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. 

So, Treasures are Falling From the Sky

Cancer has given me a bit of time to do a few things.  Most are not on the top of many people's to do list but then my list is always different then other peoples.  I am a firm believer in strike while the iron is hot.  Especially now when we have so little control over anything. 

So when my dear friend Liz Selleck offered to get rid of "stuff" from our house and put it on eBay and Craigslist, I was able to recognize the possibility of a win win. Liz would be able to further develop her entrepreneurial skills, I would have less stuff and much more needed money.

So she has been helping take some things and sold some things and is making everyone happy.  Today she came to my house and was very encouraging in the sorting project.  We found several boxes that I could let go and it was sort of like Christmas.  I found things I had not seen since I packed them several years ago into clear plastic boxes. 

So we filled her "Clown Car" (a Honda Fit) a car that fits lots and lots of clowns and she drove off. During the treasure hunt, I found this:

You are looking a broken bolt from the Golden Gate Bridge.   We found it and I had to think about what it was for awhile.  My dad gave this to me for some reason.  Any family members that remember anything about this are free to step up and explain why our dad would have this.

MEB is resting, we all are resting, we go back tomorrow for a day of clinics and IT Chemo and who knows what else they might come up for us to do.  Will try to make it a useful day.   Maybe I will finish War and Peace.

Home After 6 Days.

We are home. We are home.  We are HOME.

Now, how to stay here. 

For the last seven days, six nights we have been at Children's.  They love how much disease has fled from her bone marrow and her high return of things like platelets and red blood cells and Neutraphils.  So she started the next 42 days of therapy called Intensification

They call it intensification for a reason.

36 hours of High Dose Methotrexate given along with dexamethazone and Thioguinine.  Then 12 after it ended they started72 hours of Ara-C. 

So guess what? She feels really really lousy and is hunkered down waiting for her counts to drop into the basement again, and hope she does not get sick before Thanksgiving.

Then on the 29th of November we do  6 days 5 more nights of other chemo.

The donor search is on. If they find a donor, we meet with the transplant team.  There is a good chance we might have to do this round of chemo again if the donor is not found, or she gets sick or..... the list of possibilities goes on. 

She has a long long road ahead of her and is pretty down right now. Mary-Elizabeth is a fighter and a trooper and real sport but most of all she is a brave confident young woman realizing her worst nightmare.  This has been and will continue to be the worst thing in her life.  It is pretty hard to be positive all the time no matter how much that is part of your basic being.

She has a great attitude, she does everything perfectly, she listens to the doctors, she advocates for herself and she feels like she has let everyone down.  She told me she was so sorry for making all of us go through this.  I in turn apologized for not giving her a better set of genes. 

I pulled out all the stops, Barnes and Noble, North Face and then Specialties.  Did you know that each cookie is TWO servings?  I really did not need to learn that today.  I am going to stick to the words from House of Seven Gables:

Prolixity
Inveteracy

Ingurgitated
Irrefragably
Whencesoever

Most are not even in a modern dictionary.  Got to love that.......

Almost Home

Tomorrow at this time we will be done with this 6 day admission.  No counts until next week.  She just feels lousy.  Really lousy, not wanting to go to the cafeteria to seek out real food between 1 and 4 am.  Rumour has it that there is real food because they want to be good the the people that have to be here.  I guess our staying here is optional.

Chef Walter Speaks and I reply.

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FROM:

• sally lanham

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• Bronowitz, Walter N.

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• Sally Lanham

Message flagged

Saturday, November 5, 2011 9:17 AM

Message body

I guess this is what I would have liked to see:

Seattle Children's Hospital is pleased to announce an entirely new menus for the cafeteria.The food served will be vastly varied. For example, the ever popular "Hot Dog Bar" will change next week. Instead of just hot dogs the bar will now include, Polish Sausages, a variety of chicken, German, Italian and other varieties. The "dogs" will be grilled when possible. There will be a number of new "Bars" added in rotation featuring Thai, Spanish, Indian, and Greek themes.

Each hot bar will have no less than three prepared roasted or steamed veggies. There have been rave reviews about the roasted butternut squash, fennel, onion and garlic combination closely followed by the always favorite lightly sauteed green beans, feta and shallots. The Chef has determined that these sorts of choices make a huge difference in each meal. Olive oil will be the new butter but then we all need our butter.

There will be a number of new home made soups. African Peanut, Carrot Cashew, Potato Leek and Kale Mexican Chicken soup, Ciopino, Tom Kau Gai, Won-ton, Pho and a number of other delightful selections. There will be fresh bread and rolls baked on site as an option. The kitchen will also be producing a new line of comfort deserts each day. Bread puddings, cinnamon rolls, home made cookies that will be baked all day long and of course the ever favorite, Chef Walter's ooey gooey brownies and apple crisp.

Despite sever limitations in the current cafeteria, the hospital, under the guidance of Chef Walter is completely revamping the choices made available to the staff, families and most of all the children suffering from cancer and the treatments needed to battle this disease.

The hospital, one of the foremost prestigious in the nation will begin immediately to provide healthy, appetizing food for the "Cancer Kids". The dietitians and the kitchen staff will institute a program where a child can call at any time and have the food of their choice delivered to them while it is hot and still appetizing. The staff understands that while it might be ideal to ask a child on high dose chemo therapy what they might want to eat the next day, that because of the treatment and side effects. The kids will know if they want a fresh Ceasar salad or teryaki at 3:00 am it can be ordered and delivered within 30 minutes. No more waiting three hours of a smoothie that arrives on a smelly tray.

Chef Walter and the head of nutrition will set aside an hour each week to meet with the patients and families on the Hem/Onc floor to try come up with other ideas about what will work for everyone.

Finally Children's Hospital will be hosting the first Hospital Chef Cook-off on December 1, 2011. Chefs from all over the region will be invited.

P.S. Effective immediately, the pastry chef shall be preparing a birthday cake for each child spending their birthday in the hospital. (sorry no candles)




________________________________
From: "Bronowitz, Walter N." <walter.bronowitz@seattlechildrens.org>
To: "'quilting_goddess@yahoo.com'"
Cc: "Prado, Patty" <patricia.prado@seattlechildrens.org>
Sent: Friday, November 4, 2011 10:37 AM
Subject: Responding to your concerns



Dear Ms. Lanham

I’m writing to respond to the concerns you’ve shared about the food service at Seattle Children’s. I am sorry you were disappointed in the initial response you received. When I first learned there was patient unhappy with the food they were receiving, I thought it would be most appropriate for you or your daughter to speak directly with the Dietician who is familiar with all the options appropriate for SCCA patients.

In the six years that I have been Executive Chef, we’ve offered a rotation of thirty soups, twenty two salads and bars. We continue to refine and change some of these, but not those that remain popular. As a rule, we don’t change menus or menu items that are still selling well.

What has not changed in the time you mention is the “look” of the café and serving areas. I am painfully aware of this and the much-needed changes have been limited by other construction and renovation priorities. Our hope is now that construction has started on new buildings the needed changes will arrive although not as soon as we would all like.

It may be helpful for you to know that we buy from five different local bakeries and product is delivered everyday. Much of the product we get to make salads come from bags, due to lack of food preparation space this kitchen affords us. The biggest influence on our fruit is seasonality and we are hoping to get to a point where we can be flexible enough to be able to consider seasonality more.

The amount of food that goes to waste on the Hem/Onc area is excessive, and some of that can be from the “what is served” category, but much of it is also from the constantly changing sensitivity of the patients to everything, especially smells.
We are working on a new delivery systems that will greatly cut down on wait time, however, smoothies are not made with ice cream, so they will always be “melted”.

I trust you know that any patient that wants an alternative to a “regular” meal can request alternatives either from our Food Service staff or from Dieticians or Diet Techs depending on their diet requirements/restrictions. Not having the correct food show up is not acceptable. Simple requests being “bungled” are not acceptable. I hope someone was told when this happened and I would encourage you to do so in the future.

I hope you understand that our hearts and best interest is in providing the best experience to patients & families. Obviously in your case we fell short, but we need to hear from those whose needs we didn’t meet so we know where improvement is needed. I hope we can make it up to you in your next visit. I’m sorry you had to take time from an already stressful life to share your feedback, but please know it is appreciated.

Thank you,

Walter N. Bronowitz CCC, CCE, AAC
Executive Chef / Dietary Manager
Seattle Children's Hospital
206 987-6057 OFFICE (Numerals: Arial 8; OFFICE/FAX/CELL/PAGER: Arial 6 – Color R117, G119, B123)
206 987-2035 FAX
walter.bronowitz@seattlechildrens.org
OFFICE 4800 Sand Point Way NE, Seattle, WA 98105
MAIL M/S B-5595, PO Box 5371, Seattle, WA 98145
WWW seattlechildrens.org

The R Words

R: Remission
R: Relapse
R: Recurrence
R: interventional Radiology
R: Rejection


Not liking many of the R words now.  We are way too familiar with all of them.

These have been dark, bad days but she is more than half-way through the Chemo.  Methotrexate is done, Ara-C has been hung.  It finishes after 72 hours.  If her body gets rid of the Methotexate we can go home.  We wait and see and RELIE on good RENAL function.

10 Hours in.... More to go

so we sit.  More accurately I sit, she sleeps.  She has a huge  IV pole with two arms, 4 pumps and two miles of tubing.  Fluid and Methotrexate is going in one side of the Hepzibah and fluids  and anti nausea meds going in the other.  Two lines running.  Sort of impressive.

So on today's menu we have Vincristine, Methotrexate and Deximethazone.  Tomorrow is IT Methotrexate (in the spine), 24 hours of Methotrexate and then Deximethazone.  That is as far as I can stand to look.  There are some other chemo coming because after you put the Methotrexate in, you have to wait until it is out of your system.  Something about renal and liver failure.

Lest you were wondering, you are missing the Asian Appetizer bar....yum. 

Back Again..... But Progress has been recognized.

So we are headed back. 
Monday:  .07 bad cells found.
Tuesday Clinic: ANC 736
Wednesday : Admission for high dose Methotrexate over 36 hours: Ara-C and assorted other goodies

6 days.... 6 nights and then we see.

Lots of "Then we Wait."

So No Remission for Us.....

While this is such a different stint in Cancer World, this no remission thing is way to familiar in a scary way.


Round one:  Remission expected in the first week.No Remission for Us.


Round two:  80% are in Remission by end of the Re-Induction.  No Remission for us.


We do have an appointment today and will be receiving a calendar of the next plan.  The next treatment will be in the hospital and then we will get out of the hospital once she stabilizes and then we wait for her counts to return and then.......


The good news.  Because she wont be having a bone marrow transplant before Christmas, We can have a real Christmas Tree.

Yeah for small gifts.