Day +7 and the search for answers and the right toothbrush.

A week, 7 days.  I am hoping that since God created heaven and earth and all of the creatures we should be almost done. 

This AM there was a very intent messenger here to pick up MEB's blood.  She is in a study and they are checking for the very very early signs of engraftment... Hey so am I.  I asked for any results they found.  The messenger said she would let me know.  I suspect I may not hear.  I think they really really want to be sure.  I want to be sure.  I want to know but then I have settled into not knowing.

She is eating, cheese cake, fruit loops, burritos, canned peaches, Starbucks Paninis, smoothies.  They are amazed.  There are sores but she really is trying to keep from the IV nutrition.  Keeping your digestive working is a good thing. 

She is the only girl her age going through this process right now.  John, Chris, Mario have all sucummed to no eating.  Mary-Elizabeth is looking for a great big sparkly star or a banner of some sort. 

I seem to be trapped.  I don't seem to be able to leave.  I must plan a mistake.  I will try and make an appointment.  I just feel a need to be close.  I am well settled and figure leaving is something I can do later.

 I don't want to not be gone if something happens.  So what could happen? you ask. Oh a million things, all so speculative.  Nothing is going to happen.  I know that but I just worry. 

I am leaving today because Meb needs a new toothbrush. We are searching for a Baby toothbrush one with princess on it.  The search for the the right toothbrush has been trying.  For you that are not in the "know" the newest and most popular feature of toothbrush is the tongue cleaners.  These are very difficult to deal with if the inside of your mouth is full of canker sores. 

So the girls, Ellie May and Pearl Ann are continuing to explore the world.  They learned today that they like Tiffany and Company.

Day +5 and +6 working for solutions

So, we are working toward finding ways to handle the side effects.  They come despite the way that everyone works very hard to keep things from happening.  Nausea, emisis ( throwing up)  pain from hick-ups, pain from swallowing, pain from eating.  Pain. 

She has finally been put on a PCA; a devise that dispenses pain medication as needed. It makes a difference almost immediately.  It won't let her overdose and will keep track of when she needs it.

I am finding I don't do well when she is in pain.  I don't like it, it makes me grumpy, it puts me on edge, it makes me unhappy.  I must keep myself very busy and will keep stringing cranes.  I am up to 172 but must continue to string. 

The doctor said not to expect any new cells from Ellie May or Pearl Ann for a couple of weeks or more.

So... Waiting, shopping in Seed Catalogs, working on some thoughts for a survival guide and listening to people and just waiting.... 

Things that have made the world better.  Mail from friends and family.  Chicken Pot Pie, mac and cheese, Fun books, prayer chains, good salad, visits, prayers, prayers, lots of purell.

So we wait for the second disk of Here Come The Brides.  More research on the real story, looking for more beads, thinking of ways to make each day pass productively.... 

so...... Day 4...

Two units of Blood. Some cream corn. Some guava juice.  Not bad for day 3. She is doing great and not feeling too bad.  Showering, walking and engaging with people.  Sometimes she just goes to sleep but then that is a big part of this.  Rest, deep sleep that allows the body to heal its self.  She would report that at night they wake her up for lots of things.  Her meds beep, she has to be weighed, she has to have her vitals taken, she has to be sleeping on her back to have her labs drawn. 

She does sleep a lot during the day.  Yesterday I made sure she was on the day bed early so that she could sleep in the sun, with the shade drawn.... of course

The business week of Cancer is over so today we settle in to some more quiet and waiting. Waiting is good.  It gives you time to think and pray and realize how much the world swirls around in hectic activity.  We so seldom are able to get off and take some time.  There is great value in down time and quiet time and thinking time. 

Day 3, no signs yet. of the girls..... but then we were not expecting such, yet.

There is a rhythm to the floor.  Lots of comings and going.  Shift changes at 7:00.  All the nurses are huddled at the pod desks and there is a significant amount of information exchanged.  The trays of food that won't be eaten are delivered, the linen guy shows up and  house keeping begins their constant vigil and battle against germs and the never ending detris that collects.  Caps, bits of uneaten popcorn, scraps of paper.  The TBI(Radiation) kids are being bundled up by the ambulance drivers  and whisked away to University.  Lots of busy movement and activity.

The kids are passed out. Tracy always speculated that as the day became busier, the kids withdrew to some quiet place so not to participate in the ensuing busy activity. 

Parents are sneaking out of their rooms in search of coffee (8 shots for me this AM) and a shower, a moment on the  computer before waiting for the Docs to show up.    We are all waiting.  Some are waiting for test results, some are waiting for discharge, some are waiting for good news, some are expecting bad. 

I have come to realize we are on the quiet part of the floor.   The newly diagnosed are running around with that great fear and anxiety hung around their necks.  They are trying to hard to keep it together and are reading and talking and consulting and doing more talking and texting and .......... I try to let them know, it gets better.  

I endlessly approach them and try to help.  One poor Mom was running around with her son's tray trying to find a spot to put it.  They were trying to clear out their son's room.  I gave her some direction. Sort of like the older kids in school, we try to be kind to the kindergartners.  Help them find the good Starbucks, let them know they can ask for real food for their child.  Just let them know we all can survive this process, this place and help them get into step and accept the rhythm

So here we sit.  I am not anxious.  No, lets see what I have planned on my list today:
1. Rearrange my anti-room so I can watch the sun rise and set, do 10 miles on the bike, string all the cranes, write thank-you notes, begin a book  Dummies Guide to the SCCA for the weary parent, finish my book, answer all my e-mails, play words with friends, have coffee with three or four moms, Draft a questionnaire for the nurses, parents and kids.......No anxiety here. 

We are waiting for Ellie May and Pearl Ann to finish the job they started 4 days and I am going to stay as close as I can to Mary-Elizabeth. 

Day+2 Or Really..... You don't Wash the Lettuce!

Maybe I am guilty of not washing the lettuce all the time.  My dad, old Doctor Lanham, never thought we ate enough dirt, that being said. We are in the era of NO IMMUNE SYSTEM.

In this point in time she does not have a suppressed system, she has no system.  8 doses of radiation, 5 doses of chemo therapy and wala... dead bone marrow.  No cells in her body to fight infection.  No amount of infection will be tackled by weird small white cells that have the bane of my existence. 

So they gave us new rules.  Food  hot,  Food Cold,  Food scrubbed and washed.  No raw or undercooked meat, seafood or eggs.  No pickled stuff, no boxed lettuce from a store.  No sliced cheeses or meats.  No raw nuts. Nothing left out for more than 2 hours or if with mayo, 1 hour.  No food out of the fridge that is more than 48 hours old.  No raw honey, no unpasteurized milk or tofu.  No Miso.  No blue cheese. No catchup from bottles on the table. On and on. 

So I have been worried about the temperature of the food here for a long time.  I was told that a tray could sit 40 minutes before it was delivered to the patient. I had sort of solved that by ordering at odd times so it was hot.  Then I looked a the salad served to her and wondered.

So I asked the Bone Marrow Nutritionist if the kitchen was aware that our kids (Bone Marrow) kids had a different more strict diet that included things like washed lettuce.   

I told her why I was concerned and boy.... we had a meeting by 1:00 pm. yesterday and by 2:30, Chef Walter and his gang got the news that they were going to be washing all that lovely lettuce. 

It is not all bad and dangerous and scary. Cami continues to make great smoothies and Karen keeps raiding the catering kitchen for things that teenagers and young adults like to eat. Kettle corn appears and ginger snaps did until they began to hurt her mouth. Good things are happening and we so so love and appreciate it.

I love how much the dietary staff works to make sure that the kids get what they want.  The people that see how sick kids are and how little they eat and how much better they do when they are given food they like, it really makes a difference. 

I am dreaming of Panni Makers, and lettuce spinners and.......... and hot baked cookies and birthday cakes and whole wheat buns and home made soup and............

Day 1 or the Girls are Settling in.

There are so many things that are happening.  I am just trying to figure it out.  Ellie May and Pearl Ann arrived three hours late.  They had to  have a final bath.  They arrived and were then prepare.  Two small bags of sort of red Koolaide colored liquid.  They were infused using gravity only.  10 minutes each and it was over. 

Nurses sang "Happy Bone Marrow to You".  They had been cryo-preserved (frozen) with DSMO.  Uncle Alex and I retold Grampa John using this for healing purposes.  Then it was over and there was a lot of hovering, lots of checks and rechecking.  Then we went to to sleep.  Or I did.  Mary-Elizabeth was up several times but slept this A.M.  

We wait, we wait, we wait.  We have no way to know what is happening.  We are in the waiting phase......

There is much discussion on the floor whether or not Ellie May or Pearl Ann is going to win.  One of our doctors called them Thing One and Thing Two... I am just going to channel all the love I can to the two sets of baby cell and pray endlessly for success. 

So I think it is time to set up a pool that tracks who wins, what day we first find white blood cells and the number. 

Just a thought.  Also the Frans Hearts we passed out helped.  I am sure. 

Day 0

We have reached THE day.  I was chatting with an former high school friend last night and had a thought.

Mary-Elizabeth is sort of like Moses.  She has been through the plagues and is escaping the land of Cancer.  The trip has been long and hard but she has arrived at the edge of the Red Sea and it has parted.  She has to cross.  No going back.  There will then be some wandering and waiting and most of all a need to trust in all the powers of the universe while we wait for the Golden Tablets (Lab report that shows the bone marrow has kicked into production.) to come down the mountain. 

We will be tested and there will be  "trials and tribulations" but again we can only move forward.

We are all waiting. 

Day -1 or So How does this work?????

As I sit in Seattle on a sunny day, 24 hours from now Mary-Elizabeth will have "her transplant"

We have lived here in Cancer World for so long, I realize we do lots of bits and bits of how this works but I thought it might be time to sort it all out.

Mary-Elizabeth relapsed on September 28th of this year.  The first step was to have her achieve remission or RE-INDUCTION.  She was treated with two big doses of Blue Thunder.  After thirty days she was tested again and they found .007 remaining disease  but she was cleared to go through the first round of INTENSIFICATION.   

Some kids go through 6 rounds of this combination of chemo, Mary-Elizabeth got off the regular protocol early and headed down Bone Marrow Transplant road. 

She was always headed to transplant for a number of reasons.  Her first encounter with leukemia was after age 11.  It made her high risk so she was treated for 6 months longer.  Because of the weird bump on the top of her head, she had 12 doses of Spinal/Cranial radiation.  Said a different way, they gave her everything they could.  Her leukemia lay dormant for 57 months and then came back with a vengeance.  Transplant is her only option.

So here we are Day -1.  It is the last day in negative world, we work toward only positive after tomorrow.   Tomorrow is Day 0 and we count up from there.   About noon tomorrow, they will start infusing two units of cells.  They will look like blood.  No big deal.  No drama but I hear there will be a poster and a sign.  Some families have parties and it is considered a new birthday.  I am just going to sit and request that the universe re-align.  I want to focus all the good forces to Mary-Elizabeth.  Prayer, pleading, what ever we do, noon is the time.  The bells need to ring, gunshots should be sounded.  (James that means 11:00 your time.)

Ellie May and Pearl Ann are from the umbilical cord and placenta of two babies.  They were donated by someone and have been stored in a bank somewhere.  The cells are "manipulated".  In other words they have been multiplied. The parts of the blood that cause reactions like platelets and other stuff is also gone.  The cells were then stored, (frozen). 

Mary-E will be infused tomorrow with Ellie May, Unit One and Pearl Ann, Unit Two.  Each are matched on 4 of the 6 HLA factors.  While this is not ideal, it has worked in the past. 
http://en.wikipedia.org/wiki/Human_leukocyte_antigen.

 She is not getting a "bone marrow transplant" in the sense that the new stem cells are not coming from someones bone marrow. Stem cells taken from bone marrow are from a working system.  They are all grown up.  They just move in and go to work.  The cord stem cells are not grown up but they are more than willing to give it a good old college try. They float around the blood for about 12 hours and then migrate  to the bone  and start to learn their job and set up home.  They are baby cells so it takes them a month to really figure out what they are doing, mature and swing into production. Then it takes awhile for them "to Show Their Work".

Then in time  Ellie May or Pearl Ann will decide who will stay and who will be the cheer leader and leave after the game. 

When the first ANC cells appear in the peripheral blood and they do some special dance and say some special words then the cord cells will have Engrafted and she will be headed back to her own life. We won't worry until it has been a month.


 After ENGRAFTMENT, there will be the long road back to a real immune system.  The new cells are baby cells and never will have seen a cold, RSV, the mumps, the measles, everything. by day 100 she will be half way there but the second half can be tough but is accomplished on a regular basis.

So the cells need to do three basic things. 
1. Be working Bone Marrow
2. Learn to be happy with their new body
3. Build a new immune system so public places are not dangerous.

So, no questions are stupid questions, I ask them every day.

On a good note.  I asked the Kitchen for some cheese cake and they really came through.

Day -2..... Little Steps

I think we can rest assured that I am not a process person.  Process takes too long, talking and meeting and thinking and committees and more considering and then a chart is made and then we think some more.  I am more of a Niki person.  JUST DO IT.

So here I find myself stuck in an endless process.  the rules, did I mention the notebook of rules.  No lettuce unless each leaf has been washed.  Purelle in and out of the room.  Don't stand on a scale unless it has been Cloroxed.  No leaving the floor.  Walk at least 4 times a day but don't go near anyone.  Don't go into the room.  Don't use your buckie lest you burn yourself. Do drink gallons of water, but make sure you tell how much.  We do this and then this and then we do this....  Endless Process. 

 But I am not complaining.  I am beginning to understand how someone can bond with the process. 

Of course I do want to know how the process came about, who thought it up, how did they decide that radiation had to be at least 6 hours apart but it was okay if it was 9 hours apart.  How did they decide on little doses twice a day for 4 days and not one really big dose.  How did they decide that CytoxIn was okay in ______ dose but if given in _______ dose it would kill the bone marrow and not just slap it down.  Why one chemo before the other. Why start drug A on day -3 and drug B on day +4. 

It baffles me but for once in my life I am not questioning what they are doing.  I might be doing a healthy dose of WHY is the sky blue but I am here for the entire process.  These folks, the docs the nurses, the snack guys have  that certain sort of fear that sits in their posture and the back of their eyes and in their hugs.  It tells me that the process is all that we have.  It is this or nothing.  There are not short cuts, no easier way.  This is our path. This is our journey.

So that being said, I of course have to tackle the stuff I might be able to change.  My dear friend Lori suggested that Little Steps.  I am all for big giant, colorful swift change.  So taking her advice, I am going to suggest that this week Seattle Children's Hospital, JUST SAY NO TO ICEBERG LETTUCE.  Not a big step.  I suspect that there should be a simple matter of unchecking a box on an order sheet or a computer screen and checking another screen. 

This is Iceberg lettuce sent to Meb last night.  Begin the chant... Just say no to Iceberg lettuce....

Day -3 Two more doses of Radiation down. 5 to go

Ellie May and Pearl Ann are waiting and so are we. 

 Lori spent last night with Mary-Elizabeth and went to Radiation this A.M.  We have another round at 1:15.  She is wiped, I had to put on her socks this A.M. She will have almost 18 hours before the next round in the A.M.  

I was home this morning and the world is mad.  Lots of very strong strong wind.  I found as I lay in bed with the window open that you can have too many wind chimes.  Or maybe not.  Lots of good energy was released by the bells and chimes.  We need lots of good energy right now. 



Sun is out, more good energy.  Tucker has not lost faith that she is going to return.  Novena's continue, Rosaries and Pujas are being said.  We are so so ready to make this journey together.  She is so ready to make this battle for her life the best battle ever. 

I am now going to thank the universe for such a great child, family, doctors, friends, nurses and everyone that is reading this blog and praying for us..... 

almost there

Day -4 of Bone Marrow Slaughter and Dose -8 and -7 of Total Body Irradiation or the Bob and Bob show.

We are in our new room, huge window, big space and my spare annex where I can write and escape from the world.  We are so, so, did I mention so so happy. 

I have not seen the counts but my child is tired, but thankfully willing to eat and drink to day.  Good night in the big room, but like any hotel, it takes a night to settle in.  We have been in really tight quarters and this room is huge. If this was a cruise, we would be on the top floor.  Mary-Elizabeth felt like I was too far away last night but we have decided she will be happier if I have my head at the other end of the bed.

Radiation began to day.  7 am and 5 pm.  We were up at 6:00 for Bob and Rob (I don't make this stuff up)  We were then transported by the ambulance to the University of Washington Medical Center.  The roads were passable but not the best.  The hospital did not seem to have plowed the entrance to the Emergency Room.  It did not deter us but could have any other vehicle.  Seemed odd but then who am I to understand these things. 

We found our way to the locked and closed Radiation oncology department.  Found a willing soul and worked our way in.  We were met by a very very awake nurse and the process began.  She had to change into their cloths, go to the room, stand between two specially constructed panels and stand for 45 minutes.  The panels are of various thicknesses so they can make sure each part of her body receives the same amount of radiation.  She did fine but was very tired after the process.  She was loaded back up, stuffed back in the ambulance and we returned.

She asked for Kettle Corn, (Thanks Snack Guy Andy) watched some I Luv Lucy and is now sleeping

4:15 pm  Repeat.

   On the way over Bob or Rob, received a page letting him know that the U was full up on Psych Patients.  They took me anyway.... 

.                                         .

Day -5 Really.... Now her bone marrow wants to work????

So she is done with her chemo.  She had 5 doses of chemo.  Since arrival her counts have done nothing but go up except the platelets and they are still not dropping precipitously.  Here is the trend

White Blood Count  5.0  5.2  6.3
Platelets                      186 193 178
Hematocrit                 29.0 30.8 32.9
ANC                          3865  3957  5922

I had not asked for count reports because I am trying to disconnect from this version of her immune system I helped create.  It has failed.  Sort of like saying good by to a car you have loved but it has to go to the recyclers.  I was not concerned about what the "original" system was doing only thinking a head to the new one that has to be trained and cajoled and re purposed...  

Little did I know that the old one was giving it one more big try.  Under the old rules, we could have gone for sushi, had a pedicure and licked a few door knobs. 

I guess it is good to know that the body fights back when it is under attack. On some cellular level her body knows that if it does not fight back it will loose the ultimate battle. It is sort of incredible to watch.  The wonder of the human body.  NASA was not the only organization that has back up systems.   Maybe our will to live is not an emotional one.  Maybe it is so part of who we are it at at cellular level.

Back to sleep for MEB, I am going to get some coffee and try to figure out what I can get her to eat today....

So when they give you fluids, they want them back..... NOW DAY-6

So, yes it is 4:00 am.  been up about an hour or so. During this process they give a drug called Cytoxin.  As I have said before, never let them give your child a drug with the word Toxin in it.  That is a hint..  Sorry, I often regress. 

 So they gave it to her today about 12 hours ago.  When she had it before it went like this.  Go to the hospital, check-in, get a liter of fluid, Cytoxin, wait an hour, Lasix, and then stand by the bathroom door for an hour, pee it all out and sleep for a few hours. 

It has changed since then.  Now it is fluids, Cytoxin, and no Lasix.  But her body decided it was not willing to give up the good drugs that have been given to her.  So when it did not put out, she was given the lasix.

Let's just say, lasix, still works, and works, and works.  Here is my chance to go for some Midnight Bacon and now since it is 4:00 am, they are closed.  There is always tomorrow morning.

Seems to be snowing.

Day -7.... Or how I Iost the bet about the Oreo Milk Shake

so, we are still here.  Hoping to get moved to a room that has a bigger space. The place we have now has no room for any of my clothing or stuff and only a small amount of MEB's cloths.  We are sort of camping.

She has had a dose of chemo that will be repeated today.  Then she will also begin the three days of Cytoxin.  High high doses.  This is the regiment that requires high amounts of fluid and on the dot, every two hours of "bladder elimination"  The cytoxin does not make the bladder happy so they flush it out as quickly as possible.  Could be three very long days and nights.  

So with 5 doses of chemo and 8 doses of radiation, her bone marrow is gone.  She has no immune system at all.  It would be gone, it would not come back and she would die. We are in the hands of the doctors, Mary-Elizabeth's body and the powers of the universe, and to Ellie Mary and Pearl Ann to make Mary-Elizabeth whole.  Oh, dear, what have we done.....  We have done what we have to do.... Novena time.

On a happier note. It only took 2 days to obtain a real Oreo milkshake from the kitchen.

I will let you decide which one was made by Kami, our new favorite person.

Time for some coffee to ready me for the day.....

We Begin...... Day 8 count down to Transplant.

So we are at the hospital.  Tucker is sitting at the window and seems depressed.   I guess we are all just waiting.  Today MEB is to get some Fluteeribine?  don't know much about it other than it hates bone marrow.  I will start its job and be the official start to the "conditioning" that needs to take place.  We are in a tiny room but it has a shower which is good.  Guests in small numbers are okay.  Mail is great.  Prayers and Pujas are a must.   

My Novena............

Mother Mary. 

Mary-Elizabeth is a remarkable and special child, I am sure that you meant for her to be here more than her 19 years..... I know you know the agony I am experiencing because I saw it in your eyes when I had a long conversation with you in the Vatican.   I saw how carefully you cradled your son.

I pray that you are in charge and we will come out of the other end of this challenge in one piece.  I am not asking for more, I only ask that you watch over us and care for us in the way you cared for your own children.  You know what it is like to loose someone you love.  I trust that with your guidance, we will grow to know the things in life that are before us will not conquer us....... 

So......

Now what....

We are winding down to admission. Last of the laundry is being done.  I am working on unpacking and repacking the car.  We are recovering from a wonderful dinner at Rover's (Thanks to the Kims) Meb is asleep.  I am spending wonderful time with Anne (drove the pass without snow tires to be here) and Patty.  We are just having coffee and talking and gathering all of our special wisdom and power to launch this dog and pony show.

So what now. 

Monday we start Chemo sometime after 8:00 a.m.

If you want to send anything, here is the address.  She will love mail. 

Mary-Elizabeth Sierra Lanham
SCCA Giraffe 3
Seattle Children's Hospital
4800 Sand Point Way NE
Seattle, WA 98105

I will be back and forth from the house so it still works too.  Thanks for all the good energy that is coming our way.

48 Hours....

So...here we are, we have a couple of days left before we become members of a small group of people that receive a double cord blood transplant. 

 Unit One, Ellie May, is type O.  Some of her cells have been thawed and when mixed with Meb's cells did not have any sort of bad reaction. 

Unit Two, Pearl Anne, is also type O.  She did not object to the introduction either. 

All three girls are going to have to live together for a long time.  And I need them to be kind to the new body.  We love them both and they need to not cause trouble because of any concerns that no one is rooting for either.  Everyone needs to understand that both are needed to make this work and one is just going to have to take one for the team.  One will more than serve her purpose but will need to gracefully bow out.  She will be there to help and cheer the other but at some point she will fade away after doing her job.  She is sort of like a booster rocket.  No one goes to space without it but it never gets to go to space.

I woke up this AM with wet cold Lily kisses.  Coffee is made.  I have to be thankful to Lily for the wake up because I do really really love the quiet of the morning.  It give me a bit of time to think, a few tears can escape without much concern.  I can ponder the journey we are taking.  I can be so so thankful for the last several non-Chemo weeks we have had. It has been a great time.  Thanksgiving, Christmas, New Years, impromtu Space Needle lunch, lots of time with friends.  A real quiet but satisfying time that we have just spent quietly together in waiting rooms.  Meb complaining about how grumpy old cancer people are and my continual mentioning of the smell of smokers.

We needed this time.  Time to prepare, time to sleep, time to sort out a few things, like the messy basement.

Now we pack, now we say a few prayers. Now we head out on a trip we never wanted to go on but must do so, it is now the main booster to the rest of Meb's life. 

 I just hope the O rings are in good shape.

Friday the 13th......

Hate this combination of days.  I guess I should just get over it....

Okay, so I am over it.  But today we are doing a "last" .  Last IT LP in IR until admission.  Four more during the next stages of treatment.

Lasts are always fun if they are unpleasant. Today Meb will be trying a first, a caffeine infusion.  Caffeine infusion you say....  I have been asking for the IV coffee for a long time.  The longer I am in the process, the more I realize they are are hold out on us. 

So, about to leave for the hospital for a last and a first.  We will see how the day balances out.

Oh, btw, the Second Sherlock Holmes does not disappoint.  It is funny and thoughtful and it was wonderful to go to a movie with my lovely charming and fabulous child.    Not many people go on Wednesday so it was perfectly permitted. 

Count down

Day 4 find more stuff for Liz to sell and work around home.  Eat Lamb Stew made yesterday in the crock pot.
Day 3:  Check into Children's around 11:30 for LP only. Bone Marrow done on  Monday
Day 2: Go to Rovers with friends, ship Lily off to her temporary home.
Day 1.  Pack for the hospital.
Monday the 16th:  Day 8 of conditioning begins.  Count down to day 0 Transplant on the 24th of January. 

Date Books and Day 4, Looks like a go.

So  on Friday my much sought after Date Book Arrived.  It is soft and beautiful.  The pages are made from old maps so some are just blank with the letters and numbers on them, some have great old maps.  It is such a fun little book.  I have number 20 of 36.  I am hoping those are my good and lucky numbers.

I did nothing with it over the week-end. Then I decided that it needed to have something added.  I put the week's appointments in it and then looked ahead.  I decided to wait until the real sign off date for the transplant before I used my much loved fountain pen to  put in the rest.  I did put in Johnny's birthday and my sister Belle's.  They are next week so they are something we can count on.

I have put in the reservations at Rovers.  All in Ink.

I guess I want a life that is done in ink and not pencil.  I want to be able to say "I will join you" and mean it.  I want to look ahead to big events like the start of school and parent's week-end.  Oh, I so want to go to Parent's week-end (something I scoffed at as a silly endeavour).

Here is to filling in the date books lovely pages.

I just entered the 16th as the day we check into the hospital.

Also Purgatory Press has agreed to make 20 more on a special run for Mary-Elizabeth's fans.  They will go into 2013 because the month will be over before they can print them.  They are setting the type as we speak so let me know. With shipping they are $117.

DAY 5 Worry, Wondering Working and Waiting.

Should be an ordinary day. Ordinary has different meaning to me.

Up early, coffee, always coffee,
Thanks Kira for the dark Verona.

Some time on the computer.  Make sure the bills are being paid.  Slowly closing down the house.
Worrying about the dogs a bit. They have become a tight group.

Worry about forgetting something but realizing that there are a million people out there that are watching over us. 

Wondering about what will happen and how this will unfold.

Working on accepting what will be will be......

Today is a big day at the SCCA.  We are going to be doing the "Data Review"  the results of all the tests are in and the decision to order the two units of cord blood will be made and then we are go for launch.

So until this after noon, I am going to work on waiting.

Day 6, Radiation

Bone Marrow check
 Results are not in but no one expects there to be anything but really really healthy cells to kill.  The problem with her current system is that it acts up when no one is looks.

Radiation Simulation:

Go into a big room go in between a device that Meb described as a torture devise with a big bicycle seat.  She will have to stand between two big pieces of Plexiglas for 45 minutes, two times a day, for 4 days.
 She is getting 12 grays(units) at the mid point of the radiation, they will shield her lungs lest she develop some horrible inflammation in her lungs.

I thought maybe since we had been through this before there would be less trauma for everyone.  I am just shut down, I cannot think about this. It is all so horrific. 

Good news:  She is transported by ambulance twice a day for treatment.  No parking hassles.

Day 7,

So Meb cleaned out her whole room.  Lots of things went, Liz--- more stuff here for you to put out in the world for sale--- (I am going to see if she reads my blog).

I thought the clean house part was pretty interesting.  I sit at a desk that is sort of cluttered, really cluttered, it feels good to have things to discover around me.  I am so pleased when I find an errant check lurking, not so pleased when I find an unpaid bill.  Every now and then I have to really find something like my new GOOD TO GO pass that is fully charged and waiting for me NOT to go on the 520 bridge.  I might do it, I might not.

We have a history of cleaning the house before the house keepers come.  Recently, we are just putting things on my "desk".  I suspect I am not the only one with a box or a bag or a corner that has a few things stashed in them that will be needed later.  Where is???? That is when we go into the deep deep dark and pull them out only to also examine long lost other items.

I guess we have to look at what is happening next week as a great big deep house cleaning.  They are going to go into Mary-E's body and do a deep cleaning.  Every single errant (new favorite word) cell must die so the new ones will have a new home.

So with the cleaning of MEB's room comes a huge mess in the rest of the house.   Everything is so closely connected and intertwined.  It is hard to push on one thing and not have something else give.

But as with the newly created mess from the cleaning of Meb's room, it is time to deal with each "side affect" one at a time.

Poet Samuel Green, says it better then I can.

In the process of going through things and putting away Christmas Stuff... I ran across a book of poems by Samuel Green. 

I was looking through and found the following.  I think it is appropriate for this time in our lives.

October 18 New York City

On the Subway an
Polish man takes me in charge,
rides two stops past his own
to make ceratin I find
The right place to get off. When I try
to thank him, he shakes  his head
no, forget it.  No one, he says,
should be lost when someone else
knows the way.

Day 8 and counting.

Quiet Sunday. on our "Itinerary" (At Children's we have Schedules) at SCCA we are on a cruise back to health and we have Itinerary.,
Breakfast at Salmon Bay
Short Walk to Market
Continue taking down Christmas
Putting of Silver Ware away.
Putting of Christmas Dishes way
Working on moving the secretary from the living room to the Kitchen because we could use the drawers, we have the secretary so the move is free.
Work on the basement a bit.   Not much.  Margaret has been doing laundry so I don't want to get in the way.

Realize how stressed I am because my back just seized up.  Damn, Take really good drugs to help.
Not much.  But the trick is to keep moving forward.

Oh, my really great datebook arrived yesterday.  First entry's have been made.  I am debating if it is a daily journal or if I should look to the pages ahead.  Looking ahead is hard right now.  I am going to fill it with coming events.  They will just be different. No school starts and ends no parties, not events not plays, no movies. 

Day 1 Transplant
Day 30- Engraftment?
Day 80 Graft vs Host evaluation
Day 100..... out of the SCCA back to Children's Hem/Onc.

So I will put day one in the datebook as soon as the first unit is hung....... Then we will really start.  Until then,

Bone Marrow
Meeting with Radiology at UW
Meeting with Child Life
Meeting to sign off on the Transplant
Meeting with.......................

Check in to the Hem/Onc Hilton eight days from today.

DAY 9....Paper

Mary-Elizabeth loves to be organized.  She has been working on the world's cutest notebook to keep track of her life and her transplant.

She has a book, and lists, and dividers and stuff and places to put cards.  I love that she has taken over this part of her treatment.  Her meds, her dressing changes, her appointments. 

She is enough like me that when she is not deep in that place she will soon travel, then I will step back in and be the keeper of the note book.

Together we will track the journey on paper, in a notebook, between the tabs with the perfect pens.

Now to find the ornament boxes to take down the tree.  We will need other things to make the nights seem less dark.

Day 10

so I really really felt a need to run away.  There is a bunch of anxiety surrounding the upcoming transplant.  So when I get anxious I eat, or shop or try to sleep when I don't need too or just move things from one place to another. 

So yesterday I just wanted to be away but when I am away I feel like I need to be not away.  It is quite a conundrum.  So I started to look at the places I might want to go.  Down town spa hotels, suites, or maybe the ocean, or maybe Vegas or maybe ...........  It was fun but did not seem to make that anxious feeling go away. 

Then something sort of cool happened.   I had heard about a place in New York called the Purgatory Pie Press.  Each year they make a date book.  Long-stitch leather bound datebook, printed from reused vintage hand set wood and metal type onto up-cycled obsolete sea charts. Week-at-a-glance datebook, inter-office envelopes stitched in for pockets. Each binding is unique--various leather and thread colors available. Leather is by-product from New York City's fashion industry. Map paper is one-sided--so some pages are white, others are random maps.The paper is re-used, so imperfections abound--but we love them. We have made a limited edition datebook every year since 1980 (for 1981) at Purgatory Pie Press. This signed and numbered edition is limited to 36 copies. Designed by Esther K Smith--hand-set wood and metal type and letterpress printing by Dikko Faust

Since I had heard the story very early in the A.M. I got up and looked up the story on the web, found the name... Purgatory, seemed so apropos.  Then I did a quick search and found that they sold them on Etsty.  None were found so I e-mailed Esther.  She told me she would look.  I told her I understood that they might not be available but thanked her. I figured that if they only make 36 of these guys that I would be out of luck but would make sure I snagged one next year. 

So yesterday as I was sitting at the SCCA, I received an e-mail and Esther, my new best friend in New York, and she had found one and put it on Estsy.  Thanks to my I-Phone (thanks Maggie and James) I was able to secure the item immediately.  The Date book is on the way. 

 Sort of funny how the desire to leave just left.  I guess they don't call it Retail Therapy for nothing. 

So we then went to the Space Needle for a great lunch.  Full of Tourist types but fun and a perfect day.  Food was really really good.  Cannot beat the view. 

Day 11

Quiet time.  Good time.  A bit of freedom, the understanding that the days are slipping away so we are getting ready.

Yesterday a blood draw, meeting with the doctor in clinic.  Still waiting for tests to be done,  There was some concern about how the LP was done in IR for the IT.  (I don't think I can type that enough)  Still need a bone marrow aspiration.  The extra time I was concerned about seems to have been needed.  It is such a complicated process.  Today we go and she has a dental appointment.  The mouth is a huge source of germs that can enter the body so they need it to be in good shape. 

I am also feeling really really antsy and like I should go somewhere for a couple of days. I also feel like I can't go... Maybe this is the time I should escape. I need some beach and wind and a dog with me.   I will do some research to see where I can do all those things.  
We shall see.

There is one eye lash left.  It must be time. 

NO NEW CAR.... THE TWO UNITS OF CORD BLOOD

ARE AS MUCH AS A CAR.... $40,000.00   We will continue to drive the 1995 Honda accord station wagon until it composts......

Day 12......Hopefully Transplant Approval.

Quick trip to SCCA  we met with Angelica our SCCA social worker.  She can be rattled.  While Fred was calm and collected when shown the large kitchen knife and the roman candle she was visibly concerned.

Mary-E had and IT/LP (chemo in the spinal fluid) in IR (interventional radiology).  Anessia was behind so they tried to make her do it without.  She stood up for herself. There was no way she was going to have it without being under.  Since, as she pointed out, they have missed even though they have huge floroscopes and a 150,000 viewing screen.  (I wonder if they have to eat the hospital food.) 

Meb has 5 more of these before she is done.  One more before transplant. I will figure out who needs to have a small reminder that she is still a kid, one that has had significant trama around LPs and will never ever, ever, never have someone try and make her do it without being a sleep.

So today, today is simple, early morning blood draw.  Meet and Greet with Anne Wolfrey (middle name Elizabeth).  She will explain what they have found in the worlds most extensive physical and hopefully will sign off on the transplant.   Then we order the $ 40,000.00 cord blood units.

Someone goes and gets them and brings them to the Hutch.  Then they keep them until the 24th when they thaw the them, sort of like Rhodes bread.

Deep breath Sally.  I love this, we hate the idea of what has to happen to make the transplant successful, (chemo, radiation) and the side affects, (no counts, infection, sores in places we don't even want to think about) but no we are at the place we are begging to be okay to go through transplant....  Go figure.

After the meeting and the spending of the amount of money it would take to buy a new car to pay for two units of cord blood, we go have our toes done.  Seems like the thing to do.

Day 13,

Meeting at the SCCA with a Social Worker.  In all honesty we intend to be polite but Fred Wilkenson is the only social worker we have the strength to torture.  He is the vestige of what we have left of our long time much loved Hem/Onc team and we are not going to jump ship.  Of course if they offer us a new car or something we might have to re-consider.

Meb has to have a Spinal Tap/Chemo today.  She is going to go to the hospital with Joey.  Her request.  I am sure they will do fine.  Mary-Elizabeth's friends will leave the area soon so it is great she can have some more time with her peeps. 

I woke up this morning and realized that it had been exactly a year since Dad decided to depart.  He has quite a job to do right now so he had better focus!  Belle says he is still around.  I certainly could use a visit right now from him. I am probably off his list because I don't even know who won the Rose Bowl.  I hear that Oregon played yesterday...

Day 14 a Count Down to Day 8

Day 14:  14 days before Meb is admitted to Childrens to Count down from Day 8 to 0 and then counting to Day 100.

I think that the count down thing is that these really really smart people all wanted to be Astronauts and had to settle for life saving careers.

Today Day 14, is a bright star day.  No clinic appointments and fun scheduled.   Meb and Joey are going to do some shopping.

 I am going to think about taking down the tree and re-arranging some furniture.  I am going to put away some cloths that Maggie so kindly washed, dried and folded.  Also a chicken and some green will be thrown into the oven.   The dogs will be given a long walk in between some of the wind we are expecting.  So Day 14, is a normal day.

Challenge for the day.  Make my phone sync with my computer on I-Tunes.  Now who ever thought we would use those words. 

Also I will be playing endless games of Temple Run and trying to figure out what Tumblr is but won't be admitting that.

All I want in 2012 is to make it to 2013.

So most were celebrating the end of 2011, a chance to forget the bad, relish the new and plow ahead into 2012.

Meb went with her great friend Joey to an early party.  They hung out until the  mass of humanity became dangerous and then they came home. 

Return happened around 9:00 pm and they started to watch James Bond movies.  Evidently life will not be complete until  all have been seen. 

 I am really don't know much that went on because about 5 I crawled in bed.  I was doing a bit of hydrocondrialation.  I just needed to just pull my head back in the shell and think and get ready for what will be NEW in 2012.

So so much of the old is not working and new is required.  We take so much for granted. We just assume that each day our heart will pump and our blood will circulate and that it will do its job.  Our hormones will be released when needed and not when they are superfluous. Most of us don't know that body systems have back up systems.  If you have insufficient cells to carry oxygen, you heart just beats faster.   Sort of amazing.  Back ups, not something perfected by NASA.

So here I sit.  We have a lot ahead of us in 2012 that will be new.  (I have to stop saying we.  We do not have cancer.  We do not face huge doses of chemotherapy and radiation and weeks of pain and agony and waiting. )


I am asking for one new thing in 2012.  I want my child to have the miracle of a new immune system and bone marrow that will just do it's job.  Nothing special, nothing that most people don't already have a system that dies its job and does not try to over achieve.  Reds, whites when needed, platelets when she runs low.  A few T cells and other things thrown in for fun. 

 Not much.  Not a car, or a trip, or a new diamond or second house  or sun 322 days a year, or an organized perfect house or a matching gravy bowl or even financial security, I want to know that we will make it to 2013 and beyond.  I want to be sitting here in a year, in the dark, at 5:00 in the am on the first day of the year and know that there is a sleeping child in the room close by that has finished watching all the James Bond movies that did not have to leave a party early because there  were people there.

That is my wish for 2012.