When Leukemia Comes Back, They Don't Give Refunds!!!!!!!

Day + 8 and the answer to "so do you just sit all day"

2012-02-02T08:01:00.000-08:00

Answer: Oh I wish...

I am sitting right now. This is the first time I have not been busy since 8:00 a.m yesterday. So I have tried to figure what I do all day but the big thing is working on keeping it quiet here. That means, beeping management.

Meb receives no less than 19 scheduled medications. Most are IV to manage possible side affects of the transplant. Most are given more than once a day.

Oral Medication
Vitamin D#
Progesterone
Multi vitamin, no Iron
Eursodile
Thyroid

IV:

Mycophenolate mofetil: ever 8 2hrs
Ceftazidime: every 8   15min
Zofran: every 8 15min
Pantopraxole: AM 15 min
Acyclovir Every 8 20min
Filgrastim: AM 20 minutes
Ativan: 6 times daily 15 minutes
Magnesium: Every 8 15 minutes
Cyclosporine: 2 times a day, 3 hours.
Fluconazole: evening 20 minutes.

Then there are the other meds. Scope patches, benedryl, hydrocortozone, tylenol, Phenergren,and a few I don't recall that aren't on the list.   Then, add the blood products. Last night after 8:00 she had platelets and two units of blood That took about 6 hours.

The nurses do a great job. They are so quiet and they will stand in a room by the pole and wait for it to beep. But they are often with their other patient and getting more stuff ready to put on the pump so there can be more beeping. It is nuts.

It sort of goes like this. Two or three meds that can go at the same time are started. The pump beeps, you "silence" the pump and then call the nurse. Now, as you can imagine, I know how to really turn them off but that is frowned upon. To get this in, we do this all day long and sometimes into the night and it changes every day.

No one is complaining. The nurses do a great job. Each medicine is given for a very good reason. Side affect management, comfort, prevention of a nasty infection. It is all very well managed and necessary.

It is just darn distracting.   There are few times I have many moments strung together for writing, calling, answering e-mails, or reading more than a couple of pages. Some one brought me some short stories. I think that was a good idea.

I of course I have lots and lots of things I think I can do. Surprise I cannot: I realize that I have to focus on simple things like stringing cranes and folding more. Mailing the thank-you notes and writing more.  I have to find things to do that are short and can be accomplished in less than 15 minutes, or less.

I want you to know that I think about all the things I should do and really intend to answer the messages and respond to the requests but I might loose tract of what it was I was trying to do.

All my efforts and the doctors efforts and Mary-Elizabeth's efforts are on making Elie May and Pearl Ann feel welcomed and helping them move in. I can't do much more than that right now.

Words with Friends takes too much effort but I have a great Dream Zoo and very happy Animals.

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

2012-01-31T11:44:00.000-08:00

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

2012-01-30T17:48:00.000-08:00

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...

2012-01-29T07:46:00.000-08:00

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.

2012-01-27T09:05:00.000-08:00

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!

2012-01-26T12:08:00.000-08:00

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.

2012-01-25T16:47:00.000-08:00

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

2012-01-24T07:41:00.000-08:00

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?????

2012-01-23T20:42:00.000-08:00

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

2012-01-22T08:06:00.000-08:00

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

2012-01-21T12:21:00.000-08:00

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.

2012-01-20T11:35:00.000-08:00

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????

2012-01-19T10:55:00.000-08:00

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

2012-01-18T04:10:00.000-08:00

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

2012-01-17T06:22:00.000-08:00

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.

2012-01-16T10:30:00.000-08:00

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............

2012-01-15T10:19:00.000-08:00

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......

2012-01-15T09:20:00.000-08:00

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....

2012-01-14T06:24:00.000-08:00

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......

2012-01-13T10:17:00.000-08:00

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

2012-01-12T12:15:00.000-08:00

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.

2012-01-12T07:15:00.000-08:00

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.

2012-01-11T06:22:00.000-08:00

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

2012-01-10T16:59:00.000-08:00

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,

2012-01-09T07:20:00.000-08:00

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.

2012-01-08T12:13:00.000-08:00

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.

2012-01-08T11:40:00.000-08:00

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

2012-01-07T07:36:00.000-08:00

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

2012-01-06T07:47:00.000-08:00

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

2012-01-05T06:58:00.000-08:00

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

2012-01-04T16:11:00.001-08:00

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.

2012-01-04T06:33:00.000-08:00

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,

2012-01-03T07:05:00.000-08:00

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

2012-01-02T07:12:00.000-08:00

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.

2012-01-01T05:04:00.000-08:00

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.

Upcoming Dates

2011-12-31T07:38:00.000-08:00

subject to change for the slightest reason:

January 3 LP
January 13 LP and Bone Marrow Aspiration
January 16 Admission for "conditioning" IE High Dose Chemo and Total Body Radiation
January 24 two mismatched, unrelated units of Cord Blood given
February 24, hopefully a new bunch of working bone marrow.

Until then.......... More appointments and things to do then anyone ever needed to know about.

Transplant 101

2011-12-29T06:05:00.000-08:00

#1 Ablate all the bone marrow. Do with with Cytoxin and some sort of F drug.

#2 8 doses of Total body Radiation over 4 days. Travel to University of Washington Hospital

#3 Receive two unmatched, unrelated units of Cord Blood. Both have 4 of 6 HLA markers but they are mismatched on different markers.

Wait, receive many many transfusions, receive antibiotics, develop mouth sores, use a morphine pump to manage the pain, receive liquid nutrition.

Wait, wait and see which unit wins the battle to be your bone marrow. Wait and see how many cells realize they have been re-homed and don't want to stay so they start to attack the new strange body. Wait and see if they learn to be happy in their new home (Graft vs. Host Disease). See if they learn to be helpful and start to play nice and help the new host to be healthy.

Transplant by the numbers:

10% of cord blood refuses to work at all
60 to 70 double cord blood transplants have been done at the Hutch over the last 7 years.
75% of Hosts are attacked by their Graft
30 days from Transplant to En-Graftment
0 % chance to survive without transplant
40% chance to survive with it.

Since she always seems to have the rare side effects, I am going to grasp on to the fact that survival is rare.

Note to self: in the next life remember to have a dozen children. Save all their cord blood. Take more naps.

So Hospital Food quality is not just a Children's Hospital Issue.

2011-12-28T07:31:00.000-08:00

http://news.bbc.co.uk/today/hi/listen_again/newsid_9668000/9668774.stm
On December 22nd I met with some more folks at Children's hospital. I don't really think there is a real understanding of the concept of Food as Medicine. They are clearly confused about the purpose of food and how important it is to make sure people are fed.

An entire part of the LiveStrong web site is devoted to food and nutrition. http://www.livestrong.com/diet-and-nutrition/

I asked what was allocated for the children's food budget and was told they spend what they need. When asked if the cafeteria food was subsidized, I was told no and then yes. When asked why there was not any protein on the salad bar, I was told "People would eat it".

When asked what was being changed, I was told that in 2015 it would be wonderful. When I asked what would happen by mid January, they were less optimistic but there was some talk about doing a "Pilot Study" with the young adults.

This is not brain surgery or even LP's done in IR. This is food. This takes ingredients, preferably fresh and changing it's form via the adding of heat and taking it to people to put in their bodies. This is fresh greens, and veggies, and fruit and fish...........   Simple, clean direct from the kitchen to the consumer.

There has been no focus on making things better now other than there will be a new computer system by each bed and the kids will know the calorie count of what they are eating. The food will be the same. The bread will be the bad cheap frans stuff, lettuce will be Iceberg, the food cold and smelly when delivered. The food will take up to 40 minutes to get to the floor.

I did visit the kitchen. At 1:30 there was no cooking happening. The kitchen is horribly small. I was sort of shocked to see how small but there was a soup kettle but it is not used for that purpose. There was not stock pot soup on hand. There was Amy's lentil soup and some Stagg Chili. Since most, if not all the soup is really watery, I think they take a few cans of Amy's and water it down.  Most of the soups are very thin and unsubstantial. If you want Navy bean soup, you have to work really hard to get any beans.

Okay, I get that the kitchen is small. Okay, so order GOOD stuff. If you are not going to even try and cook, small batches of nutritional food, try to dump better stuff from the bags.
Roast some veggies, steam some of the veggies. Make some soup in the kettle that has stuff in it. Buy better lettuce, put some pre-cut ham and chicken on the salad bar.

Put the calorie count on your most popular Asian Appetizer bar. See how popular it would be.

Okay, lets see if people follow through. Lets see if they change when they take the food to the floor. Lets see if the food is delivered in a way that keeps it hot and appetizing. Lets see if there are whole wheat items offered, lets see if there are the small changes.

I don't understand how hard it is to back a few cookies and serve them. I don't buy the argument that if you bake cookies people are going to complain that you are a cookie pusher. You are a hot dog pusher and are proud of it.

I think for a period of 7 days, executives and the managers of the food service and the hospital should have to be served on the trays three times a day and not be allowed to bring anything from home or go out to lunch.

I think they should also have to take dinner home from the cafeteria for their families. I think the Chef should have to meet with his clients, our children.

Bon Appetite prepares great stuff at the Hutch. Lunch was cheaper than at Children's and appitizing. Go figure.

Day one at the Hutch part of SCCA

2011-12-28T06:13:00.000-08:00

So, Parking is good. As Mary-Elizabeth directed: You turn in before the circlely turning thing. (Note to self: do not take child when navigation is a required skill)

The signs are good. Purelle is weird but once I realized what it was and the amount to use it was fine. I don't see lots of people using it, but then I have become a nut about it. Masks are very popular. I was ready to start wearing one from peer pressure.

The elevators..... oh dear. Today I am going to look for stair wells. They are slow and small and very crowded. This is not a stair taking group.

The staff, seems fine. Not a lot of them and lots of yelling. Sierra, room 2. Smith room 26. Whitehall room 32. Sort of like getting your pizza order. A bit wierd but the view from the exam room is fabulous.

It is very apprent that no one goes there alone. It is a group activity for the adults. As I was thinking about it this A.M. I wonder if this is the Christmas visitor time. Lots of people are from out of town and everyone has come to see them. It would be rude to go to the Space Needle if Mom is at the Hutch.

Smell: Oh dear. It might be a smoke free building but people with cancer and their families are smokers. It is bad. People that smoke have no idea how bad they smell. I was told I could not spray the smelly people with some sort of air fresherner or maybe fabrize.

The halls seem small. Really small. Like you cann't get away from people and are always running into them. Maybe because I have a million bags with me, ummmmm. I will work on it.

I don't like adult cancer patients. They are so different than kids. Kids don't endlessly discuss their cancer. Mary-Elizabeth said it best. Kids do cancer with grace.

The food was good. Small but great soups, good choices. There is a recognition at the Hutch that food is medicine and that while stressed, it is better not too fall back on high fat, salty, foods. Hey, what a concept.

We really miss Childrens, bad food and all. We will be there on ocassion and life will be good again. We have appointments there every day for the next 2 weeks.

Admission on the 16th of January. I will know more today after we meet with Dr. Woflfery. I have a bunch of quesitons, of course.

Waves of panic overtake me every now and then. I just hate this. Oh, did I say I don't want to be here and do this. What was I thinking, I loved fighting over peoples marble topped dressers.

tomorrow

2011-12-26T17:12:00.001-08:00

WE learn about Transplant...... 12-27-11.

Day one of _______________.

Christmas was a great Distraction. Let the worrying begin.

2011-12-26T07:41:00.000-08:00

So. Tomorrow. We will be spending most of tomorrow at the SCCA building down by Lake Union. There will be checking in, examinations, tests, meeting, signing of papers and pledging of big money to cover extras and there will be the "THESE ARE THE POSSIBLE SIDE-EFFECTS" the old full disclosure thing. I think I need to schedule some drinking when we are done.

We will be much more informed and more afraid, and more scared and more terrified. But there is no other choice. None. While the risks are huge, the non-treatment is option has a certain outcome. I can only imagine if she relapses a third time.

Maybe the reason I love terriers is that they never give up. They are the reason we have the word "dogged" . It has meaning and a valid reason behind it.

Lily knew there was food on the table and it took her all day but she found it.

We know there is health out there and we are going to find it and embrace it.

Now I must do a few more loads of dishes.

2011 Christmas Letter......

2011-12-24T08:29:00.000-08:00

ONCE UPON A TIME there was a princess named Mary-Elizabeth. She lived in the wonderful kingdom of Seattle Washington and was loving her life. She had a fabulous family, especially her mom, great friends, wonderful animals and loved her very very pink room.

When she was 12, an evil dragon name Sir Luekemia came to the kingdom and did battle with Mary-Elizabeth. All the forces of good came together to fight the dragon. It was a long long battle but Sir Luekemia was smitten and sent away.

The princess went on to go to finish her education at St. Joes Palace, the Holy Names Castle and was well ensconced with others of her own kind in the Kingdom of the Zags.

She met many wonderful other Princes and Princesss that spent time with her in the Zag's Cathedral where they watched the many warriors battle other tall lanky sorts from other Kingdoms take the small brown ball and joust for the right to push it in tall basket. She studied with great wizards and other smart elders and loved to make numbers do tricks and to learn to built new castles and light them with magical candles.

She made the long journey from Seattle to Zagdum and was well established in her life with others of her own kind for a second year. Princes Meb and Princess Kelly and Princess Noel were in their cozy chambers and had become known for their hospitality and ribs. School was hard but she is smart and she was studying and enjoying her time learning. But alas something changed. She began to be weary and weird colored marks began to appear in places that were of concern. She consulted the local witch doctor and was told to return to her bed chamber and sleep. Her tiredness continued and she began to feel worried and fretted about what was happening.

She finally dispatched the messengers and Magician Karen W called the witch doctor. Blood was let. To every one's dismay and surprise, Sir Liukemia's and his older much nastier brother Sir ReLiukemia had arrived with a vengeance. The Princess cried and the Queen cried and King pretended not to cry (but we know better), many many of the Knights and Dukes and Duchesses were shocked and aghast. Many words of despair were repeated. There was much wailing and teeth gnashing and threats and pleas made to the great Gods in the sky. It was a dark and gloomy time.

Of Course Princess Meb did not give up. The great healers and spiritual guides and magical tall warriors and Wizards and wise givers of knowledge gathered again to fight the Dragons. Many many new weapons were gathered for the battle. Blue Thunder full of thunder bolts, and many other elixirs of great power were concocted in the dungeons. The spells were quickly cast to vanquish the evil and treacherous Dragons.

The long beautiful hair of the Princess fell out. She called the kingdom’s hair dresser Sir Jerry to clear the hair from the royal head., She decided it was so worth losing her hair, feeling ill and tired in order vanquish the Dragons and their ilk. She became tired and weak and but knew it was a battle to the death and she was not going to be beaten by Sir Relukemia. She would triumph.

After the first battle and second campaign, the magical healers will start to do the mystical spells to forever remove the place the evil dragons live. New and much improved spells will be spun and replace what that lies deep in her bones. The Dragons will never ever ever be able to come back and steal the strength and health of the great Princess again.

The princess will be trapped in her Seattle Tower for at least a year. She and her Queen Sally will be spending much time with the Magicians and Healers at the healing castle. There will be many months of confinement but all know she will win this most difficult of battles.

She will regain her hair. She will be better and stronger. She will be ready to return to the Kingdom of Zags and continue her wonderful life in about 12- 18 moons. The many Princes and Princesses, the great Wizards and elders and keepers of the Gods will welcome her back with open arms. They will honor her and be inspired by her bravery and her fighting spirit.

She Is Not Going To Let The Dragons Win!!

The various messengers will report on the journey was she travels back to wellness.

Princess Meb can be reached at MEB12@msn.com, or 206-915-5875.

Her tale is being reported Mary-elizabethsbump.blogspot.com

Her fearless Queen/Goddess Sally is hiding at Quilting_Goddess@yahoo.com and 206 605 9224

Prayers, joining the Bone Marrow Registry, giving blood, donating cord blood and platelets is helpful. The Goddess Sally thinks it is alright to do just a bit of swearing at the Universe for allowing such a wonderful person to be inflicted twice in 7 years with this affliction.

Christmas is about Death or It is better to be at the top of the Food Chain.

2011-12-23T20:13:00.000-08:00

So. Crab Bisque. It is sort of a new favorite. We have always done the Christmas Eve in a big way. Big Beef, Big Crown Roast, big Lamb and one year I decided Crab bisque was the thing to make. Don't ask me why, it just seemed right.

Secretly I love when we have some sort of soup so we can properly adore the Soup Tureen. It is a great soup tureen. Not your ordinary one., It is worthy of it's own blog post.

But back to death to creatures in honor of Christmas Eve.

So Crab Bisque. It requires crabs, lots of crabs. They must be cooked, cracked, shelled, then there is much to do with chopping and boiling and then there is straining, and so forth and so on. After a couple of hours of intense work and cooking a small amount of stock is produced. It is pretty unremarkable but it is there.

It is then reheated, cream and bread crumbs are added and cooked some more. Finally crab is added and it is served. It is heaven in a bowl and worth all the work, all the running round town for the right crabs. They must not be cooked a few days before or even the day before. They must be cooked that day. If they are not located, then Murder is required.

Today there was death and mayhem. I even felt bad about it. I don't usually feel bad about dumping spider like creatures into hot boiling water but today I did.

I should not have named them, taken their pictures and then talked with them. I should have taken them out to Golden Gardens and set them free. I could then have gone and purchased two cans of soup, cream of asparagus and cream of mushroom. Added some sherry, half and half and then some canned crab.

Lets put it this way. It is good to be a the top of the food chain.

The Christmas Sneeze and other reasons to Panic

2011-12-22T08:12:00.000-08:00

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....

2011-12-18T21:44:00.000-08:00

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

2011-12-13T17:10:00.000-08:00

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....

2011-12-10T21:25:00.000-08:00

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?

2011-12-09T19:25:00.000-08:00

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

2011-12-06T19:03:00.000-08:00

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

2011-12-03T12:01:00.000-08:00

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

2011-12-01T10:45:00.000-08:00

$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

2011-11-30T16:17:00.000-08:00

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

2011-11-27T07:26:00.000-08:00

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

2011-11-24T06:52:00.000-08:00

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.

2011-11-22T18:30:00.000-08:00

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

2011-11-21T08:36:00.000-08:00

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

2011-11-19T22:04:00.000-08:00

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.

2011-11-16T22:48:00.000-08:00

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.

2011-11-13T15:24:00.000-08:00

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.

2011-11-12T07:20:00.000-08:00

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

2011-11-11T09:01:00.000-08:00

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

2011-11-10T08:03:00.000-08:00

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.

2011-11-10T06:31:00.000-08:00

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

2011-11-08T19:41:00.000-08:00

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.

2011-11-07T19:09:00.000-08:00

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

2011-11-06T13:13:00.000-08:00

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.

2011-11-05T10:16:00.000-07:00

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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

2011-11-04T18:31:00.000-07:00

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

2011-11-02T19:15:00.000-07:00

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.

2011-11-01T20:48:00.000-07:00

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.....

2011-11-01T07:50:00.000-07:00

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.

So Now What

2011-10-31T18:25:00.000-07:00

Lots of people seem to think we are done. Cancer is done, we can get back to normal.

So sad to say, we have not even started. We are praying and hoping and demanding and asking and pleading that she is now in remission. We just heard she is not in remission. She has to be less than .05 and she is less than .07. Oh so close but not close enough.

Had she been in remission they would have tried to keep her in remission until they find a doner, and they kill all her bone marrow with high dose chemo and total body radiation. Then she gets a transplant and we hold our breath for 100 days.

Since she is not in remission there will be more chemo and more inpatient time. We will know more tomorrow.

More tomorrows are coming. Just enjoying the time at home.

Big Battles and little victories

2011-10-30T16:28:00.000-07:00

Cancer World is a place of wars. We battle infection, bad cells, nausea, headaches, hives, memory loss, aches, mouth sores, diarrhea, weight loss, high blood sugar, low blood sugar, sleeplessness, exhaustion, fevers, fungus and a million other things. But most of all we fight to keep hopeful.

Cancer World reshapes your view of the world. Everything you believe to be true comes into question. Life's fairness, the justice in the universe, the existence of god, karma, and your organizational skills.

It is all so so much.

Today marks the 32nd day we have been back in Cancer World in full on battle. She has had 15 doses of chemo therapy, lost her hair, lost 15 pounds, had four trips to the OR/Procedure room and still carries on with great promise and hope.

Today there was a victory. The accumulation of 338 Neutriphils enable us to De-camp and come home. We did not even unpack but rather just both went to bed in our own beds. We fell asleep for a couple of hours. No rushing, no waiting, no worry about counts or what the next meal will be. Just sleep. A small victory for today ad all we needed to do to keep doing what needs to be done.

There are no Answers Only Arguments

2011-10-29T08:14:00.000-07:00

In law school we had a professor named Neil. He was a great scattered teacher that could be headed in an alternate direction with a simple question. He taught Civil Procedure. We were discussing a very complicated yet flexible rule. One of the CPA guys stood up in class and yelled: JUST TELL US THE ANSWER

Neil turned around and said: Mr. Frustrated CPA Lawyer wannabe, there are no answers only arguments.

So here I sit in Starbucks at Children's Hospital 30 days after the news was broken to us. She has 190 neutraphils and I think that is close enough to 201.

Wanna make bets about whether or not we can get out of here today???

In Boston they did a Hospital Chef Cook-Off. I wonder how Chef Walter would do.

2011-10-28T18:03:00.000-07:00

I am starting
to get some ideas..........

http://www.boston.com/jobs/news/jobdoc/2011/10/hospital_chefs_sick_of_institu.html?comments=all

Did you know today was the 28th? and we have been in the Hospital since the 9th of October!!!!!!

2011-10-28T08:04:00.000-07:00

I am loosing time and space here. Seems to be dragging but I guess that is to be expected. I am just totally discomberated. I don't know where stuff is, I can't focus, I am even having the urge to do laundry. The world is just alllllll our of sorts.

I feel like I am inside a glass jar and can't find the way out. I am functioning inside my the jar and trying to communicate but then find it is not being successful.

This is such a different journey than last time and I knew it would be but the reality of DIFFERENT is beginning to sink in. I have to just forget everything I think I know and go with what is happening. I have to figure out a way to focus on what needs to be done and get it done.

I am not able to focus on even little things. Stuff is scattered between here and the hospital. Like right now, where is my Kindle and my Ipod Nano. I think they ran away with my blue ink cartridges. What's with that?

So I I will take a few deep breaths and see what the day brings.

Searching of "FOOD" at Seattle Children's Hospital

2011-10-27T14:33:00.000-07:00

So we have been here 17 days. I have been kvetching about the food served here and to Mary-Elizabeth. In all fairness her breakfast has been okay for most part. She is most concerned that the English Muffin not be frozen and really prefers her toasted cheese toasted on both sides.

I spent a little bit of time reading the cafeteria menus for this week.

Breakfast:
Pancakes
Cheese Blintz
Biscuits and Gravy
Breakfast burrito
Biscuits and Gravy
French Toast
and yes
Biscuits and Gravy

Did I mention that 3 out of 7 breakfasts were biscuits and gravy?

Hot Bar

Hot Dog Bar 3/14th of the meals
Appetizer Bar 2/14ths
Taco/Nacho Bar 2/14ths
Asian Appetizer Bar 1/14
Fajita Bar 2/14th
Baked Potato Bar 2/14th
Pasta Bar 2/14th

It appears to me that if it can't be dumped out of a bag and deep fried we don't get to have it as an option. Thousand's of people come here each week. What would happen if there were fresh greens, fresh fruit that was not limited to Red Delicious and Granny Smith Apples and if the broccoli was steamed instead of just put in cheese sauce and served as soup.

I think for the price of all of this, it could be better. I am hoping for better. On day 17, it is pretty sad.

Dancing Doctors and bribes bring results.

2011-10-27T11:38:00.000-07:00

So this a place of serious medicine. A child is not at Children's for the normal "stuff" There are 50+ specialties here but none of them are for things you want your child to ever experience. That being said, this is a Children's Hospital of the first Rank.

Giraffe, Whale, Balloon, Airplane, Train, etc. Lots of art, clowns, mac and cheese. All good stuff for kids. Mirth... a good word. There are a million volunteers that work here to make this a wonderful place. I was almost assaulted by the Pumpkin Lady. They were handing out lots of small cute and wonderfully painted pumpkins to any one that had a child whose day would be made with a small gesture of kindness.

She almost cried when I told her I could not take them because while everyone saw a cute holiday decoration, I saw a fungus carrying menace.

So, in such a place, you can get Doctors who don't know what brings up ANC to do lots of things. One of them is Dance. It is called the secret ANC dance and several have been performing for us. This is sort of like the Sasquatch of dances because only a rare few have seen it. (It was not filmed less we destroy the careers of young up and coming docs.)

Imagine, 8-12-15 years of education, a quarter of a million dollars in debt and the Chicken dance. The vision will be burned into my brain for eternity.

Because I believe we all have to do our part, I also resorted to bribes. I will do anything to return us to home and to some quiet time in our own beds.

Alternate Medicine works..... ANC 79, Monosites 109.... they are coming back.

5 am and other wierd and random thoughts.

2011-10-26T05:24:00.000-07:00

So our bathroom is being destroyed and rebuilt. I hear rumours that it will be wonderful and fabulous and oh so magical. Thanks to Heidi Behrns Benedict, the girl to call during any design emergency.

Destruction took only a day. Once the bad mold was found, it was taken out with no mercy. It ended up in the back yard and will be hauled to the dump. It is a big pile of stuff and is sort of amazing. Back yard looks like a West Virgina road side, including the toilet and sink randomly scattered along the side of the house.

We are limping along with only one bathroom and a sort of working shower upstairs. (Next Project). but we need to deal with one issue at a time.

I am not going to state the obvious here. I am not going to complain about being here 18 days. It might take me longer to settle in then other people but it seems like I might have finally quit fighting the bit.

We are here for as long as it takes. I will continue to escape when I can and do what I need to do.

So here is to the docs that came to the room and did the Chicken Dance. It was great and uplifting and I think as important as my consulting of the magic 8 ball. Go Docs....... Doctor Dan was especially wonderful.

Also does anyone know why all of the American Girl dolls have hair? I think I will send them an e-mail.

Why is it that I wake up at 5:00, after Midnight Bacon and before Starbucks opens?

Maybe I can go back to bed now.

Competitive Lukemia Relapse Protocol

2011-10-25T07:16:00.000-07:00

Competition is healthy, sometimes, maybe, always???

So maybe in Cancer World it is just a distraction a way to keep your mind off the next test, the next round of chemo, the next possible heavy blow. Cancer part one was wimpy compared to this more "Competitive" version.
First time: 26,000 white blood cells
Second time: 225,000 white blood cells.

First ANC report for M-E 18
First ANC for Allie 72

Now we want more Neutrophils and don't even know how to get them.

Darn.... We do know that Meb's bone marrow has started to work but I am thinking it is not giving the old college try. Not working out fast enough, not doing enough drills, not paying attention to the docs and the residents and only sort of paying attention to the ANC dance (Go Dr. Erin)

Yesterday when Mary-E's line would accept drugs and chemo but would not give back blood, she was willing to submit to a real blood draw to see what her number were and they dropped a bit.

A month ago, no one was thinking about ANC's and platelet counts and how much hair could come out in one brushful. No one was wondering how much someone could drink and "eliminate" in a day. No one was worried about how much blood one body could soak up in a day or a week. It was all just about the next test, the next project or the next baking adventure.

Now it is about lab tests and results, HLA typing, getting into remission, getting to transplant, getting a match, getting the next chemo without ALL of the side effects.

It is a fight and a competition against bone marrow and mechanisms that create cells and divide and do things no one understands completely.

"What make the bone marrow switch from making reds and platelets to Neutrophils" asks Sally...

"We don't know" answer the Docs.

"What make Likemia return?" asks Sally. "We don't know." answer the Docs.
"What causes Lookemia?" Asks Sally.
"We don't know?" answer the Docs.
"Will this work this time?" asks Sally.
"We don't know." answer the Docs.

"God, why did this happen again?"asks Sally.

"I am not telling." answers God.

I don't think this Competition is fair!!!

We Are Calling Security......

2011-10-24T10:31:00.000-07:00

We have lost some Neutraphils...... She lost 6 and we know that Allie stole 5 of them but we are still missing one.

Foiled Again

2011-10-24T09:47:00.000-07:00

So, we know we are getting closer to being sprung. We know the numbers are going up. We know the doses of antibiotics are counting down, we know this but now we can't prove it....

Her Hickman will not give up any blood. If there is no blood then there are no counts and if there is no way to tell the progress.

So if your Hickman does not work the nurses insist you practice your yoga poses and then you are supposed to cough. Sit up, breath deeply, moving your arms in the air, doing shipping signals. So when none of that does the job the nurses order an Xray stat.

Mary-Elizabeth stayed awake since she was told that the Xray would happen at 5 am. She heard the word, Shift change and went back to sleep.

We walked to Xray and they looked to see if the lines were still in her heart... (pausing a moment to deal with nausea). The line is fine, the TPA has been ordered. It is sort of like Draino for the Hickman. So we wait.

63 and Counting

2011-10-23T19:46:00.000-07:00

So we as Lukemia shapes our world again, we start to change how we see the world. No planning for the future, no worrying about what bulbs to order for the garden. No looking beyond tomorrow. Focusing on just this moment. This blood draw, this dose of Chemo, this ___________.

Little goal: finish the 14 days of antibiotics, ANC 200 and then home.

Big goal: Bone Marrow Transplant.
I sat down and did a bit of research on what it took to get to transplant and have discovered I should stay focused on little goals and not project too far in the future.

Johnny and Ana and the kids came for dinner tonight. Johnny brought magic enchiladas. He is sure that is the answer to the ANC issue.

We shall see.

(Do you think I should be worried when this is on my child's mattress?)

18, we have 18 182 to go.

2011-10-22T09:39:00.000-07:00

Maybe there is an end to this Blue Thunder Jail Sentence. I am going to start bringing stuff home!!!!After I clean the basement.

More than Leaves are Falling.

2011-10-22T06:24:00.000-07:00

Loving Fall. But after only three days, I came home and most of the leaves from this tree are on the ground.Sort of amazing how fast they lept off the branches and experimented with gravity.

MEB's hair is going just as fast. Last time, we had months of shedding, some bathroom drains with some hair. This time it is movie falling out. She brushes her hair and the brush is full. It is full, it is so full and the waste basket becomes full of hair. Good News she has the ability to grow lots of hair. Bad News, she will have no hair by the end of the week-end.

Nothing, and I mean nothing, did I mention nothing about this process is pretty or familiar. Nothing is the same, nothing from CP1 (Cancer Part 1), is helping us cope. If anything,it is making it worse because we feel like veterans and find that we are not even on the same planet. We know cancer, we know how to fight cancer this is not cancer, this is some other creature that has invaded our lives.

So how do we deal: Anger, frustration, humor, bacon, some quiet time at home to regroup.... like before we deal and try to remind ourselves that each day, every moment is something we have now.

Gravity is still with us, rain is still with us, leaves grow back and hair grows back. The leaves will be raked, the head will be shaved and then we will wait, we will wait and see.

Heartburn is not for sissys

2011-10-21T14:05:00.000-07:00

so long long night for Mary-Elizabeth. She has to have two 5 day "pulses" of Dexemethoson. It is a steroid that even in small doses creates havoc. In this dose, it is considered a Chemo Therapy.

We have a healthy respect for Steroids since they can put kids into remission: Stop the bone marrow from working. It also stops and starts other things.

Starts a private engine running in your brain. Sort of a personal tornado that comes and goes. It keeps you up, makes you want to clean things, it is anxiety of great great power. I used to look forward to the frantic cleaning that happened. No real sleep happens. More like dosing. No ability to concentrate and that is just for a few days following the "pulse".

It also causes heart burn. Bad heart burn. She did everything she could to keep the heartburn away last night. Illegal tums were eaten, Ben and Jerry's consumed and then she did not say anything more until this AM.

Of course we addressed the issues. When the nurse said we could discuss it with our doctors when they did rounds, I suggested that would not be soon enough. She was given the secret hospital tums and some breakfast and felt a bit better. She was told that she was going to ask next time.

She still has "no data" and as Tracy said, that is a good thing. Bad Bone Marrow needs a long time out. Fred has suggested that we ask the residents to do the ANC dance. We are working on that one.

So the house needed some attention.

2011-10-20T10:09:00.000-07:00

Well, here we sit. No white blood cells,none appear to be coming any time soon. The reds and platelets are dying like Republicans in the Primary and we sit and wait. No magic cures or tricks.

While we have been sitting, there is a project going on at the house. It is sort of my fault because I should just let sleeping rotting wood continue to sleep. In my inevitable manner, I wanted to address the issue. I wanted to get the sort of moldy stuff out of the basement. The bathroom just felt damp to me. It would not ever dry out. (My grandfather was a water whitcher)

So I called the guys and they pulled out a bit of tile and then..... I will post some pictures when I am in possession of them.

Down Stairs Bathroom will be beautiful says Heidi Behrns Benedict. This from woman than told me to keep an open mind and proceeded to put my underwear drawer in my living room. More on Heidi later. She is one of my great angels.

Just what I needed, a bathroom remodel in the middle of the remodel of Mary-Elizabeth's bone marrow remodel.

Lesson learned: Just because your child is fighting the battle of her life, make sure you pay enough attention to all the members of your life, you house being one of them.

Hospital Food

2011-10-19T16:52:00.000-07:00

So I love food. We all know how much I love food. I even let myself eat stuff that no one eats anymore. I have been known to eat Kraft Mac and Cheese, I have added a hot dog to that on occasion. I will have a Dick's Special and fries. I love ice cream and red meat, and lots of other goodies.

I am not a fan of Seattle Children's hospital food after the first couple of days. Coming to the hospital is sort of like going camping. You lessen your standards and just know that a serving of fried spam will not kill you and is sort of a treat. So some bacon, (best thing they make) a toasted cheese sandwich. A trip through the salad bar full of Macaroni Salad and pickled beets won't create too much havoc. It is do-able on day one but by day 12, it is darn near impossible to swallow.

There are things that are good, tasty and even appetizing. I think there is some basic food here somewhere but I don't find it very often. Over cooked, over sauced, processed, dumped from a can, Michale Palin would have a hay day with this place.

Fruit, treated and dumped from a bag. Salad, a bit dry around the edgedsm from a box. Meat balls, I don't even want to think about it. and that is all from the cafeteria. Don't get me started on what comes to the room.

Nothing has been eaten off MEB's tray since she arrived. I imagine 90% of the food that arrives on this floor has been thrown away. Presentation. Put all the food together, open the tray and AWWWWWGGG.

Did you know that there is someone here that believes corn and canned ravioli are a good idea? If French Toast is kept in the same place as the bacon it even falls apart.

I know it can be better. I know because I have been to other hospitals. Best lentil soup, U of W. Best Salmon, Swedish, Best meat loaf, Sacred Heart.

I need a project, this is going to be mine. I would buy food in the cafeteria if I could find some. I know I am not in a time warp and it is out there, really close. Fresh greens, green beans, real mashed potatoes, cheddar cheese........

We are going to be here for months. I can't have leave every day to find food and bring something for Mary-Elizabeth to eat. We have a tiny tiny space in the fridge so bringing food in all the time is a bit problematic. This is going to be a learning process. I am going to learn.

Packaging and Managed Expectations

2011-10-19T08:04:00.000-07:00

So it is all about packaging. Nothing is simple. MEB had to have a patch to deliver some medication. It took three days to arrive because it was not in their pharmacy. It arrived to day and is the size of the tip of her finger. It arrived in a package the size of a thank-you card envelope. You know the size.

Everything in Cancer World comes packaged. Even the packages are packaged. A bag of IV fluids are sealed and then they are in a sealed package. Anything that comes into the room has to stay in the room lest the package is contaminated and then can not be repackaged. Lots of landfill is created. No waste management here.

The news comes packaged as well. There is the big package:

Your child has relapsed.

Buried inside of that package is the : Your child must go into remission and these things make this happen.

If you child does not go into remission, then you must open this package and it has other things inside.

If you make it transplant here is your very special special box of goodies. Best not look there until it is time because you really don't want to look now it might make you close package number one.

Hair Loss is in all the packages.

2011-10-18T06:33:00.000-07:00

Heavy sigh....

I do this a lot. A way to get rid of the bad air and let in the good. I tend to not breath and find that it helps a bit to re-oxygenated my blood. I am a very good crisis manager and am good on my feet. At the end of the day when I have a moment to process and think about how the day went and what I could do differently to prevent the event, I do.

Mary-E had a couple of good days. No apparent side-affects, no need for blood or platelets, no headaches, nausea, wanted to eat steak and leave the room and go to Starbucks. She was able to unhooked from her IV because she was able to drink as more than was required. (These people are so excited by pee.) Being the optimist I was just ready to grab on to that bit of good news and project only great things happening. Maybe going home, maybe a walk in the Hem/Onc halls, maybe some real conversation and some chance to see my lovely daughter. She tends to go to a very quiet deep dark place, sort of like a turtle. When she is feeling awful, she does not complain she gets very very quiet. It is impossible to find her when she is "gone" like that. It is almost like hibernation. As a parent, it is so so hard to just let her stay. As a mom, I want to fix it.

After a couple of good days, yesterday her whole body hurt, headache, nausea, wanting to be back on IV. Using all of her strength to keep from throwing up. She went back to that deep deep dark place and was gone again. I should know by now that this happens but she is 16 days out from the Mitozanton (Blue Thunder) and I would like to think it had done its job and we can get on to mending.

Nothing is going to "fix" this easily. So a bit of sighing was necessary at the end of the day was the result.

So I am up, headed to the shower. Going to have some Tortilla Soup or Stuffed Peppers for breakfast and then head over to the hospital for the day and night. I am going to play Angry Birds and maybe do some reading.

Seattle Bone Marrow Drive

2011-10-17T12:11:00.000-07:00

http://marrow.org/Pages/DonorDriveSearch.aspx?key=081-4-01012

There is a drive at Seward Park on Saturday.

Its the Little Things that make the difference

2011-10-17T06:53:00.000-07:00

So you think it is the big things. Cars, Graduations, Birthdays, Trips to the Moon. When I was a history major, it was the big events the wars, the elections, the disasters that made the history books.

We don't pay enough attention to the little things. The stuff that matters but not in a big way. The person that offers to spend the night. The person that stops and spends five minutes listening. A dose of zofran and a few moments of being IV free. The ability to smile and find something positive in an awful situation, the ability to listen. Just to listen.

I have been trying to step out of our world of waiting and focus on the lesser events. So much is swirling around I have to grasp on to something. We have a roommate and she is having a very difficult time right now. She is so so quiet and has gone to that deep place where mom's can't find their children. In better times she is a bright and shiny thing full of life. She is my role model. She is the one that says what she thinks, asks for what she wants and needs. She is older than I am, she is six.

Last night before I came home, I had a chance to talk with her mom for a bit and when we were both back in the room, Allie got mad at something that was said. Everyone was busy trying to make her feel better but I took it as a little sign. She might be very sick right now, she might not be hungry, she might not want to go to the bathroom when people want her to go BUT she is able to be angry. She is in there somewhere and she is fighting.

So another day of managing and handling and putting a string of little things together. A smile, a good cup of coffee, a note to thank someone for their support, while we wait.

Crisis of Faith

2011-10-16T18:01:00.000-07:00

So is it a crisis of faith if you are still are mad at God? I guess if I am mad there must be some sort of belief going on....

As we settle into the issues of what is happening and not happening, I am perplexed as to what I believe right now. I guess I have not given up on God but I am so so mad. It just seems so unfair.

This is such a scary time because even those in the know don't know. Will she have more chemo for several days and then we do more waiting. Here number are still at 0 and when I ask how soon they will be climbing, I am given that very sad and condescending smile. You know the one, the one we give our children when they ask if their are fairies and Santa Clause.

Mom and I have been having Midnight coffee. It is sort of nice to wake up and have the coffee already made. Mom watches the street activity and loves to report. Last night was quiet but 15 bags of groceries and a couple of cases of beer went into the house across the street.

Waiting, I hate this waiting. I guess I need to re-bond with waiting. It is the thing of Cancer World. I guess if we are going to be here for a while, a long while, I better keep God as the focus of my anger. I better keep her around.

A burning bush or something would be nice for some insight.

Kitchen Lights at 5:00 am and other observations of a reluctant dog walker.

2011-10-15T07:54:00.000-07:00

If the puppy had too much to eat and then maybe swolled a treat whole, they need to get up at night. One time we were up it was determined a walk in my housecoat was required.

So so glad we did. The sky was clear, the moon full and Orian was up in all of his glory. The dogs were a bit confused but would never pass up a chance to walk.

Fluffy slippers, fluffy house coat, and dog walking in the deep deep dark. Out, shuffle of leaves, down the block to see what has happened in the last few hours. Quiet street, full moon, orian high in the sky. Walking and looking. Amazing how many people keep their shades open.

The houses are dark but the kitchen lights seem to be the unifying force. The kitchens are dark, but secret lights are left on. The lights that draw the occupants in for some cookies and milk, or early morning coffee when the house is still dormant. A safe place, a place where all good things happen. Where love is produced in the form of mac and cheese, stuffed peppers, chocolate chip cookies and just some cinnomon toast. The heart of the home and the place everyone gathers.

At 5:00 am it is nice to know the kitchens are waiting for the peeps to apear and be welcomed.

P.S. To the person that put a pumpkin on our poarch, thank-you. It has been noticed and will be carved at the appropriate moment.

Grandma Mary and I have been kicked off the Island.

2011-10-14T10:05:00.000-07:00

Wild and Crazy sneezing has stopped. Mom and Tracy are going to go to the hospital today. Grandma Mary was going to spend the night and I am going to gown up and go in later today.

Evidently the tribe members are limiting our time and no sleep overs for me until Monday night. Grandma Mary is also not allowed. The worry is that she will not sleep and will be distracted by Midnight bacon. The tribe as spoken. I guess it is alright. I let myself get too exhausted and now need to re-charge. I am just not sure how do to this.

Some said that they didn't know what I did to re-charge and I think I might have a hard time figuring that out. I know it starts with some sleep, mindless television and then cooking a good meal, gathering the people I care about and some water aerobics thrown in the mix.

I really really love to find weird stuff in the kitchen and see what happens when I throw it together. I don't think it is the cooking but the watching people eat that makes it all good.

I was surprised to wake up sneezing yesterday. It was like college after finals when you go home and there is a total break down and you just get sick. I am just going to go with it because this is where we are right now.

I suggested to a dear friend that I must have done something in a former life and this is way too much bad Karma for anyone. I was instantly scolded and told that this is just part of my journey and the lessons are here to learn. What makes me sad is MEB is on this journey with me.

Off to the office to deal with some things and then to the hospital to see what is going on and then home for some more rest.

Still Zero and I woke up with a cold.

2011-10-13T07:09:00.000-07:00

So we are still at 0. Zero. zip, nada, etc. There are not Neutrophils floating around in her blood. Neutrophils are a special sort of White Blood Cell and when they start to rally it is a signal to the rest of the good cells to kick back into production. She has been 0 for lots of days.

If she woke up with an ANC (Actual Neutrophil Count) of 200 she could not go home today. She has to do 14 days of the IV antibiotic she was was put on yesterday. Good news, she was taken off the broad spectrum stuff, bad news it is a 3 a day IV and pretty hard to manage from home. So Earliest out 13 days from today.

Dr. Tracy arrived yesterday and spent the night. At 3:00 am I woke up with a cold. I don't even know what to do now. It will be gloves, mask and gown for me today while I am in the hospital. I need to figure out this a bit better. I guess it was bound to catch up with me. The last thing Mary-Elizabeth needs is a virus.

Mom and Alex shows up today. There are other folks that will step in. Time to not only call in the troops and let them do something.

Things we learned on this Admission

2011-10-12T07:56:00.000-07:00

So we are living in the world of big scary bugs. Everything is about sanitizing. I thought I knew what there was to know about bug killing but here is the news.

When you use alcohol to clean something, it is not the application of the alcohol that kills, it is the DRYING of the alcohol that kills the bugs.

15 seconds of wiping and then 15 seconds of annihilating drying. Who knew?

New Words...... and the Recipe for Cinnamon Toast

2011-10-11T10:03:00.000-07:00

Viridian Streptococcus

So not sure what it is but it does not sound good. Every time she had a fever during ALL-Part 1, they drew lots of blood and then put them in these cool culture bottles and sent them off to grow things. Never grew anything

Well in the spirit of ALL-Part 2, something is growing in the little jars. Not only is it growing, it has a name. I have not looked to see whether it makes toes fall off but I don't like the fact anything is growing AT all.

She is sleeping right now. I am going to work on organizing Bone Marrow Drives and waiting for her back poke. She is going to be poked in the clinic and not in Surgery. I think that will work much better and we will be more relaxed about it. Lots of pokes have happened there.

As you know we face lots and lots of challenges. One of them is with the hospital food. As I mentioned 7 years ago, this is the place that "hospital food" came to hide lest anyone try to update. This place is so 1950's. White bread, chicken strips, Campbell's soup, iceberg lettuce. I am sure that the rational is that this is a children's hospital and of course we should have only food kids like.

The message they have not heard is that kids have much more sophisticated pallets than before. My daughter likes pizza but Paggliaci pizza. She was raised on roasted beets and whole wheat bread, fresh fruit and real corn. Something crafted from food not dumped out of a bag and called food.

So yesterday she exercised her option to call and order what she really wanted. I called and ordered Cinnamon Toast. What could be more 1950's. The answer: We don't make that. Well when I think about it of course they don't make it. It does not come from a pre-ordered bag. I sat on the phone and projected my: I am going to come through the phone and remove your life force, energy and we started to do some problem solving.

It sort of went like this: Do you have any spices in the kitchen?
Do you have any sugar in the Kitchen?
What if you just sent us some Cinnamon and some sugar packets and bread and butter?

See how easy that is?

Hope that killing our new friend Viridian Streptococcus is as easy.

BLUE THUNDER JAIL

2011-10-10T13:36:00.000-07:00

so we are here, we are here for the foreseeable future. We are stuck and no way to get out so we are not going to even try. Do not pass go, do not collect 200 dollars, we are stuck. Really really stuck!.

Okay so that is what has to happen. These folks have no sense of humor. One little fever, one little bout of dangerously low blood pressure and a racing heart beat... come on.. Oh yeah we almost were given a chance to check out ICU.

We are here. Here for a pretty long time. Hopefully not the first month but then I am going to work on adjusting my expectations and getting Toasted cheese Sandwiches from the grill for MEB.

This is a picture of the plane that brought us here. $29,000.00 and change... Two smart cars or plane ride with no movie, no treats and no drinks. Go figure.

We are back in the Hospital

2011-10-10T09:52:00.000-07:00

I choose to write in this color because we are in the Giraffe wing this time. Hem/Onc over flow.

She did the Temp Creep yesterday. 99.1, 100, 100.4, 100.4, 100.4, 100.4, 100.5, 101.5. The rules are that we don't go until 101.5. And as we all know I am a great rule follower, so we headed to the hospital about 4:00 pm. They were waiting and it took them about 2 minutes to make me panic. Her heart rate was 121 and her blood pressure was 90is over 50 ish. She was running a Marathon while sleeping.

Lots of activity, and then Tylenol.. the drug we are taught to fear. We were in her room around 6:00. That is record time in the ER it is usually a long process.

They put us in OVERFLOW. Now this used to be the locked psych ward so it might be appropriate. The area has been redone and we have a Hem/onc nurse but it is not the same. I think they did it because I was so mean to the security nurse. The room is big, the parent bed is fab, but I want back to my people. I promise to better next time.

The Hem/Onc floor is the oldest in the hospital. It is not being remodeled because of the new construction. Let us just say, all areas are not created equally. But let me tell we love shabby and familiar and competent. We love that the best.