Thursday, March 27, 2014

Busy Busy Squirrls

When I was a kid we had a house in Spirit Lake Idaho It was a great house.  We had a big lot with three giant trees on the other side of the street with big maples on our side.  We also had a sour cherry tree on the side of the house but mom sort of hacked it to death so she could see the lake while having coffee in the morning. 

One day we happened upon a large bag of nuts and Mom dumped them at the base of a tree.  We left to do some errands or go swimming or go visit Grandma and Grandpa on the other side of town.  When we came home there was still mass activity.  It went on for hours.  The squirrels did not quit until each and every nut was gone. 

Mom felt awful.  She was sure they were exhausted.  She never ever provided an unending supply of nuts to them again. 

Mary-Elizabeth is very Squirrel like.  She starts a project and will not rest until it is done.  She does her homework ahead of time.  She spends hours and hours on something until she really really understands it.  The hours she has worked on her homework and her test prep is amazing. 

I remember how things went when she started 8th grade, still in treatment, still suffering from nasty chemo brain and the radiation was still reducing the brain cells.  She would come home from school and start studying and did so until she went to bed exhausted.  Every day, every week-end every break.  She was like the squirrels.   Despite everything she graduated with Honors from Holy Name Academy, was accepted into 9 of the 11 schools she had applied. 

She struggled as every freshman struggles but finally was able to be a successful Gonzaga Student.  Many more hours, lots of study groups, tutors... what ever it took.  Then.... September 28, 2010 the leukemia returned with a vengeance.  Now remember she did go take her tests before her school ending blood draw.

One Relapse, One Double Cord Blood Transplant, Two years of struggle and pain and misery and back to Gonzaga.  Hours and weeks of study and more tutors and time with professors and lots of other helpful people and ME was finally given proof hard hard work pays off.  Yesterday she received a letter from the Math Department letting her know she was one of 50 out of over 1000 nominated for the math prize. 

 
 
 
The squirrels had their dens filled and ME has filled her brain one hard problem at a time.  Go MEB!!!!!




Friday, March 21, 2014

Darn I wish I would have thought of that earlier.

Mary-E is doing great. She is thriving, she is applying for Engineering internships. Her professors are happy with her progress. She is at the top of her game.  I should not complain, or worry or even note this ongoing sadness in her life.

Every time she sees a new baby or a small child she melts. Every time she has a hot flash she melts.  Every time she realizes she will never have a baby of her own making she dies a little bit in side.

Why in the hell did I not make sure she had some of her eggs frozen when she was between treatments?  Why?  What was I thinking?  Why didn't someone mention it to me?  It would have been a costly but do-able process. It could have happened over a summer.  I could have found some money somewhere, there are people at the U that take care of those things. 

For all those of you that will reply or think about how she can adopt or foster or snatch a cute baby from an abandoned stroller, she knows. She knows she has other options.  But that is not the point.  Trust me every single boy, of appropriate age stored Sperm.  Easy peasy.  No issue, not discussion of cost, deed was done and they moved on to injecting horrible poison into their body. Like many things, not so simple for girls.

Boy one bit of advice I would give everyone with a girl child would be to store some eggs when it is time. 

Just a thought for the day.

Sunday, March 16, 2014

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.








Tuesday, March 11, 2014

Passages...

Some are dark and gloomy. Some are sudden. Some are full of light and wonder. Some are just so scary we cannot even begin to comprehend the importance of the event. 
Sometimes they slip by and we don't know they happened. 

I hate to plow through life and not notice.  Not pay attention to the important moments.  The person that needs a moment of your time to re-establish their grasp on their life.  The moment to listen and try and help.  We need this going both ways.


We lost such an important person today. Anne Lunceford, age 93.  She had been slowly winding down for awhile.  A long while.  She knew people and still was able to express herself but the spring was pretty weak for a long time.  She had been a part of my life since I was 13 years old.  Always a smile, always a willing moment. Always reading her bible quietly. Hair always the same.  
 
She is going to be so surprised when she is greeted by her last dog, Min Min.  No one had the heart to tell her Minnie had died.
 
She made a million cookies, said a million prayers, took in a million dogs and cats that were not her own.  There was always a calf in the corner of the kitchen that was wanting a special bit of extra care. She would never turn you away hungry. She would always take your forgotten paper to school. She would never be upset when Kelsie the Westie locked her out of the car. She would never not pick you up at 2:00 am at the train station.  She always gave you the best of everything. She gave the best she had to those she loved and she loved everyone.
 
The world is a smaller sadder place today than yesterday or even this morning.  If everyone did just one Grammy like thing.  It will end up being a grander place.

Thursday, March 06, 2014

Intentions

We are all guilty of misunderstanding the intentions of other.  We read them through our own intention prism.  Sometimes the view is drastically altered depending on the overall ambiance of the moment.

We intend to be supportive but things get in the way and we are dealing with our own crisis and then there is the snow storm and a new project.  We intended to reach out and then the perfect moment passes and then the acceptable moment passes and then it is just too darn late and it is embarrassing and shameful and oh well.  We intended to reach out.  The other person or family might never know. Too late now and it is best to ignore the event ever even happened.  The best intentions are now a reason we don't see or communicate with someone we dearly loved. 

Sometimes it is a good idea to reach out AFTER the big moment.  The person reaching out feels better. The person touched once again by a friend will not be reminded of the unintended slight but be relieved things are fine.

For more than a year I have been "intending" to call.  I finally did.  It was a good thing.  You never know when it will be too late to call.