I can't believe it's been a little over 2 months since I last caught everyone up to date on all things Madi. I still hold to that old adage "no news, is good news"; so, things have been going really well lately. This seemed like a good time to get some information out, though.
Our summer flew by and moved right into school fairly smoothly. Madi started her First grade year on Aug. 13th and then missed the entire day on the 14th due to a scheduled
LP,
vincristine push,
IVIG therapy and regular labs. A long day for both of us, but I think it actually helped to have a day with Mommy to ease the transition into full time school.
There have been a few bumps along our little road, but we are working to overcome those. Madi has a wonderful teacher this year who is working with us to keep things as 'normal' as possible. Most kids at this point walk their little selves right up to the bus, find a seat to sit in, head to school and then head to their classroom as soon as the bus driver lets them off. Our 'normal' could go that way. Or, our 'normal' could go like this: walk down to the bus stop, see bus coming, panic, turn around and hold on to Mom for dear life while crying hysterically and refuse to get on the bus. Mom decides it's not worth the fight and decides to take Madi to school. We get to the drop off line at school and Madi refuses to get out of the vehicle, so Mom drives around to park and walk her in to the front office. Park the car and have to physically remove Madi from the van (of course she is in the back seat), carry her screaming into the building, head down the hall to her classroom where her teacher kindly pries her from my body and holds her until I get out of the First grade hall. Separation anxiety at its best.
That scenario is extreme, but it has happened a few times. (Mostly in the first several weeks.) There's no rhyme or reason to when this will happen, so I have a tendency to hold my breath until she puts her foot on that first step of the bus.
We've done several things to help make her feel more comfortable leaving me during the day: 1. She wears one of my rings on her bracelet while she is away; 2. She gets hugs and kisses before getting on the bus; and 3. If she gives me any trouble at the bus stop she has to come home and spend the evening in her room. I know the last sounds a bit harsh, but it has made the biggest difference in our mornings. It also allows her to make a choice instead of feeling completely out of control of the situation.
Another thing that has been a huge help is seeing a pediatric psychologist the group
Friends of Kids with Cancer set us up with.
Dr. Lingg has been wonderful! She not only works with Madi through play, but she takes time to talk with me about concerns and gives me pointers on how to navigate this time in Madi's journey. She has even worked with our older two to help them better understand what Madi is dealing with, and also give them an outlet for their frustrations. A win/win for our family.
So. Enough with the problems - on to the fun stuff!
Madi is doing great.
Medically, she is now on a monthly schedule instead of a weekly schedule with going to the
Pratt Center. While we absolutely love all the medical staff there, this is another milestone in Madi's journey to celebrate. Her numbers have also been excellent anytime labs are preformed. Good labs free Mom and Dad up from worry of needed transfusions and extra trips in to the center.
Physically, Madi is pretty much back to her old self. She still has to stretch the back of her legs, but they aren't nearly as tight as before the summer started. Spending as much time as possible at the pool and playing outside with friends have been great physical therapy. Plus, she really pushes herself to keep up with everyone else when playing with a group. She is actually starting to gain weight and grow again. It's nice to see her leg muscles filling out and having to put a few clothes away that are finally too small to wear. Although, not much is put away for long, since little sis is wearing the same size in most things.
Other fun stuff....
We've been made aware of a much bigger world than we were a part of before Madi's diagnosis. This has happened on so many levels, it's hard to articulate all areas. One area is that of non-profits. Kevin decided to partake in several 5K's this past spring. He was able to raise about $1500, thanks to the generosity of our friends and family. And our family was able to be part of the
St. Baldrick's fundraiser this past spring. Both of which were amazing experiences for us. Our most recent fundraiser experience was
Art from the Heart to benefit
Friends of Kids with Cancer. I'm not sure how many works of art were included in the silent auction, but it was so much fun for the whole family. All the artists were kids who are currently undergoing treatment or are cancer survivors. Madi even had a work of art in the auction.
Yes, we bid on it. No, we did not get it. Someone out bid us at the last minute. Next year.
There were a couple of activities for the artists and siblings too. Madi, being an artist, got to blow a glass ornament.
There was also wax hand making, provided by
My Handyworks.
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| Gretchen with another sibling friend |
Now, I don't expect everyone to suddenly run out and give huge sums of money to cancer research - even though that would be a great place to put your money. However, I would urge everyone to find a group or organization to give to - even if it is just your time. As we have discovered over the past year, a little can mean so much!
