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.



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.



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!"



Wednesday, October 1, 2014

Open Letter to Mike and Anna Wangemann (and the rest of the neighborhood)

September 30, 2014
Mike and Anna,

You silly fools!

You asked me if there was anything you could help me with and I said no.  You continued to ask, as good friends do to help.  You have helped us out (and continue to help) with family home evening lessons and activities.  But yet you continued to ask.  As time to transplant came closer, all the various trips to and from the hospital, all the dealings with IV's and drugs and everything with Tiffany, with school starting, and heavy work issues, I admitted that it would be a huge stress reliever for some help to get the house ready and finally relented, asking if you would come in and help me replace some floors while Tiff was in the hospital.  Tiffany needed to come home to a clean house, and with carpets as old and worn as they were, we needed to replace them and get the vents cleaned, with the idea that we would clean the rest of the house and that would be good enough.
Well, it wasn’t good enough, apparently.  You had other plans while we were at the hospital!

I have tried to list everything that you (and the literal legions of people that worked along side you) did for us, and the list continues to get longer each new day as I notice something else that has changed, better organized, cleaned, fixed, etc, etc, etc.

Though I know you know what you did… let me list what I KNOW has been done, so you can see what you accomplished in just over two weeks’ time.

  • Painting of bathroom cabinetry
  • Replacement of master bathroom countertop
  • Awesome brand new master bathroom sink
  • Brand new faucets (in both bathrooms)
  • Brand new shut off valves (like, everywhere).
  • New toilets in the bathroom (master bath has a extended height toilet and kids bathroom has a lighted lid for help at night)
  • New king size bed and headboard (understand people from Logan made this happen)
  • New sheets, pillows, blankets for new bed. (and this too)
  • New dresser to match headboard (and this as well)
  • New fan light in master bedroom
  • Organization of closet/dresser
  • Removal of stair banisters and replacement custom built banisters (And I mean awesome custom)
  • Wall addition in family room to create an office room - allowing kids to watch TV or do homework in the area while I work.
  • Repairing foundation wall crack
  • Duct work into office.
  • Re-wiring of light fixtures into office and in family room
  • Custom shelving in office
  • Flooring in office
  • Mold and dust cleaning
  • Fresh paint in Bathrooms, Office, Master Bedroom and other areas
  • Adding an additional cabinet (thanks to mom and dad)
  • Painting of kitchen cabinetry
  • Adding hardware on the kitchen cabinetry
  • Adding can lights in the kitchen
  • Replacement of the range oven - with a nice flat top cook area finished in black and stainless steel 
  • Replacing our little microwave with a microwave range top
  • New stainless steel sink, with amazing faucet hardware.
  • Removal of our old swamp cooler vent and controls
  • Removal of creeks in the upstairs hallway
  • Adding a HEPA filter on to HVAC system
  • HVAC system (including duct work) cleaning
  • New entertainment center and coffee table in TV room
  • Re-finishing of my Great-Grandmothers dresser (now being used by Emma)
  • Refinishing of our desk/hutch, re-purposed for an awesome setup in the TV room.
  • New lamps in the master bedroom and TV room
  • New side tables for the master bedroom and TV room
  • Various new wall decoration/ornaments throughout the house
  • Changing of all brass light fixtures, door knobs, and hinges to a polished nickel, including new chandeliers in the front entryway and over the kitchen table.
  • Additional shelving in our storage room (thanks mom and dad)
  • New light switch in our storage room (thanks mom and dad)
  • Cleaning out my garage
  • Taking old items to DI/garbage
  • A deep/steam cleaning of the whole house just prior to Tiffany’s return

And on and on and on (just found out that the Afgan was crocheted by the wonderful hands of Sister Darrington - wow).  My fear is I have just left something off.  I know I have.

And then there are the stories from EVERYBODY who I come in contact with.  I can’t go out in the neighborhood/church without somebody telling me of coming and helping.  I know that you didn’t do it all.  I know that there were people with experience and expertise that helped.  It constantly amazes me the sheer number of people who helped with the project.  My parents, who had the wonderful opportunity (ha, not sure they would call it that ;) ) to live through the craze, suggested it was just a constant buzz of new people coming and going and doing so many things.  Everyone that shares the stories with me share it with a smile on their face.  They share of the joy they had doing it and the fun being able to talk and work next to others in the neighborhood. 

And when all is said and done, not only was the place amazing, but it was clean.  Cleaner than any other option we considered.  In fact, as Tiffany and I discussed what to do after the hospital stay, we wondered if it might be better to stay somewhere in Huntsman related housing, partly due to cleanliness, but mostly due to distance.  But there was no other place that would have been more prepared for Tiffany to stay.

You asked me what my favorite room was.  And to this day, I am in awe of each room you guys fixed up.  Seriously, when I enter our bedroom, even a week later, I just go in and think – wow, this is nice!  It's bright, beautiful and the feel is just amazing.  Then I go to the master bath and think the same thing.  When I sat in the kitchen cooking dinner today, I thought, wow – this place shouldn’t belong to me – this is too nice.  I then walk downstairs into my new office and think to myself – “I have an office!”.  Of course, to get to it, I have to walk in the downstairs family room and there is now a sense of awe as I look at what you did with that space.  

No, there are no favorites.  All we all feel is a sense of humility everywhere we go.  I don’t know how to get that across to anybody the depth of gratitude we have for what you have accomplished.  Our home will never again be “our home” but rather, the “neighborhood-home,-built-with-love,-and-we-get-to-stay-in-it” home.  We are indeed indebted to you, and though you will always say we don’t owe you, which I understand, please understand our side of this, that we look forward to finding a way to properly thank you and the neighborhood. As you come in contact those that helped, would you give them a heart felt thank you for us?  We would be most grateful.

We came home that Saturday and Tiffany’s eyes were welled up with tears as we ‘toured’ our new home.  She feels just as deeply of gratitude and humility that I feel.  We will ever be grateful for it.

Thank you.

From the bottom of our hearts, we thank you.

The day after we came home, was the day the Ogden temple was re-dedicated.  That temple had received a makeover of enormous proportions.  It is now more beautiful than ever.  We felt the same way about our home.  So we opted to hold a very special family home evening the next night and in similar fashion, re-dedicated our home.  As such, it will always be a place for people to come and feel the spirit.  We think anything less will be a stain on what you have done.

Thank you, to you and everyone, for all you do in making our little neighborhood a little piece of heaven.  No, strike that.  A large piece of heaven. 

With much love and appreciation,

Nathan and Tiffany

PS - to you and everybody else, thank you for filling up our freezer with meals.  It is full to the brim - this really assists me many nights when I am working till late and can get a meal on at a decent time.
Oh - also - a big thanks goes out to the people who have continued to weed and mow our place.  I know you had an 11 year old scout group come and mow one night.  Dallin deeply appreciated that!

Before - Front Room
After - Front Room

After - Front Room
Before - Front Room
After - Front Room

After - Front Entry

Before - Dining area
After - Dining Area
Before - Kitchen
After - Kitchen
After - Kitchen
Before - Basement Family Room

After - Basement Family Room

Before - Basement with office Alcove
After - Basement TV room with built out office

New Office!
Before - Bathroom
After - Master Bathroom
Before - Master Bedroom
After - Master Bedroom (with model)
After - Master Bedroom (with model)
After - Going down to TV room from Kitchen

After - Detail work of the banisters

Wednesday, September 17, 2014

Engraftment Day

The sores came, the hair has been lost.  Days 6-10 were awful.  On more than one occasion, Tiffany suggested that there is no way she would do this again.  To which we both noted, we won't have to.  This will work.  It has to.  And it feels like it will.  Just a peace.  And really, a similar peace we have had for a long time, so I can 't really say it is different, just that either we will get what we want or something better.

Starting on day 3 after the transplant she started to feel pretty blah.  She has a hard time describing it, but it was just a feeling of blah.  And then shortly after that the mouth sores came.  For as long as she could, she tried to eat, but eventually she went to an intravenous food having a hard time eating or swallowing.
Sunday's Turkey Dinner, with cranberry sauce, mixed vegetables, mashed potatoes and turkey gravy.  On Monday it was a hamburger and fries.  Tuesday morning, this was her biscuits and gravy!
Tiffany's IV pole.  And this was a good day! ;)

Somewhere around day 8-9 was the worst.  She felt awful, and those were the emotional hard days when she suggested she couldn't handle this ever again.  But throughout the process, she pushed herself hard to get up out of bed, got on the stationary bike, and went for walks through the BMT floor.  Nurses were always surprised that she was up during some of those days and so was I.  There were times where she just sat down, but even then she sat up much of the time rather than laid down.

On day 11 we saw the first uptick in her ANC (Absolute Nutrifil Count - infection fighting white cells).  It came in at about 120.  And she started to feel better.  Day 12 and counts went up to 370 and she was feeling so much better.  Day 13 and today her counts came in at 707 - well above the 500 needed to be considered engrafted.  So today is now considered Engraftment Day!  She needs to stay above the 500 ANC over the next couple of days to be considered fully engrafted (and based on how she is doing, doctors and nurses don't expect any trouble).  She is eating better and although appetite isn't the best nor can she taste everything the same, she is starting to eat and she is slowly getting off all the IV drugs she was receiving.  She has not had any complications and Dr. Boyer suggested yesterday that she could be ready to go home by Friday - Day 15!  That is amazing!  We were told to be ready to be in the hospital for 4-5 weeks.  Day 15 will be 1 day past 3 weeks.  So we are coming home a full week earlier than we were expecting. 

But therein proves to be a small problem. 

I won't go into detail now, but our home won't be ready for her to come home (Tiffany reads this, and there is a big surprise waiting for her - so details can't come yet - but rest assured - it will).  Suffice it to say that there has been a neighborhood project going on, and they are hoping to be finished by Saturday, allowing her to come home to a clean home.

We shall see what happens, but we are so excited that she has come back so fast!

A big thanks to family.  Tiffany's family have been helping me keep her company, helping her in the hospital (and trust me, it's not a vacation - thank you).  Also a big thanks to my parents who have come out to stay with our children.  Not an easy thing to do for 3 weeks, especially with school having just started, kids crazy schedules, and a TON of things going on at the house, they have truly been troopers through the process.

Also, thanks for all the prayers - they are indeed the reason for such a quick recovery.



Saturday, September 6, 2014

T + 2

T +2 - Saturday September 6th

Special delivery happened on Saturday.

Tiffany's platelet count dropped to a 5.  Nothing unexpected and not really new, perhaps as low as she has ever been, but without any bone marrow creating them, we will expect for them to drop again and again until engraftment of the donated stem cells.  We were informed early this morning that we would be getting them soon. 

As of 2  in the afternoon we hadn't received them yet. 

Apparently there was an issue with a machine that takes the platelets through some tests.  So, for whatever reason, Tiffany is getting a special delivery of platelets from.... Colorado!  They are flying them in special just for her.  Most other patients with higher levels of platelets (but low enough to need a transfusion) are going to have to wait for the issues with the machine to work again.  But Tiffany's platelets are so low that she needs them ASAP. 

Just another day in the journey through this life.



Thursday, September 4, 2014

Day Zero - Tiffany's New Alternative Birthday - Transplant!

'Today you are you!  That is truer than true!  There is no one alive who is you-er than you!"
Dr. Seuss

Well, Dr. Seuss,  you are wrong.  Today Tiffany is one part Tiffany, and one part a young German female.

She received her TRANSPLANT!  WE MADE IT!  Yes, the journey continues, but there was a point just over a month ago that today was in serious jeopardy - so today we celebrate.

You will see in the above picture, Tiffany holding up the line of stem cells and you can see the expression on her face - one full of emotion telling us that indeed, she made it!  (The blanket to the side is a gift from the nurses they brought in as they sang 'Happy Birthday'.  See below.)

As I explained in the last post, we expected this part of the transplant to be kind of anticlimactic.  Merely a blood transfusion.  Not so.

Oh, it wasn't way different in so many ways.  But the fact of what it was and what it would do for Tiffany was amazing!  And then, on top of that, you could actually see the stem cells move through the tubing!  It was mesmerizing.  We sat there almost the full hour and a half it was being transfused into her and watched it go through the tube.  At one point, with her dad on the phone - Tiffany started naming some of them and was telling them where they were assigned, "Your name is Bob, you go to my femur.  Jillian, head to my hips.  George, ..."

We got a cool video of it going in - check this out... (I uploaded it as HD - but it just isn't looking as good as it does on the original - so if you are ever near me when I have the Ipad - let me show you - you can see the individual cells going in - it's so cool!)

We are indeed grateful.  Yes, Tiffany is starting to feel awful, just plain yucky.  But today, we celebrate, for thanks to a wonderful German young woman, Tiffany has life back in her.

And so our 100 days begins.  100 days is not a magical number.  Things could go very well and be out of the critical stage early, or there could possibly a few complications and be a little bit late.  But December 11th is our target.  We will make it.

And we will then celebrate whomever Tiffany is made up of now.



Allogeneic Stem Cell Transplant and FAQ's

It's not everyday that you get some lifesaving procedure done.  Well, unless you are Tiffany.  Simply receiving platelets and red blood cells are indeed life saving.  Without them, well, I think that speaks for itself... You need them.  And that is all I will say to that.

But it isn't everyday that you receive a transplant.  And in Tiffany's case, a bone marrow transplant. 

This post today will likely be informative, but also likely technical.  I continue to be asked about the process, side effects, timeline, etc, that Tiffany will be going through so this post is simply to share what I know and understand.  That, by the way, is crucial for you, the reader, to know.  I find that although I have become well versed in all things bone marrow transplant, it was just the other day that a misconception I had was cleared up.  So forgive me if  I have to come back later and update the post with better information as I better understand it.  I am not a doctor or nurse (though, I have to admit, I am getting quite the training on all things medical over the past years and more so the last few weeks).

What is a bone marrow transplant?
There are various forms of transplants.  Those with cancer of the blood, such as Leukemia, will have a bone marrow transplant as a possible option to them, and in general, is used as a last/final option of treatment to rid themselves of the cancer.  Usually, as in Tiffany's case, the doctors will try other treatments first, in hopes to rid the body of cancer without having to go down the path of transplant.  Although the transplant process has become more and more commonplace AND successful, it is still a rough road to go down - and expensive.  Depending on the type of cancer one has, there are various forms of treatments that can be tried, and with hope, to rid oneself of cancer. 

In Tiffany's case, there is a cancer growing within her bone marrow where some of her white T cells are able to multiply and in turn, kill off platelets and red blood cells.  The effect is two fold... they multiply in the bone marrow which can then cut production of normal cells as there is no space left, but what cells she has left are being killed by these white cells.  This is the cause of why she continuously needs platelet and red blood transfusions.  Some people have asked if her body is making these normal cells, and yes it is, but limited in ability and not fast enough to replace the ones that are killed with the cancer or that die through the normal, natural cell aging process.

Last year, Tiffany took a low dose chemo tablet everyday.  At the time, the hope and understanding of her cancer was that a small dose of chemo would push the cancer back, but not get rid of it completely (or I should say - we were hoping it would, but that was not the idea).  It would push it back for a while, hopefully for many years, before it would come back enough to have to do the low dose chemo and push it back again.  This didn't work the way we were hoping, to say the least.

The transplant purpose is to fix entirely the issues she is having.  That is the hope.  There are two types of bone marrow transplants.  The first is an autologus transplant, in which your own cells are harvested and then once everything is killed off, is re-introduced to your body.  Tiffany, however, will be receiving an Allogeneic transplant, a transplant from a donor.  The idea being that replacing her bone marrow with that of a donors is two fold: 1 - by getting rid of her own 'cancer tainted' bone marrow, we hope that it will no longer be created as the donor's stem cells will create healthy cells, and 2 - the new donors stem cells will create white blood cells that will seek out the cancer cells remaining within Tiffany, find them, and kill them!

What is the process?

After finding a donor (matched through DNA typing), the transplant date is scheduled.  For Tiffany, this was originally August 27th, but was subsequently changed to September 4th.  Seven days prior to the actual transplant date (T-7 [read T minus 7]) Tiffany goes in to the hospital to start the pre-transplant process.  This process varies by degrees depending on the nature of the disease.  It was determined in Tiffany's case to take one of the strongest treatments possible to get her as ready as possible for transplant.  This started on the morning of August 28th.  Each day for four days (T-7 to T-4) Tiffany would receive what they call a Total Body Irradiation (TBI) where they would give her a radiation treatment that covers her whole body that would last about 20-30 minutes two times every day.  That process itself can cause upset stomach, but the side effects come over time.  The idea behind the radiation is mainly to try to kill off any cancer cells in her body.  After four days of two-a-day treatments, the fifth day (T-3) is a chemo blast, where they give her a high dose of chemo.  The chemo has a two fold purpose.  First, it too is to try to kill off the cancer cells, but also, it kills off the bone marrow in Tiffany, making room for the new stem cells that will be introduced later in the process.  On days 6 and 7 (T-2 and T-1), she gets a rest from treatment as the chemo takes effect. 

As cells in your body are being killed off, especially your immune system, many things start to happen to your body, and you start to feel just awful.  A large part of this is in your GI tract.  For the first few days after the treatment, Tiffany has felt just about fine, but as time continues, there are more and more issues related the digestive system.  It will likely get to a point of pain that for a time she will no longer be able to eat, and will be fed via intravenous fluids/calories.  This will happen until such time that her immune system (white blood cells) start coming back.  She will also lose her hair again (which has been growing back quite nicely since the first time it fell out - almost needed  haircut!)

So on Transplant day (T-0) her body has rid itself of the dead cells and room has been made for the new cells to be introduced. 

Up to this point, the donor, which all we know is an international donor, starting about the same time Tiffany went into the hospital (T-7) started receiving a daily shot for five days (T-7 to T-3).  This shot tells the donors body to pull stem cells out of the bone marrow and into the blood stream.  Over the course of 5 treatments, the donor then goes into the donation center and for about 4-5 hours each day for two days (T-2 and T-1) (could be one day if enough cells were received on the first day) and their blood gets drawn, put through a centrifuge, the donation center draws off the stem cells, and then puts the rest of the blood back into the donor.  The process has been described similar to that of a plasma draw, for those that are familiar with that.  The side effects to the donor are minimal, but they can feel symptoms similar to a flu but not lasting longer than the week long process.  The donor may be weakened slightly, but within a week post donation, their body has already recreated the donated stem cells and their life should be back to normal.  It should be noted that the donor prior to this process has gone through a rigorous screening process, with tests, tests, and more tests, to confirm one, that they indeed are a match to Tiffany, and two, that there aren't any diseases in it that will make the transplant worthless. 

Once stem cell collection has happened, the stem cells will be packaged and hand delivered to the transplant team here at the Huntsman, often via overnight flights.

Starting about 3 days prior to transplant (T-3) Tiffany started receiving transplant anti-rejection drugs.  As with any transplant, there is a possibility of rejection, no matter what preparations and precautions the doctors take.  Some of the anti rejection drugs may be something Tiffany takes for the rest of her life, though most should go away sometime down the road as her body conforms to the new immune system introduced.

So, with Tiffany prepped, and with stem cells in hand, the donation can then happen.  On day T-0 - the doctors and nurses bring in the bag of stem cells, which looks similar to a bag of blood, and they connect it up to her central line and start the process.  In essence, all the transplant process is, is simply a blood transfusion.  Almost kind of anticlimactic.  Just like other blood transfusions, it will take a couple of hours for it to be transfused into Tiffany, and then, like that, the transplant is done.  Well, at least what the doctors do.  The rest is up to Tiffany's body.

From this point forward the stem cells in her body will, over the next week or two, find it's place within the bone marrow.  Once there, they will set up shop and start to create red blood, platelets, and white blood cells, and in so doing creating a new immune system.  This process is called grafting in.  Once the stem cells graft and start to create the white blood cells, Tiffany should start to slowly feel better.  During this time, the doctors watch out for what they call Graft vs. Host disease (GVHD).  GVHD is caused as the donors white cells now in Tiffany, recognize Tiffany's tissue as 'foreign' and attack it.  Symptoms of this can be shown in the liver, skin rashes, GI tract, and of course other places as well.  While GVHD can be very bad, it also has a good, effective use as well.  As there is likely residual cancer cells in Tiffany, the new immune system causing GVHD can have a similar effect on the cancer cells and in turn, fights against them and aids in the killing of those cells and helps put Tiffany back into remission.  So while the doctors will do what they can to decrease the symptoms associated with GVHD, they do keep a balance of having just enough to help fight the disease that may be left within Tiffany.

There are two types of GVHD, Acute and Chronic.  The acute GVHD will normally happen within the first 100 days of transplant and can be very dangerous.  Hence the first 100 days of recovery Tiffany will be visiting the doctor quite frequently.  The chronic GVHD while it still can be dangerous, will be treated while Tiffany continues to heal, become stronger, and live an active, full life.

As stated above, the first 100 days are critical, not just for GVHD, but also as Tiffany continues to gain strength and as her immune system continues to come back.  From Day 0 till around Day 28, Tiffany will remain in the hospital as her immune system comes back.  Until then, she will be monitored often for fevers, pains, etc.  Any bacteria or virus at this stage could prove a huge setback and even fatal, hence the precaution of the hospital stay.  She will stay there until her white count comes back to a specific level, whether that is day 28, day 20 or day 45.  Once it is at the level deemed safe for her to go home, she will head home.  But at that point, she will only be good enough to go home.  Our home will need to be free of germs, bacteria, mold, dust, or otherwise.  We are working on replacing carpets and floors (thanks to amazing friends in the neighborhood) and kids coming home from school - a germ infested place, will have to change their clothes and take a quick shower.  Visitors will be kept to a minimum (and please don't feel slighted if we ask you to stay away for a while - just trying to keep Tiffany safe).  She will need 24 hour care that first 100 days.  Somebody will have to be with her at all times, watching for fevers or help as needed.  Also, during these first 100 days we will have to watch her diet.  Any food she eats will have to be specially prepared to ensure that there are no microbials which could cause problems with her compromised immune system.  After the first 100 days, assuming all looks to be where it should be, she will be allowed more freedom of food, freedom of visitors, etc.  However, as I look at the calendar, 100 days will be December 11th, in the midst of flu season, so I can assure you precautions will likely go well past 100 days.

She will continue to get a little stronger everyday.  By 180 days (6 months) from transplant, she will still be recovering, but should start to get back into some semblance of normal life.  The hope is that sometime between 6 months and 1 year she should get back to 'normal' life.  Each transplant patient will be different, but we are going to do everything in our power to get back to normal as soon as we can and rely on our Father in Heaven to help where we cannot.

Other questions we get asked

Why don't you get the donor information?  Wouldn't you want to reach out to them?

Yes, we look forward to thanking the donor one day, and hope to be able to do just that.  However, the method of finding out donor information, as well as the donor finding out recipient, is for safety and concern.  Some of the issues of why we don't know find out before or after transplant are:

Black mail - I guess there have been cases in the past where the donor and recipient knew of each other prior to transplant and the donor blackmailed the recipient.
Health issues related to the donor - if something happened to the donor due to complications of the donation, there would be reasons to not share information.  Also, if there are health issues in the recipient related to the donation, there are also reasons why information is not shared.

That said sometime during the first year (or at one year mark, unsure which) we should be able to send written communication to the donor, and the donor to Tiffany.  This communication will be monitored to not give away personal information that could allow them and us to make contact with each other.  Sometime in the second year we are told that if all is well, we should be able to share personal contact information with each other if both parties are ok with that.

How long will Tiffany be in the hospital?

In total about 5-6 weeks - assuming no complications.  The first week for pre-treatment.  The second and third weeks will be grafting time.  Once grafted in, it will take an additional couple of weeks for her counts to come back to safe levels to go home.

Will she be alone?

She will not be alone!  I refuse to allow that.  I will be spending every other week at the hospital with her until she comes home.  Her mother and sisters will also be spending time with her when I am not with her.  Thus far we have it set up so that she will never be alone and will do whatever I need to ensure that continues.  A big thanks to my parents who have come to take care of the kids in our absence. 


While in the hospital, please no visitors.  She should have very limited contact.  Once home, again, very limited contact.  Our kids will be more than enough to manage germs.  Please be advised that we will ask kids friends to not come over.  We promise to make up for that once Tiffany is better.

How is she feeling?

Today (Transplant day) she is feeling blah.  Not sure how else to say it.  She is still able to eat, but she has substantial nausea and as such her food intake has been cut as has the variety.  Mucusitis is just beginning.

What/when will be her worst pain?

She has already started to feel just blah, it will progressively get worse till about day 9 and then will be that way for about 3-4 days.  Her mouth and throat will have large sores and will become impossible to eat, and swallowing will hurt.  Once the stem cells graft in and her white count starts to rebuild, she will start felling better.  As positive a person she is, she is not looking forward to the next couple of weeks.  But the future beyond the two weeks is bright.

Isn't the transplant date considered her new birthday?

Well, not to replace her old one - of course!  But yes, today, and likely forever more, we will be celebrating this as a new birth.  Today she receives a new immune system.  We will forever celebrate this day.

Will the transplant work?

Yes.  Of course.  It has to.  Why else would we do it?

Are there other options?

Not really.  The only other option at this point is to not do it.  We like our chances going through with it.

Do the kids know what is going on?  How are they doing?

Yes.  They have been aware from the very beginning.  We have made a choice to keep them in the loop.  When going through big procedures and concerning times, we have gathered them together and let them in on what is happening.  From there, we let them ask questions and we answer according to their age. 

They seem to be doing rather well despite the crazy life we have right now.  From time to time we will see the emotions as expected.  But thanks to great family and wonderful friends, they are well adjusted and emotionally stable thus far.  Thank you to the family and friends and parents of friends who have taken our children in.  You know who you are - thank you!

Will Tiffany go into remission?

That is the hope.  They are telling us that if by the two year mark there are no signs of cancer, it will likely never come back.  Tiffany and I will be planning a trip about that time to celebrate that day!  She has always wanted to go to Hawaii.  Hawaii or bust in 2016!

How can we communicate with Tiffany?

Tiffany has recently started using facebook with fierce attentiveness.  Though I expect this to fade through some of the more rough days ahead, facebook will be a great way to communicate with her.  You can also communicate with her via messages in comments in the blog, they show up in her email every comment you give, so comment away.  If you wanted to send her a card, send it to our home and we will get them to her.  At this time - don't expect a reply.  She wants to.  But she is doing all she can to just eat and sleep.

As more questions come up - I will try to answer them.  But this is enough for now.  Hope that wasn't too technical and hope it helped answer the many questions I have received recently.

To all those that care and watch over us.  We appreciate it.