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eaglei

Urgent Prayer Request for DS

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Sending continued hugs & good wishes for all of you. :-)

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July 1, 2014

Another quick update on borrowed computer time to thank you for your continued prayers and for the messages you've sent.  We appreciate both so very much - and need your prayer support and encouragement.

In the time since my last update, ds had the second round of chemo. Because he was doing so well, he had four days of chemo and was released! As expected, his CBC’s fell quite low and about a week or so 
later, he had to have a transfusion of two units of blood and one of platelets. It left him feeling quite ill for quite awhile - possibly a reaction to the transfusion, or possibly a virus. The fatigue that also dogged him is finally beginning to dissipate. He has spent the time working outdoors as much as possible (probably moreso).

Last month we heard from the transplant hospital that they had located stem cells, which necessitated another trip for another mandated consultation. In brief, the doctor told us that there are over twenty 
million people registered in the donor register. The very easiest person to match is a white male. They were totally unable to match ds. In the doctor’s words, he has “very unique DNAâ€. Therefore, they had 
to search for an umbilical cord stem cell match. Cord cell matches do not require that as many markers be the same as the donor match requires. Cord cells require locating four matches as two comprise one 
set for using, and the other set for back-up. The cells they plan to use are from the United States and Italy; the reserve set is from Spain and Australia.

There are pros and cons, but overall, umbilical cord stem cells are considered much better, as they are unimprinted cells. With a donor match, the likelihood of host versus graft disease is much higher, 
while infection is a bit lower. With cord cells, the possibility of host versus graft disease decreases substantially, while the likelihood of infection rises. To that end, the patient is kept on anti-bacterial, anti-viral, and anti-fungal medications for at least six months, maybe longer. With either type of donor, there are many restrictions for a year. This of course can vary either way, patient-to-patient.

Statistics put survival following a donor transplant at 40-50%, and with use of cord cells at 30-40%. However, these statistics include everyone - including those who enter transplant with other concurrent medical issues. For a young, otherwise healthy man who has remained in remission for lengthy times, the survival rate increases.

We were all a bit discouraged following that meeting, but have since learned that the particular doctor we saw tends to give the worst case scenarios (and frankly doesn’t have a very good bedside manner). Ds 
was back in the throes of wondering whether he wanted to proceed. Having spoken with a friend recently whose husband underwent transplant at the same facility, and learning some specifics from her, we all feel a bit relieved.

Next up are two days of testing this month, a week apart. At some point following, ds will be admitted to begin the process.

I have omitted most of the detail - it is too overwhelming. We would appreciate if you would remember us all, and especially ds, in your prayers. This is very difficult in many ways for all of us. However, we continue to hold on to the only One Who has all power.

- - - - - - -

I wasn’t going to add any more to this update, but since this is basically an anonymous listing, I thought I’d go ahead and ask for your prayers for us financially. We are no longer about to drown - we ARE drowned.

Dh lost one of his jobs when the health care bill went into affect, and he lost half of his other job for the same reason. Right now he is not working at all. When he is working, he gets nine months of work with 
six or eight pay checks that come in a weird fashion. For example, he works two months before he gets any pay; then he gets paid a total of four times over three months - which means we go for several months each year with no pay from that particular job. The pay isn’t any better than what I make (and the two of us together didn’t earn enough to meet all the need since we are still paying on the first two times of cancer), so there isn’t any extra to put aside. The job he lost entirely was year-round and paid twice a month but at least we could eke by with the necessities. He has been unable to locate any other work so far. (We have no savings left, nor any retirement, nor any thing else we can use. Medical bills really do eat it all up very fast).

Additionally, when the transplant begins, he will have to stay with ds 24/7. It’s the rule. No 24/7 caregiver, no transplant. I only work parttime, but I get paid every two weeks. I have been unable to locate 
further work, but have been praying up a storm, not just over this, but also that my current employer would put me on full time. (It’s a budget issue and health care issue with them also). My boss gives me 
extra hours when he can and has said he would like to put me on full time if not for the budget/health plan issues. Since my paydays come regularly, it is dh who will have to go with ds, which means he will 
have no employment until either January or August (with the current employer and because of the way the contracts run). His last check came at May’s end and with work, his next wouldn’t come till the end of October, so it is imperative that I keep working and that he go with ds. (We also feel he is the better one to simply be there for several reasons I’m too tired to type out).

I am leaving out a lot of detail - I’m just too weary to write it all, and I am scared, too, as we are currently two months behind on the bills and I am frantic with trying to figure SOMETHING out that will help us. So I would really appreciate if you would pray not just for ds’ health and the success of this transplant (which is the MOST important), but also for us financially. I know God is able to meet this huge need (to Him it isn’t huge at all but to us it is enormous), but His timing sure isn’t ours - if it were, we wouldn’t be behind on the bills. Frankly, even though I see His hand in ds’ health situation, I am struggling with my faith in the financial arena. I would really appreciate your prayers. THANK YOU.

I am still without a computer so I may not answer any comments or questions you may pose in a timely fashion. I am posting this from work after hours (with my boss’ permission).

 

I will delete this last part when I next come into work, so please don't quote it . . . thank you!

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Glad you updated us on what's going on. I have an adult child who is several months post-transplant so I understand much of the stress that you're dealing with. The 24/7 caregiver is absolutely necessary, especially during those first three weeks, and then again after discharge to home or a nearby place to stay. Even now there are still caregiving needs, although not 24/7.

 

Hopefully you've met with a hospital social worker and they've addressed financial concerns. The hospital we dealt with is very good about writing off what insurance doesn't pay for transplant patients.

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Praying that all goes smoothly with your ds and praying for provision for all of your needs. I'm so sorry you have that headache on top of the health concerns. 

 

When my sister had her transplant, she had rotating caregivers. It is true that she needed someone with her 24/7, but it was sometimes her dh, sometimes a friend, most family members took a turn. I think it was nice for her and also nice for the rest of us to get some quality time with her and feel like we were doing something to help.

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Thank you for posting the update. Still praying for your son, and will also pray for financial help for your family.

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Thank you for your update.  I will certainly hold your son and your family close in prayer. Praying for strength and provision in all areas you mentioned.

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I am so hoping for strength and healing for your son and stamina and financial ease for all of you.  :grouphug:

 

I truly hope the transplant unit did not seriously say your ds needed the SAME caregiver 24-7 through transplant.  I used to volunteer in a transplant unit and family was recommended to take respite by family life regularly.  I urge all of you to take care of yourselves too and allow others to help you however they can.  I know not dozens of people can serve as an advocate and caregiver in the hospital, but having a few people able to "trained" to handle that role might be a good idea even if your DH is the primary caregiver.

 

So many well wishes coming at you.  :grouphug:
 

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Went thru my two brothers' transplants--it is a hard and scary time, but also a hopeful one. Just wanted to give you lots of hugs and prayers.

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So many thoughts and prayers continue to go out to you from many of us here.

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Just letting everyone know who checks in here that we have established an "Eaglei Fund." Anyone who wants to donate, please PM Liz CA.

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Dear Hive Members,

I want to thank you all for your prayers and for the financial help you so kindly offered earlier this month. Our hearts were deeply touched with your generosity, and with your selfless desire to help. What a blessing you have been! I stand in awe at your wonderful kindness to us.

This has been a busy week with more traveling for more mandated medical meetings and tests. Our heads are swimming with all that there is to consider. I will try to do a more appropriate update before long.

I am on a work computer, so must keep this short. My family and I just wanted to be sure you knew how thankful and appreciative we are to you. Our prayer is that God would mightily bless each of you and your families.

Sincerely,
eaglei

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:grouphug:  It's good to hear from you - and may everything go well with the meetings and tests.   :grouphug:

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Just a quick update; I am on borrowed computer time.

 

The two days of meetings and testing went well, but were overwhelming.

 

 

All the test results came back very good, which means ds is in the best possible position for transplant - the “only†thing wrong is the leukemia. None of his major organs (heart, lungs, etc.) show any damage from all the previous chemo and radiation.

 

 

The information in the meetings was overwhelming. We met with the head doctor and learned many more nitty-gritty details - and it is going to be VERY hard on everyone, but especially on ds.  Encouraging news from this doctor (as opposed to the last one we saw) is that he put survivability at 60-80% and higher (the 80%-plus being for patients from households of faith).

 

 

Ds signed the paperwork, but said he reserved the right to change his mind; said, with the new info, he needed time to think about it, pray about it, and talk with pastor. The doctor was actually good with this and commended him for not rushing this major decision. Ds needs to be “all there†and they would rather he be sure now, than to have doubts later.

 

 

Since the paperwork wasn’t yet complete (on their end), that gave ds more time to study and pray on it. He has not reached a final decision, but appears to be leaning towards it. (His conversation, for example, will begin with, "When I'm in the hospital ..." - or - "Mom, have you thought about such-and-such during the time dad and I are gone ..." - or - "If thus-and-such happens while I'm away ..." - or - "I need to take care of this now since I won't be here for ..." - etc.)  However, he has some additional questions, based on info this doctor provided and also has a slightly modified time line that he wants to present to the doctor.

 

 

Dh and I actually think ds’ time line is preferable - it “feels†more right. Just not sure how the doctor will take it.

 

In the meantime, ds continues to live and do and be, and to do things the doctors say he shouldn’t be able to do - like chopping down trees with an ax, or working up wood both with a chainsaw and an ax, and a myriad of other activities (mostly outdoors). He seems to be trying to put a lot of living into each day . . . as if he's storing it up for later when so many things won't be allowed . . .   It is God’s grace and mercy that is keeping him. Now, ds needs peace over the stem cell transplant overall, and God’s continued intervention as well as guidance.

 

 

As far as jobs/finances go, there have been no changes, except that another month is now upon us.

 

 

I don’t know if I am so much “holding onto†as I am “clinging to - grasping onto†the only One Who has all the answers.

 

 

My apologies for the delay in getting this update posted. Please know that your prayers and good thoughts are MUCH appreciated, and that there are times when we/I can feel them holding us up and helping us to carry on. 

 

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