Sunday, June 23, 2013

UPDATED POST: do what you do...

UPDATE 6/23/2013

hello, you gorgeous loving readers, you!  i don't have it in me to write a whole new post about "my" caringbridge kids and families, but there are some updates some of you may appreciate.

sadly, ashley riemer died yesterday afternoon, but on her own terms -- at home, with her family.  her decline was rapid, such that some may call it a blessing.  she was up and about, even out shopping earlier in the week, and then on the 20th was brought low by pain.  hospice was ready, and her pain was managed.

she was elven; she was on the cusp of womanhood;  she was brave, ardent, angry, faithful.  she knew long before the blood tests and the bone marrow biopsies that this was the last fight.  i'd love to have known her at 90 -- i imagine blond and pink pig tails, cherry red lipstick and those cutting, pixie eyes.

her mom wrote, at the end of her post notifying everyone of her passing:  "Ashley donated her body to Georgetown Medical University as she was a lifelong learner."  damn straight.  good on you, ms. ashley.

brayden is on his make-a-wish trip, and enjoying it thoroughly.  like so many of my heroes, he is keeping those he loves and who love him, in laughter, no matter what.  his mom, maranda, writes:
I hope you all have had a nice week. I am sorry I have not updated, we have been so busy. The boys go, go ,go and then they drop. Brayden is totally in love with Blue Skies. He now is asking me to buy him, a jacuzzi bath tub- which he does not think would be too expensive. He also wants a golf cart- which he said should probably only cost about 5 dollars. 
brayden and his buddy nolan (nolan had to be admitted yesterday
for pneumonia, so good thoughts for brayden's best bud)

that's the end of this update.  i've discovered that crying clears up my vision much longer than eye drops.  keep brayden close to your heart, and ms. hannah, too, as she is in the midst of the planned destruction of her immune system prior to receiving what the whole darned world hopes is a life-saving bone marrow transplant, the gift of an anonymous lovely, adorable man in europe.  her mom updated this morning:

One week down in the BMT. Hannah's doing better thanks to Reglan/Benadryl & Zofran. She will get Cytoxan and ATG today. Please continue to pray she tolerates with no/minimal side effects. 

END OF UPDATE... thanks for tolerating my lazy blogging.


To begin with, and this is especially important for those of you visiting the blog for the first time, I found the doggone ankle brace.  Rather, Fred found it.  There are certain loads of laundry too heavy for me to transfer to the dryer, so he's frequently in receipt of the cryptic request, "Please transfer." Well, as he transferred one bedspread, guess what fell out, now not only a boon to a cracked ankle but also sweet smelling and spotless?  Yes, the thing that mashes all those plates, pins, and screws back into non-jostling positions.

The other thing a new visitor to the blog should know is that I (Retired Educator, aka profderien, alter ego of one Bianca Castafiore, the famed Milanese Nightingale -- oh just read "About this Blog" over in the right hand margin...).  Hellfire. Choo?  Train of thought?  Ah, yes.  I follow, at any given time, four pediatric cancer patients, patients that are in the beginnings, middlings, and endings of their journey's trek.  My means of following them is respectful and done primarily through a wonderful creation and organization called  Support them if you can, and definitely check them out.  Remember that CaringBridge is there should your family ever suffer a medical crisis or catastrophe and need a means to communicate news to family and friends -- as well as to blog and vent, and cry and beg for prayers, and send complete strangers into whirling dervishes of ecstasy the day you are declared NED -- No Evidence of Disease.

But give it some thought.  For parents with kids given tough diagnoses, it's generally not a good sign for there to be extensive or regular blogging and journaling on CaringBridge.  Who'd have time, what with time proved so precious, and the days being near perfect now that the little ones are getting better?

All of which means that bad news is coming in, thus far, in twos.  I'm bewitched into the "it comes in threes" belief, and am waiting for the third bit of sadness.

In the middle of it all, great joy!  For Kate McRae, another completely clean MRI of both brain and spine.  "Miracle" is not much in my vocabulary -- you'll note it's even set aside here with the embracing arms of quotation marks.  This may be one, though.  There's no way this child should be alive, and as untouched by the ravages of the chemo and radiation as she is.  Oh, she was touched -- there are struggles, daily, and sadness at what she cannot do that she once could, but she's ALL there, is Miss Kate McRae.  She is every bit herself, and we're better as a species for it.

Kate McRae
Why don't the doctors listen to the mothers?  Or are there so many mothers tugging at the pediatric oncologist's hearts, telling them they "know" something is wrong, the cancer is back.  They "know" it but the protocol for the chemo, or the radiation, or the study, or the only schedule that insurance will pay for... is every 3 months, or sometimes even six.

Maranda has been struggling for so long now, her son Brayden cruelly afflicted with Metastatic Anaplastic Medulloblastoma.  He has relapsed several times.  And now has again.  I am trying to arrange a meeting with her, as we both live southwest of the Lone Alp, but perhaps this is not the best time to pop in for a coffee.  She has a toddler, is a single, unemployed mom.

Anyway, for you to stare at, enjoy, and contemplate as you meditate and pray for Brayden, here is a recent photo of the little guy.  I love his face.  It's grown up but it's tricky.  I bet he's a trickster... Peace on you, Brother Brayden, and on your mom Maranda, and on his favorite little person, his brother Mason.

Now, I do have a thing or two to say about Brayden and Maranda.  They treat Maranda, it sounds like to moi, somewhat badly as she struggles to get to the clinic as scheduled, without daycare for Mason, and having been pegged an overanxious mother.  She asked them repeatedly to move up the MRI and was pretty rudely brushed off, with suggestions for therapy for anxiety or some psycho-crapo get-her-off-my-back shit.  The day of the MRI, same day as Kate's, his oncologist was out of town.  After they got home, Brayden, who has trouble controlling his bowels, needed changing and Maranda set about doing that... and in the process, his leg bent the wrong way, and broke, badly.  So back they went to the hospital... and she exhausted, and he in pain, and she could not stop worrying about the MRI results, even with the drama of the broken leg.

So a nurse finally prints out the MRI report and hands it to her.

That's how she discovers Brayden has indeed relapsed, and that's how that nurse got herself a few precious minutes of not being stressed out by Brayden's Mom and her worry-wart ways.

Maranda is smart as a whip but waited for the oncologist's return, and her phone call.  Today.  Monday.

Brayden's cancer is back.Dr A called me this afternoon. I will be going over options with her tomorrow, she is even calling St Jude's and MD Anderson, please keep praying for God to heal Brayden. I don't want just a little longer here with Brayden. I want a lot longer and I know that's not promised to anyone but if you could all please pray for that I would really appreciate that.

Jeez life is painful sometimes. It is worth it though, I feel like my heart is broken. I will update tomorrow with whatever treatment is decided.

The other person who is in decline is no longer a child.  She had leukemia as a kid, and relapsed once.  Then, last year, first year of college, it came back.  She only qualified for a certain highly experimental protocol, and I think she knew from the beginning of this latest round in the fight, this last trek as a pilgrim, that this was going to be her death.  But it is coming now so fast and furious that my heart breaks at the thought that she might not be ready.  Which is pretty freaking presumptuous of me.

All I can do is show you the picture that made me fall in love with her, and tell you that Ashley is now suddenly on hospice care and in severe pain.  She is from a very religious and faith-driven family and community, and I hope that is a source of immense and unending comfort.  Throughout the past months, she's pitched a fit to be able to attend her Japanese classes, and has kept the state of her coiffure right where it should be -- at the forefront of everything.  She's a beautiful nymph. You'll see.  You'll fall in love, too.

Ashley Riemer, September 2012I write tonight with the news of the biopsy results from last week. Ashley's cancer in her bone marrow is showing 70%. This is very high and alarming. Ashley is now receiving Hospice care for pain. 

Ashley Riemer, May 2013

Prayer of Pan Cogito – Traveller

Thank you for creating the world beautiful and of such variety
And also for allowing me in your inexhaustible goodness
To visit places which were not the scene of my daily torments

- for lying at night near a well in a square in Tarquinia while the swaying
bronze declared from the tower your wrath and forgiveness

and a little donkey on the island of Corcyra sang to mi from
its incredible bellowing lungs the landscape’s melancholy

and in the very ugly city of Manchester I came across
very good and sensible people

nature reiterated her wise tautologies the forest was
forest the sea was sea and rock was rock

stars orbited and things were as they should be – Jovis omnia plena

- forgive me thinking only of myself when the life of
others cruel and irreversible turned round me like the huge
astrological clock in the church at Beauvais

for being too cowardly and stupid because I did not understand
so many things

and also forgive me for not fighting for the happiness of
poor and vanquished nations and for seeing only moonrise and museums
- thank you for the works created to glorify you which
have shared with me part of there mystery so that in gross conceit

I concluded that Duccio Van Eyck Bellini painted for me too

and likewise the Acropolis which I had never fully understood
patiently revealed to me its mutilated flesh

- I pray that you do not forget to reward the white-haired old
man who brought me fruit from his garden in the bay of the island of Ithaca

and also the teacher Miss Hellen on the isle of Mull whose
hospitality was Greek or Christian and who ordered light
to be placed in the window facing Holy Iona so that human
lights might greet one another

and furthermore all those who had shown me the way and said
kato kyrie kato

and that you should have in your care the Mother from Spoleto
Spiridion from Paxos and the good student from Berlin who
got me out of a tight spot and later, when I unexpectedly
ran into him in Arizona, drove me to Grand Canyon which
is like a hundred thousand cathedrals standing on their heads

- grant O Lord that I may forget my foolish and very weary
persecutors when the sun sets into the vast uncharted
Ionian sea

that I may comprehend other men other tongues other suffering
and that I be not stubborn because my limitations are
without limits

and above all that I be humble, that is, one who sees
one who drinks at the spring

thank you O Lord for creating a world very beautiful and varied

and if this is Your temptation I am tempted for ever
and without forgiveness 

Daisy Merrick

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