeing them at chemo. The bond between us makes us so much stronger and puts little problems into perspective.

Step by step - I have your hand. I know you have mine. Peace, cmd

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Response to cmd (Reply #2)

Wed Jan 4, 2012, 08:24 PM

4. Yes they do and the new friends are a great support system ...

and do help to put things in perspective as well.

We just need to keep moving and supporting each other.



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Response to slipslidingaway (Reply #4)

Mon Jul 2, 2012, 07:32 AM

16. That is the one and only thing I'm looking forward to

It's so nice to go to gatherings of other families with autistic children - they are relaxed and they get it. I'm guessing we are going to find the same thing in this situation. Though, I wonder, do people group up according to their diagnoses?

I'm guessing I'm about to find out. That's another thing I wonder. Will I be able to be with him while he gets chemo?

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Response to tavalon (Reply #16)

Thu Jul 5, 2012, 04:05 PM

20. Sorry as I missed your other replies until now ...

"Though, I wonder, do people group up according to their diagnoses?"

For the most part I would say no, it really depends more on the person and how talkative they are about their disease, treatment and also the set up where one is receiving treatment (private treatment rooms or one large room, inpatient vs. outpatient) Almost all of my husband's chemo was inpatient so not too many other patients were nearby.

When we moved over to Hope Lodge and lived there for 100 days we hardly ever spoke of treatment once the basics of "why are you here" were established. In general we just tried to be supportive of one another and pass the time between visits to the hospital. Conversation drifted to current events, where to buy what, who is making what for dinner etc.

"I'm guessing I'm about to find out. That's another thing I wonder. Will I be able to be with him while he gets chemo?"

I would think you'll be able to stay with him, never heard of anyone being told to leave the room, wishing you the best during this challenging time.



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Response to slipslidingaway (Original post)

Tue Jan 10, 2012, 12:33 AM

5. We could all use a bit of humor, if only just a bit ...

Last edited Tue Jan 10, 2012, 07:36 PM - Edit history (1)

and this clip of Gene Wilder only has a small clip.

Gene Wilder Talks about Non-Hodgkins Lymphoma


What made me think of this tonight was speaking with someone in the local infusion suite today (hubby had an IVIG treatment, first locally) who was diagnosed with NHL and then remembering the pictures of Gene Wilder on the transplant floor of Sloan Kettering at an annual stem cell transplant celebration ... we went this year Have to be over a year post transplant to be invited!

No word yet on revaccinations, CD4 went down slightly last week but at least there was a CD19 count, both needed for revaccinations. Hopefully they'll test again soon, just have to get past this cold our college age son brought home for the holidays, but today's hemo level hit a new high post transplant and the WBC did not go down from last week. Very happy about this, but would like to see a reversal of trend!

Celebrate the good news when you can, feeling better today than late last week, best to all on this bumpy, bumpy road








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Response to slipslidingaway (Reply #5)

Mon Jul 2, 2012, 07:49 AM

18. In a just world ruled by me, the benevolent dictator,

a person like Gene Wilder would be exempt from cancer after Gilda. Clearly, I don't rule the world and I can't say I'm altogether happy about that. I think this would be called the anger stage of grief. Or the uber control fantasy part of it.

I printed out the Living Will and Durable Power of Attorney for Washington tonight. I can't believe this is happening.

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Response to tavalon (Reply #18)

Thu Jul 5, 2012, 04:10 PM

21. Sorry this is happening ...

just hoping you have a good insurance policy, people having to fight their insurance companies for tests their docs want is just an insult when they are already struggling. Try and stay determined, nobody can expect anyone to be positive all the time, one foot in front of the other

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Response to slipslidingaway (Original post)

Thu Jan 26, 2012, 12:05 AM

6. Well those numbers did not work out as we had hoped ...

for vaccinations and in the meantime a nasty cold, brought home from our college age son over the holidays, and then something urologic that they are still investigating. The second antibiotic seems to be working, but still more tests to be done.
Some bumps for the New Year and hopefully that will be it! Looking forward to a better 2012 and to resume a more normal life - guess we're stuck with the jigsaw puzzles and avoiding crowded areas for the next month or so.

Wishing better days ahead for all



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Response to slipslidingaway (Original post)

Tue Mar 20, 2012, 10:27 PM

7. The second antibiotic seemed to do the trick...

for the urology issue, guess there is not always a direct relationship to the primary concern of the moment.

Since the second antibiotic his WBC has increased without the help of Neupogen or Neulasta, so we are very happy. Of course there is always the next bone marrow biopsy and blood test and then waiting to hear the current numbers, for now all is well.

Wishing everyone on this forum the best in the journey ahead.





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Response to slipslidingaway (Reply #7)

Thu Mar 29, 2012, 09:46 PM

8. Any news?

You husband has been through some awful stuff. I hope he is doing better.

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Response to Irishonly (Reply #8)

Thu Mar 29, 2012, 10:26 PM

9. Thanks :) 18 month bone marrow biopsy on Monday so a little nervous ....

maybe some skin graft vs. host developing, then again a little is not so bad as it helps keeps the leukemia cells in check ... or so they say. Guess his sister's immune system and his better learn to get along

Funny thing, when he had the cystoscopy for the urology problem and I asked how it went, he said he would rather have a BMB. Having watched all his BMB's and having had cystocopy's myself I think he is crazy, then again he did not see that tool they use for BMB! Also he has been lucky to have experienced doctors doing the BMB's.

So fingers crossed for next week!

Seems all cancer survivors are always waiting on the next test and then the next result. But we all try and move forward with the "new normal."

Sorry to hear that the appointment with the surgeon was postponed, but glad to hear you are feeling a little better, a visit surely will do that!

Thanks for asking









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Response to Irishonly (Reply #8)

Mon Apr 2, 2012, 10:15 PM

10. CBC numbers were good today ...

all in the normal range

Now we wait for the results of the bone marrow biopsy, there is always the next test and results. Will see a dermatologist at the cancer center for the rash, but it is staying in the same area, as the transplant doc said it would be an odd presentation of skin GVHD because the rash is staying in the same area.

Fingers crossed



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Response to slipslidingaway (Reply #10)

Mon Apr 2, 2012, 10:28 PM

11. Great news about CBC numbers

We join you in thinking positive thoughts about your biopsy plus keeping fingers and toes crossed.

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Response to Irishonly (Reply #11)

Mon Apr 2, 2012, 11:02 PM

12. Much appreciated ...

and we all can use some positive thoughts

To go from a hemoglobin in the mid 6 range when diagnosed to a new high just over 14 today was pretty nice, of course we try and temper our excitement. That roller coaster can, and has been, hell. As they say with this disease, truth is in the marrow ... we'll see.

Hope all is well in your world, especially with a visit from your daughter.



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Response to slipslidingaway (Original post)

Fri Jun 22, 2012, 01:38 AM

13. A short update ...

round one of immunizations in May, round two of immunizations this past week, third round scheduled for July, then a 6-12 month wait and testing to see the reaction.

These are all the vaccinations we had as kids, then again my husband is still under two years old and the literature they give you speaks of "your newborn, child, infant."

So we're moving forward and we'll see what the future holds.

Best to all on their journey

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Response to slipslidingaway (Reply #13)

Fri Jun 22, 2012, 10:13 AM

14. Must be trippy to read the literature

I hope the future hold many good things for you and your husband.

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Response to Irishonly (Reply #14)

Sun Jun 24, 2012, 01:10 AM

15. Yes it was ...

and thanks so much, wishing the same for you and your family as well

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Response to slipslidingaway (Reply #13)

Mon Jul 2, 2012, 07:42 AM

17. Wow, so with stem cell transplant,

his childhood vaccines are null and void? Woah.

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Response to tavalon (Reply #17)

Tue Jul 3, 2012, 02:07 PM

19. Yes, in some ways he is less than two ...

sorry that you had to check in on this group, wishing you and your family the best.

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Response to slipslidingaway (Original post)

Sat Aug 11, 2012, 01:30 AM

22. Round three ...

of the dead vaccines done, still need to look at the live vaccinations. Seems they give info as needed as you move along and the vaccination process is about two years from beginning to end ... spring 2014!

The monthly Pentamidine treatments have ended, just barely made the minimum CD4 count last month, and happily that can be checked off the list as another milestone.

We're still very careful about many things and we'll see what the bone marrow biopsy shows at the two year mark in October.

One foot in front of the other and best wishes to all on their journey.






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Response to slipslidingaway (Original post)

Mon Sep 10, 2012, 01:38 AM

23. 23 months ...

and blood counts are normal. Looking forward, with some (or shall I say some major) apprehension to the 2 year bone marrow biopsy on 10/1 ... truth is always in the BMB. If all looks good then this is the last bone marrow biopsy and they'll just monitor blood counts going forward and only do a BMB if counts drop, so some excitement and some apprehension.

That being said Sloan has their annual bone marrow celebration on 10/16 and we plan to meet with friends from Hope Lodge for dinner before attending the celebration.

Step by step ... and best wishes to all on their journey.





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Response to slipslidingaway (Reply #23)

Tue Sep 11, 2012, 10:44 AM

24. Cheering for normal blood counts

How soon will you know after the biospy? I hope your roller coaster ride is soon over.

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Response to Irishonly (Reply #24)

Wed Sep 12, 2012, 01:50 AM

25. Thanks :) ...

all results take 2-3 weeks after the bone marrow biopsy, but some preliminary results take a few days. As for the roller coaster, as it is for so many people, it will never be over ... it just becomes less bumpy. Stats are about 50% survival at 5 years, hoping to be on the right side of that 50% And maybe not be bankrupt, just a side effect of our HC system
Still very happy to have treatments options available that others do not, we are very fortunate. I'll be curious to hear whether Robin Roberts has a T cell depleted transplant or not, she'll be at the same hospital with the same transplant team, I'm glad her story has highlighted blood cancers and wish her well.

Hope you are doing OK as is everyone else on this forum, it is a tough road.

Hugs

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Response to slipslidingaway (Original post)

Fri Sep 14, 2012, 12:10 PM

26. Hoping the best

 

for you and your family

Yes, taking it step by step. Sage advice for us all.

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Response to Helen Reddy (Reply #26)

Thu Nov 8, 2012, 11:53 PM

28. Thank you ...

hope you and your loved one are doing OK

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Response to slipslidingaway (Original post)

Thu Sep 20, 2012, 05:43 PM

27. Best wishes to you and your husband

I know what my wife goes through (I'm the patient). It's not easy, but your support of your husband can make all the world of difference to him.

Here's hoping good thoughts!

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Response to Tab (Reply #27)

Fri Nov 9, 2012, 12:06 AM

29. Good thoughts are always welcome ...

and the two year bone marrow biopsy looks good and we are very much relieved.

I'll try and remember your words of wisdom when there is something minor we disagree upon, at this point most almost everything else is minor!



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Response to slipslidingaway (Reply #29)

Fri Nov 9, 2012, 12:44 AM

30. Good for the bone marrow results

Cancer has a way of changing how you look at life. I always tried to teach my daughter to choose her battles carefully. Cancer sure teaches you what is important.

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Response to Irishonly (Reply #30)

Fri Nov 16, 2012, 11:07 PM

31. Thanks and you are so right about cancer changing our outlook ...

on what is important.



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Response to slipslidingaway (Original post)

Mon Apr 29, 2013, 10:38 PM

32. A little virus can surely wreak havoc ...

on someone with a compromised immune system, metapneumovirus, never heard of it before, but we are all used to googling the latest issue.
All in all things are going fairly well, the IGG level could be higher and could have something to do with the slow reaction to fight off next "little thing."
Step by step and happy for each day that we have



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Response to slipslidingaway (Original post)

Fri Aug 16, 2013, 09:34 PM

33. First flights ...

it is so easy to remember all the negatives and things we take for granted, but I wanted to share some positive news.
My husband flew to Canada in June on a business trip and then we flew to the Virgin Islands in July to celebrate a milestone birthday for a family member. We've been back for a week and no illness from the trip, knock wood, and so happy for things we always took for granted. Airplanes can be germ invested places for someone whose immune system is not what it used to be.

Thinking of everyone here who is still battling the challenges of this disease




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Response to slipslidingaway (Reply #33)

Tue Aug 27, 2013, 02:03 PM

34. Happy to hear it!

I'm glad those trips didn't cause any problems.

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Response to cate94 (Reply #34)

Tue Aug 27, 2013, 11:08 PM

35. Thank you ...

we do cherish the small steps back into the real world

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Response to slipslidingaway (Original post)

Sat Nov 16, 2013, 01:15 AM

36. We attended our third annual transplant celebration in October ...

for survivors. It was so nice to see the name tags, transplant 2001, 9 years etc. The oldest survivor was from the mid 1980's and the newest and most recognized was Robin Roberts, although she she was not one of the speakers. All in all it was a great night with dinner beforehand with friends from Hope Lodge.
No doubt we've had our bumps in the road, but all in all in all we are very pleased to celebrating another year!
We did finally sell our home, these plus or minus $10,000. annual out of pocket maximums do take a toll ... approaching year five. Very happy to have had the providers we needed with insurance, but there is another financial level that complicates matters on top of the medical issues.
Wishing everyone well, one step at a time.






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Response to slipslidingaway (Original post)

Wed Nov 27, 2013, 12:04 AM

37. Hoping ...

for a long future. We saw the transplant doc yesterday, all of his counts are in the normal range and she does not need to see him until his 4th anniversary, which is October 2014. They tested his response to the vaccinations, if all goes well with the results, he will just need to be followed by his local hem onc and internist during the next year.

Step by step



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Response to slipslidingaway (Original post)

Mon Dec 2, 2013, 05:24 PM

38. Keep with it

All the best to you

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Response to Tab (Reply #38)

Mon Dec 2, 2013, 09:12 PM

39. Will do and thank you Tab ...

how are you doing?

Wish we could just wave a wand or wiggle our noses to make things right

To say it is balancing act going through treatment is a significant understatement. Most people, including my husband, have participated in several trials. It is difficult to know when to say yes and when to say no, and we do not always have the luxury of time to make that decision.

Thankfully medicine continues to advance each year and we need to take that into account and thank all those who have taken a chance ... while not getting too crazy with the latest meds.

Let us know how you are doing and thanks again

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Response to slipslidingaway (Original post)

Fri Sep 5, 2014, 12:58 AM

42. A bit nervous, but that always happens when something out of the norm ...

comes into play.

My sister, who lives in the UK, arranged for a flight to visit them and then have a holiday in a resort town in Turkey to celebrate a birthday. After a wedding this weekend my husband has come down with a cold, all other colds (or something) have lasted several weeks.

When you pass a certain milestone after transplant the doc says that each adventure has to be weighed as a risk versus reward scenario and you have to make that decision yourself.

It is not always easy to make these decisions .... hate going into this trip with a compromised immune system.

All that being said, I am happy to have to such a dilemma and a wonderful sister... still nervous and we'll see if we make the flight.

Fingers crossed!








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Response to slipslidingaway (Reply #42)

Sun Sep 7, 2014, 08:51 PM

43. A hard decision I am sure.

That sister of yours really is wonderful!

I can't imagine having to try and make this decision but I hope you are able to go. Travelling is good for the soul and healing in its' own right.
I'm crossing my fingers for you!

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Response to cate94 (Reply #43)

Tue Sep 9, 2014, 10:35 PM

44. Thanks cate94 ...

it appears that he has fought off this latest cold in record time, so for now we plan on going. This will be a healing trip and we plan to leave the stress behind

I wish everyone had this 'difficult' decision to make and I feel bad even mentioning it. On one hand it is the life post transplant with a compromised immune system, on the other hand we are so fortunate to have had access to good care and a wonderful support system.

My sister and BIL are fantastic, we would not be as far along in this journey without them!

Thanks so much for your well wishes!



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