I'm Stuck....

In a weird difficult and not the most healthy way.  I feel like there is collar around my neck and if I get too far away, I am yanked back.  I reach to the edges of the universe only to be snapped back in with great force.  

I push Meb out as far as she can go and she seems better at free floating than I am.  So, every single day, I try something to free myself from the deep gooey morass of Cancer World.   

List of things to do.  Then one appointment with the Kidney Doctor and I loose my ability to finish the simplest of tasks.  Going to try again.  
Stuff in places it should not be. No apparent reason, waiting for more analysis.  Possible way to help the kidneys be smarter, waiting for the end of Prednison and Siriolimus.  Best medication also lowers blood pressure so they don't really want to give it to her at this point.  Child would be a slug.

So More waiting.  

I am going to do some laundry, my mom is coming to visit and will be going to see Cher with Mary-Elizabeth. Should be a fun week-end. 

Hoping Status Quo is a good thing...

Meb is still working on getting better.  I am watching a very difficult recovery, even though it is a cold.  Like last time, it takes extra time for her to get better. 

Considering how much Lulu has been through, high fever, strep, full lungs, collapsed lungs, blown pupils, unhappy kidneys.  It is hard to know how her recover will transpire.   Very very slowly I am sure.  

Hoping today is a day of explosive ANC activity.

Lulu is still the same....pupils are responding but no body movement....her baby sister Rylee  and Payton have been by her side today...they have been talking and joking and crying out to their sister to give them a sign a flicker anything to show them she is there. This was hard to watch and hear...sisters fight...sisters bicker...sisters irritate the crap out of each other...today was humbling...sisters begging for their sister to survive to fight to live another day to go shopping.. fishing...and to braid their hair...they are here lulu waiting for you. ..give them a flicker...

Hoping

 for lots of rest and some stability for Ms. Lulu.  

New Challenges and New Horizons.

You have to focus on the big, out there in the universe goal or it will just kill you. Out there changes a lot.  It can be next blood test, next scan, next itchy spot, next moment of nausea. But what becomes nice is knowing you become better at "Nexts"

Our focus has changed to the short long term again. A bit of forward planning is happening.  Okay so there is some blood in her urine and the docs are all a twitter, we are going to visit Grandma Mary and Aunt B.

She is registering for Gonzaga in a day or two. She has three possible schedules.   She is ready to work on her license.  I have planted two more trees in the back yard.   I start my final  quarter of school. 
We are making some progress. 

The thing I know right now, right this minute, is we have changed our focus but know it might have to be reined in again.  But that is okay.

Oh, Gonzaga is out - go Shockers....

Rebecca is going to have to do as Dr. Tracy used to say "A do over"

There is just too much going on right now.  She retained almost 26 lbs of fluid over 24 hours.  Kidneys are tired, blood pressure is up and down and not in a good way,  spleen is not doing what ever it does, liver is not functioning and on and on and on.

I spoke with Elizabeth last night and she was exhausted and emotional and scared. I so wished I could have taken her a couple of tea cups and some tea. 

These kids are strong and determined. 

It makes me so so sad.  It is so weird how connections are made.  Even though we don't spend a lot of time in traditional neighborhoods, we still look out for each other's kids.  Our neighborhoods are a bit different then before.  Little bits of data, 1s and 0s across wire and cable and real things happen between people. Someone asked why I reached out to other moms in other states and countries.  How can we not do that?  Cancer parents have a special insight into what is really happening and it needs to be recognized and we need to fix it.  Just fix it.....   

Prayers go out for this family as cancer wins again. 

Sometimes the Dragon Wins and Sometimes he does noT!t

During my lawyer days I found a version of this on the wall in a small work place for the weary court house lawyers.

 

 

I am pleased to announce that no Dragon is winning in this household. 

 

We met with Dr. Tracolimus today and went over all the numbers.  I had been pretty upset the last time we met.  I was confused and angry and frustrated that we had transformed from happy kidney land to be careful because if you eat one too many pieces of sushi, we will be doomed for eternity to dialysis and eventually kidney transplant.  I have had quite enough transplants thank-you very much.

 

They had has some serious discussions and her improving creatine level has led them to back off from Stage three Chronic Kidney Disease.  At worst it would be 2, and could be less if she keeps presenting good numbers. 

 

Big sigh.  I have so afraid if we could go from nothing to 3 in a month, we could be looking for a Kidney sooner rather then never. 

 

Side effects of one transplant is enough.  Off to buy sauerkraut to make soup.  I will let you know if it is good........

Balance

There is always someone trying to walk on a wire across some big open space.  Grand Canyon, the quad at U of W ( I go there you know), or just between a building or two.

We ooh and awww and we are amazed all holding our breath lest they plummet to their death.  We are so impressed with their strength and determination and their ability to concentrate so so much that they don't fall.  They have to breathe so we hold our breath for them in support.

We Cancer World people live on that wire and we hold our breath all the time.  We try so so hard to make it across to the other side. 

"Your child has cancer.  Here is the plan.  You have two years and 14 days to suffer."  They mention secondary cancers and other such stuff but you focus on "getting to the other side."  We mostly get to the other side.

Remember the movie Holes, well after you live on the wire for a what seems like a million years, you find the "other side"  is not inviting.

There are Holes, and dangerous animals and scary twists and turns.  There is no way to prepare for anything but as Paul Schliep put it.... Surprises.

Pick an organ, any organ. Cancer treatment can effect it... If not now, in the future.  It took 5 years for Mary-Elizabeth's thyroid to die.  Her kidney's are not so forgiving this time.  Total Body Radiation, pages of meds, months of steroids and well...... 

Kidney's are sick.  They are tired of filtering and doing their job.  They are going to have hissy fits and not do their job very well.  They don't regenerate like their neighbor the liver.  My brain is not big enough to wrap around this issue. 

 I do know the answer is not a Kidney "transplant". OMG.  Everyone this is not television medicine.  Transplants are the last resort.  They are the worst thing that can happen to someone.  Needing a transplant is like having a tiny bottle of air and having to make it until next Tuesday for the Russian capsule to bring some more!   Now, not that I am not grateful for the fact they are even available but this is a terrible experience.  It is not Jump out of the twin towers or die in the flames bad, but it is close.  She had to jump and hope they built the net in time. 

I am hoping we make it across the abyss.

Hearing Words, now Seeking understanding

Stage 3 Kidney disease......

Kidneys are not like livers, they don't heal.  They can be stabilized and encouraged and protected from further damage but......

So that is the news.  I don't have any other answers other than we are going for ramman tonight.  Doing some research and freaking out a little bit.

I think I am going to go watch some South Park or some more sushi movies....  I just can't think about it right now.  I makes me sad.

So, I am back in my Go With the Flow Mode.....

A week or so ago, I took a phone call from someone at the SCCA.  On the other end of the phone was a lovely, kind, smart, caring doctor asking me some questions.

To the normal happy go luck parent they would have been simple questions.  They would have been answered and then dismissed as nothing to worry about. We will do a couple of tests and see how it goes.

I am like the hyper alert crazy person when it comes to my daughter.  I have a 12th sense when a call comes and I analyze everything to the nth degree.  I hear what they say, imagine what they don't say and I go to the deepest, darkest place in the Universe.    It is my blood and in by very being. 

I have no choice.  I was born on the Salmon River, the famous River of No Return.  My  river looks like this.  Not a nice straight or normal river.  It is full of twists and turns and rapids and hidden rocks.  Remember once you go down this river, you never go back. 

When I receive one of those calls, I feel like this.  

 

I tell myself it will be all right, I think about what could happen, I call my family, my friends and share the panic.  I don't want to be one of those crazy wolf crying persons but  we all have to remember where we are in this journey.  We are not done with this river, yet.

 

So more appointments, some things to do and drop off, more blood to be let.  School is a good distraction.  I am picking up the language and looking for the secret handshake.  I think I have to do an MBA but that needs to wait until next month.

 

Floating Along.

 

 

 

 

 

 

Think of this as a Presidential Debate Answer

We are going to see the Kidney Doctor on the 25th of October.  Between now and then the following information will be gathered:

1. Blood Test for BK will be returned
2. New Creatine Tests will be run
3. Some Urine tests will be completed

Until then, because she has no pain or huge puffy feet and remains the right color we are just chunking along. 

Prednisone is going down. She continues to study and watch mindless television and walk the dogs.

I continue to go to school and try to figure out where I might fit into an organization.

Monday I am going to substitute in Kindergarten.... Should be fun.