Monday, April 30, 2012

Day 100 is almost here....

 IF THE BRIDGE GOES UP IT SHOULD BE FOR A BIG REASON.
The trees have lost their leaves, spent a winter bare and have now returned to their full compliment of foliage.  So much looks the same.  It just does not feel the same. 

I so remember when this happened last time, when we were headed to maintenance from intense treatment. As much as I hated the frenetic pace of active treatment, there is a lot of fear associated with not having frequent blood draws and scans and .......... 

We are a long ways from being cut loose from blood draws and constant monitering but there is still a lot of anxiety.  Her bone marrow was clear but then

 I HAVE HEARD THAT BEFORE.

Her counts are good. 

BUT THE PLATELETS ARE DROPPING

She seems to be doing well and no really new GvH.
BUT IT CAN AND WILL POP UP ANY WHERE, ANY TIME. 

Here is the list of things to watch for:  CATARACTS, LYMPHOMA, LUNG, LIVER......

So what do we do.  We trust in the passage of time.  The advancement of medical technology.  The power of prayer and chocolate.  We take each day as it comes and try to not panic too much too often (chocolate).  We look for new ways to rebuild a life and slowly mearge back into traffic. 



Saturday, April 28, 2012

The things that just happen.

We sort of missed winter.  As I look out the window I see everything coming to life.  It is very calming to see what happens despite the fact we are not actively involved.

No wonder our ancestors were so in love with Spring.  But when I think about it, they were cognisant and aware of each of the seasons.  They thought they had to do some thing to make the seasons change. 

We thing we are helping Mary-E rebuild her immune system.  In reality we are just waiting for it to happen "naturally" Most of everything we are doing is to keep from happening:  infections from fungus and bacteria and creepy crawly stuff and viruses.  The rest is just happening. 

The body is just doing most of it.  The cells went into the bone by themselves. Once they arrived, they started to become working bone marrow.  They are now branching off and making the different kinds of cells that make up a fully developed grown up real person immune system.  We are just trying to give her body time to grow the new system.

After the world's longest eye exam, I asked the doctor (sort of reminded me of the absent- minded professor) why the skin and eyes were so susceptible to GVHD.  (Graft vs. Host Disease).  He was the first person to explain to me the body is constantly under attach by the environment.  The skin, the eyes, the gut.   So as the new cells wake up they attack these areas first.

So we wait.  We watch the leaves emerge, the tulips grow and gain color, a few weeds come and the birds build their new homes. 

Taking a moment and enjoying the spring, happy to know that we don't have to sacrifice any animals to make it happen.

Friday, April 27, 2012

Maybe?

Oh, dear it has been a long 7 months.  But then it has been only 7 months.  I realize we have been in a fog.  Only venturing out for a few short moments into the real world.  The place where life has continued without us.

I really has been an alternate reality.  I feel like we have been on one of those "people movers" in the airports.  Maybe we were the walkers.  In any event we were out of step, really out of step.  I did not even read People magazine (Even though they would like me back as customer and will offer me a great deal).  I am not sure where those months went, While your life does not continue, time does continue to move forward just like water in a stream.

So Maybe? we are going to be able to look up for a bit and re-evaluate.  Lots have asked about how this event has changed my life.  Change is the wrong word.  Transform, bring up short, stopped in my tracks.  I don't know what it has done but I am not the same person I was on September 28th 2011.  I am not altered, I am simply not the same person.  Things I used to do I can't do. Things that I used to hate, I love.  Things I used to tolerate are intolerable.  Those things that make the world special are different.  I am just beginning to figure this out. 

I need to figure out how I am going to make money and support the rest of this life with Mary-Elizabeth and am having a hard time figuring out what that looks like.  I started a list of job requirements. 

1. Money
2. Health Insurance
3. Lily can go to work.
4. People don't use my particular skill set to be mean to other people.

It is a weird list but a start.  Maybe.  A word full of possibilities.

Wednesday, April 25, 2012

The String seems to Stretch and then...

I am not admitting any of the following:

Trip to See Gauguin exhibit at the SAM.  Fast trip in before lots of people showed up.

I am not admitting to a trip to BelSquare for some sliders and beet salad and a bit of shopping.

I am not admitting those things because maybe we were both feeling really randy and wanted to pretend that there was not a transplant just waiting to act up.  It was going so well and then.....

Mom you didn't tell me about the bruise on my back. 

What bruise?

Sally, keep calm.  It is just a little blood under the skin that looks horrible.  Don't panic.

Oh, dear, it is big and ugly and black and purple and right around the place she has to have one more lumbar puncture...   Damn.

Call to SCCA.  Talk with Monica.  Go in for blood draw.

Platelets are down to 60.  Down from 70 on Monday.    Damn.

Now what? 

Medication?
Problems with ElliMae
CMV ( virus that we all carry that does something)

Oh,  on top of all the " it is probably nothings there is this deep dark bit of fear. 

Why can't it be over?  I want this to be done.  I want to be able to breath long enough to finish my income taxes and get my dog groomed and start finding a job.  I want to get far enough from this transplant thing to forget about it.

I will come around and it will be fine and I will put my worry away.   

Oh, in case you did not know the stores are filled with white linen jackets for men.  Did I enter a time warp?  Is Don Johnson back?  At least they are not polyester.




Painting done by the father of Baik. I keep thinking about Venice.  Maybe because it is a city with a long history and great ability to survive.

Monday, April 23, 2012

Little Bits make Big Changes.

Blah blah blah.....  Nothing interesting other than giving back blood is alot harder than it sounds.  So be it. 

We are sort of at the end of a very intense, difficult relationship.  Lots of fury, passion, time spent together and then we have to learn to live with each other, with a bit more balance in our lives.  We are headed back to Children's and I have not quite figured out what that would look like yet.  No is saying and I am just not getting the answers I need.  I am sure there are no answers only team meetings and more discussion.

So this is an observation day.  This is a day when I look outside the fishbowl and see that there are lots of people like us.  People struggling with children with serious, difficult and complicated issues.  My friend Ann Holm had a couple of babes that left the womb way way too early.  March of Dimes was the group that rallied around them and gave them lots and lots of support.   She is doing a fund raising run and send out a message.

I wanted to do something for her in part to thank her for all the help in my transition away from Mikkelborg, her constant moral support and her great glutton free mac and cheese that fed me so many nights.  So, what to do. 

Go cheer her on?  No too many germy people that have touched children.

Write her a nice thank-you.  No, done that.

Give her money.  Not much of that around these days with this not working thing and the child still going to SCCA with a lot of appointments.

Oh, but I have the big jar of coins.  The coins that have been accumulating for the time that Mary-E and I can go somewhere out side of out small radius.  A special way to put a final ending to this transplant thing. 

Take the jar to the bank and have it counted?  No then it is just money.

Oh, but what if I took out the dimes and gave them to her.  It is the March of Dimes.  Oh, perfect.

So one afternoon, I sat at my desk, watching my favorite Friday Night Lights (learning to speak Texan and drink beer and eat BBQ) and sorted out the dimes.   It took a while.  I then put them in a French Jam jar and added a couple of the gold dollars I love so much. 

I picked up the jar and was amazed at how heavy it was and how substantial it felt.  Then I started to wonder who much was in the jar but I figured that would be something for the donation people to do.  Then I called Ann, dropped them off and then found it I left them at the wrong house but that is another story for another day.

Those little dimes, all gathered together in an apricot jam jar.  Some so simple.  Now I realize that even if there was $20.00 in the jar or more or less that alone won't make a big difference, but the power of joining the bits together really can change the world of some poor family facing difficult time.

Everyone has sent us so many "Dimes" and they have made a difference.

Sunday, April 22, 2012

Post 1000.... Day 89 One Life Time

Seems like this should be a very special post.  It seems like there are so many things that should be said. 

I am just Thankful that 1000 posts and 88 days have been a part of my daughter's life time.


 Guess which cookies I made.
I will get back to all the medical nonsense and life nonsense.  Here are some pictures that make me happy.

Thanks so much for all your love and support.

Wednesday, April 18, 2012

I don't even know what is on the schedule today.  I pack my needlepoint, throw in a think-thin bar.  Drink a pot of coffee and get ready to head out.

We arrive home eventually and then we do it again.  Such is the point in our life. 

I had this horrible sense of dread yesterday.  It came from no-where but made me so so freaked out. These heavy feelings come and go with me.  Sometimes lighting falls from the sky, sometimes it is just out there hanging on the edges of my consciousness. I am hoping that it is from the phase of the moon, the fact that the election is months away or because it was tax day.

The Day 80 workup is a big one and seems to never end. Test after scan after blood draw.  We want only good results.  The liver functions are elevated.  I told her to stop drinking...  but I am sure that they will figure this all out.  Happy liver is always good.   But don't you think it is weird that if the function levels are up, that is a bad thing?

Mary-Elizabeth is feeling better.  She is stronger, more interactive.  I can tell how she is doing by whether or not she opens her mail.  Yesterday she finally opened this huge box from our neighbors Paulie and Dan.  They sent a huge bowl made out of 20-30,000 beads.  The bead represent all the prayers we have received. and the rest that we are going to need.

We have suffered a horrible loss in the house.  The death of a coffee pot is always hard to take.

Tuesday, April 17, 2012

Only One more LP in IR for an IT....


6:15 a.m.  Leave house with child that has had nothing to eat or drink for many hours.

6:45 a.m.  Arrive at Children's  have a great choice of parking spots.

6:48 a.m. Discover 5th floor doors are not open.

7:00 a.m. check in. 

7:10 a.m. Find "our" room.  (They have fixed the squeeky door.)

7:15 a.m. to 7:52 a.m.:  Parade of doctors and nurses and more doctors and then our favorite Karyn B with a bit of chemo. 
7:53 a.m.:  Off to IR (interventional radiation).  Lindsey took me in to see the giant television screen and all the fancy do-das and lots of big X-Ray machines.

8:45 a.m.: Beeped, child is done.

9:30 a.m.: Return to the recovery area.  Child brought in all covered and in tons of pain.  But this time pain meds had been ordered and it made all the difference. 


Dr. Thomas Started all this.  Won a Nobel Prize, met the King and Queen of Sweden and I bet wore a tux. 
LP (Lumbar Puncture was a breeze).  Hip hurt like heck.  The BMT needed a whole bunch of bone marrow.  It took three pokes to get all they needed.  The skin biopsy went without the a hitch.

10:00 a.m-.: Child wheeled to Hem/Onc clinic for her caffine infusion.  (I had mine the old fasion way.)

10:00 a.m. to 2:00 p.m.:  Slow drips, need for a scone, visit with a Mom with a child at day 19.  Chat with the BMT inpatient people.  Running into people that say "Why are you here?!"  and great smiles of relief when I say:  "only clinic". 

Infusion done, wheel child to the car, drive to the SCCA clinic, transfer child to the wheel chair. take child to the lab. 

Why? Why would you have to travel from one hospital to another clinic while the child spent 7 hours in the hospital where they have top notch labs and people that know how to get blood out of a stone, if necessary.  BMT needed a CBC on the same day as the bone marrow asspiration.  They did not want Children's to do the blood work.  They would not let me have the blood drawn at Children's and have me take it to SCCA.    They would not let Children's draw the blood and send it over the SCCA even though they do that all the time. 

So we put on our big girl panties and had blood drawn from the child at the SCCA lab. 

As far as I see it.  They owe us one. Permission to go somewhere.... a bit outside of the range.  A bit of mexican cheese, a flower in the house.  Something. 

I will figure it out. 

9:00 a.m. tomorrow Off to Children's for Liver Ultra sound. 

Oh, btw,  the bone marrow was chunkie.  Chunkie bone marrow is good.... or so they tell me.

Monday, April 16, 2012

Healthy Food in Health Care Pledge

370 hospitals in the country have signed on to this initiative.  This is the list from the Northwest.  For heaven's sake Kootenai Medical Center is on this list!!!!! and they are in a much more economically challenged part of the North West. 




<><><><><><><>
Cascade Healthcare Community:
St. Charles Medical Center, Bend, OR
St. Charles, Redmond, OR
Children's Hospital and Regional Medical Center, WA
Evergreen Healthcare, WA
Good Shepherd Medical Center, OR
Group Health Cooperative, WA
Island Hospital, WA
Kaiser Atrium Cafe, OR
Kaiser Sunnyside Medical Center, OR
Kootenai Medical Center, ID
Legacy Health System:
Legacy Emanuel Hospital & Health Center, OR
Legacy Emanuel Children's Hospital, OR
Legacy Good Samaritan Hospital & Medical Center, OR
Legacy Meridian Park Hospital, OR
Legacy Mount Hood Medical Center, OR
Legacy Salmon Creek Hospital, OR
MultiCare Health System:
Allenmore Hospital, WA
Covington Outpatient Center, WA
Good Samaritan Hospital, WA
Mary Bridge Children's Hospital, WA
Tacoma General Hospital, WA
Northwest Hospital & Medical Center, WA
Oregon Health and Science University Hospital, OR
Overlake Hospital Medical Center, WA
Providence Sacred Heart Med. Ctr. & Children's Hospital, WA
Shriners Hospital for Children, OR
St. Luke's Wood River Medical Center, ID
St. Patrick Hospital and Health Sciences Center, MT
Swedish Medical Center:
Swedish Ballard, WA
Swedish Cherry Hill, WA
Swedish Edmonds, WA
Swedish First Hill, WA
Swedish Issaquah, WA
United General Hospital, WA
University of Washington Medical Center, WA

October 26, 2011
Health Care Without Harm Press Release
Contact: Eileen Secrest 540-479-0168

Hundreds Gather in Seattle for Healthy Hospital Food Conference

Conference Reflects Growing Hospital Interest In Sustainable Food Sourcing, Less Industrialized Food System
Seattle, WA — FoodMed 2011, the nation’s most important conference on sustainable food in health care, has wrapped up in Seattle, WA. Hundreds of hospital food service managers, nutritionists, dietitians, chefs, public health professionals, authors, suppliers, and growers gathered to share information and learn new strategies to develop sustainable hospital food services procurement and operations. The conference, sponsored by the Health Care Without Harm (HCWH) Healthy Food in Healthcare Program, is part of a growing movement in hospitals to serve fresher, sustainably produced food to improve health and to support a healthy food system.
“This conference really demonstrates how food service professionals can do something locally that has a global impact. More and more hospitals are making changes to support a healthier and sustainable food system that promotes healthier people, economically viable and vibrant communities, and a healthier planet.”
— Michelle Gottlieb, Co-chair
Healthy Food in Health Care Program
Health Care Without Harm
“This conference really demonstrates how food service professionals can do something locally that has a global impact,” stated Michelle Gottlieb, co-chair of the Healthy Food in Health Care Program at HCWH. “More and more hospitals are making changes to support a healthier and sustainable food system that promotes healthier people, economically viable and vibrant communities, and a healthier planet.”

HCWH’s Healthy Food in Health Care Program has been on the forefront of efforts to reduce the use of non-therapeutic antibiotics in animals raised for food. They have also worked to end the feeding of arsenic to chickens. In addition to serving fresher, less processed foods, many hospitals have begun composting, recycling and promoting farmer’s markets to staff and visitors. In 2010, the HFHC program launched Balanced Menus, an effort to reduce the amount of meat served in hospitals as an effort to reduce greenhouse gases and promote climate and human health.

The First Annual Sustainable Food Awards were also presented during FoodMed 2011. Awards were presented to nine hospitals for excellence in sustainable food procurement, public policy and advocacy, food-climate-health connection; and to three individual health care clinicians who made the connection between our industrialized food system and public health. [Note: for a list of these award winners, visit the HCWH press release of September 27.] HFHC also released its 2011 Menu of Change Report at FoodMed 2011, which included results of a survey of hospital food practices, from which the award winners were chosen.

“I think this is the most energized and inspiring group of people I have been around,” said Lucia Sayre, co-chair of the HFHC program and Co-Director, Bay Area Chapter of Physicians for Social Responsibility. “The attendees can’t wait to get back home and put what they’ve learned into practice. FoodMed helps seed a new cadre of leaders and future award winners. That is what is so important about this conference—we are inspiring hospitals to demand healthier and sustainable food from their suppliers, and become advocates for a healthier food system.”

Participants learned to incorporate sustainable and nutritious food purchasing at their facilities, and heard about cost effective strategies that emphasize health concerns that meet the unique needs of healthcare and facilitate the development of healthy communities. Presentations were geared towards healthcare providers, dieticians, hospital food service directors and health care food procurement and distribution professionals. Several pre-conference activities took place, including a farm tour and hospital cafeteria tour.

Keynote and plenary speakers at FoodMed 2011 included Melinda Hemmelgarn, a registered dietitian, “investigative nutritionist,” and award-winning writer and radio host, better known as “the Food Sleuth”; Oran Hesterman, Founder, President and CEO of Fair Food Network and author of FAIR FOOD: Growing A Healthy Sustainable Food System for All.; Gus Schumacher, Executive VP, Wholesome Wave.
Heath Care without Harm, an international coalition of more than 500 organizations in 53 countries, is working to transform the health care sector, without compromising patient safety or care, so that it is ecologically sustainable and no longer a source of harm to public health and the environment. To learn more about HCWH's work, visit our website at www.noharm.org, our YouTube channel at HCwithoutharm, and our twitter feed at hcwithoutharm.


Don't you think it is ironic that during the very time I was trying to address the issue with Children's Hospital there was a meeting IN Seattle on the very issue of how food was an important part of health care but I bet on a single person from Children's dietary was present.

I bet this was not on the menu.


Sunday, April 15, 2012

Confession is Good For the soul

Bad Hips, Knees and Leukemia Relapses are hard on the Bonsai trees that have been trying their darnest to survive under my sporadic hand.

Some years I have missed re-potting, water has been off and on.  Many of my helpers have not understood the meaning of "it is August, they must be watered and soaked every day."  Not sprinkled a bit but soaked.  Contrary to popular belief, it does not rain all the time in Seattle and it does get warm.

The trees have given up hope and have expired.   I never seem to want to rip the dears from their pots lest they find it in their hearts and roots to send up a spout of two of life.  I finally realized I had to deal with death of my much loved Korean Hornbeam that had been with me for many many years.  It was always most forgiving but it finally had enough. 

When a bit of sun emerged at the end of March I took a bit of time and foraged for my trees and found only two hardy survivors.  An American Beech and a Flowering Plum that never flowers.  I yanked them from their pots and shook them out and give them a good root trim.  Freshened up the dirt, looked at their roots; found a good fit; stuck them back in the confined spaces.  Some heavy duty trimming of the top and some vitamin water and we shall see. 

I then did some more digging in my back yard.  I uncovered some Bonsai wannabees that I brought home, maybe they are from other people's yards. (Hail Mary) Last summer as I was rehabbing the knee I was walking the dogs much more and was noticing little tree seedlings that were in odd places.  Obviously volunteers.   They needed to be rescued and put in training pots over the winter. 

So maybe I keep finding them.  Maybe some people want to have them but I think they will be happy here.  I  promise to take good care of them.  It  seems like cheatingto buy big trees or other people's treets.  It seems like cheating. Part of the fun is watching them grow and change. And and I love the price.



I guess I am a potential person.  I have the ability to look at something and see past the obvious and hone in on the deep structure that holds up the 7 kinds of shag carpet and lime green and orange wall paper.  Ask anyone what my house looked like BEFORE we pulled off and up and out all the weird stuff that made this someone else's home. I saw potential in Ballard and jumped on it.

Mary-E is back home.  My secretions and cold are gone.  I am bits of tired and staying close to my favorite napping places but can see that both of us are healing and getting back to some sort of normal.  I have even thought it is time to start a job hunt, hoping that someone can see the potential in me.

I wonder what tree I will find tomorrow?

Thursday, April 12, 2012

Day 80 is really a couple of weeks.

Maggie and Mary-Elizabeth are navigating the world of SCCA and Children's, while I sneeze and cough.  Tests, more tests, followed by some tests.  Then, lets re-do some tests followed by a meeting about the tests.

I am not scoffing, they are all very important.  Before transplant they ran her through a huge work-up to see where she was physically.  After killing her immune system with high dose cancer causing radiation and chemo therapy, giving her cord blood, keeping her on immunosupresents and other nasty things they need to see where she is physically.

She is having what I call the Astronaut Physical.  Every body system is run through the proverbial wringer. 

I am missing all of this week. Cold is progressing.  Head on Monday and Tuesday.  Throat and ears on Wednesday, today it seems stalled at the top of my chest.  Lots of fluids and hot stuff.  I had really really hot curry that Brenda found for me that comes in cool little packages.  Then Joe Murray. of the house next door fame. took me for 3. 5 star Tom Ka Gui.

 (Ballards version of the Cherry Blossom Festival)
Mary-E and Maggie are doing some fun things.  She got permission to have a pedicure and her eyebrows waxed from Paul Carpenter.  He is our in-patient attending this month.  I keep asking him for things like permission to go to Hawaii and for 80 milligrams of Prilosec to prevent heartburn.  He tells me "No"and then I question him. He does not like that.  Oh well he has two more weeks to learn and I gave him this week off.  His comment as he left the room on Monday was:  You were like this last week.

My reply:  Oh, I am like this all the time.

So today is about more rest, more tea, more capsaisin and a walk with the dogs before it rains.   Then lots of sleep so I can get Mary-E home and we can sprint to Day 100 on our way to Day 365.  We have come a long long way.

Tuesday, April 10, 2012

My Secretions are not Under Control

Love that phrase but not right now and not when it applies to me. So here I am hacking and sneezing and my daughter is packing up to leave the house of pestilence.  Thanks Maggie for retiring when you did.

I am going to bed.  I am going to make myself something hot and spicy and go to bed.  I had Chile with extra chili sauce for breakfast.  Lots to drink, some more sleep and then some work on secretion control.

I guess I have been pretty lucky. 

Off to bed.

Sunday, April 08, 2012

Easter and how it is determined and why did I not ask this question before?

Easter is a moveable feast, meaning it is not fixed in relation to the civil calendar. The First Council of Nicaea (325) established the date of Easter as the first Sunday after the full moon (the Paschal Full Moon) following the northern hemisphere's vernal equinox.[8] Ecclesiastically, the equinox is reckoned to be on 21 March (even though the equinox occurs, astronomically speaking, on 20 March in most years), and the "Full Moon" is not necessarily the astronomically correct date. The date of Easter therefore varies between 22 March and 25 April. Eastern Christianity bases its calculations on the Julian calendar whose 21 March corresponds, during the 21st century, to 3 April in the Gregorian calendar, in which the celebration of Easter therefore varies between 4 April and 8 May.

Second Full Moon Walk.... Happy Christian Easter and Passover


Puppies up at 6:20 this am.  Better.  I am happy with better. To keep the Neihbors from fire bombing my house I took them out walking.

Full moon was out again. I had this thought yesterday but did not take it beyond thought phase:

Is the reason Easter changes each year have something to do with the phases of the moon and what are the rules and why?

Think about it and let me know the answer when you have a moment.

Tasks for today:

1. clean out the bird bath
2. put out more suet
3. Plant some sweet peas
4. Do laundry
Lily is a very interesting photographer.



Saturday, April 07, 2012

Lisa Brandenberg

Lisa is the new president of Seattle Children's Hospital.  She had a meeting with several Seattle City Council persons and a friend of mine who works in the City.  The hospital wants to not pay 7 million they owe the people of Seattle for the property where the new building is going.  They had lunch.  They ordered from Specialties.

I wonder if we can order from there the next time we are at the hospital. 

Hummmmmmm.......  I think the food might improve if those other than the parents and children the hospital serves were to be forced to eat it.

Glad to know the new President of the hospital knows where to obtain good, fresh healthy food.  Because I am feeling a bit peeved, I might mention that when Specialties lists the calories per serving for each cookie, each cookie is listed as two servings.  Ouch.
http://www.bizjournals.com/seattle/news/2012/04/03/brandenburg-named-seattle-childrens.html

Morning Surprises.

4:30 am:  Birds begin to let me know that the sun will be up in two more hours.

4:31 am:  Lily listens to them and lets me know that the sun will be up in two more hours.,

4:33 am:  Tucker lets me know I should listen to Lily

5:03 am:  I get up, Put on my House coat and take them for a walk.

5:05 am:  Discover wonderful full moon.

5:25 am:  My sister does not answer the phone.

Coffee consumed:
Dogs walked:
Child still sleeping:

Life is good.

Friday, April 06, 2012

OH MY Trying to catch my breath.

Today I had to do a bunch of things.  I let my self do something for me and then hit the SCCA. Simple little in and out but then I ran into someone. Oh my. Oh dear.  Oh God why does this happen to a child.

I saw Mario.  He is one of Mary-Elizabeth's transplant buddies. His transplant was a day before hers and I love his mom.  She is always happy and positive.  I would not have recognized him.  He was asleep and bundled up.  It took my breath away.  His mom was sitting next to him as happy as a clam to be out of the hospital.  We had not seen him for months because of a number of infections he had.


I realized why they are calling Mary-E a rock star.  Mario is so sick.  When I stopped by the church I lit several extra candles. He was a big strong kid.  I am hoping only the best for him.  I guess I had assumed everyone was doing fine but as I think back maybe the only kids I saw were those kids that were making real progress. 

I am wondering if the reason they keep us apart is because of how hard this process can be. I knew we went through hell but after what I saw today, I think we were only on level 2 or 3. (I have to re-read Dante.)

It gave me some hope, some perspective and something great to be happy about on this Good Friday.  It is a good Friday.  

In case you are wondering, four men, two with experience and two without CAN lift a new fridge over the purple counter and it does not cause me to have a stroke.  See great day.  



Thursday, April 05, 2012

Hate when I am not prepared.

She is not better.  She is not going to get better for a while.  She will be getting better eventually. 

My new chant. 

Her weight has dropped almost 20 lbs because she can not eat.  She is in lots of pain, much not controlled. She has not energy because she cannot eat.  She has uncontrolled pain.  Go figure there is weight loss and pain.

I was so ready for all of this but not when she was out of the hospital, not this far out from transplant. I thought we had done our time with the hospital stuff.  I hope we did not use our best tricks in the hospital but rather have some reserves left for home. The ice seems so thin right now. 

 I was not prepared for home to be such a struggle.  I was not prepared for a child that could/would not get out of bed.  I was not ready for a child that won't open her cards or presents or call her friends.  Yes I know this is screaming depression.  There is just no way to get her to another doctor for another medication that must be taken with grapefruit juice at 2:14 each day while standing on her head reciting Beowulf in Gaelic.

I think our nurse today said it best:  Med lists should not be four pages long......

I was ready for so much of what happened in the hospital.  I am completely unprepared for the aftermath of that process. 

I guess it is really about not being able to help her get through this.  I cannot tell her it will be better after she does high dose prednison.  We both know what happens when she is on high dose steroids.  She needs to catch a break soon.  Something is needed to get over this hump.

Tracy Hentz used to say that it is never a star it is a constellation.  I beg to differ.  It is not a constellation, it is a galaxy.

I want to return to my home planet very soon.  One that looks and feels familiar. 

Discovery of the day:  Tukwilla is not just Southcenter Mall.  It has houses.  Who knew? Not only did I go there today but I found my way home! 

Beclimethison and Brussel Sprouts.

It is a drug-GVHD hates it.

It is a non-cortisol steroid so it does not cause blood sugar issues- Mary-Elizabeth's body  thinks that is great.

It can be given at any time.  No issues with full or empty stomachs or milk or grapefruit- the Nutritionist is giddy with happiness.

It directly treats the area affected (the stomach GVHD) so Dr. Caldwell ( who won't let us go next week to Hawaii so he is dead to me) likes it.

It has no drug interactions- The pharmacists are much enamoured.

Seems like life is good right.  HeeHee.  Did I mention that is oral and oilie and nasty and disgusting and makes Mary-E want to throw-up? AND has to be taken 4 times a day? 

Brussel Sprouts are baby cabbage like bunches of goodness and are so cute as they cling to the stalk where they grow. They grow in cold climates and in the winter in Seattle- so gardeners and the lovers of small veggies like it.

They are innocuous while they sit in the bag ready to be cooked and can stay in the fridge for a long time -so cooks like them.

They are round and roll around on the floor and entertain the dog- so Lily likes them and eventually will eat them. 

 They are full of good nutrition and give your body lots of important stuff that makes it happy - so your body likes them.

Did I mention they are a bit odoriferous and make people want to toss their cookies.  (Tracy used to say that they smell like old lady farts.) People feel squeamish even if they know they are on the menu.

Now I have perfected the art of roasting and adding a bit of shallot, panchetta and sherry vinegar.  No amount of coaxing or great ingredients will make them any less yucky to some people.

Mary-E is going to survive this process.  She will take the medicine, do the tests and continue to count down the days.  I saw a spark yesterday when she said she would need her winter stuff for school next year. 

Off to clinic. 





Wednesday, April 04, 2012

Wednesday April 4, 2012

New discoveries by 7:15 am

 The crows would appreciate if the bagels were a bit smaller.

Tucker does not like to be left home when Yim goes to school.

Someone one needs to invent a saline warmer.  Room temperature at my house is only about 63 degrees, a bit chilly for a body.  I am not allowed to give the child a dose of Tylenol but I can give her 1.5 liters of cold saline.  I wonder what that would do to the body temperature?

On national Spot a Rainbow Day, Seattle is a great place to live.

We will see if I can still make bread.  I am going to try this afternoon. 

A great way to reconnect with your home is to dig in the garden.  I see a nursery trip in my future.

Tuesday, April 03, 2012

One Down Two to Go...

Meb is in her bed. She is not allowed out until Thursday A.M. except to use the facilities and to  take her medication.  That is all.  She might be able to move to my bed but only if she figures out how to program my new Universal Remote.  It might work on everything but I certainly don't have the skills to have it work on anything.

LP (Lumbar Puncture)
IR (Intervention Radiologist)
IT (Chemo into the interthecal space)

We went to the hospital bright and early.  She was taken back.  Refused the pregnancy test AGAIN and then we met the Doctor. 

Hi my name is Doctor Evans and I will be doing the procedure today.

So Brian, who from Hem/Onc will be coming down to do the Chemo.

I will be doing the Chemo.

No you won't, only the chemo people do it. 

 Oh, okay. 

He left and we never saw him again.  Maybe he was doing another procedure.

I hope he knows that we fully figured out that he could have put the needle in and can do lots of other complicated procedures like sticking needles into places and taking tiny bits of things out but only our Hem/Onc peeps do Chemo.

It is always a fun adventure.  Never the same.   The one thing I can say is that for the most part people are trying to solve problems, be pro-active and make things better for patients and families. 

After the procedure I spent some time with Dr. Shaw who had been the attending.  He is a fan of this blog.  That of course made us instant friends. 


We talked about how great Children's was and how happy I had been with the facility and how much I supported it.  Someone had sent him my link and we had some exchanges of thoughts.

We agreed that it would be wonderful to be in a facility that lead the nation in making food as medicine a priority for it's kids.

I can't believe that the kitchen still serves instant mashed potatoes, poor quality white bread and ice burg lettuce on Hot Dog Day..... 

I would think that a place like Children's  would want to be leaders and to show the county how to make healthy good tasting choices not just dump bad processed stuff out of bags and call it food. 

Better food is on the way.....Yeah according to Lisa Brandenburg Interim President and COO it "We will get there in a few years"  My expectations for more than frozen corn and pre-packaged pizza are unrealistic.




I have to be honest. Sometimes this is all that works......   But never ever frozen corn.




Monday, April 02, 2012

Twilight Ballard

I feel like I am in one of those movies.  Where things look the same but the really smart heroine knows that something is wrong.  Something has been moved or changed or things are not as they seem. 

It looks like my bed. It looks like my daughter. If feel like my dogs when we walk.  I sort of recognize the kitchen and the freezer.  I kind of remember why I froze the tofu.  (Can you even freeze Tofu.)  I remember that flower bed.  I remember that dog and that person walking her.  We have been home almost two weeks and it is still not right.  I am still not settled in so many ways. 

This must be how someone feels after they wake from a long coma or get out of prison or recover from amnesia.  Familiar, yet different. 

While we were in the hospital home was the goal.  We are home and now what.  Pretty hard to see progress with the esoteric things in our lives like immune system building and weird bumps in the stomach. 

I guess I should just keep doing the familiar things.  Find my footing, get firmly planted again in "normal". 

It was fun at clinic today.  Try asking a Doc that does not know you about going to Hawaii in a couple of months.  They don't even know what to say......  Sort of fun.   I figured if they knew we wanted to go there we could maybe go to Whidby or Bainbridge or heck Mercer Island.   Never hurts to ask.

Meb is doing Laundry.  I am getting ready for a 6:45 am.... that means morning.... check in at Children's tomorrow.    Lily will be up.