Rainy Day Contemplations

First, I hate to tell everyone, St. Patrick's day is not until tomorrow.  I don't care how much green you wear, how many parades you have, how many fun runs, it does not count!Okay that is off my chest.

Ss some of you might know I had an experience around Christmas that made me want to reach out to some new Cancer Kid families.  They were unfortunately introduced to Cancer World on Christmas Eve. 

I searched my brain and began to put some things in a bag.  I thought long and hard about what those items might be.  After two stints in intense Cancer World, several years apart it took a while.  I had learned a lot between treatments.  There is lots of "stuff" available at Seattle Children's but not always what you really need.  

We ended up spending lots more time inpatient the second time.  Months and months at a time.  Did I mention months and months and weeks and more fortnights.  So the gathering began.

1. A multi-useful bag.  As a parent you are always hauling around stuff.  Cloths, clean and dirty, stuff to go to the shower.  Extra stuff from the room.   A good bag is necessary.  

2. A china cup.  Months of paper cups are hard.  It feels so so institutionalized.  Nothing like that morning cup of coffee from Starbucks in something you can warm your hands on.  For a few nano seconds it is possible to pretend you are having a moment of peace and quiet at your own home.  Also I was moved by this passage years ago.
"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 

I also let the new families know there was instant hot water from the nurses and they had tea in the nutrition rooms for the families.

3. A Starbucks card to get the families started on their way to being Gold Club members.  Oh trust me during admissions food and drinks from Starbucks is a life saver given the lack on going lack of nutrition at Seattle Children's.

4. A small shaker of Cinnamon Sugar.  Cinnamon settles the stomach and helps when there is not food from the kitchen because they are closed and your child has been NPO all day because the procedures are backed-up. (Happens all the time.)

5.  A magazine.  During Cancer Treatment the most any parent can read is a page, with lots of pictures.  I think this is one reason bible scriptures are helpful. Short, and to the point.  Granted I did read House of Seven Gables and War and Peace but that was just because I am weird and it took me a long long time and I had started them before.

6. A bead. A small bead that will fit on to the parent ID badges, the necklaces we all wear to ward off evil spirits.  Cora Breuner took a bead off her own necklace and gave it to me during a very scary dark time.  I have handed several to moms in crisis.  I left one with my friend Elizabeth from NJ and with Carol whose daughter survived a transplant for lymphoma.  Some of the kids get beads of courage but the Mom's need them too.

7. A rock.

A stone, a little bit of something to grab on and place and focus on during some of those awful times during the process. The pain, the despair, the fear and the agony that is transplant and cancer treatment.  A stone. A special stone. One that shows a bit of interruption in life.  Not a big one. A little one. One that permeates everything in your life but still only a disruption.  This stone had a disruption but was able to keep it together and regain itself.

8.  A few pre-stamped note cards.  Pretty happy ones. Ones that can be used to thank all the people in the family's life for all they will have done for them.

9. A small warm fleece throw.  Hospitals have blankets but they are nasty and scratchy and smelly and need I go on?  Something soft and warm to gather around your shoulders at 2:00 am is a good thing.

10. A wind chime. Oh yes, the chime.  We didn't stumble on to these until our first night of our first month of Blue Thunder Jail.  Mary-Elizabeth had 6 various IV pumps, we shared a room with two other kids and their pumps.  One night the pumps alarmed every 15 to 20 minutes.  I still can hear the noise in my head.  I came unglued.  The next morning I went to City People's Hardware store and found the smallest, good sounding chime.  Not big, not noisy.  Pleasant tinkling was the goal.   We installed it and things got better.  I think the pumps were feeling unloved.  Our chimes were with us for the entire time of the Transplant.  They were placed for either maximum sunlight or pump duty.  They have been passed on to another patient that will be spending months in the hospital.

Then there is what ever. What ever strikes our fancy.  Maybe some nice cream or hair products. Some shower shoes, a list of places that deliver real food from the outside world.

I approached Seattle Children's Guild Association and this was their reply."

Hi Sally,

 

I hope you are doing well. I am sorry to be getting back to you nearly a month after we met.  It has taken me a while to reach out to different individuals to seek their input.

 

  We talked about the bags and the challenge with storage as well as the contents not necessarily being the right fit for all families.  We think it is a lovely and generous idea, but it is not something we are able to accept and distribute at this time.  I know that every item in the bag is meaningful to you, and for good reason based on everything you shared with me at our meeting.

 

I have reached out to other staff members at Karyn’s recommendation to seek ideas for items that would be most helpful to patient families should you be interested in changing direction of your support.  The response so far has been that food bags and gift cards are the greatest need – which is currently a project that we are doing called Operation Family Care (see attached flyers).   We would welcome your support of these efforts if you were so inclined.  You do not need to be a guild member to participate.

 

Regarding the Wishing Rock Guild, we haven’t processed your application or membership checks as we would need to determine a different project than your original intention. Should you desire to raise funds for the cancer program at Children’s, we can talk about different funds that may interest you in supporting.  

 

Is there a good time Melissa and I can call you and discuss other ideas?  I know you feel strongly about your bags and thus may not want to participate in any other efforts. If that is the case, we totally understand.

 

Thank you Sally.  Hope to hear from you.

 

Aileen Kelly

Executive Director | Guild Association

 

 

 

Not to be dissuaded we are going ahead.  I think Aileen is right.  This should not be a project for Seattle only there are other very deserving families in pain, not just here.

As the rain continues in that steady drippy sort of way that is so Seattle, I will start the foundation paperwork, Work on an agenda for our next meeting on Wednesday the 19th and carry on.  Seems like the right thing to do. Please contact me for more information.

All things come to those that wait and wait and scream...

Chef Walter is leaving Children's hospital.  I am sure he is just retiring and taking a big fat pension with him but he is leaving.

Now they have a chance to find someone that cares about healthy food.  I wonder if they will do it. The listing is pretty interesting.  They are not looking for real chef..

Associates Degree
Three years of experience
Experience with whole food cooking.

Heck, I should apply.  I wonder if they need to know how to wash lettuce. 

Our Small Circle of Moms.

We all know that Meb has a dead part of her bone.  She is thankfully not in pain and her steroids are going down but it is a problem.  It is not a huge, pull it out and replace it problem but it is of "Grave Concern".  So how do we address it you ask. 


Some swimming, some gentle walking, some yoga, some high calcium rebuilding chews, do-able stuff.  So yesterday we went to Seattle Children's before even the Valet guys were awake, (7:30 am).  We settled into the Physical Therapy waiting room and it was very quiet.  One poor child with over active nerves in her ankle beginning and intensive 2 week rehab program, and a Chappy kid. 
Dr. Chappy Conrad, is a gaulky awkward guy that takes out bones and rebuilds them in kids with bone cancer.  You can tell the kids, bald, braces on their legs and usually a spot that just won't heal on a long incision.  We were all chatting and in came a child, 6ish, with a pregnant mom. 

Child sounded like a TB patient with snot going everywhere when he coughed and sneezed.  We did not stay but were luckily leaving.  I suggested to William's mom they get into a safer place and the snotty child's mom was not happy.  "He has asthma, he is not sick!"  I left.  I did not have a chance to let her explain how stupid I was to doubt her judgment.  Now, I would have loved to talk to her about donating her cord blood as she was obviously pregnant but had to let it go.  We were off to another clinic, not at the hospital.

Here is my general apology.  I am so sorry I hurt your feelings.  I would do it again. I won't expose her to anything if I can help it.  I certainly am not going to sit in a small confined space with a leaking child. 

We all have to do what ever it takes to keep our kids safe.  Cancer Moms are a crazy bunch when it comes to such things.  We live every day with huge amounts of fear and trepidation.  The smallest thing can push us over the edge.  And once we are over that edge, we don't recover very well.  We have no reserves. 

So if you encounter us and we shun you with disgust, please don't take it personally.  Now I have to find my dinning room table.   

If you are from Canada

If you are  from Canada and your visiting Children's Hospital, guess what they feed you for lunch.

NOT HOSPITAL FOOD

Shame on you.  If you can order in for guests, then you should order in for the really important people, the patients.....

Level Six... Heretics...

In the sixth circle, Heretics, such as Epicureans (who say "the soul dies with the body" trapped in flaming tombs.


I am so so confused but then I must consider the times.  Being angry, sometimes rightfully so, put you in level 5 .  Heresy was a big deal in the 12th Century.  But boy do I know about Heresy....Or like I prefer to conicider it, contradiction of those who perceive themselves in power.

What a surprise, some docs think they have been imbued with great powers and should be revered.  An even bigger surprise is that I don't see it that way.  Lots of parents now days don't.  My mom still "listens to the doctor"  and to some extent so do I.  I do consider their opinion and often even do what they say but they have to provide a good explanation first.

Cancer Mom's are really the ones that know their kids.  They have been there from the beginning and they are the only real constant. Some times they are lucky enough to have someone else on the "team" that stays with then during the entire process.  We have had Karyn Brundige... Fabulous person.

Because we have this very complicated and long process, the Mom's are the only ones that know. Really know. Each child has a "note" that follows the child and explains everything but trust me it is so long and in such tiny print no one reads it any more.  More then once I have used the blog to help someone find the right page to read for a date. 

Sometimes the docs and the others need to be questioned and corrected.  Sometimes it works and sometimes it does not... I did let Paul Carpenter MD, PHD, MRI, CAT let Mary-Elizabeth have only 20mgs of Prilosec but he had a good reason.

Oh, secret Heresy is the worst....  The one at Children's is that they feed the kids three meals a day plus snacks.... HEE HEE... don't tell or you will end up on Level Six with me.

Level Three..... gluttons: First Treatment Way too much Chemo

The "great worm" Cerberus guards the gluttons, forced to lie in a vile slush produced by ceaseless

 foul, icy rain.   Just as lust has revealed its true nature in the winds of the previous circle, here the 

slush reveals the true nature of overindulgence in food and drink, but also other kinds of addiction.


Yes, been here.  Felt the foul, icy rain, the mud.

It all becomes way too much and one feels trapped under the paper, the internet research, the meetings and conferences the Waiting.  works, the endless blood tests, the endless..... shot, pill, procedures..

There are time we get to escape but sometimes it seem and is endless.  

There is so much about having a kid with cancer that we don't really understand and maybe go over board on things.  

We all have our "cause".  I am about the bad food service to the children at Seattle Children's Hospital.  Some are about the fact their child only has home tutoring for 18 weeks but cannot be in school and so she looses a year of school.  Some are bound and determined to remind those that park in the parking lot, they are a huge gigantic mega truck and not a  compact.

I have to admit to drinking way too much coffee.  It might have been a way for me to give myself some time away from the room where unspeakable, horrible things were being done to my child. 

We all have addictions.  Overzealous obsessions besides Purell and over cooked food.  

I have cut back on coffee.  I think it is a start on the way to escaping the icy rain and slimy.

Wonder what the Pope did?