Only As Much As you Can Stand.

Sitting at Starbucks.  Child is sleeping upstairs and the nurses are waiting for Platelets.  (don't even ask)

I stumbled into the elevator and a panicked woman was there.  She had two badges on, one that said caregiver, the other was from the ED, (ER to most).  She was dazed, confused and worried she was going the wrong direction.  I guided her to the real Starbucks on the first floor of the hospital.  I asked why she was here and her story is like so many:  Child, Brain tumor, ICU.  

I have been here long enough to  know that even in Cancer World - Brain tumor is bad..... way bad.  Sort of Really Really bad.  It is one of the cancers that if you have and if they cure it, you spend a life recovering from the treatment.

I could tell that the caffeine starved caregiver was not wanting to even think about what was happening.  Just having a child with a brain tumor in your world is hard to comprehend. 

We have been here 7 years long term, 5 months on this round of events. It is still more than we can stand.  The enormity of what happens on the SCCA floor and how complicated the process can be is mind boggling.  Things don't sink into your brain very quickly. 

We came to this process knowing the odds were not good.  The long term odds are not good. There just are not any good answers to the hard questions.  You just keep going and slowly the reality of what is happening begins to seep into the recesses of your brain, your heart and your soul.  What keeps you going is the true dedication and hard work and determination of everyone trying to fix this mess. 

It is truly a mess.  It is so horrific to think of what happens on this floor and in the clinic every day.  The amount of pain, discomfort, the suffering both real and imagined. 

We only take it in one moment or one second at a time.  We ignore the obvious to keep ourselves sane.  We are sure that words like "experimental" "last option" "found a mass" "low counts" "low platelets" "high_____".

We focus on one thing.  I focused on EllieMae making her whites.  I forgot to think about the other things that need to happen to have this transplant a sucess.  It was just important that there be counts. Counts were important because we could not tell whether or not she was "engrafting".  I have come to realized engrafting is not enough.  You have to arrive at "engrafted". (she has) A child on our cluster had early "counts" and engrafting is  happening but he has not reached "engrafted".  It is so so scary.

We all worry, fret, and wonder.  We pray and curse and fret and wonder and pray and chant and pace and rage against the injustice of it all. 

But only as much as we can stand.

Some Good Some Not So Good

Platelets are being made:  Yeah

Reds, not so much

Whites down but not a concern. 

Transplant is not a road, or a path or a super highway.  It is a tangled tree like structure where the path is very difficult to figure out.

We are climbing the tree, but not just straight up the trunk.

Day Something or Mr. Toad's Wild Ride.

GCF makes the bone marrow a happy place and new cells love to grow there.  This is good.  But sometimes, like all small children they can have too much sugar.  Bad for the kids, and the kids have to give it up.  Ellie Mae was cut off her sugar fix. 

She is not happy about that and so she is on strike and only made 1600 platelets from 4300 yesterday.  Other things are up, some are down.  It is so hard to find a happy medium a balance.  Every new issue brings a new speciality and team to evaluate it.   Cardiac, Nephrolagy,  Pain team, PT, OT, social work, psychology and the list goes on....

Good days, bad days, good mornings, bad nights, good meals, bad meals and it goes on.

It is sort of like today.  Sun is out but it is very very cold.  Good part is that spring is coming despite the set backs.

Great Mandarine Chicken Salad.... Thanks guys.

Some things are just more scary than others.

If your are a doctor's kid and were 5 years old when your dad when to medical school your mind is very hyperactive when certain things are said.

I was sure that every fever Mary-Elizabeth had when she was a child was Spinal Meningitis.  I did finally learn over the years that a fever+headache did not mean certain death if you could bend your neck forward to touch your chin to your chest. 

Mid-week Mary-Elizabeth casually mentioned her neck was hurting.  She had some swollen glands and a headache. 

Doctor Sally diagnosed: Mumps. 

Let me tell you, such words should never be spoken on this floor.  There was real panic in the voice of the doctors. 

There were long discussions on what it could be and sent her for a CT.

That was when I realized not only did she have Spinal Meningitis but Lymphoma. 

We went stat for the CT.  Scary place but one that requires little time.

The techs did not gasp or have "the look" but then I still fretted for about 24 hours when the results were returned.

No swollen lymph nodes (no lymphoma).  No Abscesses (what they were worried about.)
No more headache and never any fever so no Spinal Meningitis.

I still am sure it is mumps and here is why: She has been given multiple daily doses of Tylenol because of all the blood products and it masks fevers.  She has so few white cells she would never have a decent fever. She is on a huge doses of anti-biotics and anti-virals so she is being treated already for every possible kind of things that can be treated. She still has her swollen glands so I think she has mumps.

I think she is feeling funky because they have radiated her, poisoned her and give her a million and one drugs and don't let her sleep. 

I don't think we get to go home until the blue ball falls out of the tree.

Things Chef Walter tells other people..... Too bad it is not happening at the Seattle Children's Hospital where Mary-Elizabeth is staying....

"Better food is great, but if patients don't feel better about eating it, it's a bust," says Walter Bronowitz, executive chef at Seattle Children's Hospital. "Seeing a child who is battling nausea actually look forward to a meal and be able to eat it is a wonderful thing. The main goal for us is making our kids and their families happier." 

http://hhnmag.com/hhnmag_app/jsp/articledisplay.jsp?dcrpath=HHNMAG/Article/data/07JUL2011/0711HHN_Inbox_patientcare&domain=HHNMAG



A class at The Culinary Institute of America highlights a trend among many hospitals to improve the quality of meals, aiming to make healthy and nutritious food that tastes better and helps patients heal. Health care systems that compete for patients are taking notice of consumers' increased interest in healthy, organic and local foods. At Seattle Children's Hospital, executive chef Walter Bronowitz recently dumped white bread and pasta in favor of whole wheat and introduced an Asian noodle and veggie stir-fry. The Sun Herald (Biloxi-Gulfport, Miss.)/The Associated Press (3/10)

The world is not quite on its Axis

So theoretically things should be steadily improving.  Little steps.  The ANC is creeping up.  Over 2500 today.  Two more days of that and she can walk to Starbucks. 

She just feels lousy.  Some thing seems to be going on but not anything obvious.  No fever, no real pain, the world is just off.  Chest Xray clear, CT showed nothing.  Just not feeling like leaving the floor. 

Mary-Elizabeth Ellie Mae Sierra Lanham, did walk to X-Ray and back last night.  She ate, she drank, she laughed at The Big Bang, she read some of the Sungkyunkwan Scandal( Korean Soap Opera).

Another day, another week has slipped by, we are just going to keep on keeping on.

More Platelets, more IVIG, more....... 

I will keep folding and stringing cranes, working on my quest for real food at Seattle Children's, going for a walk, drinking some coffee, thanking everyone that has helped us out....  Lighting candles in my mind since they are frowned upon here and .............

So...... No news on the Food Front but it is beginning to appears Chef Walter could be a Chef without a new kitchen if he wanted to.

sSo last night Mary-Elizabeth EllieMae Sierra-Lanham was starving for some good BBQ.  I hopped into the car and headed over to gather the necessary sustenance. 

During my absence they gave MEEM SL  an infusion of IVIG  Immune globulin.  Within 15 minutes she began to have breathing problems.  She was alone, scared and freaked out.  Yes, the nurses were there and the docs were called but she felt very "orange".

Lesson learned, she cannot be left during transfusions....  (Three today) I should not have to trek all over town to find her food.  I am going to the administration offices today.  
Oh, interesting article Shelley found for me.

 http://online.wsj.com/article_email/SB10001424052970204642604577213390021632180-lMyQjAxMTAyMDIwMTEyNDEyWj.html?mod=wsj_share_email

Day 28.... but not really

Bone Marrow today, so we are pretending it is day 28, again.  Long week-ends and the fact she is not the only child in the hospital makes scheduling difficult.  Go figure.

She is working on whining herself off IV pain medications.  She is sleeping a lot but is getting up more and more.  She has counts high enough to go to Starbucks so we are working towards that end. 

This is a long long road.  It will take her awhile to regain her strength and her confidence and her sense of humor.  She works really hard at being upbeat but it is not every moment of every day. She is feeling very Orange.  (Raj on Big Bang decided orange was a lonely color because nothing rhymed with it.)

I have not switched "to getting out of here mode"  I know that once we leave after this admission we will be back here.  Bone Marrow kids have purple tags.  There are about 18 purple tags on the floor right now.  Kids come back for fevers and to address GVHD issues that come up.

I do better when I know what "could" happen. Let me ponder how to deal with the worst and let me rejoice in the fact those things don't happen. 

So today is day 28.... 

The Transplant Road was soothed with MetroMint Water.

There are a lots of bumps on the road to discharge and some of the simplest things need to happen to get us out of here. One is drinking and eating.

To every one's great amazement she has been doing both throughout the entire process.  They were offering her IV pain meds, nutrition and fluids about 4 days into her preparation chemo therapy and radiation. 

Her drinking started to slow down because for some good reasons water started to hurt and not taste good.  It is not an unusual sort of thing to happen because total body radiation.  Your salivary glands are affected big time and it takes awhile for them to recover.   Last time I went to the grocery and bought every kind of drink they had in stock.  She would drink her way through them with some being rejected and others would work for a day or two. 

This time when water became a problem I did the same dance.  This time I went looking for suitable drinks I knew I was looking for soothing drinks.  Ginger ale, minty tea sorts of things.  It took awhile but I loaded my cart and headed back to the hospital. We tried bottle after bottle of drinks.  About half way through the process we stumbled on MetroMint Water. 

It worked, it slid down with no problems.  She was able to swallow the water and it tasted good.  She tried them all but settled on the Peppermint, and the Citrus Mint.  Each morning the bone marrow team would come around and were amazed that she was drinking anything and able to take her pills. The mint water also helped her eat.  She could slowly chew even when she had her nasty mouth sores that keeps most from eating. The water helped and provided something that would wash down the food.   

Her day started off with one bottle, then two and now she is drinking almost three a day.  I am so happy that someone came up with this water.  Her success has been passed on to others here at Children's and also on to the adult patients. 

We love when good things happen.

http://www.metromint.com/

Day 28.... engrafted... on to steps two and three.

Bone Marrow today to confirm that Ellie Mae is alive and well and settled and working and doing her job.

28 days have passed.  Mary-Elizabeth Ellie Mae Sierra Lanham is on her way back to her life.   It is not an easy road but one she will travel with the same sort of spirit she has shown during the last few months and years.  She has become pretty weak and so today we are going to go off the floor, just because we can and hope that by week's end we are can travel as far as Starbucks.  It will be a good outing for her.  Small steps, small walks, small improvements. 

I am just dumbfounded by it all and sort of in a state of shock.  I have had a couple of nights out of the hospital and it seems so so weird to be away from here.  There is this certain type of hyper-awareness that is required to manage all that happens in a day.  No day is the same.  Every day presents a new challenge, every day there is a surprise and quite frankly, it is noisy here.  Things buzz and beep and hum and chirp and did I mention beep. It become part of the rhythm of your being.  It is so quiet at home!  who knew how quiet our lives could be. 

I am at the house so seldom, it does not seem like my place.  I am sure I will settle in but for right now, we live here.  4 miles from home but it is a world away.

Lent starts tomorrow.  Mary-E  is giving up blue cheese, feta cheese, Mexican cheese, soft cheese, raw eggs, raw meat and sushi.

I am giving up not walking 30 minutes a day.

We have lost a few things.  St. Anthony needs to visit.

Day 26 ===============Engraftment

Second day of over 500.  EllieMae can become a final memeber of the family.

I am going to sing the happy platlete song to the new cells.  Maybe they can learn some new tricks...

Still getting platelets at least twice a day.  Lots of good sleep.

Miracles......

I have always been a burning bush kind of person.  I am convinced that most of us are.  We have all been schooled in the big things in the bible. Sea's parting, people coming back from the dead, thousand's fed with a few loaves of bread and some old fish.  I know that there are small miracles all around us.

Anti-biotics.  IV Tylenol. Stem Cells. Starbucks open at 6:00 am.  Lab equipment that operates all night. People that sit for 2 and half hours and give platelets. Smart, motivated nurses and doctors and cleaning ladies and kitchen delivery guys that bring us mint water.... the list goes on. 

Daffodils, scarlet runner beans, loving parents, loving siblings, loving friends.  Maybe all of these are not considered miracles because we forget to recognize the little things in life and focus on the stuff that makes us crazy. Bad drivers, bad food from the kitchen, beeping monitors and pumps.  Low counts, leukemia, infections, bodys that eat platelets, weird unexplained side-affects.

Today's positive miracle:  ANC 987

Today's negative challenge Platelets 11 after two infusions.

Somethings are just Wrong....

Cancer

Fake blue colored orchids

Pink Platelets.

Some people's taste......

No real news.  Just waiting but in a good way.

Ms. PacMan

Ellie Mae is just continuing to chunk along.  She is producing white blood cells like the Little Engine That Could. 

Mary-Elizabeth's  pain is getting better overall but there are lots of little issues that we are needing to address.  This is making her feel pretty bad in general but progress is being made. 

 Lots of emotional ups and down.  The world view depends on the amount of sleep she is getting. Good movies, trash tv and online shopping is a way out of the sad places. 

The issue that has made life really difficult is her newest addiction to Platelets.  She is chewing them up as fast as they are transfused.   Her body is playing Ms. PacMan and the platelets are loosing.  They are looking at why.  They are looking to see if she has developed new anti-bodies that are rejecting the platelets.  There is a possibility that they may have to find some donors that are specific to her needs.

We talked to the doctors and they are not too worried or surprised.  They expect that she will be "platelet dependant" beyond day 100. 

So the time continues, we wait, I wait, I work on getting Mary-E fed.  I work on folding cranes, watching the ball outside the window deflate.  Maybe when it falls out of the tree, we get to leave. 

Tomorrow will be our 30th Day in the Hospital. It is time to address the food situaiton.

Busy busy time.  Lots of days and nights when there are many many disruptions. We are both exhausted but knowing that Ellie Mae is working gives me time to focus outside of this room. 

The hospital food has not been forgotten nor neglected.  I have been silent about most of the food because I have been talking and watching and thinking for the last month.  I have been questioning the staff about what they have observed over the years.  I have asked them what they eat in the cafeteria. I have asked them how much food they fix the children on the floor and when.  I have talked to the poor beleaguered parents about how they survive being in patient. I have talked with the children themselves. 

The kids like the sound of the food but the reality is pretty dismal. 

M-E was pretty healthy in Cancer World  terms when we moved in.  She had a celebration dinner at Rover's and maybe we had a bit of mostly legal sushi.  She was eating when she came in here and has continued to do so.   I managed to order a few things from the kitchen that worked. It took a while but she was given great Oreo shakes, berry smoothies and some cheese cake when that seemed like the thing.  The guava juice, ginger ale and ginger cookies came when we asked and made things easier. The real mashed potatoes, the oatmeal, the creamed corn and some other things.

She does not even want to try anything now.  She has been burned too many times by things that are delivered.  I don't want anyone to think the people from dietary who work here don't love these kids and try to feed them.  They have gone to great lengths to figure out what to do.  Karen H. went as far as to raid the catering kitchen and bring the plate of cheese cakes.   Kim has brought Mary-Elizabeth food from outside vendors that have worked.  Andy the snack guy went and bought her Kettle Corn with his own money.  The day to day staff clearly care and are forever disappointed when nothing sounds good to the kids. 

The caring stops there.  No one could look at what is served to our children and say that management cares.  If they care they are unable to do anything about it.  They don't have the intestinal fortitude to make the necessary changes.

This very prestigious institution is failing at every level to feed the children on the Seattle Cancer Care Alliance floor of Seattle.  I should say that they know it and have plans in 2014 or so there will be a new kitchen.  There will be new space.  There will be more staff.  There will be on-demand food.  So until then, too bad, so sad.  We are out of luck.

Now it is a hard job to feed Hem/Onc kids.  They are sick, really sick.  There are days that they want nothing and can not eat anything.  Then there are days that they are hungry and multiple meals are wanted.  It is very important that the food that does go in a child have nutrition.  Good Nutrition. Real food, fresh food, freshly prepared food. Fresh vegetables, fresh organic meat, fresh prepared salmon, home made cookies, real home made soup, fresh salads.  Food that is delivered at the appropriate temperature and prepared in a safe way.  None of this is available here.  This is the land of processed food.  Nothing is prepared fresh, the ingredients are poor second class quality and since no one eats it then who cares.

The parents care.    There are constant trips by familys out of the hospital to buy food.  Familys bring in food.  It is pathetic. It is amazing and counter intuitive.  We are already under stress.  I make trips almost every day to some place away from the hospital to find something for Mary-Elizabeth that will help her regain her health. 

I am so so tired.  We have been through so so much.  My daughter needs me to be here while she takes her meds, has transfusions, has post meds, etc...... 

It is 8:32 p.m. and she is sleeping.  She is going to wake up soon after her second platelet transfusion of the day.  She is going to get hungry about 10:30 pm and there will not be anyone to call to bring her anything.  The nurses will prepare some pre-packaged, astronaut mac and cheese, toast, yogurt or cereal. She will be fine. Wouldn't it be great if she could have a fresh salad or some salmon or a toasted ham and cheese sandwich, or some fresh fruit.   Oh well, she just had a Bone Marrow Transplant after relapsing after 5 years. She is just a kid.  Her mom is busy, she is so worried about the fate of her only child she is not going to do more than complain and then get on with life.  And it should be enough to know that someday there might be food here.  It isn't here today.  It won't be here tomorrow or next week or next month. 

We will be here tomorrow and the next day and next week and next month.......

Maybe Ellie Mae is not making platelets because there are not being fed????hummmm

Hard 24 hours or how many platletts can she hold in a day.

We have about 100,000 platelets floating around our systems.  If the saber tooth tiger grabs a hold and rips off our limbs there would be a way to survive. 

Ellie Mae is working but she is not into full production.  Gingerly she is making white cells and that is a big job. There are about 3 dozen or so kinds of white cells, so it is a big big job.  Evidently EllieMay ( I am trying to figure out what spelling I like the best.) is concentrating her efforts on mostly Whites and we are very happy she continues to do so.  When there are counts of 500 for three days in a row Mary-Elizabeth will be given the label of "engrafted".  Right now she is "engrafting". 

Since EM is working whites, there is a fair amount of ignoring of the platelets happening. That is okay in my view because platelets and reds can be ordered in, like Chinese food.   The reds are more run of the mill Chinese: lomaine, sesame chicken, fried rice, dry sauteed green beans.  Available on most street corners.  Platelets on the other hand are foo goo.  They are hard to come by, very short lived and can only be prepared one way lest they cause bad reactions.

Mary-E woke up yesterday to a bag ready to hang.  She had dropped to 6000.  So a unit when in.  No problems.  Around noon she woke up with purple hands.  Not arms, but hands.  Dark purple with darker purple life lines and creases.  I called the nurse, who called the doctor.  In came the nurse, in came the physicians assistant and then the doctor with the alligator purse... oops, I could not help myself.

They looked, they pondered, they exclaimed, NEW SIDE AFFECT and ordered some more platelets if her counts were low.  An hour later the news of LESS THAN 5.    I suggested we order two bags and was told it is not done.  So we waited and around 4 new platelets started.  More blood was drawn and she was 19.  Good bump but since her transfusion number is 20, they ordered the second bag. 

By 4 am this morning the hands were a lovely shade of lavender.  She had had a dose of diuretic for each bag of platelets and they had worked.  She felt so much better.

Today will be a day of sleep and quiet.  I am barring the door.  No one is coming in except the doctor with the alligator purse, the nurses.  We had a glitter emergency last night so no need to clean the floor until this afternoon. 

Oh, Happy Valentine's day. 

Mountain Climbing

Transplant = Mountain Climbing.  Lots of preparation, lots of work, lots of uphills and then only a few minutes at the top to rest. 

Let us not discount those few minutes.  Moments to celebrate, thank all the gods in the endless universe, say a few prayer, make a few calls, have some champagne cup cakes, a celebration dinner with grits, greens and fried chicken (she is southern now you know), two really great nights sleep but then you must come off the mountain.

The way down is steep and dangerous.  It is full of viruses and bacteria and fevers of unknown origin.  It is full of weird coughs, red skin, unexplained blotches, platelets, red cells, anti nausea medication, weird stomach pains, unexplained pains in places we don't want to even think about, swollen things, angry livers and kidneys.  In other words, it is fraught with dangers.

Once at the top of the mountain, there is no way to go but down. 

After some much needed and much appreciated rest, we are headed back to home camp.  We don't know how long to get there but know it will be more than inviting.

Mary-E is working on having her room re-done, new paint, new chair, new book cases, a place for her computer.  A place to grow stronger and healthy and gently return to the world she used to know.

Cranes will continue to be strung in anticipation of the day we hit base camp.

Its Ellie May in the Bone Marrow on Day 18................

WE are so so excited.  Ellie May is working hard.  She produced enough cells to appear in the peripheral blood this morning and came up with 208 Neutraphils....

Mary-Elizabeth is so relieved.  I am just humbled by the process, the prayers, the good energy, the every thing. 

We are going to nap today and recharge before we get ready for part two and part three.

Again, thanks everyone....

Day 17

It appears Ellie May is winning the race.  Meb's cells are gone completely.  Lots of Ellie May.  We will know for sure after Day 28 bone marrow.  But I always knew the oldest would winnnnnnnnn.

No counts yet, no raging infections, still in isolation because she coughed and told the doctors.  Auntie Belle told her to keep any toe jam away less they want to culture it.   I think that is good advice.

This seems to be the longest week.  Nothing is really happening and everyone is getting on edge about it.  We are ready to turn the corner but are not quite there.    We both know that around the corner are a whole new set of challenges and dangers but engraftment is the only one we are focused on right now. 

Still folding cranes......

Day +16, Year +81, 400+ days without Papa

I am just so sad today.  Father would have been 81 today.  He missed being 80 by one month and 6 days.  Maybe he just did not want to leave his 70's as they were pretty good years.

Still no counts, I assume.  They did not draw labs this AM because she is still receiving red cells.  "Line Traffic"  (a whole story for another day).  I don't think today is the day.  She is tired, sore, angry, frustrated, sad, despairing, suffering from "left behind by life syndrome", you name it and there is deep despair... It is breaking every one's heart. 

Oh and if there is an errant white blood cell swishing around somewhere, I am going to be opening lots of bottle of champagne. On campus, in the hospital..... What are they going to do... put me on another list?


Yesterday I went home to check on the mail and do a couple of things like empty my voice mail.  I have not listened to any saved messages since Dad died.  Yes almost 400 days.  I figured that there was nothing that was still urgent.  Yesterday I was doing something else while the playback was happening and yep, "I just want to know......." in Dad's snide teasing voice.  I knew I had kept a couple of messages, I just was not prepared to hear his voice.  But then how do we prepare for such things.  I have been "seeping" ever since.  


If I could, this room would be full of daffodils today. ( No plants or flowers allowed) Lots and lots of them. They were Dad's favorite flower and he loved the color.  He bought a car that color.  A car we called the "yellow dinosaur".  He had polyester pants that color that he promised to throw out the window of our hotel in Venice on New Year's Eve.  I am sure that Mom will be going to the river and sending a few daffodils to the ocean today.  I will do something, as soon as I think about what that is.

I think today gets to be a sad day.  A day to list the losses and to think about what they mean.  A day to just sit and seep.  Sometimes those days are necessary so that when the days are over we can look back and measure how far we have come and how much we have learned that during the long dark cold wet miserable winter. The daffs are growing and will appear.  They remind us that not all is lost.

Maybe I will walk through the neighborhood and borrow a few.  Opps, did I say that outloud? 

I am not sure if I like being called "Elder"

http://www.gonzagabulletin.com/news/an-extraordinary-fight-1.2761139

Day +15 A bit of pink before the Dawn

Remember the list of stuff that they give Mary-Elizabeth?  Well last night they had timing issues with her Platelets.  They can not do blood products with other drugs through the same line so one had to be free long enough for the Platelets.  Then her platelets have to be washed a special way (lest she get hives which leads to other nasty things) and that takes a long time.  And to make things even more fun, Platelets have a very short shelf life outside of the body.  The timing did not work and a bag of specially washed little cells became medical waste. 

Long and short of it.....  Platelets were hung about 5: am...  I can't imagine how all this works if there are problems that require more drugs. She is doing really well as can be expected.  Nothing really weird or scary.  Just normal weirdness.

She is sort of red all over and no one knows which Syndrome is causing that to happen.  They treat both with steroids but they don't want to use them too soon because they discourage the "Girls" from setting up their home. So the red skin stays, is watched and we wait until there is something more certain.

As I was waking up this morning, I looked out the window and could see tinges of pink, hard to see, impossible to photograph, some clouds announcing the coming of the new day.  I thought it was appropriate to see such a sky this morning.  We are getting close to dawn.  It is going to be a very very long day but I am so grateful that we are going to get to live this day, and to the fullest.

Day +14 or "your not the boss of me"

I cannot leave her for very long.  She is so grumpy and everything is a big disappointment.  Every possible thing that can be deemed "not expected" is a problem. 

The straw is not a bend straw
The pillow pet's Velcro is not working
The Hazel Nut milk is not Peppermint Milk
The bathroom has not been cleaned out
The sun is up
The world is turning too fast
The.................................

but the red skin, the mouth pain, the dry mouth and lips, the body that is unhappy and not very peppy are all happy signs of work happening deep inside her body.  Someone is objecting to being in her body so they are doing the work necessary.  Remember the new cells have three jobs:

1. become  a working  red, platelet and white cell factory
2. learn to be happy in the new body.  Think before you attack
3.  learn to love the new body and help protect it.

We suspect in the next week to 10 days there will be evidence that #1 has happened. All her symptoms know say that it has but there needs to be some solid proof (counts).   #2 will take a bit of tweeking.  Sometimes the new cells are a bit over enthusiastic.  Sort of like a puppy. #3 is more like sending a child to college, it takes a while to get there.

I will drinking lots of Starbucks, keeping very close and folding more cranes.  Only 317 folded and strung.  More to come.

Day + 13 and we regress and we are in isolation.....

Day 13, we are in now where land.  No counts, no understanding of the blisters that appeared on her skin.  No decision as to whether or not she had Graft vs. Host Disease or Engraftment Syndrome.  She feels bad, she feels unhungry, she feelssssss.   Pick a bad feeling and Mary-E has it right now.

The nurses say that counts are coming, the doctors are saying counts are coming.  Some of the counts will start to make her feel better but when she has counts the white cells will rush to her sites of infection and call lots of pain... So we are waiting.

We are both regressing.  The sicker she gets, the younger she gets.  She is sleeping with a Pillow Pet right now and so am I.  Everything is a problem. Years of maturation are disappearing like Shrimp from a buffet.  My ability to handle it is dependent on the amount of sleep I get.   If I leave she really has problems my absence.  If I stay she asks me to leave or says I can.

 It gets worse as she becomes more anxious and needs things to be the same.  There is nothing about this process that provide any continuity.  We have a new Bone Marrow attending, week-ends have lots of changed staff, different Bone Marrow Physicians assistant and today she will be having three nurses, none that she has ever had before.  The hospital has had a big change in how they chart and there is an undercurrent of tension and concern.  Things are not being done the same, things are being put places that make since  and things once charted cannot be found.

There are sparks of my child still here.  I know that she will come out of this whole and regain her health and find her happy place again. 

So Isolation.... Why:  Because there are two small unidentified blisters on her skin. Because they could be things like Chicken Pox and Herpes Isolation is imposed.  She has to stay in her room.  I am not allowed to talk to anyone on the floor.  Nothing that comes in the room can be left on the floor.  I have to leave the SCCA unit to use the bathroom.  People can visit but lots of Purell is needed. 

Cultures have been been taken.  I am betting no real problems but it is good that we are taking precautions.  

So tomorrow is going to be day 14, it will be a better day.  I am going to make sure that there are sprinkles on all the cup cakes.

The girls are keeping busy while we all wait.

Day 11,,, Not a happy time but Not an Unhealthy time.

She has no white blood cells.  She has had lots of very heavy duty chemo and total body radiation.  Her body is breaking down and there are no white blood cells to make things better.

She is in pain most of the time but they are working really hard to take care of that.  She has a Happy Juice pump and has almost unlimited access to "Happy Juice".  There is still some jiggering going on  but mostly the Happy Juice is working.  She is so much better when there is no mouth pain, or stomach pain or other pain.

Day 11, too early for any real news that the girls have done their job.  The docs have been talking about how she will begin to feel better and there will be some start to healing of the mouth sores.  When I asked if we would see some sort of counts to let us know she would be feeling better it was explained as follows:

We are hoping and anticipating the cord cells are working now to grow and multiply to an extent that they can leave their cozy home and enter the blood stream and be useful.  We had observed that the mouth began to heal first so a doctor did a study and found that when he scrapped the mouth of the patients they found dead Nuratiphils in the swabs.  Evidently as soon as those puppies are produced, they leave the cozy bones and go do their jobs.  Brave Little Engines That Could.

We should not discount how sick she is.  Yes she is eating Cheese Cake (thank you Uncle Alex).  Yes she ate a Chicken Almond Salad (thank you YaYa Pattie), yes she was able to look at the Tiffany web site to find a charm suitable to live on the same chain as the thoughtful Star Fish the Reinfeldts brought her from Nashville, yes needs more lint rollers to remove her chemo hair.  But we are hopeful that all of these things are leading to a great result.  

She is getting mad and frustrated about what is happening and being done to her. She is rallying the strength to do this hard job of replacing her immune system one cell and one day at a time.  I so see glimpses of the strong young woman we all know and love.

Every day I remind Mother Mary that any help she could send our way would be appreciated.  I swear a little, cry a little, laugh a little, whine a little, walk a little, drink a little and wait alot.  Sometimes I just sit very close to the dear sick child and "pet" her while she goes to sleep.

We will come through this and will do it with great alacrity.  The view from our soul will be changed forever.  Nothing will be as it was, yet vastly familiar.  Mary-E feels like she is being left behind by life and her friends and her world.  I know the feeling as we crawl deeper and deeper into this place of change and heeling.  I think the real result will be sort of like the Star Trek form of transport.  We don't have the high tech version but rather the slow painful kind.  When we are returned  in the beam, we will look the same but have been altered slightly.  

Change is good.

MARCHING IN TO DAY 10 AND GETTING SLAPPED DOWN HARD....

Where do I start???? Good day 9, some news from the research people that the Day + 7 blood draw was as hoped.  All three girls are still circulating.  It is good to know that they are all there and no one packed up and went home early. 

Mary-Elizabeth had a great great day.  She was up, she bathed, she walked, she ate, she watched some Here Come The Brides, she skyped with Joey, she visited with friends that came.

It was a great day, then......  a little fever a little pain where it should not be, a need for some additional oxygen, some pain, some more antibiotics.....  some bleeding, some....


The body breaks down more and more each day and there is no real way to fix it yet. She is still eating and still drinking enough that she is not required to have IV feedings.  They are very pleased because it keeps your gut otherwise occupied and does not give it time to find a long forgotten bug to let loose. 


So Cranky sore, tired, unhappy, feeling sick child. Worried mom.  Worried dad, worried doctors. Worry enough to go around.

Maybe while we worry, the girls are working hard, all three of them.

Even the rocks cry for those we love.

The girls have to get to work and make more blood products from the inside yet. No one has moved in permanently.  They will..

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

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.