Wednesday, February 26, 2014

Joy of Other Things Besides Tiffany

Not everything revolves around Tiffany... well, not directly.  The kids do have other things going on.

Logan's basketball team capped off an amazing year, finishing off his last game yesterday with a perfect 8-0 record against the 3rd grade boys.  Unfortunately they don't have a tournament at this age, otherwise they would likely win that too.  No, it's not all about winning.  But life is more fun when you are (just ask Tiffany).  They named themselves the Green Bananas, they created a play called 'Hot Chicks' that never worked (but had fun yelling it out during the game to start the play), and never took themselves too seriously.  All in all, he had a fun season.  I wonder if it was an 0-8 season if he still would have had as much fun.  I hope so.

Dallin went to the district music festival held at Syracuse Jr., yesterday.  He played his cello while one of Tiffany's visiting teachers accompanied him on the piano (Tiffany's situation forced her to find a replacement accompanist - we are so grateful for the help).  I sat in and listened and I have to admit, the boy has some talent.  He is excited to find out if he made it to State, and being the non-biased parent that I am, I think he has a shot.  Having only played for a year and a half, I am almost happy to hear him practice.  Almost ;)

Not to leave Emma or Porter out, but they had nothing really exciting going on this week, so maybe we will give them a shout out next week.

It's these things that continue to give the kids spark for life.  While mom isn't always able to attend all these activities, they are always excited to tell her what happened, what the outcome was, and what they are excited for next in life.  So there have been many that have asked, 'How are the kids doing?'  They are doing great.  They keep themselves involved in many activities and seemingly haven't been overly phased by what is going on with mom.  She, and I, hope that continues.  Life is a joy... and it is more determined by how one reacts that what they are reacting to.



Tuesday, February 25, 2014

Tuesday... Not so Good

Part of every misery is, so to speak, the misery's shadow or reflection: the fact that you don't merely suffer but have to keep on thinking about the fact that you suffer.
~C. S. Lewis

We were told of an expected Prednisone drop come Tuesday.  And it came.

It actually started off well enough.  She was feeling OK, but with some pain in her throat and other issues, the day seemed to quickly spiral downwards. 

She did have a liver biopsy consultation with the liver specialist.  We were trying to get out of that one as we were sure that he would tell us nothing new from what Dr. Glenn had already told us.  But it was Dr. Glenn that suggested we go to the follow up appointment (this we were told through the nurses - note - we think highly of the whole team there, but sometimes we have to realize that we aren't the only ones they are watching - additional eyes on the situation probably isn't necessarily a bad thing).

So back up to Huntsman she went.  That was 6 days out of 7 she has been there.  Sunday being truly a day of rest.

Ultimately the visit was pointless - which is what we thought - though the liver specialist did suggest the reason for Dr. Glenn holding off on the transfusion was because her iron count is so high.  The only way to get the iron count, he suggested, was to blood let (get rid of blood) - which isn't a possibility when you already have low blood counts.  So it is a wait and watch approach.  What else is new?!  Though the quickness of the dropping is a concern to us, we know Dr. Glenn is hoping that the chemo does it's job and allows the good cells to multiply and need less transfusions going forward.

After a mostly pointless consultation Tiff continued to seem to get worse, losing energy throughout the day.  She did have a troupe of individuals come and try to lift her spirits.  Tiffany's mom, grandmother, sisters and a sister-in-law, took her out to lunch, and then on to wig shopping.  The plan all along was to try to do it on the prednisone drop day, hoping that it would be a good day to lift her spirits and see some loved ones.  I think it helped, but by the end of the day, she was tired, but grateful for their love and assistance.

I, myself, at this writing, have actually not seen her in the wig, but as soon as I do, I will have to take a picture of it and post it.  Tiffany has had a little fear in being a distraction is some places.  She is not necessarily trying to hide the fact that she will soon have no hair, but she knows that in some places and some instances, a wig will give her the opportunity to go unnoticed, ha, and not scare so many kids (she is sure that kids will point and would rather not go through that at times).

She made it through the day.  The day progressively got worse, but she made it, and a new day is around the corner.

Here is to hoping and praying that what she felt today will be the last for a while and that tomorrow is a better one.



Blood Count Drop

The story of the day for Monday was this...

Tiffany has again, been feeling fine.  Actually, she seems happy and content.  Some issues with the back of her nose that started at the end of her first treatment, but nothing way out of the ordinary. 

Thanks to the help of a neighbor who drove her, she went up to Huntsman to get a shot that is supposed to give an uptick to her white blood count and get labs on her blood.  Being that her blood count was so low last Wednesday and knowing how much blood they gave her, we expected to see low counts again and pretty much expected that her counts would drop below 8.0 and another transfusion would then be required.

Surprise!  Her blood count came in the mid 7's.  No - that's not the surprise... this is...

The doctor told her to go home - no blood transfusion!  We are shocked, and a little mystified.  For the past year, anytime she has gone in with anything below 8, and they have stated many times, that anything below 8 they will transfuse.  So surprised, yes, and home she came.

We aren't exactly sure why.  We do know that you can survive below 8.  It isn't yet in the critical range like the low 5's.  Maybe it was because she had a transfusion less than a week ago and they don't want to do too many transfusions.  We do know that less transfusions are better.  But at what point?  A question for the doctor next time we see her to find out more.

For now, Tiffany is still feeling superbly well.  It may be because of the prednisone she has been taking.  It is a drug that can help make you feel good.  Today is the last day she takes that, so we are hoping tomorrow she won't see a big drop in how she feels.

Until then....



Saturday, February 22, 2014

Happy Spirits, Happy Hair

It is foolish to tear one's hair in grief, as though sorrow would be made less by baldness. ~Cicero

Cicero must not have had children.  He obviously didn't know what 5 year old boys think about the topic of hair.

Three years ago when we started down this cancer path and informed the kids of what was going on, Emma, our 7 year old at the time, (her 8th birthday was around the corner), knew enough about cancer that many individuals lost their hair and asked if Mom would do so as well.  It was the kind of question you would expect a 7 year old to be concerned with, but she wasn't overly so, mostly just curious.  At the time we were kind of expecting we would eventually go down that path, but didn't know when and she seemed satisfied with that answer.

Speed up three years from that time to our appointment on Wednesday.  We were talking to the kids on the phone on the way home, letting them know a little bit of what was going on.  Emma was on, and knowing of Emma's question from three years ago, Tiffany let Emma in on the secret that hair loss would happen and quickly too.  Emma, quickly blurted the little secret out to the other kids in the room and next thing we know, Porter was a bit upset. 

Emma, being the best stand in for mom you can probably get, asked Porter if he would rather mom have cancer AND hair... or if he thought it would be better to not have cancer though WITHOUT hair.

Let's just say, Moms are supposed to have hair.  And what 5 year old would want it any other way?

So, Tiffany, always concerned about being the best mom she can be, decided to let the kid down slowly.  So today after her second of three infusions this week went to a neighbor friend and got it cut... way cut.  With the kids all getting to help.

Now, you see, I met Tiffany when she had a relatively short, A frame hair cut, and I loved it.  Every time she asks if she should cut it, I tell her it's up to her, but I have a fondness for the hair that wooed me.

In an effort to help Porter be OK with a mom without hair, this is what she did....

Just trying to get him used to mom with less hair; and more to come off later!

Oh... and notice her smile.  She is in good spirits in the midst of this trial.  All things considering, she is in a good place!



Thursday, February 20, 2014

In The Beginning...

Focus on the journey, not the destination. Joy is found not in finishing an activity but in doing it.  
~Greg Anderson
So today we are enjoying the beginning of this next journey. 

After getting home close to 8:00 last night, we turned around and came back for her first treatment at Hunstman at 8 this morning.  No rest for the wicked, so they say.

Tiffany notes that she feels pretty good and though side effects will start taking its toll, some of the drugs are actually working to make her feel good and has noted that she is feeling better than she has in a long time.  So, hey, one day down and this is working!

That said - she has noted that she is getting some funny sinus feelings in her nose that the nurse says will continue through the treatment.

Thank you for the many prayers and well wishes from all concerned.  We appreciate them all and are grateful to feel the love of so many.  It truly does help.



Wednesday, February 19, 2014

Joy of Tiffany's Continued Journey - The Real Journey Begins

The best part of any journey, is that it isn't over in a moment.  And if you are truly enjoying the journey, who wants to be done with it!  (Kind of like reading this next text... so fun, so fun.)

So the last few weeks have been a significant period in our journey. 

Last updated was the crazy, hazy day of bone marrow biopsy, CT scans and a transfusion.  And since then has been a bit of hurry up and wait situation.  We went in to get the results from the biopsy on January 29th, and before we could find out what happened with the bone marrow biopsy, we had seen her liver counts jump and concern from that ensued.  When Dr. Glenn came in and talked to us, she had suggested that only part of the bone marrow results were completed and that it would appear that it was packed full of the cancerous cells, but they needed to do the final tests on it to confirm.  In addition to that, with the high liver counts, Dr. Glenn ordered a liver biopsy and decided also that one of her lymph nodes on her neck was a little larger than normal and wanted to get it biopsied as well.  We left that day, in our own kind of a haze, knowing that things weren't necessarily looking up and not really sure where we were heading. 

February 10th came and off we went to get the biopsies.  The unfortunate thing, the two biopsies are done by two different doctors in two different parts of the hospital.  Of course, we wish it could have been done at the same time and save us time, but that is wishful thinking on our part.  We were lucky that we could get them done on the same day. 

It started with the liver biopsy early in the morning.  And for some reason, which Tiffany still can't understand, they only gave her local anesthesia and she wishes she could have got the same stuff as she had back at the bone marrow biopsy.  But fight for it we didn't and dealt with the pain she did.  Up at post surgery her blood pressure dropped significantly for a time (probably due to shock of the pain) which caused some concern and also caused us to be late to the lymph node biopsy.  Being late, the doctor had to go into another surgery which lasted 2 hours, so we waited for that before it was Tiffany's turn.  This time, they did put her out, not under, but just in a twilight phase.  The doctor was supposed to get only one lymph node, but in the middle of the surgery, decided to take out three, just to be sure they had a good sample for the biopsy.  And then, more of the hurry up and wait scenario.

So here is what happened today.
As always, each appointment starts with a blood test.  Tiffany’s hemoglobin is down significantly from where we were two weeks ago.  The last two weeks for some crazy reason she has dropped over three full units of blood – significantly more and to a point she has never dropped to before.  She has been having high fevers daily (102.8 range) for the last week or so since the biopsies, and has some coughs, lack of energy, headaches, pain in her knees etc, that has kept her mostly grounded, so the fact that she was low wasn’t a complete shock, but that it was as low as it was, was a shock.  A shock to the doctors as well.  They were already headed down the path we are going, but this symptom of drop in blood count seemed to add urgency to the next steps.

Dr. Glenn came in and talked to us after her nurses and assistants came and did some checks on her lymph nodes and gave us a run down of the biopsies.

The cancerous cells were found in both the liver and the lymph nodes.  Long story short, they are suggesting this is still LGL leukemia, but it is not acting like they would expect, and in some ways like a lymphoma.  Unfortunately, this is a rare cancer and treating this isn’t like treating breast cancer where they can say out of the tens of thousands of people who have had this, x percent have been treated this way or that way and they have responded this way or that.  There are no statistics, and therefore no one way to treat it.  Fortunately, Dr. Glenn is a specialist in rare cancers and though she doesn’t know how to treat this exact cancer based on prior cases, she has had some success based on the many different rare cancers she has seen.  Essentially, we could look around for a better doctor, but all roads would lead back to her.  And that gives us some confidence.

So, what…

Well, we are going into what we thought we would have to do 3 years ago.  For the past three years the cancer was there, it just wasn’t showing its ugly head.  Because of that, the doctors are often concerned about treating a healthy person with different treatments because the treatments can be awful.  Hence the wait and watch approach.  Things have been progressing with the cancer, hence the reason we started with the low dose chemotherapy last year.  Again, long story short, it wasn’t nearly good enough, and when she got off it, the cancer came storming back, and evidence started to show up in December with the high fevers, lowering blood counts, headaches, night sweats, etc.  

So after the biopsies confirmed what was happening in the various organs and systems, Dr. Glenn and company have decided that we need to go into a heavy treatment.  Today she gets a transfusion to get her blood counts back up.  Tomorrow, she begins a heavy dose of intravenous chemotherapy treatment.  That is the simplified version: I will update what exactly she is doing once I understand it better.  
She will be doing the treatment three days straight doing in an outpatient clinic, and then will be off of it for 2-3 weeks (normally this drug is done every three weeks, Dr. Glenn may make it a two week regimen).  At which point we start again.  They expect this to go on for the next four months.  She will be tired, she will lose her hair, and of course other fun side effects from chemotherapy treatment, but the hope is it will kill the cancerous cells and then allow the good cells to grow in its place. 
Once we get rid of the cancerous cells, the only way to stop this from being a cantankerous chronic cancer, is to do a bone marrow transplant.  More to come on that later.  But if everything lines up just right (treatment, donors, doctors, insurance, etc) we will be move into a bone marrow transplant phase after the chemotherapy phase, with the end result after 7-8 months from now, Tiffany will be back to enjoying her life pretty normally again.  Maybe not exactly normal, and the time frame may change, but hopefully living a full life with a lot of hope for a bright future and to continue this joyous journey of life. 

We don't expect this to be easy. 

After the last few months though, Tiffany has got to a point that she has said she can’t wait to start something, because she can’t live like this anymore.  She has said this a lot this last week.  So in many ways this is a good thing. 
We have hope.  
We have faith.
We know that things will work out for our good. 
But if not, we are at peace that this is the path we are to be on, and no matter how hard or difficult the future ahead may be, knowing that our Father in Heaven is in charge will continue to give us that peace for many, many days, weeks, and years to come.   


PS – I am sure I have left some crucial things out.  As time goes by I will update you and let you know what is going on.