Mother's Day

 

My girls enjoying each other was my best gift
last Mother's Day.

One of the greatest things about becoming a mother is learning that unconditional love is possible.   We get to see a physical piece of our heart and soul living and breathing, and we get to hold it, and nurture it, and love it. There is no greater joy than seeing this soul smile and laugh, to know it is happy and growing.   We would do anything and everything to protect it…sacrifice anything and everything to protect it…and when we find that there are times and circumstances where we cannot, it is devastating.

Consolidation chemo for A.L.L. is 3 months of the most toxic doses of IV infused meds. The chemo must be administered inpatient so fluids can be given and various organs (liver, kidneys, bladder, heart, etc.) can be monitored. We started this phase Jan 23, 2012 (my 35th birthday). At all of our clinic appointments during January I was warned, "consolidation is very hard/tough/rough". Rough? Hard? Tough? What does that mean? I kept asking doctors and nurses over and over. The most detail I ever heard was that there are a lot of side effects that COULD happen & IF they did my baby would feel very sick. Ok, sick. Sick how? I kept thinking how we had already been through so much rough/tough/hard at diagnosis, so maybe it wouldn't seem so awful to me. It probably seems hard to people who had a more mainstream diagnosis and induction.  I have never been more wrong about anything in my life. They should have said this: we are going to pump toxic chemicals into your child until she almost dies, then we will allow her to recover for a couple weeks, just to be sure she isn't dead, and then we are going to do it again. And then again. I know that isn’t politically correct, or hopeful, but at least I could have tried to prepare myself for what we were going to experience.  Or maybe that just isn’t possible.

One of the drugs given to Phoenix, multiple times, caused her to have severe pancreatitis, a swollen liver, and a sinus thrombosis, which is a blood clot in the brain.  Last year at this time we were living at Riley dealing with these effects, along with mucositis (open sores) in her mouth, throat, and digestive tract.  The pancreatitis caused her severe abdominal pain, and the only treatment is to stop all eating and drinking, give morphine, and wait for the drug to clear the system.  The mucositis caused severe pain and terrible constant diarrhea, and the treatment plan for this is to give morphine, change diapers every 10 minutes, and wait for the blood counts to recover.  The blood clot led to seizures, which began as total involvement (full body convulsions) lasting for 30 seconds or so, and settled into a localized seizure in her right arm and hand, that lasted for days.  They treated the seizures with many different drugs, did MRI’s and EEG’s, and after a few days they stopped.  An epilepsy specialist determined that the clot may or may not have been the cause, because with her previous (too many to count) brain bleeds, any of those spots could have also been to blame.  The specialist also advised that the reason the seizures stopped probably had nothing to do with the drugs given; it was more likely that her brain resolved itself. And let's not forget that vomiting is continuous, every day, for the entire 3 months.

I was so scared, exhausted and beside myself.  But beside me, was MY mom.  I needed my mom more at the age of 35 than I did at 5, and she knew it even when I didn’t say it.  She was at the hospital with me much of the time, and helped pull me through it all, while I did what I could to pull Phoenix through it all.  I needed her emotionally and physically.  Just having her present made me feel calmer, better, stronger… like I could do it.  When I consciously recognize that she was there because I am her piece-of-heart-and-soul-living-and-breathing outside of her body… I am overcome with a feeling so big… a love and gratitude so powerful…it takes my breath away.  Words could never describe or express it.

 I love you, Mom.  Thank you.