Aug 17 - chemo hold again

Madelyn went in to Seattle Children's on Friday (Aug 10) last week.  Much to our surprise her counts went down again!

ANC 699

Still high enough to get her Vincristine infusion and to have her spinal tap, but low enough to make the doctor want to hold her oral chemotherapies.  

Ugh.  Stress.

It has been a hard week for Madelyn.  She has been in A LOT of pain and has had constipation due to the more frequent use of pain meds.  She has also been experiencing more nausea, than is usual for her, in the last 4-6 weeks (none during her chemo hold).  The doctor explained that often the farther into Long Term Maintenance kids are, the more side effects seem to effect them.  That also explains why we are seeing trouble again with neuropathy in her feet and legs.  She is having trouble with bad dreams during the dexamethazone - she says tigers and snakes are trying to get her.  She is spending about six-seven nights out of the month sleeping with me and Peter is sleeping in the messy Princess Palace.  Her lumbar puncture's are also causing her more difficulty lately.  She is very discombobulated, having more discomfort and more headaches immediately following, and for a couple of days after, the procedure.  

We will be at Island Hospital bright and early on Tuesday next week to get another CBC.   We are hoping for another REBOUND so she can start chemo again!  

five more months... five more months... 

five more months... five more months...

Struggling...

Sophia coloring while waiting for Madelyn to feel better in the after procedure room.  Daddy is her coloring assistant.  "I need red now Daddy!"  

Still struggling... but so hungry from not being able to eat all morning.

In the infusion room having fluids and very cold after her procedure.

watching a little TV

"Sophia?  Earth to Sophia?"  (Watching Dora. 'Nuf said).

Starting to feel better.  

Eating an apple while she gets her Vincristine infusion.  She can taste the medicine as it is going into her port-a-cath... and it tastes "gross."

Aug 8

Finally... I have been able to update our travel blog.  Check out this totally cute pic's of the girls in princesses dresses in a real princess castle :)

http://milk-to-go.blogspot.com/

Aug 7 REBOUND!!!

So Madelyn went in for another CBC at Island Hospital on Monday.  First appointment they had open, 8:30am... we couldn't get there fast enough.  MJ too.  

And hooray!  Her counts have fully re-bounded.  Thank goodness, phew and celebration.  

Hem 33.7    WBC 2.1    Plat 252    

and ANC 1145  !!!!!

She couldn't get to summer school fast enough today.  If it wasn't for Sophia going through a "I don't want to go to school" phase, MJ would have been at the door of the San Juan Montessori at 8am going "open, open, open."

She restarted her 6MP chemo last night and will re-start the methotrexate following her spinal tap on Friday.  

The girls are super excited because we are going to visit my sister Jill's family this weekend in my home town of Port Angeles... Lucas and Beckett, my nephews, are just about as cool as teenagers in MJ and Phia's eyes...

Aug 3 Lock Down

I have been busy with lots of “me” stuff lately… Anacortes Arts Festival, a photography workshop in Colorado… and I have been beating myself up for not getting everything done that I need to or I want to.  Then I arrive back on the plane on Tuesday and get the bomb shell that Madelyn’s counts have tanked.  Her ANC is 288!  It hasn’t been this low since she was diagnosed and Delayed Intensification.  Everytime I start to get selfish there is something to remind me what my real priorities are for the next few years.

So Madelyn is in Lock Down.  Poor honey.  She understands why she can’t go out and she is ok with it… but she still wants to go to summer school, out to dinner, the playground.  Be a normal kid. 

We explain it to her like this:  Your white blood cells are your soldiers.  They fight against infection and germs.  You are supposed to have like 2,500 soldiers, but you only have 288 which is not enough fighting power.  So if you get sick you won’t be able to get better.

Madelyn’s doctors have stopped all her chemo until her counts recover.  It could be A) her bone marrow is just worn out after two years of chemo every day.  Or B) it could be that her leukemia is back (worse case scenario). 

This is a no brainer multiple choice.  A is our answer. 

She goes back in for a CBC on Monday morning.  Then we will see if the six day rest from chemo has helped.  If she still hasn’t rebounded they will continue the hold until she does… She is feeling great and has lots of energy.  That is a good sign I think.  She needs lots of good vibes, energy and prayers that she does NOT GET SICK.  No fevers, no fevers, no fevers…