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. 

Cancer Mom Counting...

We count the numbers of doses of Chemo Therapy. We count the number of times they have invaded our children's spines with Chemo. We count the number of days between doses. We ask them to recount when blood counts are high and when they are low. We count how many days before the end. We count how far from the end we are.  We count.

We count to control and put some sense to our world and to feel like we have some control.  We like "to know" what is happening, or might be happening or what might not be happening.  

Our world does not make sense to there has to be some sort of mechanism to help.  

Treatment is easy.  It is set out, it has a plan. It has steps and goals and procedures. It has something called a Road Map.  Not quite AAA but darn close.  It lets you know where you are going and how you are going to get there.  Then some are luck to have an Advanced Nurse practitioner that gives you great calendars and a key to the Road Map.  Yes, there are bumps and count failures and lots of complications but it is a plan.  It has a defined end. 

1+1=2
3x6=18

101, 121, 314, 151, 617, 181, 920, 212, ___, ___
 What's next?

Being off treatment is a different story.  I am sitting here, counting down the days before Mary-Elizabeth goes back to college and I don't know what to think or how to react.  

Now what?  Do we count the transplant for the magic 60 month count down?  Do we just hold our breath and count until the next long term side effect appears?  We know the leukemia she had is gone.  Will there be something else to show up?  When will it come? Will we recognize it in time? Will we ever feel safe again? Shall I count my questions?

Maybe I will count the days until the worry does not greet me first thing in the morning.  Lots will tell me not to worry, she looks great and it has been a long time and she will go forth and thrive.   What is missing for me is the trust.  I trusted before and that got us 57 months off treatment and a relapse.

If you are sensing of a bit resentment and anger, very good.  Yes, my child has survived her Double Cord Blood Transplant.  But there is a price for survival.  No one comes out unscathed.  

Okay, get back from the deep despair and anger Sally Ann, You have to clean out your car and pack your child for college.  You have to see there through surgery on Monday.  You can do it. You have done it so far and you can make this last lap. 

Counting Down...

Inject Warts with de=activated yeast... Check

To be done:

Pack the Car.
(Maybe I should clean out the car.)
Trip to Good Will to drop off stuff identified as donation worthy. 
Do some fun things with friends.

Port Removal.... 
Pick up small amount of drugs still required.
Teeth Cleaning.
Waxing Appointment.
Dog Spa Day.

See friends.
Eat Asian Food
Especially Sushi and Thai

Stop Lovonox. ( No more rat poison or shots!!!!)

Head back to College for Junior Year....

The first year that will seem more normal.  Much more normal. 

Hard to believe we have it all figured out. 

Yeah!!!!

Meeting Momcologist

Today I met up with some Momcologist.  Often this is a moment of healing and joy and support. Today it was a moment of support. We gathered to support one of our own at her son's celebration.  It was a great bitter sweet event.  Laughter, tears, moments of deep sadness, some relief in coming together.  

Clearly a very extra ordinary person had his life hijacked from him. 

We often mention that a person lost their "fight" with cancer.  That is was a brave battle. They were a trooper, they soldiered on.  There was a positive attitude and braveness is always mentioned. We heard a lot of that today.  Everyone fought, everyone prayed, everyone pleaded, everyone did all they could to keep death away.  

I just don't ever want to hear that Daniel, or Micheal, or Alise or Ruby or Nala or Owen or Mario or Sarah or the endless others "lost". They are not losers. They did nothing wrong. They did not take a wrong step or fail to do something right or not do ever thing possible to conquer cancer.  It is not fair to say a child has lost a battle.  Winning and losing would be appropriate if there were rules of the fight.  Like the good old day when everyone agreed on what day the battle would take place. The child's life was hijacked. In many cases there was really nothing to be done at the end. 

They had cancer.  It is unpredictable. It is ruthless.  It does it's job in ways no one can figure out.  It is a very poorly designed invader/alien force. It has not figured out how to reach stasis.  It kills it's host.  It isn't just happy to settle into a bone, or a lymph node, or a kidney, along a nerve or an eye.  It wants more. It wants to see how it can continue to survive in other places.  Lungs, brains, other bones. 

Today I felt like we were all a strand in a web. The middle was Daniel and the stands and circles of web were populated with all the friends, families, care givers, teachers, neighbors, classmates, doctors, ministers.  Everyone in the web, there to say goodbye to the center of that particular web. 

The webs are fragile and each day have to be re-made.  When the center is gone and the strands are broken, a new creation has to be woven. Clearly he left much more of himself behind to help with that process.  

Daniel is gone. His life was ended by his cancer.  He is so much more than the kid that "lost" his battle with cancer. 

Gentle Landing

Almost didn't feel the landing.  We have arrived.  We are here.  It was a quiet re-entry, a soft gentle thump. No broken bones, no real jarring crash.  A simple.... quiet... sigh.

So now what?  Like all endings there are things still to be done.  Loose ends.  Eye stuff, teeth stuff, Port Removal. Medication ending. Some being changed and added to facilitate the end. Some sticking around until January and some never end but the list is much much shorter. 

Deep sigh. Quiet contemplation about what it means. 

 Maggie wondered if we were having a party.  An end of treatment party.  Does not seem the thing to do.  Does not seem like I am ready to celebrate.  I wonder if celebration at the end of the last  journey was a form of hubris.  Are we really really done? Is it done?  How do we know? When do we know?  Will we ever know for sure?

I know when I read about people ending treatment and rejoicing, a little part of my heart hurts for them.  A bit of fear resides somewhere, that little voice, that nagging smidge of knowing.. knowing they might not really be done.  

They might have the call from the tired child with the bruises and the headaches and it might start again.... 

I am so grateful and so relieved and so....  

So if I rejoice, is there another parent out there, sending me a heartfelt warning.  If they have a story of another journey?  



Going to do some breathing. Some quilt finishing. Some reading. Some taking in the moment, quietly. 

Tunnel

Today we are hoping to leave the Cancer World tunnel.   Big appoontment at SCCA.   

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. 

Reflecting

Stillness

Quiet

Peace

Listening

Pondering

Reflecting

Lots of words for something we don’t embrace as a culture. I remember our friend Yim talking about how in Thailand they begin to teach meditation to kindergarten children and the first block of time was 15 minutes.

15 minutes… I wonder if I can do that. If I can sit for 15 minutes and not think.  If I can just be quiet. 

There is so much going on in my mind. Quiet does not seem to be much of a possibility.  I am going to try.  A moment. A moment of quiet. A moment with the dogs not barking, the phone not ringing, a moment with only silence.

I think things are at a place such a thing is possible.

I will let you know how it goes….

Hoping.

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.

                                                                                                                                                              

Crow Parenting and lessons Cancer Moms could learn.

1.  They loosely define family. There is always mom and dad and a few hangers-on.  They call them Nanny Crows.  It helps because there are usually two babies a year.  Often the Nanny Crows are young adults from prior years that have not quite left their Mom's basement. 

2. They don't let them out of the nest until they can fly on their own.  When they do let them out, they have two adults with them all the time. 

3. They feed them, they stroke their necks and nuzzel them sometimes and then at some point they also ignore their screeching.  When one parent does not respond, the baby goes to the next parent. When that does not work they follow their parents around and skwack some more.  This goes on all day but in the end the kids start to feed themselves.  They score snacks but they learn and watch and figure things out. 

4. They keep them close for awhile but encourage them to play with other bird friends  Often they even let them play with starlings.  When the babies come out of the nest they are adult size with perfect feathers. The parents and the nanny's are pretty bedragled by this time of year.  The parents keep the babies groomed but when they go play with their friends things get out of control.  You can always tell by a feather or two sticking up.  

5. They pay attention to their kids.  No texting, cell phone calls or television.  They work together as a family to steal food from the Stellar Jays. They spend evenings together and fly away to roost about 30 minutes before sunset.  

I often wonder if the Crows record such observations about us?  They learn from each other, they remember faces, they know when food should appear and demand it regularly if not delivered. They set up their own "homes" and jealously guard them, chasing away the most officious interloper.  Raccoons, cats, dogs, even people are chased and dive bombed.  As a greater group they will even take on a Bald Eagle.  

We have watched, we have been amazed, we have been delighted. Our own little nature show.  They are a part of our lives. A weird but present example of parallel lives. 

Many Mom's mention they feel like they stepped off the path and have a hard time rejoining their former lives.  I think we have to do it the ways the Crows do... a bit at a time.  

We

have been fed and coddled and protected and now we are venturing back into the big world.  The thing we need to remember is we are not alone.  We are being watched protected and will be helped along the way. 

We can do it. 

So here we are.... gliding along, not knowing others are really struggling...

That is a lie.  I know there are horrible battles going on every day, all day and every night. I know kids are dying and mom's are crying and people are getting horrible horrible bad, worse than you can imagine news.

As we head out of this current orbit around the Double Cord Blood Transplant  universe and head to the unknown galaxy of Post DCBT, I try to be a bit like Lot and not looking back at   Sodom and Gomorrah.  I don't want to know what is going on behind me but I know I am turning into a pillar of salt.  I have not found it possible to just walk away.  Or in my case, run like hell. 

It is so hard.  Sitting here tonight, working on my blog, trying to do some editing, figuring out what I need to do to publish and then I hear a ping.  A bell like sound that says I have a private message on Facebook.  I check and it says:  

I thought you would want to know my dear son passed away yesterday. 

I see those words and it is like a kick in the gut.  This is a kid that had 10 months of chemo and a major surgery and was clear and then, it was back just a few months ago and now it is over for him.  20 years old. I can just feel the balloon of hope and prayers collapsing around a devastated family and friends and his best friend that did a campaign for him to go to Europe.  (The hope was to take  both families but from what I can gather, it was just the two boys.   I am sure they had a great time. ) 

So I stop.  I reconnoiter, I check on my kid.  I gather the Momcologist around this devastated mom.  I relieve her of the responsibility of "telling" another human. I start to look for the obituary because I will go to the funeral/service.   I do a quick search and find the child's Facebook and Twitter account.  I heave a heavy sigh. I write a few words and do what I think helps and then I turn away and head back on our road to recovery.  

But I know it is like the Ray Bradbury story about the guy that steps off the designated trail when he goes back in time to hunt dinosaurs.  When he returns the world has changed.  I have stepped on another butterfly and the world will not be the same.  A bit of hope chips away.  

Every time one of these children die, they take a part of the universe with them.  How much they take depends on where they were in the child's life. The moms have a Grand Canyon, Winslow Crater, Pacific Ocean kind of hole in their lives.  The loss is never minor or insignificant.  It is gaping, hard to close and subject to multiple infections and complications. 

So we say goodbye to another child.  A family is decimated, the world looses amazing potential.   His last tweet:

If you do everything right, people won't know you did anything at all.

Gathering and Letting Go

 We are

essentially Hunter/Gathers.  We don't necessarily use those skills for the same reasons anymore.  It has been a long time since I went out and captured something for dinner.  However, I am on the hunt for cool and wonderful and life saving items and concepts and words and interesting things all the time. 

I love to watch and look and listen and discover.  It is something deeply embedded into my very being. 

One thing I gather are people.  People with interesting and varied lives. I love their stories and histories. I love digging deeply until I find the connection. The thing that makes us the same yet not the same.  For example, last night I had dinner with one friend and found out the server was the aunt of one of Mary-Elizabeth's friends.  I am sure we were at the same Graduation Party.   The threads that connect up are long and mixed up but they are real and are strong. 

We gather people all our lives.  The roll they play varies over the years but if we are lucky there is a continuity of great depth.  They know our stories and we don't have to explain too much. 

I also have hit a point in my life that I am loosing those very friends.  I learned of the deaths of two such people just yesterday.  Both were gone way before was necessary.  Both were in my life at various times and in various ways.  Those ways change but they were still there.  We still had a connection.  

This shedding of friends and family is much more painful then gathering.  I often wondered why Meb was so uncertain about making friends with her Cancer World buddies.  It is way too hard to loose people after 30 years of friendship let alone a couple of years. 

Here is to Alison Beck and Phil Caplan.  Both leaving in their 6th decade.  Way way too soon. 

The cure is such a problem...

She is baking cookies for Camp Sparkle. A summer camp for kids whose families have been effected by cancer.  The kids are going to the zoo today and it is the last day of camp for them.  It has been a quiet week at the Y in the central district, swimming every day, lots of art, lots of time in a gym.  It has been good. 

Today MEB is taking her last dose of Prenisone. Collective breath holding is happening.  She is for all intents and purposes done.  She is finished with this cancer stuff. She is "cured".  

Cured... a weird word. OED explination.

Middle English (as a noun): from Old French curer (verb), cure (noun), both from Latin curare 'take care of', from cura 'care'. The original noun senses were 'care, concern, responsibility', in particular spiritual care (hence sense 3 of the noun). In late Middle English the senses 'medical care' and 'successful medical treatment' arose, and hence 'remedy'.

So, she is cured.  She is doing so so well.  I cann't sing the praises of health enough.  Not everyone has such success.  So many have had little or no luck in the process. So many deaths, so many disappointments.  

Remember our friend Lulu? She fought to get out of the ICU.  That "cure" left her unable to walk or even have full use of her arems.  She was so weak after so much time in bed.  So she is back on her protocol.  First big round of chemo and things are just terrible for her. 

Here is the note her mom posted.

So Lulu Ysarua Martinez will not being going home today...she has not cleared enough chemo out of her so another night at the hospital....the pain is being managed so is the nausea....ortho came up and casted her legs for new braces to wear to walk....they will not be administering vincristeen chemo anymore and will be bringing a new chemo drug on board that is just as effective but it keeps your counts down longer ....has been complaining about side ache and trouble breathing her blood count also dropped so they will be giving her a blood transfusion shortly as well.....will due chest xray to make sure lungs are good.....will update later when I know more.....


She has a fever this morning. I can sense her mom's fear and terror.  Here she goes again.  This is such a hard battle. At some point you just wish there was a way to catch a break!!!!!

So Now What?

So, Mary-E had a discussion with Pearl Anne today.  She explained to her that she was at large and in charge.  She was up for the job and had done a really great job doing her work as the new immune system.  She explained that things were okay and she had been taking care of things just fine.  No need to overreact to every little thing.

  A scarf was not to be feared.  No reason to get all rashy.  A bit of butter on toast was nothing to worry about.  Sushi is really a good thing to be embraced.   No reason to get the gut upset.  There were going to be many battles to be fought in the next few months and years.  She was ready. She has had 2. 5 years to settle in and things are good. 

Now we wait.  Now we wait and see.  The last time the "last" dose was taken there was a party. There was a celebration. There was laughter and relief and joy.  I could barely get out of be this morning.  I have taken to watching "Keeping Up with the Kardashians".  
I have to get a grip.  I have to remember she is 30 months post transplant.  She has gone 30 months without a relapse.  We are half way to the five year mark. The point where most cancers are considered "cured". I should be relieved she has had no signs of any cancer.  

I don't know how to be relieved and happy about this.  Trust that is gone for good was so shattered with the last relapse. 57 months..... 7 years of remission.  I don't know when I will ever believe it is gone for good. 

As always, I will work through this.  It will be okay. I will be okay. She will be okay.  I just have to adjust my expectations and know that Okay is Okay.  I feel like we have been through a fire storm and and hurricane and then the tornado touched down to clear away the rest.  Just not sure how to recover from this.  Pretty daunting.  

I will sit with this for awhile and count my blessings and watch a few more episodes of bad TV.

Currant Lessons....

5 or 6 pound of these:

juiced makes about 5 cups liquid.

Then you add equal part of sugar.  

Boil for about 20 minutes and you get 

Each of these jars hold about a cup. 

So the process produced about 6 cups of jelly.  

The French are very into Currant Jelly and have a special preserve.  

As of 2012 the House of Dutriez in the town of Bar-le-Duc provides one of the very few hand-made preparations still on the market, la confiture de Groseilles de Bar le Duc (Currant Preserve). The traditionally hand-made product involves épépineurs or épépineuses (seed extractors) de-seeding the currants with goose quills to flick out the tiny seeds without disturbing the flesh of the small fruit. Sometimes sweetened jellies, consisting of mashed and sieved currants of a significantly lower cost and quality, appear on the market under the same name.


Mine was made by steaming the currants, letting the juice gather in the reservoir.  Sugar added and boiling in a French Jelly Pan stirred with Ms. Ferguson's Mother's Jam spoon. 

 Not a single goose quill was used to de-seed the berries.  I clearly disturbed the skins.  My berries were mashed and abused and oh my. 

Life is all about compromise. Nothing is perfect. Sometimes it has to be okay to have  a mashed and sieved life.

So Currently I am trying to learn from my Currants and simply carry on. 

She is down to One Last Sirulimus

Next week at this time the "Girls" or more specifically, Pearl Anne will be flying solo. She will be in charge of keeping all that invades from MEB's body. 

Protocol:  Immunosupressants - 180 days post transplant.

Mary-Elizabeth 31 months or about 900 days. 

She is almost done with this step, 24 months, three different kinds of suppressants  she is almost done with them.  I am currently not totally freaked out about it.  

I think we are all so tried of this it is hard not to just be ready to be DONE

I am feeling like the time as come to end this blog after 10 years.   Maybe I am done and leaving this writing forum will help me be DONE.  I won't quit writing, I will just do so in another place, another title, another forum.  

Maybe it is time to move on in the way one can  It is a tentative moving on, not really but sort of.  Hanging out in a different place in Cancer World.   As we all know, we don't ever get to really leave.  Now it is about managing the long term side effects. Kidneys, lungs, brain, menopause, thyroid, cataracts.  (These are not just stuff that might show up, these are guaranteed to be a concern. )  

So this morning, I will just drink my coffee.  Water a bit. Watch some plants grow.  Read my book a bit.  I will enjoy this moment, this instant. This bit of Seattle Sunshine.

 

Not

Why Mom's just don't get over the death of their cancer kids...

I am sure not everyone experiences motherhood the same way.  I know the instant I realized I was pregnant, I had a bond.  I was attached.  Of course she was sort of attached to me but I was attached.  It was like nothing I had ever experienced. My life changed in a way I didn't  understand.

I often hear about Mom's that had to "bond" with their child.  I wonder how that happens but I know even in those situations, the bond is there.  After we are clearly and permanently attached, then we have to become unattached so the kids can grow and mature and find their own lives. 

While the leaving the nest part is gradual, there are times the process is like lighting.  7th and 8th grade is one of the big pulling away times.  A time they are finding out who they are and how they fit with all of their friends.  It is a time many mom's mourn the loss of their babies but it is part of the process.  Little by little we let loose, they grow bolder, they develop out of family friendships.  It creates a place in their lives, creates a crease in the bond that allows a clean break to be made in a painless but significant way.

The entire process is mess up if at any time they enter Cancer World. Instead of a child gently pulling away, the Mother/Child bond intensifies exponentially.  All of a sudden not only are you caring for your child in an intense 24 hour a day, seven days a week way, your child is sick. You are on an adrenaline rush that lasts for several years.  No breaking away, no time to think, constant, intense caregiving.  It makes the bond so so much tighter.  Just imagine a strand of thread as the normal bond and a 10 inch cable made out of spider web as the bond created after Diagnosis. The cable eventually becomes the size of a 1000 year old Red Wood Tree. If they get better, the bond is always strong.

So here is the situation.  Child born, bond created. Child grows, child moves away in the natural course of things.  Child gets Cancer child moves back, no breaks not natural cut off, bond becomes super natural in order for the child to survive.  

But what happens if child dies?

Nothing is gradual. Nothing is normal. Nothing prepares anyone for the death.  It is like amputation without anesthesia.  And when it is done, the final most abhorant break in the bond occurs, Mom's are supposed to just go on. They are to be strong and brave and act like nothing happened.

Like many in Cancer World, we have seen the fall-out of the amputations.  I still hear from Guliany's mom in Turkey.  I hear from Shannon, and Kate and Kristi.  I see posts from Nyla's mom and Mario's moms.  I see the gut wrenching screams and pain and suffering of these Moms.  Jackie and Sheri and  Elizabeth or countless more.  Mom's that did all they could to keep their children with them.  Keep the bond going. Keep the connection.  

I don't perceive there is a difference in whether or not the child died suddenly or it was a long process.   They see other children with exactly the same flavor of cancer, same treatment and some kids do fine.  Some make it out alive.  They scream..... in pain about the unfairness of their child's death.  We need to let them scream and not make them feel like they are failures for not "moving on".

There is no way to figure it out.  Just don't ever assume that because the child died a year ago, two months ago or 40 years ago it is okay to ask how the mom or dad got over it.   The hole might have been walled off and there might be appearance of Normal but those parents could still use a hug. A hungry listening ear and understanding. 

So much potential. So much loss. So sad for everyone. 

If you ever doubted.....

Children are resilient.  Lulu is up, talking and here is the most recent post from her mom.  It really really does say it all. 

does anyone in the royalton are have a large pet carrier i could borrow...OREO is allowed to visit lulu but his FAT BUTT just broke ours beyond repair......

And by the way... I wish pets were allow to visit at Seattle Children's...

This crisis has passed.  The universe is good.

Back on the road to a cure.... again. 

The "Strength" Cancer Mom's Exhibit Is not What You Think it Is...

Stay Strong

Hang in there

You have an amazing attitude

Your such an inspiration

You can do it, you have done it before

Hold on it will be okay

You're so strong....

Your a trooper...

I read these statements over and over again.  

I don't know about other Cancer Mom's but it is all a farce.  There is nothing amazing about being a Cancer Mom.  We are not trying to show the world of an example of how much we can handle. We are not trying to get be a trooper.  We are doing what you see us do because we HAVE NO CHOICE!

We are doing this because we got the call.  The "we regret to inform you" call. The call that slammed our lives into another universe.  No chance to pack. No chance to organize. No chance to say good-bye to our lives.  One second life was just fine and the next we were on the other side of the universe having been pulled into the Black Hole of Cancer World. 

We are amazing. Some of us are positive. Some of us are just out there, screaming about what it is like to have a child with cancer.  Some of us retreat to some dark, sad, scary place and never emerge again. 

 I have to write.  I cannot keep all the anger, fear and frustration inside or I would just implode and become one of those really bad headlines. 

Nice Quiet Mom Explodes at the ..... fill in the blank.

Today there was some good news, someone is waiting for news, someone is remembering good news that has gone sour.  Everyone is scrambling to make them feel better while all knowing how fast it can all go very very wrong. 

These mom's are strong, they are able to hold on, they are the most amazing troopers you could ever know.  But their strength is a different kind of strength.  They are not lifting a million pounds or taking some force and changing the world, they are simply standing in front of the leaking dam and holding it together.  
They are using all of their strength of will to keep the dam from completely collapsing.  Some days there are more leaks then anyone can clog. Some days a nap is possible. The thing is they know they can never, ever, ever stop from holding back the dam.  

They looked away once before and took a little vacation or went to a play or went out to dinner or learned how to speak French. They did something fun and the dam collapsed.  

These are special people with a strength and deep core of power only few every have a chance to use.    But they are all looking for the same result.  A chance to have their child "return to normal".    

Here's to Normal.