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Anderson’s Story

"Heal me, O LORD, and I will be healed; save me and I will be saved, for you are the one I praise." Jeremiah 17:14 

Anderson Mark Butzine

07/09/2005 - 07/31/2011

Each day that we were blessed to have Anderson with us, we prayed for his complete healing, "One Miracle at a Time." God answered those prayers when He took Anderson home to heaven, the perfect miracle.

 

 



Prior to February of 2006, Anderson was in great health. Born on July 9, 2005, Anderson weighed 8 lbs. 4 oz. and was 20 inches long. At his six month check up he was just under 20 pounds and 27 inches long, and developmentally on track in every way.

After a brief cold, Anderson developed symptoms consistent with a stomach virus with signs of something possibly more serious. He was hospitalized on February 25th for observation and testing.

On February 27, 2006, after a night filled with vomiting and distress, Anderson had a seizure and stopped breathing. He was resuscitated and a Code Blue was issued. A CT scan and MRI revealed a mass in the area of the brain stem and basilar artery. Anderson had emergency surgery to remove the tumor. The result was near-total resection. Our surgeon did an amazing job and, although the operation itself was life-threatening, Anderson made it through. The tumor's location prevented total resection and created several other health issues. Anderson's body is unable to process his cerebral spinal fluid, so a permanent shunt drains the fluid into his abdominal cavity. Nerve damage resulted in temporary right body paralysis and paralysis of Anderson's left vocal cord, palette, tongue, cheek, nose, eye and ear. The paralysis created a high risk of aspiration and Anderson was tube-fed for nearly a year.

Anderson received chemotherapy in an attempt to eradicate the tumor that wasn't resected. This proved unsuccessful. We proceeded with 33 conformal radiation treatments to Anderson's brain. August 15th was Anderson's first post-radiation MRI. We were told to hope for stability and no tumor growth. Before we began radiation, our doctor explained that Ependymoma is slow to respond to radiation and actual tumor reduction would be "remarkable." Well, remarkable is what we got, the MRI showed reduction in tumor! Because of this reduction, further resection of the remaining tumor may have been possible. After a lot of prayerful consideration, we decided to hold off on surgery and watch and wait. The MRI from August showed some areas that our neurosurgeon could not safely remove, and we did not want to take the risks involved with surgery knowing it may do more harm than good.

The next MRI in October clearly showed no growth and potential decrease in tumor. Once again, we opted to watch and wait.

On December 19, 2006, Anderson had his third post-radiation MRI. The results were nothing short of a miracle... MORE reduction in tumor! There was no question of change this time; there was a remarkable amount of reduction! Our team of doctors reviewed Anderson's MRI together at tumor board and we were later informed that there was "no evidence of disease" in Anderson's brain! Any enhancement in the images was thought to be scar tissue and Anderson was tumor free!

After his follow-up MRI on March 15, 2007, we were shocked to see two small areas of tumor in Anderson's spine. The MRI was the only indication that the disease had spread; Anderson remained symptom free. Our team of doctors and their colleagues agreed that the images showed tumor, so we proceeded with more treatment. Anderson underwent 27 radiation treatments to his spine. Our first post-radiation MRI on June 11th yielded good results and the spine has been stable since that time.

An MRI on October 22, 2007 revealed two new areas of tumor growth in Anderson's brain. Anderson began daily chemotherapy, but an MRI in December brought devastating results; significant progression of tumor. The day after Christmas, we went to Chicago in search of more options.

We began an experimental treatment with chemotherapy and anti-angiogenics. Starting in January of 2008, Anderson received the meds by IV every two weeks with MRI's every 8 weeks.  Although things appeared stable from scan to scan, a comprehensive review in May, 2009 showed significant increase of the tumor in the brain. After consulting with our team of doctors, we decided on surgery, followed by more radiation to the brain. 

Anderson's chemotherapy was halted in preparation for the operation. On June 16th, 2009, Anderson had neurosurgery to remove as much tumor as possible without causing long term damage. After a difficult recovery and two additional surgeries, Anderson received 30 radiation treatments to the brain. Chemotherapy resumed in October of 2009.

Significant tumor growth led to another surgery in May of 2010. Despite many new deficits and challenges, the initial surgery was a success. However, before Anderson had a chance to fully recover, the tumor began to grow again. Anderson has lost the ability to do many of the things he loves, but our God is loving and merciful and knows no limits. If it is His will, Anderson will be healed. God's blessings to each of you who have joined us on this journey, "One Miracle at a Time!"

Jon, Michelle, Ella and Anderson Butzine

updated 12/19/10

Latest Journal Update

Three years...

July 31st marked three years since Anderson went to our heavenly home. We miss him every single day, but the "milestones," his birthday and the day of his passing, are especially hard. Those are the days when I feel some anger. Not at God, but at Ependymoma. I'm mad that this disease still has no cure. I'm mad about what it took away from Anderson and that it took him from us. They're mixed emotions for sure. I am SO happy that Anderson is safe in his Savior's arms, but I really, really, really liked him in my arms. If I'm honest, I guess I'm jealous of those in heaven who get to be with Anderson!  I'm also mad that so many other moms and dads, brothers and sisters are having to say goodbye to their loved ones even as I type this. Always praying and hoping for a cure. 

Someone once pointed out that, rather than time without your loved one, you should consider each day as one day closer to being together again. Easy to say, very difficult to do.

This year I had the privilege to participate in Dave and Carole's Miracle Marathon for Children's Hospital of Wisconsin. I was asked to speak about Anderson on-air as part of this annual fundraiser. I felt quite a bit of anxiety before hand. I didn't want to talk about it and didn't want anyone to go with me; I felt better doing this on my own. It was an amazing blessing to share Anderson in such an important way. In just a few days time, more than 1.4 million dollars was raised. Even more so, those who participated raised awareness for the illnesses that so many children are facing, appreciation for the world class facility we have so close to home and recognition for the doctors, nurses and countless support staff that give so much to help others. 

The interview went well and Jesus calmed my nerves. Dave and Carole were so kind and loving. It was obvious that Anderson touched their hearts in the way he has touched so many. I received support from long-time friends at the hospital as well as complete strangers. It was a very rewarding experience and I am grateful to have been blessed with the opportunity. 
I apologize for not updating regularly. It's hard for me to write about life without Anderson, simply because this is Anderson's site, and I don't have any new Anderson updates to share. I know that it's okay to share stories of what our life is now, and I will try to do a better job of it.  We do have many Anderson moments that I could continue to share; reminders of our life with him, some big, some little. His favorite number, 4, sure shows up in a lot of unexpected places! We took a trip to Disney World in February where Jon and I participated in the Princess Half Marathon with my fantastic college friends Mollie and Tina. Jon's parents also joined us in Orlando for the trip. Jon, Ella, Grandpa and Grandma Dorn took a day off of Disney to visit the Harry Potter exhibit at Universal. On one of the rides, a camera took an automatic picture of Jon and Ella. They were given a ticket to view their photo... number 4444. :o)  Moments like that, unscripted and unexpected, are little gifts to make us smile and think of our stinkerbuns. 
I worried that it would be very difficult to help Immanuel learn about Anderson without being resentful that he didn't know him, but that hasn't been the case at all. If you ask Manny about his brother, he will tell you that he is in heaven with Jesus. Manny shares his brother's blonde hair as well as his stinkerbuns tendencies! As smart as Ella and Anderson were at this age, Manny has them both beat. He turned two on May 25th and his vocabulary far exceeds the average two-year-old. He has been participating in table prayers before meals for many months and is almost able to say the entire Lord's Prayer. He recently learned the ABC song and is often singing it at the top of his lungs while he's playing toys. Manny loves to read books and his most favorite person in the whole world is, of course, Ella. I am dreading the beginning of the school year. We've become quite accustomed to Ella being here with us, and neither Manny or I want that to change! Ella continues to be the world's best big sister. We are so proud of her and thankful for her many blessings. We've tried to give her more freedom during the summer than she gets during the school year, but she has kept up with Tae Kwon Do and participated in a Golf Camp as well. This past school year Ella participated in nearly every extra-curricular activity that was offered, earning a Gopher Award at school. She maintained straight A's again, which meant several family trips to the ice cream shop to celebrate!
Jon has been at JCI, Johnson Controls Incorporated, since January of 2013. Although the commute isn't ideal, the work/life balance is fantastic. I love seeing (and hearing) Immanuel's excitement when Jon gets home from work! Ella is also always happy to see him, but I don't think she'll be able to jump up into his arms much longer! (pretty sure she grew four inches this summer - all legs!) 
In an attempt to get out of the house a little more I became a consultant with Thirty-One. (www.mythirtyone.com/337777)  It's been a little more than a year since I began. I haven't been consistently putting in the time and effort to make it an official business; right now it's more of a side interest. I really like the products and the ability to interact with grown-ups, and there is a lot of potential to put more into it if that's the path I choose. Right now I don't want it to take away from my time with the kids, which it doesn't. We'll see where it goes!  I've also thought about looking for potential speaking engagements. I wasn't sure if speaking on the radio would be too emotional, but it was a great experience and I learned that I can share Anderson and keep it together!
I need to get to my Saturday morning chores before it becomes the afternoon! Before I go, I want to share something else that is super heartwarming. My cousin Anika has been sharing stories  on Facebook of her son Emmett (my little birthday buddy) and their neighbor Erling. Emmett is 3 and Erling is 89. The store of their special friendship went viral after a feature on their local news. I'm sure many of you have already seen it without knowing the connection, but I'm taking the opportunity to brag about my beautiful cousin and her family.
:o) 
http://www.kare11.com/story/news/local/land-of-10000-stories/2014/07/06/farmington-next-door-neighbo...

http://www.kare11.com/story/news/local/land-of-10000-stories/2014/07/11/friendship-between-wwii-vet-...



Love and blessings to each of you who have taken the time to check in on us!

Michelle






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Comments

3 Comments

Laura Campbell
By Laura Campbell and all at Our Savior's Lutheran in Spearfish, SD
Michelle, thank you so much for your update about your life now. Please know that our prayers continue for your family, and that Anderson will never be forgotten by those of us who knew of him.
Laura Polkus
By Laurie and Vince Polkus
We think of you often, especially when driving out to Ebert's at this time of year when we gathered in the lovely little church to celebrate your beautiful boy. Your updates always reminded us that every day is a gift not to be wasted. Thank you for all you do to help others in their struggles with this illness. It takes tremendous strength and love to do what you do. You are an amazing woman with an amazing family!
Roland and Genevieve Schultz
By Roland and Genevieve Schultz — last edited
Thanks so much for your up date. God bless your family and may He continue to be with you as He has in the past