Charlotte's Journey

I had written those other 2 posts (God Winks and getting Annemarie'd) last week while inpatient but I started and stopped them so often because of Charlotte's needs and my own exhaustion that I never got to proof and publish them. So I apologoze for the all of a sudden 3 posts published back to back tonight. But I really do try to be authentic and capture all of Charlotte's moments...I like and need to visualize her grown up and reading all of this one day when we feel she is ready. Maybe she will see and inspire herself all over again one day. Maybe Brian and I will make her proud. Maybe this care page turned journel will honor her and all of those who have rode along praying right beside her. She will read-see-feel the love we have all poured over her this year when the time is right one day. So I like to leave no detail out and no stone unturned in revealing her journey here in this space we've created. Here with you all. Number one, we are HOME. Came home Friday e...

(Written 4/26-27 I'm so behind publishing!) Isn't humor sometimes the best medicine! It's hard to find when you are tired and stressed and worried. But man when we are able to truly laugh, it feels like a huge breeze of fresh air and sunshine washing over us. Charlotte has given us this unbeknownst to her this week. Although all side effects are are expected (such as high fevers, histamine release, nerve pain managed by morphine, low BP, higher heart rate, urine retention, swelling, capillary leaking), one of the more noticeable ones has been Charlotte's mood. The medication she's on makes kids super moody and irritable. It's a balancing act trying to parent her to use nice words and talk kindly while also walking on egg shells because she can hardly control her mood swings. So, Charlotte doesn't understand that her middle name, Annmarie, is part of her name. She thinks it's a term you use when you are being cross or stern with someone.😆 Maybe I'v...

When Charlotte was about 1 years old, we started to notice her becoming attached to a little Minnie Mouse blankie given to her by her grandparents, Nana Schuey and Poppy (Neal). It's one of those small hand held ones just little bigger then a wash cloth with Minnie's head on it. She carried it around and would want to snuggle it when she slept. After watching her grow attached over that year,  I thought "hmmm. If we ever lose this Minnie lovie, she's going to have a tough time. I should find a second one just in case!" Schuey couldn't remember where she found it and she lives in Arizona so it could have been anywhere. After checking all the obvious places I could buy one, I decided to periodically check eBay. One day, there was an identical Minnie Mouse hand held blankie being sold on eBay. It was almost brand new and I couldn't believe it. So, I bought it and they delivered it. I washed it and tried to slip it in occasionally but Charlotte knew it wasn...

Sometimes no news is good news and sometimes no news means I'm a tired Momma. It's been a long week, long weekend, and long day. I'm too tired to write much but wanted to update to all of you incredible people caring about our girl. The good news is we are here back in 5200 and have begun the "big guns" Immunotherapy today. In round 2, she is getting high dose IL2 in which she got in low doses last week out patient in her little fanny pack, in addition to the Unituxin infusion which she received back in round 1. Supposedly, this is a tough round on these kids. We had an NG tube placed in her nose to start the morning off, which is no way to begin your day or stay but it needed to happen in anticipation of super high fevers in which she will be feeling so lousy most kids stop eating. The NG tube allows them to feed her formula slowly to help sustain her and help her tolerate this treatment a little better. Our girl was not happy about this but it was explained to h...

Well I felt like I held my breath all day yesterday waiting and hoping Cannon's family would get quick and good results and THEY DID! The worrisome spot that showed up on his maintenance scan a few weeks ago was rescanned at a different hospital in a more in depth way and it is not cancer! He is clear! Even his limp in the same leg that had the questionable spot is due to an orthopedic issue that they can address! Our Prayers have been heard and answered! They can go on their vacation they planned this summer and he can start Kindergarten in the fall! He can go on living his life enjoying childhood instead of back into the hospital world. I may hardly know these people but their story and little Cannon has captured me...I suppose similarly to some of you who have embraced our family and our Charlotte all this time. I know what it feels like waiting and praying and receiving this kind of news from afar. Thank you all so much for praying for Cannon. Meanwhile your girl, Charlotte, ...

First of all, Charlotte continues to do well with this IL2 infusion. She has less pep in her step today while experiencing a low grade fever and some belly pain, but so far it's all expected. The Ronald MacDonald House is truly full of angels walking around as people. So we need big prayers today. We have learned so many lessons this year while on this journey to heal Charlotte. Although I think our goal  is to heal Charlotte, the journey itself has evolved from the goals mission of curing our daughter of cancer to include some life changing lessons. The most important being getting to know God a little bit better. I know this had been a huge development for myself as I have grown light years in my own faith right in front of your eyes as you've followed Charlotte's story. But a piece of this new relationship and new knowledge of God and how he likes to work has let me into an important insight that so many of you probably already knew but I only recently have come to und...

Looking back to last Easter when Charlotte was fighting for her life right at the start of this journey, just days out of the PICU and finishing her first round of chemo, this Easter was beyond special for us. We were home all together. We got to go to church together and celebrate Jesus. His life and death as evidence of Gods love for us all while holding our Charlotte, who in turn, shines God's love for us. It was a very emotional weekend for Brian and I. But we played and enjoyed the long weekend with our 3 little ones all together. It was truly chicken soup to our soul. And it was a perfect moment in time enabling us to pause time and watch Charlotte  run and play and laugh and be. Today, the next "adventure" begins. Charlotte begins a new medication today at the start of round 2 immunotherapy. She will be able to do this part of immunotherapy out patient but needs to be close to the hospital in case of severe reaction so we will be staying at The Ronald MacDonald H...

I had a moment a few days ago among my spring cleaning organizing madness. The ceremonial trip up to the attic to store away clothes from the previous season that the kids have outgrown as well as to retrieve something of Taylor's or cousin Allison's that Charlotte may have grown into turned into an emotional moment for me, coming out of left field. I was busy "nesting" as Brian tells me. I do this every season in some shape or form but this past year has been such a difficult one that I don't think I really was able to start and complete many tasks like I usually would. So this time, I had the time to do a few fun projects and also properly see what clothes we had and what we needed for each of our 3 kids, who at their age seem to need almost a new wardrobe every season since they grow so fast (thank god for hand me downs from family and friends!) But this year, I had a sharp memory flash back at me, right into my very bones. I recalled this time last year. I rem...