Monday, June 23, 2014

Ups and hopefully no downs.

Childhood cancer really is rare in the scope of the 300 million or more of us in the U.S.  Some tiny bit of the population.  Sort of like Medulary  Thyroid Cancer.  But once if shows up in your life all of a sudden everyone has it.   You make connections with those that have it, you run into people that have it. It consumes a part of your life.  

Today Meb had an appointment with our lovely Seattle Children's Bone Marrow Doctor.  She is moving to Portland Maine and this was the last time we would be seeing her. By Dr. Pollard.  It was a great appointment, the taper is working, most days. Meb is getting allergies because she is weaning off prednisone.  She has some spots but they have been around less than 24 hours and we are hoping they will subside.

Her kidneys are unhappy but then we have been down that road again.  Hopefully she will not continue to loose kidney function.  Life is good.  

So while I am sitting there I spot a parent that was on and off the floor during Meb's transplant. He is stressed. He is freaked out. Then I saw his son.  He is older than Meb and he is bald again.  Crap... he is back in treatment.  I didn't ask.  There is no way this is a good thing. 

I just can't get away from it.  It haunts me. It terrifies me. It makes me crazy.  It's a slap in the face.  The ability to believe this will ever ever be over eludes me.  By ignoring what goes on around me I can sometimes forget.  But not in a convincing way.  I am just a bundle of freaked out Mom...  

But on the other hand Lulu is responding.  Really responding.  Her story might turn around.   Sounds like her body is fighting. 

Watch out here she comes....Lullu came back from MRI they could not do it because she wouldn't stay still!!!! She opened her eyes and looked at me. She is responding to me...they had me ask her yes or no questions but no response but when I tried to take my hand away so they could get in there she clamped down on my hand and still holding on to mommy...they are ordering ultra sound on right arm where pic line is because it is huge they are afraid of blood clot....but I'm so excited about her moving I'm giddy!! And She Knows My voice...Will Update Later But Celebrate And Dance Because Lulu is Responding And SHE Hear
s us!!!! And we have 11.7 hemo 5k platelets 6100 white blood cells and a 3200 anc.....she is doing it!!!! Still on 70 percent ventilator

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