The Christmas Sneeze and other reasons to Panic

The sneeze, the dreaded sneeze. 
The request to go to the MALL.
The failure to find the Crab Bisque Recipe
The realization that there is no Christmas Wrapping paper
Knowing the House Keeper is coming and the house is lost under the debris which is Christmas.


Reasons not to Panic:
The Sneeze appears to only be a sneeze
The mall is empty at 10:00 am and it takes less than an hour.
I did not sell my cookbook with the best crab  bisque recipe in it and was pleased to have a chance to look through all the cookbooks and revisit such good good friends.
It is fun to wrap everything in Birthday paper.


WE have 24 hours to dig out.  I am going to look at the house as if a blizzard has hit and just start clearing a path or two.

Merry Christmas.

Restful time....

We have received our packet of information from the Hutch...

We have one more appointment as a Hem/Onc patient tomorrow and then we are transferred to the transplant team.  We are on the Green team and will meet for the first time on the 27th and the 28th.  There will be a series of tests while they determine whether or not Mary-E is really a transplant team.  There will be everything from blood work to another Bone Marrow Aspiration and a million more tests.  It is almost as if we never did any of this stuff.

After the tests are put together they will decide if her body can take a transplant and then they have to get the insurance company to sign on to the plan.   The Hutch does not like Blue Cross of Illinois very much.  They are known for not responding and for delaying the process by as much as a week.

Now a week might not seem like much time in the regular world but it could be fatal to Mary-Elizabeth.  Every day that she is not moving forward without chemo she can relapse or she could catch  a cold or ........  I don't even want to think about all the "if we delays" It is just an added layer of stress.  I am sure moving the insurance to Illinois was a good corporate decision but then while corporations are now people, they  don't have children that are deathly ill.

So after we wait for some insurance lackey to second guess the Hutch, we wait and wait.  When the waiting is over. 

 Hopefully that will not keep her from being admitted.  She will have three or four days of intense chemo to kill her bone marrow.  When we ask what they will be using, they are very vague and not very forthcoming with information.  Maybe I don't want to know since there is no other option or input.  I will not be picking the poisons during this process.

After the chemo she will have 4 days of total body radiation to kill the rest of her bone marrow.  This will happen only on Monday to Friday so there is no way to know the schedule. 

After her bone marrow is dead, she will be given three small bags of cells.  It is a transfusion that lasts a couple of hours and then....  more waiting.

This will be waiting on a grand scale.  We already know that it takes longer for the cord blood to know what to do.  The stem cells will wander around her body for a while and by the 30th day they should be working.  During the 30 days there is a constant battle to keep her alive.  Transfusions, TPN, fluids, you name it they will be doing it. 

After they baby cells go to work Mary-Elizabeth will have to build a new immune system.  All her shots, all of her prior immunity will have been wiped out.  When asked what she is allergic to, she won't know.  It is like having a baby and a sick one at that.

So......  new adventures. New nurses, new doctors, new team coordinators.  The only person we get to keep is Fred, our social worker.    The hope is that things go well and we get to go back to Hem/Onc post transplant.


There is a tunnel, we have not entered it yet.

On a great note, she was able to go to the Gonzaga game and they won!.  It made her Christmas and maybe her year.  She was able to wear her Kennel Club shirt and be with her peeps and feel normal for a few hours.

Tree is up, the outdoor lights are up, Lily is home from Spokane.  The house will be ready for Santa and the Christmas Cake is ordered.  What could be better.

It is a dark but restful time.  The candles are casting a gentle light and the music is good.  The dark is appropriate to keep us focused on the journey ahead. One we are preparing to take.

HIPPA

The think that my lights could use some help.

So HIPPA, the beast that won't quit consuming common sense continues to plague us. 

I see that the 4 month old baby that flirts with everyone that walks by has no parents here. 
"I can not admit or deny we have any baby's on this floor"  Really, I can see that child, there he is, why can't you tell me?  It would be a violation of HIPPA. Can  you let me know the provision.  I have to go take care of the baby.
I see Allie is checking in, because her chart has been delivered to the floor and sitting on the front desk? We can neither admit or deny we have a patient of that name.  In fact we don't have any patients at this hospital.  If we tell you we have patients we would have to kill you.
So since you don't have any patients, can I upgrade my room? You are a trouble causer.....

So HIPPA has reached the Psychic world.  Margaret went to consult the Tarot Lady on Whidbey Island. She wanted to ask about Mary-Elizabeth.  Tanya declined and explained that she could not do so because she did not have our permission to speak to our spiritual guides.

Really.........

Back to the hospital tomorrow for more blood work.

Worry....

No thing is really happening right now.  I am home.  Mary-E is with her dad and sibs.  3 of 15 light strings were not working when we tested to put up outside.  The Eclipse was a bust because of the clouds.  Christmas cards are being prepared for mailing...

So for the next couple of weeks we are doing normal things. 

More worry but not really.  I am working really really hard to recharge my batteries.  Naps, reading, a bit of NetFlix.  Cooking some dinner, folding cranes, just focussing on this moment in time.  The next Christmas card, the next trip to the post box.  The next new discovery.

Todays Discovery:

When you are walking the dog at 5:15am and it is 28 degrees, the world if sparkly...glitter everwhere sparkly... sort of cool.

so is this a good thing?

I know people love to read and my writing has been something that has been a life saver for me.  It is nice to know that non-family and friends have found it useful.

The Rhythm of Cancer

So here we sit and we sit. And wait for the next song to begin. It is a simple dance. The steps are basic


1. Go to Childrens
2. Have blood drawn
3. Wait 1-1000 2-1000 3-1000.......
4. Visit with Karyn.
5. Receive results.
6. Determine if we are on doing a new dance. or stay with the current one. There are several versions. Some allow for just simple steps some for fancy steps, some require new learning like when platelets are needed and there is much fancy foot work to figure how to give them.
  Sometimes the results let us go to a new and improved dance class.
6. Have new chemo. Pause 1-1000, 2-1000,3-1000. Wait for the counts to drop. 170 to 129 to 97 to 42 to < 5.
7. Do the dance until the numbers return to normal. Add some more blood add a few special platelets add some Neulasta for a bit of spice.
8. Just when the waltz is really settling in go back to the hospital for more chemo and we start the dance again.

Repeat: again and again and again.  



Counts up: we start, counts down: we pray for them to go up so we can start again...  We meet our various partners and we all commiserate about the ball and how it is going.  Who is getting to dance, who is waiting for results , who is waiting to dance and who is waiting to wait to dance.  We chat like old friends although we each are dancing to a different tune.  We basically know the music but each have different partners and different dresses and different hair styles.  They are all related but similar.


Some times the dance is success, sometimes it is disappointing.  Sometimes great triumphs come from a set of lessons, sometimes we are sent home to try again. Sometimes we don't get to go home at all.  We are always wondering how the next Virginia Reel will turn out.


The hovering mothers would be familiar to anyone who came to observe.  They fuss, they talk about how the men have all gone to smoke and drink in another room.  We criticize the food, the music, the eligible partners and all are secretly hoping our child will be the one chosen for the best dance and have a great triumph. 

We do this over and over again, glad we still get to go to the ball. Afraid to go each and every time, knowing we might be able to ever dance again, but praying the dance won't end for us.

Finding My Voice and Having It Heard

Saturday.  Back at the hospital but really rested and relaxed and with clean hair.

Yesterday was a whirlwind of people listening and things happening.  The room was cleaned and the fridge full of really old food was cleared out and the head nurse came to discuss issues regarding how this part of the hospital is so very different than the Hem/Onc floor and there is a meeting set up with the head of dietary and we are going to add some other people and .......

But this very lovely, full of really green lettuce and good lemons came out of the kitchen.  Along with a great plate of strawberries and lots of oreos and milk.

The kitchen also worked on getting our roommate Katie some beef broth ramen that she was Craving.  They were both so happy.  

When they are so sick and have lost so much and are not able to go out into the world and everything is dangerous and it is not possible to even be touched by the world, something warm and satisfying is wonderful.  I would hope that the Chef would come as meet the kids he made happy, maybe next time.

Thank-you for making it happen Chef.

The omelet was wonderful the satsumas are great and she has ordered her favorite BLT.  

I love progress.

We Had A Meeting

$8.95  Pallinos UVillage.  YUM

So we had a meeting. It lasted an hour. The Chef does not think I am funny and we know I am .  He clearly did not want to meet with me but I really think we did a good thing and I appreciated him taking the time. When I asked him is he had ever met with a parent before he said he had not ever had this exact experience.

 I can totally see how this feels like an unfair personal attack but this is literally life and death for both Mary-E and me.  If we cannot figure out a way to feed her from here and I have to eat the food for three months, she is going to weigh 12 pounds and I am going to weight 5000. 


I explained my concerns and fears and he explained the current limitations of the kitchen and the staffing. He was hired and given blueprints for a new facility and then they did not do the remodel.
 He won't be in a proper kitchen until 2015. He is clearly frustrated and has not been given resources to do what he wants to do. He has the ability and will be doing a top notch job when he has the new kitchen.  You have no idea how many times I heard about what is going to happen.

The Kitchen is already 125% above capacity.  When I asked why they didn't utilize a catering company I was told the expense was prohibitive.  I wonder if all those folks that give 1000's of dollars to the hospital while sitting at fancy dinners know that are kids are reduced to fake mashed potatoes, premade toasted cheese sandwiches and canned corn. I don't ever want to hear what "the children like to eat".  This is not Disneyland.  They can not have a healthy life on Hot Dogs, Pizza, Mac and Cheese and breaded chicken stuff.  Remember, this was the place that sponsored the Childhood Obesity Conference.


 I am trying to practice my Buddhist philosophy which requires me to focus on this moment.  At this moment I have very limited choices.  True I can leave the hospital for every meal or bring in provisions or order in or eat from the cold cases of food brought in from various outside providers at a greater expense. 


As he sees the situation he can't do much to institute much change. The hospital is sort of like the
Titanic and change does not happen without going through a huge and complicated process that requires many committee meetings. Chef presented as someone that had hit his head against that iceberg (maybe that explains the lettuce) way too many times.


So pretty much the answers were:
Can we order when she is hungry?
No, we cannot do that we don't have the staff, the space, the budget and the general support.
Can we get something other than chicken legs?  Children like chicken legs. But do the other patients like the teenagers and young adults? No answer.


Can you order and reheat better food for the cafeteria?


Everyone likes the food in the cafeteria. You might like Tomato Bisque  but everyone else wants Campbell's Tomato.  Everyone likes iceberg lettuce.  The hospital is not the food police and if they like deep fried batters green beans let them eat grease.  We feed a huge variety of cultures like Hispanic and Somalis. (I know my former husband from Mexico would not go near any of that food and resort to a hamburger out of desperation).


Can we do something to feed the kids on the hem/onc floor on a kid by kid basis?


Yes they can call the day before and tell us what they want to eat the next day and then we will deliver it at 8, 12, and 5. 


What if they are hungry at 3 am? Can we call the kitchen and get food?
No, the nurses have peanut butter, crackers, juice, Popsicles, mac and cheese.  What if they want teriyaki chicken...... no answer.
Are you aware that no one is awake on the Hem/Onc floor until 10 am and most all of the breakfasts go to waste.
      We delivery trays according to when the nursing staff asks. 
Round and round, head banging..........


Could we have some sort of on floor cart everyday that let the kids have toasted bagels, juice, fresh cut up fruit?


I don't know but I will look into it.


Could food be delivered in small boxes and not having hot food covered by plastic wrap?


Sure, I will look into that.




So what did  I take away from the meeting.


Well NO is the most popular answer.  WAIT it will better.  SORRY this is so hard for you.


TO DO LIST:


THE KIDS



It is not just hard for me but for the other parents and caregivers that have to leave and bring food and buy food.  This is hard for the parents that have to be here.  Yes, I want to be able to stay if I need to and eat here, three HEALTHY meals a day.  I want my daughter  and all the hem/onc children to have access to what they want to eat when they want to eat it.  They just have to have that.  Every day 24 hours a day.  No questions asked.  This institution has to, must, do what ever it takes to make it happen.  It is not a someday, we are working on it, we will get there, soon issue.  It needs to happen NOW


The teenagers need to meet with the Chef for a chat on what they want to be offered.  He could come to the floor, bring something special for them to try and get their suggestions. I think he would find a group excited to be talked to... this Generation was raised on Food Channel.  They would think it was soo sooo cool.




THE CAFETERIA


Some suggestions that take no more room or staff.


1. Whole Wheat buns
2. Alternates to onlybeef hot dogs since this is offered 3 times a week
3. Higher Quality Lettuce and better choices of food.  Way too many calories and not enough protein.  I want calorie counts posted. 
4. Real Mash Potatoes (I know they come pre-cooked)
5. Good Roasted veggies on each hot bar, not just broccoli on Hot Potato Bar
6. Veggie burgers at the grill
7.  Tomato Bisque, Italian Wedding Soup, Curried pumpkin.

THE PLAN

Seems to me I am going to have to talk with some budget and finance people. I am calling the head of dietary today.  I need to have an idea why anyone thought it was a good idea to cut corners on kitchen staff need and food for the kids. Happy to see that the hospital and Children's is addressing Obesity while offering awful food.

I think it is short sighted to serve unhealthy fried food and blame the consumers.  People eat good food when it is available.  They eat what they have to when it is not. There is a whole program at the Odess Brown Clinic to teach children good choices.  I wonder if they ever come here.

  Hey, I am no shrinking violet.   I have eaten my share of junk food.  I eat healthy food when I can and have even given up fast food for lent on many occasions.  The cafeteria offers the worst of fast food.  High calorie, low nutrition.  It needs to be better and I know it can be better.

Oh when I asked the Chef why we couldn't have satsumas, he did not say "no" and wrote it down.  I am hopeful.

Thoughts on Transplants

Terrified
Excited
Dread
Concern
Exhaustion
Thrilled
Disbelief
Did I mention... Dread

I so don't want to be here.  I so never wanted to travel this path.   Every parent has a dread, a fear, an uncontroled worry.  When MEB was little, mine was Spinal Menningitis.  I was sure every fever was going to be permenant brain damage and death.  My sister-in-law was afraid of choking and cherrios.

This sort of fear transfers to something else in Cancer World.  We all fear relapse.  It is something you worry about all the time and it never leaves your mind yet we are all sure that we have said the special prayers and done the right dance and purchased the right organic vegetables and relapse will never get your child.

Then we all have lots of individual fears.  Feeding tubes, pain killers, germs, fungus, colds, chicken pox, plague, witches, the usual.

Mine was transplant.  I was so relieved when Mary-Elizabeth went into remission, did not relapse, and made it through treatment.  It was not smooth sailing, it was a rough couple of years full of weird side effects and long term side effects and hives and shortened tendons and loss of gray and white matter but there was no transplant. 

 It was such a relief that we never faced that battle. I saw those room, the weiry parents and exhausted kids.  While our children were sick, somehow they were sicker, so much sicker.  It made me so sad.  I would see the dark rooms, the nurses gowning up and numbers of people in and out.  Then the kids would disapear.  I would wake up and there would be a room, previously closed for days, wide open and empty, the child and the activity would be gone. It was so so scary.

We are so so ready for this and yet so not ready.  I guess we don't have a choice so we will go and do this.

Right now we are working on surviving the 5 days of chemo.

Mary-Elizabeth is awake and talking.   

Gravy Boat Envy

Nothing spilled, everything was hot and good and fabulous, the table was perfect, the company was well behaved.  I don't know what could be better. 

It was everything Mary-Elizabeth asked for and more.  Except perhaps the matching gravy boat.  While at dinner there was much discussion on the "need" for the matching gravy boat. 

Just having the discussion is absurd and because the child has cancer and is facing this horrible upcoming transplant, there was even discussion that everyone should contribute and buy her one. 

HOLD ON  

No one needs a gravy boat.  Gravy can be put in lovely bowl, a well designed pitcher or even a large mug of sorts.  It is something that is made in this house once a year.  Yes, once a year.  Never do we make gravy with the crown roast or the Prime Rib.  It won't be needed for the Christmas Crab Bisque or ......  Leg of Lamb. 

I am sure that Good Will will have an appropriate vessel now that I know Meb feels the need for such an item. 

She wants everything to match, I want everything to be lovely and sort of go together.  If it all matches you don't need to look and discover the interesting and fun item on the table.  Matching is overrated.  Maybe it is her Catholic School uniform education.

Thanksgiving was wonderful.  Thank you to everyone that made it a very special meal.

Turkey Day 2010 and 2011

So last year the snow gods did not cooperate.  Thanksgiving lacked the child and so the table was not properly set.

This year, three days after making plane reservations for the child to fly home on Southwest, my new favorite airline, she had a very special flight from her life as a successful and happy college student to a relapsed, bone marrow transplant patient at Children's Hospital.

Now we all know that I whine about that and kvetch and scream and yell and cry and do some more cursing but when it all comes down to it, it is what it is.  This is a new journey and one that we are all traveling together.  The old "over the river and through the woods"...

We are in the woods, deep in the woods but today we are able to stop and find a moment to gather with friends and family for some celebration time.  We feast today and diet tomorrow but then today we feast.  We share the good things in our lives and help recharge tour souls for the next part of our trip through the woods.  (Chemo starts again on Tuesday)

Oh, dear, I better get the turkey in the oven or the perfectly set table will not be properly utilized.  And where is the gravy bowl, and why don't we have enough matching butter pats and.........

Happy Normal Thanksgiving, may all the pies be perfect.

More Cord Blood Information.

Just read until it gets scary......


http://marrow.org/Patient/Disease_and_Treatment/Treatment_Options/Bone_Marrow_Transplants/Cord_Blood_Transplants.aspx

So...... We enter Cord Blood World

so no Bone Marrow Match but they have located sufficient Cord Blood.  I am not really sure what they means other than a mother, or several mother's recognized the need for cord blood and donated it.

I love mothers.  They don't just take care of their children, most also worry about other children.

I think this is our general Schedule.

1. 5 days of Chemo 11-30
2. Meet with transplant people on 12-27
3. A bunch of stuff
4. Transplant on or bout the 16th of January.

Takes my breath away.

Crane Folding and X-File Watching

So....   I am folding cranes.  Of course I am folding them in a completely different manner.  I just could not do that weird, fold it inside on all sides to make it look like a weird kite.  So I figured out something else.

I am just folding. Folding while I talk on the phone, while I watch season one of the X-Files.  Now what should I be doing?  

I should be doing home things.  Getting ready for Thanksgiving, laundry, sorting of stuff so Liz can sell it.  Thanks Liz.

Dusting the house because of the downstairs bathroom construction. ( I have not peaked but there must be white tile because that is the color of the dust.)  Heidi continues to assure me that it will be fab..... Thanks Heidi.

Repacking the car for the next impromptu trip to the hospital.

I should be finishing quilts and writing thank-you notes and ...... endless list.

I need a few moments of mindlessness.  I need to not worry about the Insurance company denying the Air Ambulance or procedure number 854763562 and asking her dad to provide more information on why it is medically necessary and why we have not heard about a bone marrow donor and whether or not I will ever be able to work again before the wolf breaks down the door....

  Okay....... see why I need to fold cranes and watch X-Files. 

Temp:  27 degrees
News:  Ashton and Demi Moore are splitting up and they found a triangle shaped alien skull in Peru. 

That is all the reality I can handle right now.

Time Certainly Passes when you are not having fun.

Oh dear.  It is the 16th of November.  I am a whole year older.  I feel a million years older than I did just a few months ago. 

We are both exhausted and worried and just deeply into handling the side effects of the side effects. 

 So this is how this goes:

Relapse
Get lots of Chemo
Have your counts drop
Have them give your bone marrow a drug to boost the production of white cells
Have the bone marrow really try and do a good job giving you of producing cells
Have your bones hurt and let you know by making your back and hips and shoulders scream in pain


So here we are, in the hospital after two trips to the ER and a midnight admission. After two hours of waiting the nurse brings the magic elixir and the pain goes away. The magic comes when asked for and tomorrow the elixir becomes some pills.  Home on Friday?

The other thing that works is sleep.  I slept, Mary-Elizabeth slept.  Now we might be up all night but I don't think so. 

Cancer is so so complicated.  It just is.  No one is the same, no one reacts the same way.  The body is complicated, cancer is weird, and I must give up the expectation that there is a single moment during treatment that will be predictable. 

  Every problem solved brings a new issue to be addressed.  Every time you think that there is a solution a new weird thing then something new pops up.  Nothing, nothing is easy. 


It breaks my heart to see my child try so so hard not to cry because of her pain.  I am going to try and get some good sleep. We are going to be happy that the pain is controled, that time will do its best to make things better and the quest to make the food better at will continue.

Just know that it passes the time to find out that Committees are forming, people are talking and the Chef continues to deep fry but he knows we know and change is going to come, but sort of like everything, there might be a few side affects to deal with...... 

Things I Never Wanted to Know aboutj Platelets.

They can fall from 22,000 to less than 5000 in 48 hours

Despite a ton of Benadryl, Hydrocortizone and Tylenol they can cause aniphylaxic shock in seconds.

The Hem/Onc staff can give Epinephrine in a moment's notice.

If your child stabilizes and does not get too wheezy they get to come home and go to bed.

She has to have 50,000 to do her procedure on Wednesday, so we will try again tomorrow. 

Chef Walter and I are going to be friends.

I am trying to focus my energy.  I am going to finish one book at a time.  Finish all the quilts before I start another one and I am going to fight one Mary-Elizabeth battle at a time.  I am going to make friends with Chef Walter and when we have to be at the hospital they are going to feed her all her meals..... 

We shall see how that goes but Chef Walter and I are going to meet while we are there next.

Progress

11/11/11

Hoping today will be auspicious.  Maybe this is the day the match is made.  If a match comes soon then she does not have to do this round of Chemo again.  She is only half way through but there seems to be progress.  Mouth sores are better, she was up a lot last night.  Unfortunately the mouth sours are not just located in the mouth.  The entire intestinal track is involved. I will spare you the details.

Good News, the guys are here working on the mystery bathroom. 
I think I might be able to bake fruit cake this week-end.  It will have to be distributed later than usual but then it is still good. And we are having a big wind storm, love those. 

Time to get ready for Reds and Platelets at the hospital.  Good for at least 100 pages of War and Peace.

This is me trying to get the Chef's Attention

Message to Chef Walter.

 

 

Message body

We are scheduled to be re-admitted on the 29th or 30th of November. I would love to have a plan for the hospital to feed Mary-Elizabeth during her stay. Could we plan to meet on one of those days. I will let you know which room we will be in and maybe we could talk.

I look forward to meeting you and working with you. 

Lookemia is sort of Like Living in Seattle and being a Weather Optomist.

So if you live in Seattle you have to be a weather optimist.  You have to not listen to the weather and you certainly never ever believe that it is going to rain.  Now that does not mean that you don't know it rains or own both a good rain coat and a seldom used umbrella.  You don't focus on the amount of rain or the frequency but rather you notice, with great alacrity the moments, and sometimes seconds of blue sky, shafts of sun and glimmers of sunsets.  If you do that Seattle is a very lovely often sunny place with a few rain breaks.   One never hears someone from Hawaii complain about the rain, no they have decided it is sunny there with a bit of rain.  That attitude is how I have loved and lived in Seattle for 25 years.

So Lukemia is like that.  It is a horrible dark, scary, painful, dreadful place.  It is full of procedures and side effects and side effects from the meds given for the side effects.  It is a complicated place where there is no exit once you enter. 

Cancer World sucks so so much.  It makes everything hard and frustrating and it makes even the nicest person blow up at the admitting girl because it makes no sense that after checking in on one floor we have to do it again and have a new band and sit around with a bunch of germy people and wait for hours and hours while your child's blood sugar drops.  It is horrible waiting for an hour for the doctor to come tell you how the procedure has gone because you have had so many times that the wait means complications and not good news.  Just say Day Surgery is not the Hem/Onc clinic.  Hem/Onc Fabriche egg, Day Surgery plastic Walmart egg.

So in all my complaining, there are moments, good moments.  When the Hem/Onc peep(Terry from England and your ANP Karyn Brundige) deliver your chemo to Day Surgery so you don't have to fret any longer about getting Chemo on another day or being off schedule.  (Who knew you would want to have your child chemo?)

So yesterday, a day that started at 7:20 am and ended at 4:15 pm, had moments of blue sky and sunshine.