Saturday, November 22, 2014

The Power to Up Lift

Personality has the power to up lift, power to depress, power to curse, and power to bless.
~Paul Harris

Tiffany has a way to brighten peoples lives.  I've seen it many times.  Whether it is with her smile, her service, or her great outlook - she creates happiness with so many people.  Here in the hospital it is still the same.  Her smile and personality continues to put smiles on the doctors and nurses faces, and in turn, it seems like they work harder for her, as they seem to care just a little bit more. Just today one of the nurses suggested that they are excited when it is there turn to take care of Tiffany, in large measure because of her attitude and goodness.  Indeed the feeling she says is mutual.  She loves the staff here at Huntsman.

Her battle with GVHD continues.  And though she is responding to the treatments, the response has slowed down substantially.  The doctors said best case is that she responds and will be out of the hospital in the next 9-10 days.  But they threw caution at us as well, suggesting that was best case, and it was possible to be another 6-8 weeks before she can come home. 

My personality at that news was to first to curse, and then be depressed.  We have been through a lot this year and even though we have had so many wonderful blessings in the form of family, friends, and many miracles, I was looking forward to spending the holidays together as a family.  Starting Thanksgiving we had every Thursday through New Years lined up with something to celebrate.  Our 15th anniversary is a week after Thanksgiving, Day 100 post transplant was on Dec 11th, Emma's 12th birthday is a week later (holy cajole, she is almost 12!!) with Christmas the following week.

So, as the doctors continue to tell us it could take a while, I get the feeling I am going to have to boost her out of this joint!  Any body want to help?

But, you see, Tiffany wasn't cursing.  She continues to tell me it will be alright and lifts my spirits.  She does miss being with the children but is so grateful to the friends and family that take care of them and keep them smiling.  Knowing they are well taken care of takes of any depressed feeling she might have.  She continues to wage war on this cancer and plans to be victorious. 

As a friend noted the other night, we will take this one holiday, event, celebration at a time. 

And then, eventually, we will be home and enjoy time with family.

Cheers,

Nathan

Wednesday, November 19, 2014

Quick Update on Tiffany

Just a quick update on our Tiffany. 

Biopsy results from the colonoscopy came back from docs yesterday.  It did confirm that it is GVHD in her gut and skin and was in a high stage and so recovery time is going to be longer than we expected.  The docs told her to expect to be in the hospital for the next week and a half. 

She is responding to the treatments, however, and aside from not being able to eat (getting fed from intravenous nutrition) until her bowels heal, she is doing rather well.  Her spirits are up, she can get up and walk around, and most of the pain/discomfort she has is not due to this GVHD, but rather just the pain of recovery from the transplant as well as the nerve sheath tumor she has had in her spine for a few years now (benign, in case you didn't read that far back about that issue, but it presses against the nerves and gives her substantial pain in her back and down her legs... something we will likely need to take care of once she recovers fully from the transplant.)

A big thanks to the many people that have helped with meals, taking kids and dogs and so many other things.  We appreciate you more than you can ever know.

Cheers,

Nathan

Sunday, November 16, 2014

Good riddance, be done with you, and never come back again!

I had a post ready to go like a month ago, but I never finished it.

But today, I sit in the hospital room watching Tiffany sleep peacefully, listening to some uplifting MoTab music, and figure I should probably take a moment to write.  Wish I could say I have a good excuse for not posting anything new over the last 45 days or so.  Well, actually, maybe I do have a good reason.

But today I post, to give update to all the masses who wish to know what is going on with Tiffany.  There have been many which have heard a rumor here or there about her and are wondering what is really going on.

Let me start with the kids.  They have been doing marvelously well, with much thanks and gratitude for the many neighborhood friends who take care of the littler ones after school, driving to and from school, and many other little helps that add up to a lot.  However, they are tired of having to take a shower and change clothes every time they come home.  But they do it because they know they are protecting mom.  And then, I need to give thanks to those that have been helping us with laundry.  With the kids changing clothes, sometimes two or three times a day, laundry stacks up quite quickly.  We love and appreciate all those that help.  We wouldn't be doing quite so well without all that help, and we want to express our thanks.   And though I don't call out names (as stated earlier, there are too many people who help and if I started naming names, I would surely, inadvertently, miss somebody and I would feel awful) I do want to thank Tiffany's mom.  She has been with us every week since Tiffany came home.  She has tirelessly served our little family as she puts her life on hold.  There is no amount of words that can convey the feeling of gratitude we have for her, and for the hundreds of others that continue to help and serve me, Tiffany and the children.  Thank you, from the uttermost bottom of my heart.

And now on to Tiffany.

So, up till day 68, we have had a good ride.  No real complications in the post-transplant process.  Every week Tiffany would go see Dr. Boyer and his team and they would always come back suggesting she was far ahead of schedule, that numbers looked ecstatic.  Her platelets and blood counts have been much higher than they have been for the last three years.  She would often be found sleeping late into the morning, and having a few naps here and there throughout the day, a response the body has in trying to recover from the transplant as it produces the new cells and immune system she desperately needs.  As time continued, the docs drew down the medications that were helping her stay propped up, pushing more and more of her own body to create the energy she needed to recover.  She has been weak, and just able to move up and down stairs enough to participate in family gatherings and to be around and interact with the kids. 

As stated previously, she has been taking anti-rejection drugs that allow the donors blood and her own tissues to co-habitate without fighting against each other, a condition which if did happen is called Graft-vs-host-disease (GVHD).  However, as much as we don't want this to happen, we do want it to happen just enough... a process called Graft-vs-Disease effect... a fine line between allowing just enough rejection where the donors cells are allowed to go and kill any remaining cancer cells, but not enough to do damage to other critical organs.

Over the course of time the docs were decreasing the anti-rejection drugs in an effort to instigate this graft-vs-disease effect and we started seeing a skin rash occur in early October.  That was minimized with some steroidal cream and onward we continued until day 63 when the doctor had reduced the anti-rejection drugs to nothing.  That was Thursday, November 6th.  Things were going all right until Tuesday, November 11th when Tiffany started vomiting and having some bowel issues.  A trip with her mom up to Hunstman in the morning caused a bit of a stir as her blood test came back showing a rapid decline in her platelet count, down to 100 from the prior week to a low of 23 we haven't seen since the transplant.  They took some additional tests and told her to watch for bleeding and to plan on coming back on Wednesday to see what else might be happening once the tests came back.  She came home and about 4 in the afternoon, had some heavy bleeding.  She and I went back up to Huntsman that evening and they gave her a platelet transfusion to help stop the bleeding.  She continued to have abdominal pains that night and into Wednesday.  She and her mom went back up to Huntsman and her platelets, even after the transfusion, had dropped some more, and she had another platelet transfusion.  The tests had come back negative for some bacteria and other viruses they were testing for and told her to plan on coming on on Thursday, her normally scheduled weekly visit time, and plan on getting a bone marrow biopsy.  The docs suggested that they were trying to find out why the platelets had dropped so quickly, and the dreaded bone marrow biopsy would help them fill in some blanks.

Well, she came home and ended up in bed.  We called in our Home Teacher to help give her a blessing and shortly after, she spiked a fever of a 102.  A fever of 102 for a post-transplant patient prior to 100 days (and likely after for a while as well) can be dangerous, so we called the doctors and they had us come to the University of Utah emergency room.  We did.  And about 4 in the morning were finally admitted into the Huntsman hospital.

For the next couple of days, they did some tests, and finally concluded they needed to do a colonoscopy to find out if there was inflamation of the GI tract and take a biopsy to confirm if she had GVHD in her gut.

That was Friday evening.  Saturday morning came and the doctors said the biopsy won't be able to tell us the severity of the GVHD, but they are very sure it is GVHD of the gut and started her on a regimen of medications to start fighting back against it.  At the same time she was admitted, she also started getting a rash on her back.  They were going to do a biopsy of it as well, to see if it was GVHD of the skin, but opted not to, as it has spread to most of her back, legs, and itches like the dickens (I really don't know what the dickens itches like, but it must be something crazy).  They are positive it is GVHD of the skin and the drugs they are using to help the gut should help with the skin, so they have decided not to biopsy it.  It is likely this GVHD that is also causing the decrease in the platelets. 

And so we wait, patiently, as we seem to do a lot of over the last few years, as we wait for the fix to happen.  The docs have suggested, depending on the severity, she could be up here at the hospital at least a week, and likely longer.

So I sit here, watching her sleep.  Grateful she can do that.  She really isn't in a lot of pain, well, not the acute painful pain she was feeling prior to coming to the hospital.  Due to the GI issues, she is on a clear liquid diet and getting nutrition via intravenous nutrition (called TPN).  She has the continued normal aches and pains she has been surviving with, and from time to time abdominal pain increases and the itches come and go but we continue onward.  Knowing, or at least hoping with faith, this is a little blip in the road to recovery...

And the silver lining to all this... that this process of pain she is undergoing, is at least doing as much, and hopefully more damage, to any remaining cancer cells that may be lingering.  And we say to such cells,

"Good riddance.  Be done with you.  And never come back again!"

Cheers,

Nathan