Madelyn Jill: Oct 16: DUDE... Three More Months!

No news is good news!

Madelyn’s counts have re-stabilized and she has remained in that happy 750-1500 ANC-zone ever since her last steroid pulse. Phew. Those 10 weeks of low counts were very, very stressful.

We have ALL been busy with life for the last three weeks: finishing the renovation of our attic (complete with permanently installed disco ball), re-envisioning KP Studios and most importantly… adjusting to life as schedule and activity navigators for the Chief Executive Officers of Kuhnlein, Inc. Wow, soccer twice a week, dance, nutcracker rehearsals and, well, upon request from Sophia, more dance (that’s right 2 dance classes for our four year old prima ballerina). My feet are running as soon as the first CEO shuffles into our room in the morning saying “can I have some milk.”

But here’s the thing though: my heart is soaring these days. My two girls are rockin’ life.

Madelyn is in LOVE with her new school, Mt Erie Elementary. She loves everything about this new adventure. She is much like her Mama… always excited about the new experience. New place, new exploration, new facts to learn, new systems… in fact the other day she said to me: “Mama, we need to GO somewhere. Like, you know, stay in a hotel. We sometimes go places, but usually we are just here in Anacortes. I get bored with it always being the same.” Love it.

It is never a problem getting her to school. She wants to be there even during steroid week when she is crying and scared… when she doesn’t know why she is crying scared… when she is tired from no sleep the night before… when her belly hurts from 4 days of constipation… when she is in pain… she still wants to be at school. She loves learning how her new school works, meeting new people, recess (with a playground!) and is enjoying having real assignments, tasks, responsibilities and subjects (reading, math, science, music, library).

And Sophia! My, my she is just thriving. She is defining school for herself this year; she is spelling her name; she is un-abashedly letting her opinion be known and slowly releasing apprehensions; she swam the length of the pool with a noodle All By Herself and the glow on her face filled everyone around her with light; she is learning her power and wielding it; and she has discovered her own passion, dance. I am so proud of her and I can’t stop staring at her! I know I have only days and minutes left of her littleness.

We were at Seattle Children’s on Monday for the usual: counts, exam, meeting with Oncologist, chemo infusion and, the best part of the day, swimming lessons. We also spent the afternoon with MJs Leukemia Buddy Riley who is also 6 ½. During Riley’s infusions the girls did crafts, watched movies and were able to have lunch together in the cafeteria. The afternoon involved a lot of giggling and smiling despite the tubes, IVs, nurses and medicines. After Riley’s 4 hour blood transfusion we went out to dinner at Madelyn and Sophia’s favorite Seattle restaurant, Boom noodle. Finally as we were slowly making our way to the car to drive home to Anacortes, MJ, Phia and Riley were running around squealing and being chased by The Tickle Moster (aka Peter). Mid-sprint, with a huge grin plastered from one side of her beautiful bald head to the other, Riley yelled “Best Day Ever!” I said to her mom, “don’t you just want to broadcast to the world – look at her – look at my beautiful, fighting, giggling machine – she had cranial radiation, chemo infusions and a blood transfusion today. Look At Her! Riley is LIVING this moment.

Ok, one last thing. We had a long discussion with the Oncologist about… not sure I can write it… January 31^st… Off Treatment… End of Treatment… Last Chemo Day. January 31^st will be a new holiday! Party!? Celebration anyone? Hmmmm….

Madelyn will continue with her oral chemo that she takes every day until January 31^st. Her Seattle Children’s appointments will look like this:

Nov 5 – spinal tap and chemo infusion

Dec – 3 chemo infusion

Dec 31 – chemo infusion

Jan 28 – chemo infusion, spinal tap and bone marrow biopsy

Jan 31 – last day of all chemotherapies including steroids!!!! as long as the Jan 28^th bone marrow biopsy comes back negative for Leukemia

Two weeks after the bone marrow biopsy – her port-a-cath will be removed via surgery

She will continue with her neuropathy medication for two months and will continue with her antibiotic therapy for three-six months depending on how quickly her immune system rebounds.

Then… CBC and exam every four weeks for a year.

Wow, 2 ½ years later…. This is really happening…