Making Memories after Diagnosis

 There is a certain urgency when a child has been diagnosed.  We rush to do so many things. Memories have to be made and made NOW. 

What if these are the last of the memories? What if we don't survive long enough to go on our Make-A-Wish?  What if there is no time for  high school and college and marriage and the first job and the first car and the first broken heart?  What if? It is a panic that strikes the heart of each and every parent, grandparent, relatives and friends.  We have to make memories NOW.  We have to take advantage of this time, this moment, this......
everything. 

Well, take it from an expert, there are plenty of memories being made each and every moment.  Each day, each blood draw, each visit from the Child Life, Social Worker, Ukulele Guy.  Now granted not all the memories are good.  Treatment will erase many memories, but there will be memories. They will be a different kind and those that share them will be altered by the events. But  often there are bits and pieces of good memories.   

We are altered to our very core.  On a cellular level.  When your child faces amputation, total body radiation, red, blue, yellow chemo, and endless invasive procedures, bone marrow transplants,  it has to change you.  As you watch people you love perish and their loved ones writhe in  pain for moments, and hours and months and years, it is hard not to be transformed. 

Human beings are made up by the bits and pieces of who we are and what we learn and experience in life. We absorb things every day. We also are a product of what we remember.  Often we are a bit like Kimchi and need to sit about and wait until we are done.  But eventually there is a good end product.

The moment we hear the words "Your Child Has ____________________ we begin to incorporate the new "Memories" into who we are and will become.  

 It is a good reminder that we should value, treasure and work on this every single day....  

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.

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.

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. 

So how do we define it....

Prayer, chanting,  putting good energy into the universe, wishing, meditation, it is all the same. It might have a different name or method but it in the end it is the same thing. It is those moments when we speak to the otherness surrounding us.  Lots of people say they are non-believers but I have heard them curse and God is usually in the mix. 

I think it is just our nature to want to make sense of the world.  At some point I know I thought I had some control over how the world would turn, or at least the little bit I inhabit.  I can plant the right flowers, cook the right food or go to the right restaurant. I can save for college for my child and for retirement.  I can work hard and help people while making money.  I can take a few pictures and capture a few memories. I can plan for fun events and try to be strong when unfun things happen.  I can grasp things within my reach and keep the world calm and productive.

Ha.... Oh boy... was I so so wrong. Evidently the first time my child suffered with cancer was not enough.  I had to be taught that lesson again.  Nothing. Absolutely Nothing is in my control.  Well... the way I react and respond is in my control but other than that it is a free-for-all.  

Plan and execute the glorious front flower pot.  Watch it struggle and sag and fail. Reasons, many.  Should I have known that slugs and snails love, I mean, love the little petunias... Nothing eats Petunias.  Wrong, those are just sort of petunias.  They have been genetically modified into slug food.  In stead of glorious massive beautifulness. I have this is it. So.... what to do now. 

This is something simple. Something I know how to do.  I have a green thumb.  Hey look at this basket..

So, do I swear at the universe, mope because I have lost my green thumb or go try something really different...

We shall see, because in the end it is not up to us.  We have no control. 

I'm Stuck....

In a weird difficult and not the most healthy way.  I feel like there is collar around my neck and if I get too far away, I am yanked back.  I reach to the edges of the universe only to be snapped back in with great force.  

I push Meb out as far as she can go and she seems better at free floating than I am.  So, every single day, I try something to free myself from the deep gooey morass of Cancer World.   

List of things to do.  Then one appointment with the Kidney Doctor and I loose my ability to finish the simplest of tasks.  Going to try again.  
Stuff in places it should not be. No apparent reason, waiting for more analysis.  Possible way to help the kidneys be smarter, waiting for the end of Prednison and Siriolimus.  Best medication also lowers blood pressure so they don't really want to give it to her at this point.  Child would be a slug.

So More waiting.  

I am going to do some laundry, my mom is coming to visit and will be going to see Cher with Mary-Elizabeth. Should be a fun week-end. 

Hoping Status Quo is a good thing...

Meb is still working on getting better.  I am watching a very difficult recovery, even though it is a cold.  Like last time, it takes extra time for her to get better. 

Considering how much Lulu has been through, high fever, strep, full lungs, collapsed lungs, blown pupils, unhappy kidneys.  It is hard to know how her recover will transpire.   Very very slowly I am sure.  

Hoping today is a day of explosive ANC activity.

Lulu is still the same....pupils are responding but no body movement....her baby sister Rylee  and Payton have been by her side today...they have been talking and joking and crying out to their sister to give them a sign a flicker anything to show them she is there. This was hard to watch and hear...sisters fight...sisters bicker...sisters irritate the crap out of each other...today was humbling...sisters begging for their sister to survive to fight to live another day to go shopping.. fishing...and to braid their hair...they are here lulu waiting for you. ..give them a flicker...

Hoping

 for lots of rest and some stability for Ms. Lulu.  

Sometimes it only takes ONE

They talk about the power of one.  One person taking a stand, one person making a positive step in the right direction.  One prayer, one gleam

 of hope.  One. Two are better but then we can all wait for the next one to come along. 

So Lulu has one.  A single white blood cell.  Now it probably means more but as a Cancer Mom, one it enough.  The bone marrow is back working and making the ONE of the right kind. 

There is sign of life buried in the tubes and beeps and whistles. 

Lulu Ysarua Martinez pupils reacted to the light...eeg showing movement it's slow but better then yesterday...all sedatives are off..kidneys are struggling but putting out...xrays showed a little improvement on lungs and we have 1 white blood cell....doctor said she is still very sick but these are all good signs...she hears the prayers and is feeling everyone's love.. we read your posts and comments to her ...she is fighting...she is fighting... she is fighting....come on lulu shine on through..

ONE, sometimes it all we need. One small step. One small movement. One..... step towards a very very very long recovery.

Sometimes things just don't change but then that is good???

Lulu Ysarua Martinez witching hour as the nurses call it started at 3:30 for whatever reason that's when it begins didn't crash but scared the ba geezuz out of the staff...current situation lung xray at 5 am showed no improvement and pupils still full dilated and unresponsive will update when I can it's just hard because of all the stuff going on...we as a family are tired and mentally drained but we are hoping for a miraculous day....go lu!!!

No real change. No improvement. But then things are not worse.

"Not Worse" is sometimes the best it gets.  There is often lots of discussion about the extraordinary efforts made to save a person. Lots of docs doing making lots of heroic decisions. But how do you not do it with a young previously healthy person. 

My dad was afraid the medical system would geta hold of him and would and he would not be able to make them stop.  This is not that situation.  


Those of us in Cancer World are lucky to have the resources we have.  The care and treatment for our kids at the Cancer Centers is frankly impressive and amazing. The technology, the training, the resources we have to help our children needs to be applauded. 

So today is a waiting day.  I hope it become a healing day.

  

Life and Death keeps happening.

I was trying to figure out how to proceed yesterday.  Kid has been sick, cough, really bad cough, ache body, not out of bed.  I had a touch but with some ossillium and some long hours of sleep, I was able to knock it back.  Blessings of having a completely strong, healthy immune system. 

So she is not Emergency worthy. She should not be a Seattle Children's spreading this thing and is NOT that sick.  She has a cold.  So on day 5, I make an appointment with our family practice.  Nice new doctor.  She really is and it takes her a while to realize we aren't kidding when we start to say things. 

Yes, leukemia twice, Double cord blood transplant and menopause.  Port, blood clot history.. she feels the thyroid and says it feels fine.  We mention there is not working thyroid.  I am sure she thought we were (Secret Weird Patient).  So she suggests and X-ray, I think it is over kill but after a call to the SCCA they want one. We ask about going to Children's because it is close but no.  Then they ask if they took a nasal swab.  Of course they didn't.  They don't do that in real doctor world.  

So basically we failed to get the job done. I can see the call is coming today to go back to either Children's or SCCA and get swabbed for Strep and to snot in a cup and there will be cultures and more investigation.  Her heart rate is 122 and that tells them her lungs are working. I don't want to get too close to the hospital because we know what happens there....


So in one world I have a 21 year old with a cold.  Feels miserable, just home from college.  But because she has spent 10 years in Cancer World, I take a kid that clearly has a virus to see the Doctor.  

In Cancer World, it is serious.  It could be, pulmonary embolism, weird pneumonia and let me tell you.  They will culture and swab and image her to death.   So since we have one foot in and one foot out... today we make the calls and figure out what to do.  
She slept last night so I think she will be fine.  But then I am reminded how fragile these kids are and how a cold can take you down and not in a good way. 

So while I am whining about this stupid cold and how inconvenient all of this can be Momcology brings us Lulu.  A month ago she was going to prom, she was graduating she was spending time with her family. 

5 days ago she was sent to the ICU with high fever and poor lung stuff and she is so so sick.  This was her mom's post this morning.  


Lulu Ysarua Martinez Has Collapsed Lungs And crashed at 430..they now have her on stomach and adjusted ventilator to keep lungs open longer and less pounding on the lungs which is causing inflammation. .doctors said next hours critical. ..looks like to save her she will have to go on the ecmo machine. ..they told us she doesn't have the capabilities to heal on her own ...will update later.

I don't know these people, I will probably never ever meet them.  I will however remember that there are two paths on this road of life.  While I feel we have missed out on so much because our life has been stagnate and boring and complicated by this thing called Cancer and life has passed us by.  I will also remember Death has passed us by.....

Prayers/Chants/Rants/ for Lulu.... A lovely lovely young woman who wants to live her life like a normal person.... No on her stomach in a hospital bed surrounded by monitors and other such invasive things.  

To Vaccinate or Not To Vaccinate... WE have the luxury of asking that question.

Rotavirus vaccines are being rolled out across Africa at a remarkable pace thanks to the support of the GAVI Alliance. To date, 21 African countries have introduced rotavirus vaccines in their national immunization programs (NIPs), of which 17 were supported by GAVI. PATH, through the Vaccine Implementation Technical Assistance Consortium, has successfully assisted and supported GAVI and countries in the design, planning, introduction, and/or integration of rotavirus vaccines. 

It baffles my mind that there are people out there that choose deliberately not to give their child the best possible chance to survive and grow into a healthy child.   The article above was posted by Kathy Neuzil MD.  She works for PATH.  They work on educating people around the world on the purpose and need for vaccinations.

I think of all the people that died of small pox, and suffered from Polio or died of Whooping Cough.  It just makes me crazy. 

I know there are lots and lots of scared moms that are sure vaccines cause autism.  There lives were forever changed because of that diagnosis and they want an answer.  I certainly would want an answer but over and over again the link is not valid.   Unfortunately many of the times that Autism Spectrum disorders manifest themselves at some point during a child's development, chances are there is some sort of vaccination that has happened. 

Now I am not a medical professional, I don't have a degree in Public Health, I had the mumps, measles and chicken pox and lived to tell about it.  I was also vaccinated with everything that was available.   I hated each and every time ME had to have her shots.  I started making her Dad take her to those appointments.  But

I also know what it is like to watch a child suffer and struggle fighting a disease.  Why would anyone not prevent a disease if they could.  If there was a vaccine to fight childhood cancer, I would be the first in line to make sure every child received that gift.

I can't talk about this issue anymore.  Neither can I talk about guns.    

I have seen too much death of young innocent children and the destruction is does to their families.  

Just so we are clear, I gained a new appreciation for donuts and Spam after our trip across the country.  I also craved fresh veggies and green green salad.  

Multiple Uses for Weird Things in Our lives.

I find things that have one purpose and often they morph into something else.  Something completely not related.  Take the china mug for instance. 

Somehow over the years, my mom has come to want her coffee hot.  She does not want it to be microwaved if possible. She wants it hot. She wants it piping and strong and so she has it that way.   Thus the saga of the China Mug.  Not pottery, but china.   Bone China. Best possible quality.   She is so certain as to what she wants, she leaves a couple of mugs at our house.  She travels with her mugs and she looks for them always. 

China Mugs are part of the Wishing Rock Project bags.  May seem silly, such an item to be tucked in a bag with other much more practical things.  Trust me, it is hard to have a hot cup of anything at Seattle Children's.  The mugs are a symbol of trying hard to hold on to something civilized during a very difficult and de-humanizing time in every one's life. 

Teresa has been given a cup of tea in the front hall of New Waterford General Hospital. The head nursing sister was the first to come across her. If it had been that nice young intern from away, the hysterical woman would have been given a shot in the vein instead of a cup of tea. The head nurse, however, has noticed whether they drink the tea or not, the mere act of reaching out to receive something that must not be spilled seems to have a profoundly calming effect on all but the downright insane." Fall on Your Knees by Ann-Marie Macdonald 

The Mug is so much more. So much more. But then many things are. 

I was working in my kitchen and it was time to run the my salt cellar through the dishwasher.  I decided to figure out what it was.  I have used it for years.  I found it at Goodwill and it is a cool piece.  I just never could figure out what it was.  Well I have been using a container used to stain slides.  The wire to lift the insert out is missing. 

So now I am wondering what has been in this thing!!!!  I have used it for years.  How just creepy and scary is that!!!!!.  Is it contaminated with some horrible stained disease?  Have I made people sick?  It is too late now?

Just some of the questions I have. Just a few of many many that run through my brain every day.  

Okay.  Time to go wash the mugs for the bags to be delivered this week for Wishing Rock and to double wash the Salt Cellar. 

Waves of Pain When a Child is Gone

Facebook has created a place for people to share. They share what they are eating, cute kitten videos and now the pain they experience when a child dies of cancer. 

We have been lucky enough to avoid this most heinous of losses but we always know it is there. It hangs around. I have watched it so many times these last few years.

I remember being on the floor when Meb was in treatment.  Sarah was dying. She had lost her battle with a nasty form of Lymphoma.  On the old floor people were moved to a private room and then a one on one nurse was assigned.  Then the people start to come and say good by.  We all watched as streams of young adults and family members came and went, beyond visiting hours.   

Then the Father showed up.... The hospital helped him come but he clearly was very uncomfortable.  He was standing in the hall one day looking very lost.  I approached him and told him I did not know his daughter but I could tell from what everyone had said, she was a great person.  Her greatness was only validated by all the people that were visiting and letting her know she was loved. 

He looked at me and told me there was going to be a miracle. They were going to fly her to another hospital and she would be well again. I put my hand on his sleeve and he simply grabbed me and I hugged him with all the strength I could muster.  He continued to hold back his tears and fear and terror.  A terror I can only imagine but I have felt emanate from so many whose children are now gone. Rebecca, Mario, Joseph,

Jaxon, Ruby.... this list goes on. 

Micheal was laid to rest yesterday. Allie will leave this planet soon.  Katie and Daniel are moving forward on their bucket lists with great alacrity. 

 It never gets easier. because there will be more.  But the miracles will continue to happen.  Really smart people will keep working to fix these kids.   And we will continue to believe it will be better someday. 

The Taper Begins.

Lots of time between now and the end of July for the Sirolimus taper. Prednisonesits around until the first of August.  I thought I would be ecstatic.  I am just a bit worried.  Sort of like a mom sending her child out to school for the first time. 

Since January 24, 2012 the new cells introduced to Mary-Elizabeth's body have been discouraged from working at 100%.  The docs use some kind of suppression.  If they let them just act like an immune system by themselves they attach the host body.  

Pearl Anne has been very willing and able to go on the offensive on a number of occasions.  She had a wild and aggressive spirit. This has caused some serious problems in the past but we are hoping she has settled into her home.  For the last 5 months, there has been no serious flairs of GVHD and there are not too many complaints about not receiving lots of Prednisone to keep things tapped down. We shall see.  Tomorrow Meb will skip her 1 mg of Sirolimus at 8 am.  It will be a start to the taper.  We are crossing our fingers and toes and saying lots of prayers to the universe and all the component parts that it is okay. 

It is a nasty drug:

Sirolimus may increase the risk that you will develop an infection or cancer, especially lymphoma (cancer of a part of the immune system) or skin cancer. To reduce your risk of skin cancer, plan to avoid unnecessary or prolonged exposure to sunlight and to wear protective clothing, sunglasses, and sunscreen during your treatment. If you experience any of the following symptoms, call your doctor immediately: fever, sore throat, chills, frequent or painful urination, or other signs of infection; new sores or changes on the skin; night sweats; swollen glands in the neck, armpits, or groin; unexplained weight loss; trouble breathing; chest pain; weakness or tiredness that does not go away; or pain, swelling, or fullness in the stomach.

Sirolimus may cause serious side effects or death in patients who have had liver or lung transplants. This medication should not be given to prevent rejection of liver or lung transplants.

There is a part that wants things to continue but this is the first step towards the real end. The real time when we are done. When the trip is almost complete. 

In one day, I have become one of those worrying moms that are so sure the sky is falling.  I have seen it fall before so this is a bit scary.  

She looks good, she feels good. She is making great progress. She will be fine. I will be fine. Everyone will be fine.  

We will be fine.

When do we stop treating..... When are we done?

I didn't realize that when we were first in Cancer World we were just on the fringes. Mary-Elizabeth had High Risk ALL with never confirmed but treated CNS involvement.  She did the 2.5 years, 12 doses of spinal and cranial radiation.  The whole ball of wax.  

I met someone I had known in a previous life and she was the first child I knew that died from this most heinous disease. But she was really the only one.  As I look back, I know we sort of sailed through Cancer World Part I. 

We wondered about people, we had some connections but not like now.  When Meb relapsed and we started doing serious hospital time and a transplant, we really were in the thick of things  We were introduced to an entire other world. A place of deep darkness and horrible results.  Heart rending darkness.  We had been in and out before, a day, may three or four.  Now we were doing months.   Weeks and sometimes it felt like years.  It had a whole new intensiveness. The difference between John Glenn flying around the world and a moon landing. 

I don't ever remember a discussion in Cancer World I when there was a discussion about being done with treatment because there were no more options. I never heard the words Hospice, Palliative Care or words like End of life care.  Because of my relationship with one of the providers, I knew it happened.  Tracy would call it a "do over". 

This time has been different.  I don't know if it is because we spent time with sickest kids, have reached out more, Facebook, or what but there are lots of kids dying and getting ready to die.   Many children just run out of options. 

Their parents are in such agony.  When you start you are told the odds.  Even when they are not what you want to hear, you know there is a chance. There is a possibility, there is hope, there might be a new discovery.  There might be a "miracle".  There might be..... our world if full of might be's.  Might be a new study. Might try a new drug. Might be......  

In so many cases there are no longer any options.  The cancer wins.  The brave decision is made to stop the treatment.  There will be no "Cure". The cancer wins.  

I have no way to even think about making that decision.  My daughter has been very clear that she is done.  She won't do all of this again. She is a full fledged adult and she is in charge of most things in her life.  She will not submit to treatment.  She lives her life with that in mind.   It is hard to think about but then it is easier than having to make the decision as to what to submit a child to in treatment world.  

We give them poison, we bemoan the fact they cannot have more poison because the counts aren't good. We watch the door close on the radiation chamber and are glad the protocol is going forward. We grind, conceal and give them endless amounts of drugs and potions.  We do anything anyone suggests to save them.  To let their lives continue. To let them return to normal.  Does it ever?


Done, when are we done?  I don't think we ever are done.  Done is an illusion. We just reach the end in different ways. Some return home and try to return to normal

. Some stop all treatment. Some watch a child slip away.  Some bury their child and try to go on with life.  


I don't know even what to say at this juncture. I just know what I can do.  I can try and be as supportive and listen to those at different stages and maybe be a shoulder.  I will try never to pass up an opportunity to do something positive for someone in pain.  I will never forget that we are all done at some point and we need to make this time of value.