Moving Forward and still Staying Connected.

She is off treatment, she is back at school, she is thriving. She even missed a class this week because she slept in... how normal is that?

So there is a part of me that wants to step out from under the Cancer World Cloud and move on. We are done, it is over there is no looking back. Wouldn't that be great. Wouldn't that be a perfect thing to do.  Any sane person would do so.  

But we Cancer Mom's are sort of like holocaust survivors. We might have not been in the camps (our kids were) but we carry the scars with us.  Our kids have the tattoos from radiation but we had to be there with them. We were there, we were trying to keep them alive and keep them sane and keep them safe. 

I want to flee and pretend it did  not happen.  I want to flee and pretend it won't return.  I want to think it is done.  But we all know it is never done.  No matter how far out, no matter what the research says... it is never over.   

Someone shared this little picture.  Sort of a reminder that it is never over. So I guess I have no choice but carry on. Work on a book. Do something great to fill the hole cancer dug in our lives.  We are strong and determined and nothing..... will keep us from doing everything we can with our lives.  Small steps.  Each more normal than the last. 

Hyper Pin Point Focus....

We get so focused...So focused on the goal that sometimes we don't see the big picture. 

 The big picture is there all the time but being in cancer world deletes your ability to see that picture.  You have one set of goals.  It starts out big... Cure Cancer. Cure and defeat Leukemia, AML or ALL or , Brain Tumor, Sarcoma...Wilms, the list is endless.  Cure, Cure, Cure.

Only later do we face the reality of what the cure means.  80% of the time it means life.  Survivorship, a future, a way to return to normal.  I told someone a long time ago I was not giving a dime to anyone that wanted to cure Cancer, only to those that wanted to figure out how it happens and make it stop. 

I sit here this week and look at the fall out from being in Cancer World twice and now it is damage control.  Sort of like the bombs dropped on Nagasaki and Hiroshima.  They stopped World War II but then what.  At what cost to those sitting around innocently having a morning cup of tea?

Mary-Elizabeth and all of our children have been subjected to a nuclear blast. Many cells and organs and future cells and eggs took one for the cause.  Her thyroid died, her eggs are (ready to be served on) toast, she is guaranteed cataracts and skin cancer and a whole list of possible other cancers.  

Don't get me wrong, I would make every single decision the same except I would have pushed for egg harvesting when she was about 17 or 18.  I didn't think about it then and now it is too late. 

We are so singularly focused on a date, a place, an event, a result.  Please let my child's body be ready for more Chemo. Please let my child's body be able to 4 days of twice a day total body radiation and high dose chemo so that she will be completely helpless against any sort of bug!  Please let them do some more scans or run a scope down into her stomach and take a biopsy.  Please let them operate and remove huge parts of her bones and replace them with some foreign metal in a new experimental surgery.  Please, we will take anything, just let her live...

If we ever stood back and took a look at what was really happening and thought about it, I don't know what would be the result.   I guess our brains know we can't handle too much.  So we are able to chop up the ongoing crisis in little bits and pieces to be handled one step at a time.  Today we do the biopsy or the scan or the chemo... Tomorrow we evaluate and keep going until we hit CURE.  We will take the dead thyroid, the deeply upset kidneys, the brain die-off the massive infection that will not heal, the relapse, the 14 days in ICU, the emotional storm of anxiety and depression and all the rest.    

We are focused on a Cure.  Nothing more, nothing less. 

    

Lulu

Lulu s DOING good...Ventilator DOWN To 30 percent lungs still have goo but she is doing majority of work. ..her pancreas is enlarged and her number is high so checking her for pancreantitis fever is down and so is blood pressure...if she continues to do good they are talking about taking her off ventilator next week....our prayers are heard and being answered...thank you... thank you...thank you all for your love and support.our girl is amazing and strong and healing...from the icu ‪#‎lulustrong‬


Thus reports her mom..... Long road to recover

from this blip on the way to a transplant. 

I will continue to follow this family and continue to update. Seems things are good for now.  While it seems to be "if it's not one thing it is another" but then anyone that knows anyone in Cancer World knows that is the case. 

The think about Childhood Cancer is the resilience of the children and their bodies.  They have "new" parts and over the years the doctors have learned they push much harder and have good success. 

I remember when Meb had a conversation with a Breast Cancer survivor.  The woman asked Meb about her port.  She shared with Meb that she had had 6 rounds of chemo therapy.   My lovely daughter commiserated with her and then when she spoke to me said:  "Mom, I didn't tell her how many I had had."  Even at age 13, she knew the difference. 

So here is to Lulu and her struggle.  

Bit More Progress.... Information from Natalie, who is exhausted and headed home for some much deserved and needed sleep.

Lulu is moving all limbs can answer yes.or no questions and was able to tell us she she is in pain working on sedatives and getting her comfortable no change in lungs ventilator down to 50 percent so doctor said going in right direction has blood clot in right arm started blood thinner. .low fever....dad is staying tonight to give me a break. ..get to see my other girls and my bed...Lulu strong from the icu.


No matter how bad it is at the hospital, going home to your own bed is the best medicine...

A bit of information.... heavy duty waiting....

Quick update on Lulu...I know there hasn't been much last couple days and that is because there isn't much to update. She is still on ventilator. Lungs are slowly releasing fluid. She now has a blood clot in her right arm so on blood thinners. Her blood pressure is kind of all over. She is put back under sedation. She does respond with movement when not sedated but still not answering yes and no questions. Many tests being done next couple days. Keep the prayers coming!!! I believe God has received them and has been answering in small ways. We will take it!! 


News from a friend of Lulu's... 

Side Affects.

Leukemia = treatment

Treatment= chemo therapy and radiation

Chemo and Radiation= Low counts, compromised immune system, loss of executive functioning, loss of hair, shortening of tendons, issues with weight gain, problems in the sun, mood swings due to steroids, anxiety, higher risk of "secondary cancers........

End of Treatment=relief, more anxiety, getting back to life as it once was, sort of.  Graduation for Junior High, Graduation from Holy Names with honors, Admission into 9 of 11 colleges, freshman year, first summer, return to college, RELAPSE.

Relapse 57 months post treatment = Life flight from Spokane to Seattle, deeply colored chemo to achieve remission, 36 hours home then 25 days back in the hospital, Remission

Remission= one round of intensification, 6 days of methotrexate and a couple of other things, a couple of weeks off, etoposide and some other stuff over 5 days,

Remission and intensification= international bone marrow search.

No Match= Double Cord Blood search

Double Cord blood transplant=longer stay in the hospital, successful engraftment, baby cells that have a lot to learn, long slow road back to health, 100 or so blood transfusions of some sort, low platelets for a long long time, lots of steroids, high blood sugar and need for insulin, weird purple hands, weird blood pressure, weird hormone issues, loss of fertility, BK virus (bladder/kidney), need for lots of pain meds....... eventual release.

Release= almost multiple, daily appointments for the first 100 days.  Lots of med checks, lots of scans, blood draws, lots of changes, lots of "ummmmm, everyone is different. GVH flairs

GVH= ickie oily oral meds, lots more steroids

Steroids= so many things I could not even guess.  Some very obvious, some very deep dark and scary.

Steroids and other stuff=blood clots.

Blood clots= more time with Chef Walter's food and lovenox.

Lovenox=(was supposed to be in pill form in 2005) two shots a day and blood draws a couple of times a week, then only every other week or so and huge, huge bruises and nose bleeds and lots of bleeding stuff.

FINAL SIDE AFFECT = RETURN TO A NORMAL LIFE.  We hope anyway. 

She has escaped but I did not....

She is out, She is out, She is out.  She has escaped the horror that now surrounds each and every blood draw. Her bruises are solid PURPLE. She is giving herself two more shots a day.  Each shot = a bruise.  It is nuts.  I look at her bruises, and scars and the stretch marks from the prednisone.  It makes me so sad.

With each admission and each time the process becomes more complicated and hurtful and frustrating: she cries, she is sad and then we move on.   Today she needed to get out today so she could go to the Ruby Project class and do some printing.  Photography is a great thing for her right now. Great Distraction.

I, on the other hand had challenges and a couple fun things today.

 Did not sleep in;
Did arrive just as the donut lady was serving to the  SCCA floor;
Had coffee with Amber and Karen;
Missed rounds;
Met some new people with a 9 month old ALL baby, let broken heart heal;
Tried to take a nap but then quicker then you could say "Discharge"they were pushing us out the door; 
Dropped Mary-E at the house and headed for my root canal appointment;
Found a great parking place;
Was on time and there was very little paper-work;
Met with the nice doctor;
Could not convince her that a hand full of pain meds and time would make the excrusiating pain in my tooth go away;

OMG. 

Never go to the Root Canal lady without a fully charged I-Pod.  They drill and dig and then start again. Then they dig some more.  I never thought it would end. 

And when it did, it was a lie.  I am expected back for one, maybe two more chances for drilling and digging and ......

I will have a book loaded on my I-Phone, it will be charged and I will have really fabulous earphones. 

My ordeal will be over in a few weeks.  She is not so lucky.  Headphones fix my situation.  I wish  I could find the magic ones that would fix her.

  

We're Back in the Hospital Again, We're Back in the Hospital Again....

Should be sung to an old country western tune.

But I had such a great time in LA with my family and with the weather and with the rental car.  It was grand.  Dinosaurs, Saber Tooth Cats, (no tigers, they are different), Van Gough, Nixon, Melrose, Compton, Norma's Restaurant, Kindle Donuts, Nigerian Delegation, Quiet Spoken United Pilot that did not understand how we could let the Japanese have the first 787 and not an American Airline, Sabine and Stephan from Munich.  It was wonderful.

Wonderful ends and reality begins.

Above the cute toes, a swollen leg.  Clots in legs cause swelling.

She was complaining when I came home.  I looked, I assessed, we went to dinner.  Then we called Dr. Fassett and then we went to the hospital and then she had an ultrasound and then she was admitted and then.....blood drawn, lovanox (yet two more shots a day).

Lots of blood draws, blood clotting  before it can be tested....

Cancer is creative.  I have to adjust my thinking.  I have a six month old baby.  As baby's grow, they are unpredictable.  They grow and change and just as you have it all figured out, they change again.  I am 6 months through this process.  I should not be surprised when there are new developments.

Okay, I can't fix this situation.  So I shall concentrate my efforts on identifying the warbler I saw by Nixon's birthplace.