The Hair and How it Falls

Our Journey was a bit different than many. Mary-Elizabeth started off as a search for the reason she had swollen optic nerves.  No one ever said the "C" word but after about a month plans were made to do a biopsy of her skull/brain. 

Now wouldn't you expect that I would have been overwhelmed with concern about my child having her skull drilled?  That would have been a reasonable response to the fact my daughter was going under the drill.  

To my shock and disgust, my first thought was "How much hair are they going to have to shave."  When we were told she was going to have chemo and radiation, I secretly wondered how long before the hair was going to go. How shallow can anyone be? Life had taught me how mean girls can be and how much we value "hair." 

Hair came and went and came and went and came and went and then went again, I began to be more accepting of the process. Sometimes it was mouse brown and soft. Garrison Keiler met her, and while I tried to take a picture she smiled, and he petted her soft silky unreal hair.  He commented on how soft it was not knowing it was Chemo Hair.  It came in curly and sometimes straight. It sometimes fell out for a reason, and other times it fell out for no reason.  I do know that she always complained when it was coming back in because it hurt.  Who knew hair growing back could hurt?  

When it forgot to come back, well.  I was just sad.  Mostly sad for her but still sad.     

Seems so silly but I want you to know that the mom's do talk about it.  I don't think we really care about hair on our kid's heads, but it is still just one more of the things out kids lose.  In actuality, I had never seen my daughter's head without hair.  She was born with a fully developed shock of black hair that never left her head. 

During the first few rounds of chemo, she kept much of her hair.  I am always grateful that she had some hair when she had spinal/cranial radiation.  It fell, she left enough DNA in the house, the car, the yard, the tub, the shower, the kitchen, the pillow cases, everywhere there were bits of Mary-Elizabeth.  It came out in ways that were not really noticeable. 

We joked about it, but it was hard.  So hard. Our dear friend Alison helped her buy a wig for the totally bald times.  Mary-Elizabeth soon learned wigs are hot and some of my friends thought she had too much product in her hair.  She gave up the wig after awhile and just let her beautiful head hang out.  

During her relapse and transplant, she was given a combination of drugs that hated hair. It came out in Movie/TV hair loss fashion. Handfuls and brush-fulls.  If you tried to sit with her and she put her head on your shoulder, it was covered in dark black strands of beautiful hair. 

We have never seen that hair again.  Too much chemo, too much radiation, too much prednisone, the death of her thyroid, GVHD. The usual "long-term side-effects."  She avails herself of hormone replacements, creams, potions, lotions, treatments.  It isn't the end of the world but just another factor she addresses every morning when she brushes her fragile hair.    

So why am I writing about hair now?  Why the whining.  Well, we are moving.  Because we are moving, we are going through the house and uncovering years of forgotten items.  I came across the notebook I put together during the first couple of months of her treatment in August of 2014.  In the notebook was a lock of hair.  Crudely folded into a piece of paper.  No date, no time, no real identification. 

When I touched it, I knew.  I understood what it was.  It was the lock I clipped before her first infusion.  The first dose of chemo I let them put in her body.  The hair from the time before we entered Cancer World.  I flipped through the notebook and realized it was filled with pages of anxiety and sadness and fear.  It was full of anticipation and understanding about what was going to happen to my lovely smart, kind and lovely daughter with a full head of hair. 

I wondered where I would keep this memento.  I seemed wrong to toss it. Or burn it. Or frame it. Or weave it into a locket or a bracelet of any kind.  I found a place.  A page in her baby book that hair from her first bang trim, her first curl and her now her last lock of Normal Hair.  

Another Bright Light is going To Go Out....

I somehow connected to this family a couple of years ago.  Their daughter Emily was inflicted with the same Lymphoma as my friend Trisha.  Unfortunately Emily has relapsed again. This family has been on fire.  They have had every buildings in Chicago lit up with Green and Purple, Emily has been at the Police Headquarters, heck she even had a call from Taylor Swift. Emily is squeezing every single moment of life dry.  As we all cry inside for this impending loss. 

 I hate to feel like I only have sad stories to share.  I don't want to be that person but some it is such a big part of being a Cancer Mom.  Knowing we have to be there even during the losses.   

Say an extra pray for peace and painless days.  Light a candle.  Hug your kid.  Forgive your irritating neighbor. Smile at the homeless guy.  (Still feel free to kick the smokers) 

Sorry I haven't updated in a while. It's hard to come up with words when I feel so empty inside.

Emily has been having some good days. She hates radiation, but she has to go for pain management. She has about another week left. Thank God the pain finally subsided. They put her on Methadone. At first, she was miserable. Not only was she in pain, she was very mean. I don't know if it was the pain, or the getting use to the pain meds. Our Emily came back last weekend. She is only functioning on one lung, her left one. She gets up to brush her teeth and after she has to sit down and have some oxygen. What 12 year old should get tired and winded brushing her teeth? I don't know how we are suppose to do this? Looking at her beautiful eyes, her beautiful smile, her little buck teeth. I just can't imagine a world without all those things. We all hurt so bad!!!! We are watching her deteriorate. How is this fair? When I say science has failed her, it really has. ALL our kids need and deserve much better than this. This makes me absolutely sick. Ed and I have been watching a PBS special that was on a few weeks back. It's hard for us to watch so we are getting through it slowly. The last part we watched they were speaking to the first Leukemia survivor. She was in treatment 50 years ago, they listed her medication and I wanted to scream! Emily was on all the same medications. In 50 years, NOTHING has changed. How is this ok? Things in pediatric research needs to change!!!!

Hospice has been coming, the nurse is very nice. Emily likes her. The other day we had to sit and go through the stages...... Emily is entering them. She is not really eating at all. I am told that I should not force her to eat, because her body doesn't know it's hungry, it's too busy trying to keep her breathing and her heart beating. How am I suppose to not make her eat? I feel like I am trapped in a nightmare and I can't wake up.

We are still trying to enjoy everyday for what it is. We will not cry in front of Emily, unless she is crying. Thank you for all your support, prayers, and love. Ed Beazley

Unlike · Comment · Share

Journey Reality

so.... We are creeping up on the 3rd birthday of Pearl Anne.  She has been stepping up and working hard to be a grown-up immune system.  She did need some help and some re-vaccination had to be done.  Some times when you are two, you are so busy with life and saying "NO" that you forget to produce titters when you are given a little bit of a bad virus and are supposed to get to work. 

Anyway last week was a crazy, stressful and very tiring.  I, for one, am out of shape in the going to a million appointments at several hospital institutions in short order.  But we did it.  We have been excused from next year's appointment and are not expected back for the week-long trudge until 2017.  A very good thing.

So I managed to get myself pretty worked up and freaked out over the course of the week.  Mary-E looks great but then she did the first time Leukemia creeped into our lives.  She was in perfect health when I sent her off to college when she relapsed.  I know that with every blood draw, every bruise, every hair that falls, it could be a sign and not a good sign.  

Well this time what you see is what you get.  Thankfully.  

I asked Paul Carpenter (our favorite Aussie Bone Marrow Doctor) when I could stop worrying.  He asked Mary-E what she wanted to hear.  I said I wanted to hear the truth.  His reply to me was  "She is fine for now.  You will always have a reason to worry." 

That was not the answer I wanted.  I wanted him to say we were done. They had fixed her and we were released.  Instead, we have just been transferred from Pediatric Bone Marrow Transplant Service to the Adult. She will be closely followed for the rest of her life.  They are watching and waiting for something to appear, the next thing to be handled.  This journey is just going at different speed. It is not over. 

I, like a million families of children struck by cancer, want it to be over.....  Really Really Really OVER.  It is never over.  It is never ever really over. We don't get to go back to the time before cancer. I know this but there are moments I want to believe it is not the case.  

I think it is sort of like giving birth.  The pain of the actual birth recedes with time and more children are born.  So.... you ask. 24 months until the next big appointment. There will be some small check-ins.  She is essentially done.  But in reality she is not done.  She is done for NOW.  I wanted her to be done done.  I wanted to put away that knot in my stomach. I wanted to not wake at 3 a.m. in the morning with a start.  A deep chill of a horrifying dream. Over, I want it to be over.  

I am working on gathering the strength to go forward and constantly prepare for battle.  Even it is just by taking a few deep breaths.  I need to re-charge somehow.  One step, One moment. One thing at a time. 

Best use of my energy.  Putting away Christmas...... with a label maker as part of the process.  

Thanksgiving and ThanksTaking

It is always a bit of both.  Give a little, take a little.  Leave a little. 

So we cooked.  People came. People ate. Food mounded on the table.  Our tiny turkey of only 21 pounds went on to feed the world. It took three days to do the dishes but what the heck.  Better to spend time together with Friends and Family then to have a clean house.   

For some reason I find I am doing lots of breath holding. But tests are coming and I am always afraid of what they will find.  I just keep waiting for the other shoe to drop. The one that will stick to the floor and not return. I know it is nuts to trust the Universe and also Nuts to not trust the Universe. Childhood Cancer is such a monster. A hideous multi-headed Medusa. Enough. So many kids did not make it to this Thanksgiving and more will be missing next year.  Losses just make it more important to keep going and gathering those we love close and closer. 

 Looking forward and not backward. Pretending there is a long future but know it is not the case for everyone.  So as the knives slip into their designated places, I plan for Christmas Eve.  Crab Bisque, Beecher Cheese and Tomato Soup.  Come one, Come all. Come for the adoration of the Soup Tureen. (We even found the soup bowls)  

Nothing Prepares us for the Death of a Child.

I remember when I was first pregnant with Mary-Elizabeth I was convinced I would never ever be ready to give birth.  I later looked back and realized all the sleepless nights, the getting up at at the oddest times to use the bathroom, all the discomfort that robbed me from sleep was preparation for after the birth. The birth for which I could not wait.... 

Life prepares you for what is coming your way. Little by little.  We roll over, we sit, we crawl, we pull ourselves up, we walk, we run... Much of what happens in the way of preparation happens in a simple way.  It sort of sneaks up and and at some point you are readied for the next task.  Unfortunately, sometimes the preparation is not for good things. 

I was visiting with a Cancer World Mom the other day and she related how she felt the early challenges with her child had prepared her for the Leukemia Battle.  I am a great believer in this idea and concept. It's the old "what doesn't kill you, makes you stronger" concept.  I have had way too much practice and experience, not in a good thing by the way.... 

Cancer Parents are reminded and buffeted every day with loss and the child death.  Every time a child dies, or one is dying or may die, the pit in the stomach is made wider and deeper.  As parents there is no adequate way for us to prepare for what is coming.  We all loose a gold fish, a bird, a cat or a dog.  We then loose our grandparents and extended family members and parents.  It sort of gets us ready for the next steps in the journey.  It paves the way, it gives some practice at handling the pain and emptiness that follows the death. 

 I so distinctly remember being unable to breath when my dad died.  As much as he is missed, it was okay that he was gone.  He had a great life. He did the things he cared about, he helped people, he ate BBQ in Magnolia, Arkansas, he read good books, he spent time with people he loved and in places he loved.  His lose was gigantic at first and then time seemed to make it okay.  At unexpected moments a memory will pop back or an item will present itself and it begins again.  The horrible feeling of emptiness piles up again.  It has been almost 20 years since my Grandmother died and I still think about sending her something or calling her.  

All of these parent and elder loses is the universe preparing us for the endings that are coming.  Giving us some prospective on the end of this life and how to best make the transitions.  Helping clean out a family home teaches us about the need to pare down and to focus on what little we need for the future.  The slow decline of a parent or a family member lets us practice and prepare for our trip down that particular rabbit hole and for their death.  

We are still always shocked and horrified and breathless when they die.  If it is sudden or if it is long and lingering.  We are still in a "state".  It should be a shock and heart break.  Those we lose are so important to us.  The greater the feeling of emptiness, the deeper the love we were able to share when they were with us in physical form.  It is a part of life, the ebbing and flowing of tides. 

So.... when a child dies before a parent we are stuck.  We don't know how to move on... even months and years afterwards, the wound is fresh and open and throbbing.  The reason being there is no way on this green earth for us to have any way to prepare. Death of a child is not supposed to happen. They are our little bit of immortality, the continuation of our story, they hold the future.  The pattern of understanding is simply dismantled in a blink of an eye.  It is over.  

I still have my child, she is away at school but we have looked long and hard at the brink and often slipped dreadfully close.  We have watched other's headed down that sad and solitaire path.  No one can join, relieve, help, or comfort those on the road to child loss.  They are on the mountain alone.  

From a comfortable distance, it is easy to say "why don't they stop treatment?"  "Why don't they go home?" "Don't they know it's over?"  I have to be honest, I have thought this at some point.  I guess it comes from seeing the suffering of everyone.  But then how do we ever be alright about stopping the treatment of our children? A cure, a reprieve, a new study, a new medicine. A new......   It is so so hard. 

Nothing ever gets us ready.  We have too much experience and know what our kids are missing during treatment and what they will be missing in the future.  We have to trim back our expectations and the dreams of their lives.  

When that lovely little squiggly life is put into our arms we just don't have it in us to think "Our child might die a horrible long agonizing death from childhood cancer."  It is not on the radar. At the beginning of life, we don't often think about death. 

I wish it was not on any one's radar.  It seem lately more and more parents are facing this horrible end to their child's life.  Keep them in your hearts. While we can't prepare, we can be supportive and helpful and if nothing else, sit and have a cup of coffee with them and let them tell you a good memory.

Giving Back...... Can we really accomplish our goals?

So we have moved into Breast Cancer Awareness month.  Lots of people are really freaked out by the apparent lack of interest in Childhood Cancer.  The month has turned pink.  Let's be honest, I was not aware that September was a month for such things until a year ago.

So I am a bit dense and was not aware that it was a fund raising month.  I guess awareness requires money.  It is such a conundrum.  I know it is important and very necessary.  I know that we need to figure things out. I also know that the Mom's whose kids have been affected by the horrible disease want to fix it for others. We all want to "give back" to those that helped and made our lives livable during the ordeal. 

Mom taught us this lesson. The reality is that we can't "Give Back".  It is not a possibility to do so in any meaningful way.  The family that dropped off the meal doesn't expect to have a meal returned.  It is not reasonable to think we can. I know when I do something for someone, I don't enter it into the ledger and expect something in return.  It is a gift for now.  

We have to pay it forward.  I realized I need to stop trying to re-pay everyone and just move the good things I could do forward. 

I remember the moment Mom practiced what she preached.  We were at the California State Wrestling Meet in San Jose California.  David was competing and we had gathered for the event.  Mom and Dad had come from Canada, I was there from Dietrich Idaho. David was a Senior.  We had been at the ticket booth and there was a women with a small child.  It was very apparent she had paid for entry with 100% of her cash, the only form of payment they took.  She had planned on using her credit card.  We met again in the bathroom and Mom asked her if she needed some money.  She explained her brother-in-law was a light weight and she has indeed used all her cash.  

Mom gave her 50.00 and the recipient wrote her a check for $50.00.  Mom tore up the check and put the part with the name and address in her billfold.  She then explained: "When I get home, I am going to write her a letter.  I am going to explain that when your father was in medical school people sent us money, money we desperately needed.  We tried to pay it back and were told by more then one person it was more important to help someone in the future.  In every life, the opportunity will arise for such a gesture.  Her job was to  pass it on."  

She never said another thing about it and we went in to the Arena to watch David become California State Champion. 

Lessons from Cancer Mom Parenting.

This was published in the Huffington Post.

  http://www.huffingtonpost.com/jessica-bensten/20-things-a-cancer-mom-knows-by-heart_b_5800640.html

I didn't write it but could have.  I am working on my list. 

I learned that kids can get cancer when Jackson was 1 year old. He'd just learned to walk. He still wore OshKosh B'gosh overalls and loved to be rocked to sleep. There was nothing that he did wrong, or was exposed to; one day, there was just a lump.

Chemo. Radiation. Surgery. Stem cell transplant. Immunotherapy. Intensive Care. Oncology. Even though it's been four and a half years since he finished treatment, some days it feels like it was yesterday.

At times, I think I was born the day Jackson was diagnosed. The world falls silent as cancer shuts out all the background noise of work stress, mortgages, that extra 10 pounds or what's on TV. It awakens a level of empathy to suffering and an awareness to what's truly important in life.

Once a cancer mom, always a cancer mom. These are 20 things I know by heart:

1. It is the most unnatural thing in the world to be told your child has cancer.
2. There's nothing you can do or say to take it away from them. There's no fixing it.
3. Babies can be born with cancer.
4. Toddlers can lie on the floor and throw a tantrum while having cancer.
5. Little Leaguers will miss their games because of cancer.
6. Teenagers can go straight from the hospital to high school graduation, then right back to the hospital.
7. Children can often handle higher doses of chemo than adults.
8. Kids can play hide-and-seek, chase each other in toy cars and build an epic Play-Doh creation, all while toting an IV pole with chemo.
9. Treatment straight up sucks.
10. I can feel a fever without even touching my child.
11. There's such a thing as radioactive urine. And I've changed that diaper.
12. Sleeping in a hospital bed with a sick child teaches you interesting life skills, like the ability to wake from a sound sleep, grab a bucket and catch vomit.
13. Some kids can have the opposite reactions to medications... like for instance, something that makes an adult sleepy might amp a child up. Having a toddler stuck on "fast forward" will make you bone-weary.
14. The first scar is always the worst. Taking that beautiful, soft baby skin and seeing it cut open is like ripping your heart out.
15. You realize nothing is as important anymore as getting your child well.
16. A mother's love knows no bounds. Not even being puked on, directly in the face.
17. You'll never forget the smooth, sticky feeling of a bald head against your cheek.
18. Every ache and pain, no matter how long your child's been in remission, will remind you that cancer can come back.
19. Statistics don't mean a damn thing when it comes to your child.
20. Kids never give up. And neither do their parents.

Moving Forward and still Staying Connected.

She is off treatment, she is back at school, she is thriving. She even missed a class this week because she slept in... how normal is that?

So there is a part of me that wants to step out from under the Cancer World Cloud and move on. We are done, it is over there is no looking back. Wouldn't that be great. Wouldn't that be a perfect thing to do.  Any sane person would do so.  

But we Cancer Mom's are sort of like holocaust survivors. We might have not been in the camps (our kids were) but we carry the scars with us.  Our kids have the tattoos from radiation but we had to be there with them. We were there, we were trying to keep them alive and keep them sane and keep them safe. 

I want to flee and pretend it did  not happen.  I want to flee and pretend it won't return.  I want to think it is done.  But we all know it is never done.  No matter how far out, no matter what the research says... it is never over.   

Someone shared this little picture.  Sort of a reminder that it is never over. So I guess I have no choice but carry on. Work on a book. Do something great to fill the hole cancer dug in our lives.  We are strong and determined and nothing..... will keep us from doing everything we can with our lives.  Small steps.  Each more normal than the last. 

Gonzaga University and it's Place in our Cancer World Story

Heavy Sigh.... in order to tell this story in the way it should be told, I have to prepare myself for some feelings I have put in the back closet, in a box, with the label.. .do not open.  But sometimes those heavy sighs can be good things. 

So.  Recap... Cancer came in 2004, Cancer was pushed under the rug in 2006 and came back out with a vengeance in 2011. 

Meb was happily ensconced in her new life a sophomore at Gonzaga.  She applied to 11 schools, was accepted to 9 and wait-listed at one. She walked on to the campus of Gonzaga and said to me... "Mom this is it. This is where I belong."  She was so so right. From the beginning they did everything they could to make her successful.  

The gave her money, they wrote up accommodations to help with her the weird stuff Seattle Children's did to her brain. They have a great program for certain kids that come from mixed-culture families and she was able to settle in to her new life with a bit of a head start.  She was able to pick her roommate and life was good. 

She worked hard and thrived until three years ago today when we all received "the call", the "it's back" call.  

I was in a state of confusion and anger and frustration.  My great pal Shelley Buckholtz had the sense to tell me call the school to let them know Meb would no longer be in school.  I gave her the job.

Within 30 minutes, our room was filled with Sima Thorp a dean of students and Father Hightower, a great priest.  30 minutes.  

Within 6 hours I was called by the President, the dean of the Electrical Engineering department was ready to go to her apartment and pack up her stuff AND drive it to Seattle.  Student Accounts was sending all the money back for the whole semester and securing her future grants and aide for her return.  They even were able to return her GET money so we didn't have to pay taxes on it.  A student wrote an article in the paper. A great old priest reached out to her an wrote lovely encouraging letters.  They made sure she was able to go to the Battle in Seattle just before transplant.  Sima kept in touch and was ready to answer any questions I had and was so so good about helping her return.  Someone did a bone marrow drive in her name.

During her time at home they worked on a way for her to continue to study in a way never done before.  Father Tran came to visit us more than once to help with her questions and so did Dr. McKinney.  Over and over there was an effort for her to keep in touch with her school and to foster a feeling of belonging. 

When she did return last year, they again stepped over backwards, turned themselves inside out and then did more.  She was able to live in a Junior/Senior dorm with her old roommates, they worked with her to make sure she could get to her appointments and had time to do so.  

I have dropped her off again to begin her junior year. This time it was different.  Early drop off, books, settling Tucker into the dorm. (A much needed companion dog for her.) Lunch with Sima.  A feeling that she has found such a special special place to finish her education and be successful. 

Gonzaga is a place of real purpose and dedication.  They practice what they preach. They make significant and differences in the lives of the people in their sphere.  I know that what they have done for Meb, they have done for every single person on campus.  Those kids are loved, encouraged and given the space and tools to grow and be successful. 

As  I drove away from campus this year, it felt so good to know this was going to be a good year. A year of growth and learning.  She is so ready to be her own person and grow beyond being a kid that had leukemia twice in a decade.  She is headed to the best thing possible.  A degree from Gonzaga University. 


Now if Tucker could just meet Maddie the mascot... life would be perfect. 

Stage Ten

Lots of cancer's are "staged".  It depends on the kind and lots of factors.  Stage Four is bad. Stage One is not so bad.  People move back and forth in the stages and it rules their lives.  

Leukemia is sort of like being pregnant.  You are or you are not...  Simple.  

Mary-Elizabeth does not have leukemia any more.  She has not had it in her system since some time in November of 2011.  She has been in "remission"  or not pregnant since then.  In order to have her transplant, she had to be cancer free.  The whole cancer free thing seems to be confusing because of the length of the "treatment".  It does not fight leukemia, it just beats up the bone marrow to such an extent that in theory, no respectful leukemia would dare to come back.

The various kinds of stem cell transplants, bone marrow, cord blood,  related, non-related, self-donated, all of those are just jargon.  You sign papers, let them kill the cells in your bone marrow that produce blood cells and replace them with healthy, happy, normal cells.  Or that is the plan. 

So, since we live in Leukemia World and we don't get to have stages, (not that we really want them), I have decided we are in Stage Ten. I figure we have been here long enough to just make up stuff. 

Stage One: She was diagnosed on Friday the 13th of August 2004. 

Stage Two:  She was Leukemia free or in Remission on September 13, 2004.

Stage Three:  December 7, 2016, she took her last dose of Chemo therapy. 

Stage Four:  Relapse on September 28th 2011. 

Stage Five:  Remission November 10th, 2011.

Stage Six: Double Cord Blood Transplant, 2012.

Stage Seven: First new baby countable cells show up in her blood, February 11, 2012

Stage Eight:  August 1, 2014, the final doses of immunosupressents  are taken.  (Should have only had to take them for 100 days, but who is counting....)

Stage Nine:  De-Portation Day.  The port that lives under her skin with a nice tube going directly into her heart, is removed.  August 25, 2014... 

Stage Ten:  Trying to begin to believe and trust it is over.  

This is a journey at its end.  We have traveled across the country to find a path to the sea and have returned to tell our tale.  Like Lewis and Clark we are worn and battered and very ready to sleep in our own safe homes.  

Stage Ten begins today. 

She is on the Train back home

so she has had some Grandma Mary time.  Always good. She loves the little old ladies. She loves to listen and comment and just fit in.  It does not take very long for them to realize she is one of them. She has packed 80 plus  years into her short 22.  

We have some very important days ahead of us.  Serious and important.  On Thursday we have the last appointment with the SCCA until January's big annual appointment.  I have lots of hopes that lots of meds are going away.  She has successfully tapered off the side-effect causing drugs and it should make the rest go away.... she could be down to some vitamins a bit of thyroid medicine and over the counter allergy stuff.  Oh, to hope for such a list of meds.

It is hard to hope or trust.  Tomorrow marks our 10 year anniversary.  10 years ago tomorrow this ceaseless, never ending journey began.  But we are only marking the beginning.... we begin on the 14th of August 2014 to mark a new beginning. The end of Double Cord Blood Transplant complications.  2.6 years of constant diligence, concern, anxiety.

It is replaced with new worries but new is always a way to start a school year.  New binders, new roommates, new classes, new teachers.  New. 

We are all about New Starts, New Hope and New Adventures.

She gets off the train at 12:30...... Here we go. 

They Never Ever Tell You Everything.....

You just get used to bad news. 

You are ready for bad news, you have endlessly received bad news, you make lemonade and mustard gas out of the bad news but it is always, always bad. 

It is just bad.  No other way to put it. 

Counts up- Bad.

Counts down-bad

No counts- bad

Liver function up- bad

Liver function down—could be bad

Kidney numbers up  sometimes bad

Radiation = cataracts

Radiation = infertility

Radiation = dead thyroid

Radiation= brain process slow down

Radiation = dead bone marrow- Good.

It just goes on and on,

So imagine how it felt when our new very active, very hyper, very loud endocrinologist bounced up and down when she saw the

Stim test results.

Had she failed….. Life time of prednisone…… life time.

Happy happy happy day.

I think we see the end of the Tunnel

I can see. 

I can hear it,

 I can taste it, 

I can feel it. 

The end is near. 

I am ready but I am not holding my breath.

When I was a law student, My parents lived in exotic locations… like Canada and Switzerland.  One of Dad’s benefits was that we could fly three times a year to visit our parents.  It was a pretty wonderful perk.  We would hop on planes and head out to great vacations. 

The thought of those times was pretty exciting and if I thought about what happened after the last final, I would lose focus.  So I learned to slam a door tight until I was done.   I knew what was behind the door but I did not receive the key until everything was wrapped up.

So…. The door is slammed shut…

So here we are the remaining tasks before we are given the key.

1.     Endocrinology

2.    Big appointments with SCCA

3.    Port Removal

Three things. Three tasks, Then we can look through the door.  Look at the other side. Look at the  world again.  Not confined by all the Bone Marrow Transplant rules.

She is already stepping out.  She has broken rules hard and fast rules……. She had sprouts on her sandwich and

Raw cookie dough….

More shocking and normal things live beyond the end of the Tunnel and we are ready

y.

                                                                                                                                                              

Hyper Pin Point Focus....

We get so focused...So focused on the goal that sometimes we don't see the big picture. 

 The big picture is there all the time but being in cancer world deletes your ability to see that picture.  You have one set of goals.  It starts out big... Cure Cancer. Cure and defeat Leukemia, AML or ALL or , Brain Tumor, Sarcoma...Wilms, the list is endless.  Cure, Cure, Cure.

Only later do we face the reality of what the cure means.  80% of the time it means life.  Survivorship, a future, a way to return to normal.  I told someone a long time ago I was not giving a dime to anyone that wanted to cure Cancer, only to those that wanted to figure out how it happens and make it stop. 

I sit here this week and look at the fall out from being in Cancer World twice and now it is damage control.  Sort of like the bombs dropped on Nagasaki and Hiroshima.  They stopped World War II but then what.  At what cost to those sitting around innocently having a morning cup of tea?

Mary-Elizabeth and all of our children have been subjected to a nuclear blast. Many cells and organs and future cells and eggs took one for the cause.  Her thyroid died, her eggs are (ready to be served on) toast, she is guaranteed cataracts and skin cancer and a whole list of possible other cancers.  

Don't get me wrong, I would make every single decision the same except I would have pushed for egg harvesting when she was about 17 or 18.  I didn't think about it then and now it is too late. 

We are so singularly focused on a date, a place, an event, a result.  Please let my child's body be ready for more Chemo. Please let my child's body be able to 4 days of twice a day total body radiation and high dose chemo so that she will be completely helpless against any sort of bug!  Please let them do some more scans or run a scope down into her stomach and take a biopsy.  Please let them operate and remove huge parts of her bones and replace them with some foreign metal in a new experimental surgery.  Please, we will take anything, just let her live...

If we ever stood back and took a look at what was really happening and thought about it, I don't know what would be the result.   I guess our brains know we can't handle too much.  So we are able to chop up the ongoing crisis in little bits and pieces to be handled one step at a time.  Today we do the biopsy or the scan or the chemo... Tomorrow we evaluate and keep going until we hit CURE.  We will take the dead thyroid, the deeply upset kidneys, the brain die-off the massive infection that will not heal, the relapse, the 14 days in ICU, the emotional storm of anxiety and depression and all the rest.    

We are focused on a Cure.  Nothing more, nothing less.