Saturday, March 31, 2012

Wierd things happen when you are not paying attention.

GVHD..  is here but not in a large amount.  No treatment for it now.  She seems to have an H.Pyloric infections in her stomach.  It is a bacteria many of us have that can create an ulcer.  More tests must be done before a treatment will be prescribed.

We also whined enough that they changed her overnight hydration to 10 hours.  I even re-programed the pump with little problems but there are secret numbers.  I should call the FBI or Home Land Security to see if they recorded the call. 

So more waiting but not a huge problem.

While we wait, I am starting to watch the outside world wake up.  I was moving some things around in the garden and noticed that Mr. Flamingo was in the tree.  I was going to switch trees.  Oops the tree has grown around him.   If the tree swallows him and then he grows inside and then the tree dies and becomes fossilized, then what? 

Creation, Step by Step or in this case stitch by stitch

http://www.ehrmantapestry.com/

Last year sometime Mom found a set of needlepoint canvases that she thought would make a good addition to Holy Names.  My job was to order them and take a set called Creation over to the school.  

I ordered them and then they never seemed to make it to the school.. Sorry Sisters.

When we were headed to the hospital, I threw one of the days of creation into the "project" bag.  Along with the origami paper and Learn How to Water Color stuff.  After the 1001 cranes were done I picked up the needlepoint.

I have another unfinished project but broke one of my rules and started another.  I meant to come home and pick up the Renoir but did not.  So I began DAY 1.... Light

I guess it was the perfect thing to work on. at the time.   Small, pretty easy and there was a plethora of light in the hospital.  It was easy to do and the  symbolism seemed to be right.  Out of the darkness and into the light one tiny stitch at a time.

It seems to be working.  Some issues with black and dark dark, did I mention dark green but then I will be the only one who knows for sure.  I am looking forward to finishing this one and working towards somethings more solid like Day 2 ..... Firmament.  Working our way back to reality and more substantial life.

Friday, March 30, 2012

Remember..... We are always ELIMINATING a problem

So in very standard fashion it is easier to tell what something is "not" instead of what it is....

Big invasive test with cameras and things that biopsy stuff.  Answer:  The samples did not arrive from Children's on time so we don't really have any answers. 

So early not conclusive answer:

Little bit of GVHD on the skin, so little that they are not going to treat it. Remember a little is good.

Maybe H. Pyloric (bacterial)
 infection in the stomach.  Their are lots of neutaphils doing a job but until another blood test and 5 days we won't know for sure what they are doing.  Not CMV (another bad virus).

So we wait.  This is not television medicine most of the time.  Waiting is part of the human condition one from which we are trying to escape.  We don't even wait for our Netflix movie to arrive. We stream it. I make cranes and do needle point and try to make some decisions about where the dog kennel goes.  Little things. 

I think this whole ordeal is God's way of making me learn some patience.  It is a bit confusing because while I am waiting for results, waiting for counts, waiting for fevers to go up and go down. Waiting for pumps to beep (should be in 30 minutes) waiting for my heart to stop pounding. There are all these worries about what I am waiting for to happen. Right now I am focused on the fact that my neighbors house seems to be listing.  (Carol or Keith, come over and take a look.) 

I am finding that waiting does not take me to a small quiet place.  It makes my mind speed up and not in a linear way.  My brain is sort of like a scatter bomb. All you have to do is look at my browsing history to see.  Everything from Oliso Irons to dog supplements. Don't even ask. But the Oliso Iron looks very cool and can be found at Costco and on Amazon.

One thing I love not having to wait for this year are the daffodils.  They are up and happy and love my yard. (Judy you too will have spring.)





Wednesday, March 28, 2012

Neutriphils and their cousins.


So we live and die by the "counts" .  I learned in the hospital that if you have a medical question, WEBMD was old hat.  Go directly Wikipedia.  Now this could be poppy-cock but I sense it is not.  The picture might be too small here to see but their are pictures and links and lots of do-dads on the link. 

I learn new stuff every day.  Last night I learned that it just sucks to be a Swedish prosecutor.  I just finished watching and reading the Swedish mini-series for the Girl with the Dragon Tattoo.   Pretty interesting.  Not for everyone.

So..... Now What

8:30 a.m. SCCA for a meeting with a provider that does not come in on the regular clinic days of Monday and Thursday.

9:15 a.m.  Head home.  (Parking was only one gold dollar from my stash in the car.)

11:30 a.m.  Head to Children's

11:58 a.m.  Meb to Hem/Onc clinic and I head to check her in.

I am here to check in my daughter.

Last Name.

Sierra-Lanham

We have no one on the schedule by Lanham.

Do you have Sierra Lanham?

No we have no Lanham on the schedule.  Are you sure you are here on the right day?

Why don't I write it down for you.  SIERRA LANHAM.

Oh, Sierra Lanham.  We have her scheduled.


1:15 p.m.  Beeper goes off and we head to her room.  Cloths are changed.  Questions are answered.  Pregnancy tests are refused.  Doctors come and see her and then she is off to the "non-sterile" procedure

1:30 p.m.  Camera down the gullet.  Pictures taken, biopsy taken (these people love to biopsy and culture)  Skin biopsy taken on her leg.

2:00 p.m.  I am called back to find a sleepy, grumpy thirsty child. 

3:15 p.m. home again. 

Now we wait until tomorrow.  Clinic 8:30 a.m.  and results.

While this process just sucks sometimes I was reminded of how difficult Cancer World could be.  I was waiting and a man asked the receptionist why he was there.  He had come from Mose Lake for some tests on his daughter and they were done in Bellevue this morning.  He and the family had been sent to Children's and did not know why they were scheduled to seems someone in the Hem/Oncology clinic. 

My heart sunk.  I introduced myself.  Gave him my card and just listened to his confusion and dispair.  We talked for a bit.  I don't think I helped but told him that he would in great hands.  As Mary-Elizabeth said:  They are newbies.

No matter what is happening and no matter how long we have been at this.  We are not at the beginning.  Not that beginning at least. 

Sunday, March 25, 2012

Tell Everyone .....

Cord Blood Donation:
http://marrow.org/Get_Involved/Donate_Cord_Blood/How_to_Donate/How_to_Donate.aspx

While Mary-Elizabeth is currently in my room watching the Amazing Race because two moms somewhere donated their child's cord blood. 

Here is how to do this.  Pass it on to anyone that is pregnant or has pregnant friends or just keep it in mind.

It is free and it is life saving. What a combo.  Only if there was chocolate involved somehow.

I have assessed the situation.

I arrived home yesterday afternoon.  I was a bit uncertain about all the people that appeared to be very happy when I bounded out of the car.  I had not seen any of them for about a third of my short life.  I am pretty good at adapting. I fell in love with Rita and Kathy and Dan and Joe and........ the list goes on.  I have made new friends and may even get to go pheasant hunting.  I guess Grampa Neuzil has decided I am a good hunter.  Mom wonders how I feel about guns but I am Scottish by nature so big noise is pretty  normal.

So I am "home".  Some stuff has changed.  Mostly for the better.  Things have moved.  I keep running to the window to bark but the couch has been relocated.  I decided to redirect my energies to finding all my toys and seeing if they still squeak. 

 In my absence there has been some disruption but all and all it is good.  My sister does not get out of bed too much but when I tried to get in bed with her she let me.  Tucker has been thrilled.  I no longer seem to have a hankering for apples so he has been getting my leftovers. I am still good at making him chase me. I have "fluffed" out and some thought I was chunky but I can still get through the cat door.  I choose to go through it even when the door is open.

Things were good yesterday cause the family was able to throw a party for Yim.  He is from Thailand and had never had a party.  He did almost burn the house down when someone put 27 candles that relight.  It was sort of fun to watch him  try to blow them out. 

The neighborhood seems to have missed us but everyone is glad we are back. Even though we might be the noise family.  There are lots of things that must know we are here.  Squirrels, birds, dogs, cats, garbage cans, noisy mowers, cars, bikes, kids on skateboards. 

I can see in the near future Mom and Sis are going to be able to protect us from the interlopers.  They seem to be more relaxed and are putting more and more things away.  I hate when things are put away.  I love to chew anything in my path. I hear rumour that there will be some laundry folded and stuff like that.  I know better.  Mom never folds.  Sis is not really up to it but will be soon.

Home is a great place.  Not always the easiest but then life is not always easy. I understand Sis and Mom will be leaving really early tomorrow for the clinic but I have been promised a trip to Mud Bay so I am pretty happy about that.   I will keep you up to date when I can.  I have to figure out why I can get out the house but not back in....hummmmm

Saturday, March 24, 2012

Life has continued and So will we...

When the automatic doors on the SCCA floor closed on us in January the rest of the world fell away.  We peaked out on occasion but then would return and continue the internal battle of Cancer and Bone Marrow Transplant.

All my energy was taken by the day in and day out work of Caregiver.  I was not alone by any means but at no time did I ever not think about it.  It was a relief to be out of the hospital but I was so focused on the journey I could not not think about it.

It was a better stay because I knew we were there for a long long time.  None of the:  Do we go home today? Do we have to stay longer?  When will the counts return.  When will we have a chance to go out on pass.
We were settled in.  We did have the strength to be helpful to the newly diagnosed.  The recently relapsed, the long term transplant people.  I had the energy to continue my quest for better healthy and safe food. 

Because of our small tightly enclosed world I did miss a few things.  Did you know that gas went to $4.15 a gallon? Did you know that there are only 3 crazy republican candidates left?  Did you know that if you take birth control pill Rush Limbach wants to watch Porno?

I have decided to continue to ignore all the serious stuff.  I am sorting seeds, enjoying my daffodils and watching the birds.  I am walking the dog, looking forward to the return of Lily.

We are so so lucky. 



Thursday, March 22, 2012

Transitions are Tough

Why am I Surprised?  She has never been good at transitions.  This is the child that would be awake for hours if the sheets were new, or we were in a new place.  She has always had to have things exactly the same. Same pillows, same cloths same same same.

So home is not the same.  Her room was redone so she has spent all of her energy getting it perfect.  She is exhausted but I was able to negotiate a day off from the hospital.   Instead of trying to get her to do stuff, I am just doing stuff.  I am almost repacked for the hospital lest that happen again.  I am doing laundry, I am putting away weeks of hospital "stuff". We have had several people drop off necessities.  Fruit, soup, salad.  Things that helped us not go to the store until today. 

Home is a great place to go but a challenge in and of itself.  The new Hydration pump is the most interesting.  We had a long relationship with  Baxter during Leukemia part 1.  This new pump is noisy, sucks battery power like a fiend and is just plain whinny.  Pills are a problem.  They are due many many times a day and each time we get close to the clinic they change them. So my over organized child has to completely do her pills again.  I am going to try and convince her today that maybe she should only do one day ahead and not a week.

These are small things when I think of what other people are dealing with at the hospital.  We are so lucky to be home.  Her counts are good, even great.  She is improving every day. 

I am breathing a bit more everyday and beginning to let myself look ahead a bit.  I am going to get out the map and see where my boundaries are and focus on finding new and interesting things to do within 30 minutes of Children's Hospital.  No distractions.  I am going to work on my garden and my bonsai and my continued efforts to clean out my yard and my basement and my........

Oh, for all of you that do not appreciate St. Anthony, my kindle has finally returned home.  

I had ordered a Kindle Fire for my birthday for myself because it was released on my birthday.  The day it arrived my other one went by the wayside.  It could not be found.  It ran away.  I felt guilty about spending the money so I sent it back.  I figured my kindle would have the decency to return.  I looked, we looked, lots of people looked and it did not appear.  St. Anthony was contacted several times and did not come through.


On Tuesday when I was filling my car with 62.00 of gas (when did gas go up), I was making use of the trash cans and found the Kindle under the seat.  Smuggling making the point that if you not newly whizzy and wonderful you are still very useful. 


Of course I could not remember my password but then that is another story......

Home, settling back in, looking forward.  All good things.

Tuesday, March 20, 2012

WE ARE HOME.

WE ARE HOME

65 DAYS

Clinic Tomorrow but we are home today.  Beginning of spring.  Life is good.

Monday, March 19, 2012

Now What?

Hey God... Really.

It is time to cut Mary-Elizabeth a break.  Cancer twice was over the top.  Yes we are thankful for the new and ground breaking double cord blood transplant research.  Yes we are thankful for Children's Hospital's facility and the nurses and the doctors but what's up with the pain part. 

So she has had dozens of back pokes and so she has had to endure steroids in multiple forms over long periods of time.  Really, now is the time to make her have to deal with "disc height loss and dessication at L5-S1."  Decided to throw in some disc protrusion at T7-8 because she was not in enough pain????

You don't know, or maybe you do, about how mad and disappointed and discouraged I am right now.  I really have been good through all of this.  I have not beheaded anyone.  No bombs have gone off.  Hey they have not called Code Purple (disruptive person) on me one time.  Not one time.  Even though each time a Code Purple is called everyone asks were I am at the time.

I guess I signed on for lots of things and in the back of my mind and deep in my heart I know the side effects of all this treatment.  I just didn't expect to need to handle this new thing today.  Today we were supposed to be moving out of this room and heading home.  We were supposed to be moving back into our house and gathering our dogs and walking in the bits of sunshine peaking out of the edges of clouds.  I was hoping for a couple of long cold clear night walks that are so much a part of my winter routine.

I guess I just need to "hold my horses".  I need to continue to be a good advocate for Mary-Elizabeth.  I need to not be discouraged.  I need to put a positive spin on this for her and help her understand that this is not unexpected or tragic.   The pain will lessen.  The body will strengthen the right muscles to help her back. We will survive this and all there is to come.

I have just decided that sometimes I don't have to be happy about it!! so there.... stomps Sally Ann age five... 

AMEN

Sunday, March 18, 2012

I want this flower in my yard. I must move my house to Zone 16-24

http://www.desertnorthwest.com/articles/grevilleas_revisited.html

Best Laid Plans

One fever
Two day passes
One Spliting Headache from Spinal tap with Chemo
One backache from the Spinal Tap
One high Tacrolimus level
A re-occurrence of the BK virus
One inconclusive CT
One inclusive Ultra-Sound
One set of numb toes

and you win a few more days in the hospital.

Hoping for some more answers in the am.

Secret cooking making is going to happen today.... Shhhhhhhh  don't tell.

Here are all the cranes together.  They are going home and finding a new place together.  The cranes are so so beautiful.  When this is all over, I would love to have everyone come over and see them.  Plan a trip. 

Friday, March 16, 2012

Contridictions

Monday, home on Monday.  Good news but then a bit scary.  As any parent will tell you, they miss the 2:30 am nurse after about one night. They are quiet, they come in to visit on "little cat feet" and make sure your child is safe.

We go from home to outpatient.  The goal is to remain outpatient without too much bounce back. There are 36 kids here on the board and 15 of them are BMT patients.  6 are initial transplants and the rest are here for secondary issues. 

 When we leave we will be avoiding such things like fungus, bacteria, viruses and other nasty pathogens.  The SCCA clinic and Children's will be on our regular list.  We already have clinics scheduled for Tuesday.  Blood Draws, appointments, the like.  There will be lots of platelets and blood transfusions. We will be spending lots of time in one of the 77 infusion rooms at the SCCA.

 In a month there is something called the 80 day work-up.  Just like the previous set of tests and scans.  They are looking for evidence of Graft Vs Host Disease.  So far she has been clear but they tell me it is coming.  Sort of like Christmas, no way to keep it from coming.  Again a little is good.

When we started this process we were told that the success rate is 40%.  Three kids received the double cord the same week as Mary-Elizabeth.  We are leaving and they are not even close to leaving.  I have become friends with the families, chatted with the kids and hopefully will be seeing them after this journey. 

Wednesday, March 14, 2012

Day 49 of 365 and Roller Coaster Rides

Up and Down, round the sharp curves and then up and down again. Then we climb the big hill again...

There was a definite down hill ride yesterday but there was good bounce back. Every day there is different sort of thing going on and we are not the only ones that   I hear things as I travel the halls. 

Pat phrase is really the same statement:

Everyone is different
Every one reacts to medication differently
We can not tell how something will work out or anticipate a reaction

This is heard over and over again.

Things you never want to hear from a doctor or nurse:

I have never seen purple hands before!
Your levels shot up and that is very unusual!
We are not sure what this is a reaction to there are too many options but lets try........

Despite all the ups and downs we do have a chance to get back to the real world when the ride is over. Hoping for a smoother ride each day.

The 1000 and 1 cranes are done.  We must be closer to the end of this part of the journey.

Ellie Mae, our slow and steady turtle and a few cranes that are left over.....

Sunday, March 11, 2012

Even Starbucks can disapoint....

We have been here for almost two months.  I have a registered Starbucks card, I go every day at  least once and often time twice.  My friends have sent me cards, it has been the best part of my stay here.    I like 7 shots in a cup.  Meb loves the sausage breakfast sandwich. 

This A.M.  I headed there to acquire the sandwich for Mary-Elizabeth.  She had virtually nothing yesterday because of her sever headache that kept her in a dark and asleep most of the day. 

First they were our of sandwiches.  I could recover from that disappointment but then I tried to recharge my card with a bill larger than a $20.00 and was sent away.

"Starbucks does not take bills larger than a $20.00" 

After daily trips, hundreds of shots of espresso, and lots of interchanges, I was sent away. Without the a recharged cards.

Oh, dear now what..... 

I am at a place in this journey when even the slightest bump makes me cranky.  It is a silly thing.  I could give them a credit card.  I could go and get the bill changed in the cafeteria.  I could bring them 100 in coins. I could meet them half way and figure it out.  My emotional skin is so so thin I don't have any flexibility or creativity or .........

I needed them to say yes and just fix it.  Fix it.  Fix it.  Fix it... When things are so so hard and hard, some things just need to be easier. I need Yes to be then answer to any reasonable question.

I would think, "here,take money so I can be hyped up on espresso", would be easy.

People are coming and going.  Some are hearing "Yes":  Yes you can go home, Yes you can start chemo, Yes we can cure you, Yes you have options if this does not work. 

Some of us hear  "No"  No you can not leave the hospital, No you can not return to college in the fall, No movies, no dinners out, no no no

So next week we are looking for only YES.

BK still around.  Pain still around..... We are just waiting.

Thursday, March 08, 2012

Count Downs

Count downs are all around us.  Launching things, waiting for things to return.  Count downs to Oscar, Grammys, Republican Primaries, Elections, to just about everything.   We counted down and an are now counting back up.

Day 44 of transplant. 

We are almost half-way to the magic day 100 when we return to the care of our Hem/Onc team and are done with the Bone Marrow Team.  (When we became a BMT patient our door tags became Purple and not Yellow anymore, I wonder if we ever go back to being Yellow)

I am feeling we are on the edge of an abyss all the time.  There are challenges around the edges and corners and tools to fight them: but no real way to know what is coming or how it will be fixed or what is next. 

I found this card among my hospital stuff and thought if would be nice if there was one for those of us in Cancer World.  It might have symbols for such things as complications, procedures, medications and the endless amount of possibilities in our world.




We need a map. Things are just weird on this floor right now.    Something has happened to the staff, they aren't allowed to tell what is going on but they are a bit on edge.  The overfull floor, and I mean even overflow is over full.  the full moon, the weird weather, I am not sure but something is happening.  I am afraid I know what it is.

One of the patients, a person of less than 21 summers, is at the end of her treatment (and not in a good, lets go home and party kind of way)  She has no more options and only one nurse has been assigned to her care. Her care giver is spending all of her time in her room and is withdrawing from everyone on the floor.  It is sort of interesting on how we know something is happening, or rather not happening. 

I couldn't think of anything to do for anyone at this point because there is literally nothing to be done or said.  No words describe the dread, the fear, the anxiety. No amount of prayer, good thoughts, words or cursing helps.  

So I can do nothing but string a single beautiful crane with some shiny beads, attache a Starbucks card and have a discussion of with the universe about how sad all of this makes everyone, even if they don't express it. 

As I sit here and watch my beautiful child sleep, the prayers have double duty today.

I did find an oven on this floor in another unit.  I am scheming to have someone bring me cookie dough, a sheet, a spatula and then I am sneaking in to the room to make cookies......  We shall see how long it takes for me to get caught.  

Wednesday, March 07, 2012

I really am a bundle of exhausted Nerves but a Pedicure helps..

This has become the Trail of Tears, the Butan Death March, 40 years in the Desert.... Pick one, add one, it does not matter.  I have decided we are out of here on the Ides of March. 

Yesterday I arranged from someone to be here with Mary-Elizabeth while I took advantage of the lovely  gift from Nancy Ticen.   She found Spa Scotia near by and sent me a note letting me know a gift certificate was waiting.

I went yesterday.  OMG.  Who knew that if your feet are massaged in a dark and quiet room with soft music and then they take a cheese grater to your feet that it can give your a new look on life? It helped so much and I have cute toes again!!!!

Unfortunately I did yell at the lady who wished for me to fill out "paper work" and review their privacy policy.  My bad energy sent another woman running from the "quiet room".  Oh well, I apologized and am hoping I will be allowed to return. 

Things are "good".  Not great.  MEB is fighting the BK virus and the bladder spasms are awful but only two yesterday.  She pretty much is still here because of the virus.  It just takes time.  At least we know what she has.  So much of this process revolves around no knowing.  It is a process of elimination.  Each test or scan or evaluation is done more often than not to "ELIMINATE" a possible cause.  They are doing an LP on a child today to eliminate ________ .  Not to answer a question but to see what it is not. 

All of it is mind boggling. 

Floor is over full.  They are literally waiting for children's chemo to end so a child in the ER can be brought to the floor.  43 kids NEED to be here right now.

Still no real food being served to Mary-Elizabeth.  The head of dietary still thinks it is okay to serve Iceberg lettuce in 2012. 

Tuesday, March 06, 2012

Good Enough.....

I think I have spun a cocoon and am just sitting here and waiting for Spring.

In the last couple of weeks a part of me just became so so fed up (pun) with the food stuff that I just shut down. It seems so futile.  Talk about raging against the machine. It is daunting.

There is a total disconnect between the ones that plan for the feeding of the children and the rest of the hospital. If something is given to a child that resembles food it is  "good enough".  There is not an understanding that if it does not get into the body of the child (not the parents that graze out of desperation) it does not matter.  Feeding of the critically ill is not really on the radar. Mary-Elizabeth is protein deficient and the first thing they thought about was Whey Powder.  Not food, processed fake food. If I wasn't so discouraged, I would be laughing.

They know there is a problem and no one in the Administration, Dietary, or the Donors or the.... the list goes on, they just don't care.


I have read a number of articles about hospitals and there is pride when a meal for a child can be served for  67 cents down from 84 cents.   I can tell you for certain that  our dog Tucker gets fed better.  

I am sitting at Starbucks about to cry.  I just don't know what to do. The media is not interested. No one wants to say anything bad about Childrens.  The administration does not care they know they are bullet proof.  How can anyone say anything bad about this place, "The Cancer Kids Don't Eat Anyway".....

In the last 7 days Mary-Elizabeth has been served a small box of lettuce, two tablespoons of bottled Caesar dressing, 4 lemon slices.  Now I hope the lettuce was washed but doubt it and the who knows if they washed the outside of the lemons. 

Wouldn't you answer the following letter:

Each and every day I have to go out of this hospital to find something my daughter will eat. Each night I become more and more resentful of how much time and money and energy this piece our our day takes from my daughter. We knew that she would be here for 60 plus days three months before this admission. I tried to get this hospital's help in seeing that it would happen. I looked back in my blog and I have been addressing this problem for more than 5 months. It is so exhausting.
We have been here since the 15th of January and not a single meal has been provided to her that she would eat. The one thing that looked and smelled great was not safe for her to eat. There are 30+ parents each day that go through the same thing. This hospital does not feed it's most sick and seems to not care at all about it. It is not enough to say that in a couple of years we will have a new kitchen.
As I was coming back from UVillage last night I was trying to think how we can survive this current admission. So what if this facility provided each cancer family with a credit card that allowed us to purchase food and have either security or a taxi service pick up the food? Just a thought. We pay this facility 10,000+ a day. I would expect food to with come with the room. Please correct me if I am wrong.




I would like to not have to pay for her Starbucks breakfast in the morning or see the other parents struggle every day to find food that will assist in help their children get better. The same over cooked over processed, low quality food will come to this floor, day after day. Dietary knows they are not feeding this kid.
So tomorrow, I will do the same thing I have done for months. I will seek food for my daughter from some other place.
Maybe at the next fancy fund raising event or board meeting that the public can not attend, should be sent a tray from the kitchen. I challenge you and your staff to eat only food served to the kids on the SCCA floor for 90 days.
Sally A. Lanham
Mother of Mary-Elizabeth Sierra-Lanham

No where on the mission statement  is there a mention of feeding anyone.

Saturday, March 03, 2012

Day 39....... Cancer Count Schizophrenic

In Cancer World we are clearly schizophrenic.  We want low numbers, we want high numbers.  Sometimes high is good, sometimes high is bad. We would be happy with negative numbers unless we realized that no numbers are bad. 

Counts become our lives.  We look at numbers and fret over numbers and wonder if there is a new number column in our future.  In Bone Marrow World the numbers are different than in Hem/Onc World. I have seen both sides.  On this side of the world we want numbers to go up at a rapid pace.  We live with no counts for a very very long time.  

 In Hem/Onc world you want them to fall and then climb back up so that you can make them fall again. 

We have left the cell killing part of our program and are in the cell growing, nurturing part of treatment.  Slowly we want things to catch on and grow, but not too fast. Turtle pace is good.  We want the numbers to be real and not "juiced".  (Neulasta)

I am just tired of it all.  This last week I just wanted to go home but then when I think it is possible, there are problems with some new body part and we remain.  I have to put myself back in the "we are hear for a while" place and know that this is where we will be. 

Home will come soon enough and then we will yearn to return to this part of the world.

Friday, March 02, 2012

so..... now what or how the BK virus has become our nemisis

Bladder-Kidney or BK virus is present in 80% our our bodies.  It sits dormant and waits until things are hinky.  She has lots of the virus and now is having huge pain problems.  Pain that is so very horrendous that she throws up her pills and breakfast and dinner and.......

It is transmitted via blood products and from other people.  It has reactivated and there are ways to make it go away.  Because it is a virus there really is nothing to do but let it run its course and let her body fight it. 

 Opps, my daughter has no immune system.  We are doing lots and lots of things to suppress her system.  I suggested they stop the MMF and Tackolimius  (immune suppressants) and there was a chuckle and then a NO  NO  NO HELL NO.

No plan to leave.  No way to really get out of here until we find some sort of solution to excruciating pain that comes on in a nano second.

What to do?  Work on food issues.  String Cranes. Help parents, try to figure out how to manage at home when she is discharged.  Keep at St. Anthony about my kindle, try to remember who to thank for all the support and food and Starbucks cards we have received. 

I am starting to let myself think about finally going home.  I am looking forward to finishing Mary-Elizabeth's room moving her back in.  I am looking forward to some limited gardening.  I am looking forward to dog walks with both dogs.  I am looking forward to cooking in my own kitchen.  I looking forward to being on a firm path to what ever lay ahead.


I just wish we could convince Ellie Mae to speed up a bit.  She is moving at a turtle pace.