Wow….almost at 1000 days!!! I just wanted to write another long overdue post to let everyone know that we are still doing well and enjoying the wonderful and blessed holiday season. Today Charlotte had her yearly eye appointment to check for eye related graft vs. host and everything looks great. He doesn’t recommend that CJ continue to see him any further unless Dr Diamond thinks it needs to be done. So that might be one less appointment to worry about. We see Dr Diamond again on December 26th for Charlotte’s 6 month labs and also an EKG/Echo.
We had a wonderful Thanksgiving day at Lyle and Jenny’s place last week. Molly and CJ were so happy to play with Julia, Meredith and Sydney. They were tired and completely worn out by the end of the night. Jenny took this nice picture of us, probably one of the few that might have captured all of our smiles and open eyes. We are so thankful for all of the blessings in our life and we just want to again say thank you to our family, friends, Erin, AFCH staff, and every one of Charlotte’s Angels who have prayed for and supported us in one way or another.
In the spirit of the holidays, if you are in the mood for a real tear jerker, I have a Christmas movie suggestion for you. In late 2011, “The Heart of Christmas” was released. It’s now available on DVD, Netflix and it’s even on YouTube. It’s the true story about the family of Dax Locke, a little boy who lost his battle to AML-M7 in late December 2009-the year before Charlotte was diagnosed with the same disease, and how the community rallied around the him and his family to bring the Christmas spirit to his neighborhood before he passed away. Some of you may be hearing the Matthew West song of the same name playing on the Christmas music channels, or another one he did called “One Last Christmas”. Both of the songs were written about Dax and his family and, once you watch the movie, will likely make you think twice about being thankful when you hear them. We knew about the movie shortly after it came out but were unable to bring ourselves to watch it in 2011. I talked with Dax’s mother a few times over email and she is such an inspiration to us and anyone fighting this terrible disease. Amy and I watched “The Heart of Christmas” last year and are very glad that we did, though it wasn’t an unemotional time for us. It is a very touching and heartwarming story, and really brings home the true meaning of Christmas. We hope you all have a safe and happy holiday season.
As I get more and more lazy, another month has passed and here I leave you, without any updates! We have had another fun-filled month since I have last filled you guys in. With all of your help, we raised over $1000 for the Wisconsin Make-A-Wish Foundation Walk & Run in Madison in September. It was a terrific day and we are so thankful for everyone who donated and spent time walking (or running) with us.
The following weekend, Charlotte was an honorary team captain for a kickball tournament fundraiser in Milwaukee. The 7 kickball teams raised over $30,000 for CureSearch funding pediatric cancer research. We had a wonderful time hanging out in the dugout with her team and CJ was able to participate in the ceremonial first kick before each game! We are very thankful for the opportunity to show our support to dozens of players whom we have never met before. It was a late night, but Charlotte’s team made the finals! Team Charlotte did fall to the defending champion in the last game, but raised several hundred more dollars than the champ so we are very proud and happy with how well they did!
A couple of weeks ago, Charlotte came home from school on Friday and had been quite sad and had low grade fevers, and said her joints were hurting. It was a very rough night for Amy and me as it brought back too many painful memories. But we tried to remind ourselves that she is a normal little girl in school who will get sick and we were hopeful that she was just catching strep or another one of the ailments that were running through her class. A visit to Urgent Care the following day showed she had Croup. She was fine in another two days and has been happy and acting normal ever since. (Although the strep is STILL hanging out in her classroom…ugh)!
Charlotte and Molly in their Halloween costumes
We had a nice time with the girls picking out pumpkins in the pumpkin patch and enjoyed some of the fall activities. They have been playing outside less and less as the weather gets colder, but still try to get outside whenever they can! Fortunately trick-or-treating was beautiful yesterday and the girls had a wonderful time!
I wanted to share a few videos that I found on youtube. These are all done by Children’s Hospitals around the country. Watching them made me cry, remembering our time at AFCH and thinking of all of the nurses and doctors there that made our stay memorable and took such good care of Charlotte. Amy and I both said we could see the staff at AFCH doing the same type of thing!
Thank you for keeping Charlotte in your prayers. Please keep Austin and Kyle (two other leukemia fighters) in your prayers too.
CJ holding up her immunization chart with all of the shots now crossed off!!!
Last night we celebrated another small milestone. Charlotte is now done with her childhood immunization shots (again). The chemo conditioning she went through in preparation for the bone marrow transplant often wipes out any immunizations that the patient has had and Charlotte was no different. She had tests done after her transplant to determine if she was still protected from MMR, Chicken Pox, etc and she wasn’t. So she had a schedule of another 16 immunization shots drew up over the next two and a half years and last night were her last!!! It’s another small milestone, but we will take it!
We wanted to send out a reminder to consider donating to the Wisconsin Make-A-Wish by going to Charlotte’s team page. Every little bit helps another deserving child receive the wish of a lifetime.
In some ways it seems like only yesterday and in other ways it feels like a lifetime ago.
We wanted to show you a picture of Charlotte with her “Hero Beads” that she received during her treatment. Each one of these beads represents a medical procedure, test, or other significant step in her journey. They include Cancer diagnosis, blood draws, X-rays, surgeries, hospital admissions, hair loss, CT scans, sedation, EKG, etc…
Charlotte’s favorite bead is the rainbow colored spikey ball in the center of her name beads. It represents Bone Marrow Transplant. It’s one of our favorites as well!
We had to include a picture of Molly in here. She is now about the same age Charlotte was when she was going through transplant, earning many of these beads. We can’t believe how little Charlotte was during all of this.
We are so proud of our little girl. And we are so thankful for the help and care we received along the way. We thank God each day for our friends and families, the wonderful nurses and doctors at Dean, St Mary’s and AFCH and, of course, for Erin; for we know He had a personal hand in bringing her to us.
Charlotte, all ready to go!
We celebrated another huge milestone today! Charlotte started her first day of 5K! It was a very memorable day for all parents I am sure, but Amy and
Even Molly was able to give CJ a good luck hug!
I are able to cherish today like few other parents can. She was so excited to go today with her new lunch box and shoes! Amy, Molly and I walked her into the gym and she happily took her place and waited patiently for school to start. The only tears that were shed were from Amy and me…
September is National Childhood Cancer Awareness Month. This year, there will be 11,500 families that have a child who will be diagnosed with cancer. Please consider joining our team or making a donation to the Wisconsin Make-A-Wish Foundation by visiting Charlotte’s Angels team page. If you want to join our team and would like the materials (shirt, packet, etc) before the day of the event, you will have to sign up by September 6th.
I think she likes it.
And just like that it has been four weeks since I’ve last posted! The summer seems to be flying by. It’s been another busy month at our household. Charlotte and Molly had two weeks of swim lessons again and they were more excited than last year. They both had a great time and are getting noticeably better and more comfortable in the water. We are excited that they aren’t fighting us anymore and are already looking forward to the next lessons.
Grandma Elske is recovering nicely from hip surgery and is looking forward to hopefully watching the girls again next month. Now Grandpa Elske will be going in for a knee replacement at the end of August, so it is never a dull day here! Charlotte and Molly are still really enjoying Grandma and Grandpa Wags watching them a few days a week and Broadway is as happy as the girls are!
We had a small family party at our house last Sunday and had a very special guest. Erin was in Minnesota over the weekend for her brother’s wedding and she decided she wanted to come see us, meet more of the family and see what Wisconsin living was all about! We loved having her around for the day and the girls were thrilled with seeing her again so soon. Amy and the grandparents worked hard to give Erin a true Wisconsin party, complete with WI beer brats, German potato salad, corn on the cob, local cheeses, and schaum torte (and dirt cake for the kids) for dessert.
We will be participating in the Make-A-Wish walk again this year on September 22nd. Please visit our team site to make a donation or join our team!
It has been a busy month for the Elske clan. Charlotte and Molly have been loving the warm and sunny weather and have been spending as much time outdoors as they can. Both of them are still enjoying playing together and are getting along so well.
I was able to spend a week in Canada in June on my fishing trip and we all had a swell time. During that week, Grandma Wagenknecht took a spill at her house and tore a few tendons in her ankle. She will be spending another month in a boot but the Drs think she should heal well on her own. Grandpa Elske came back from the trip and had his gall bladder removed since it was giving him trouble for the last few months. He is about fully healed and is doing well. Then on July 1st, Grandma Elske had surgery to have her hip replaced since it has been very painful for several months. She is now out of the hospital and is doing well but she has a long road ahead of her with rehab and exercising it. Grandma and Grandpa Wagenknecht have been stepping in for Gma Elske and watching the girls while Amy and I are working. Charlotte and Molly love having them around and are enjoying the quality time they are now getting.
Charlotte started summer school last week, and she loves it. She gets to take her lunch with her this time and she is doing so well with that.
This past Thursday, Charlotte had her first clinic appointment since early March. Dr Diamond was very pleased with how good she was looking and she continues to grow as she should. We received some information about the chemo regimens she endured and the side effects associated with those. We now have a roadmap for watching out for those side effects over the rest of her lifetime. Her CBC numbers were wonderful: 5.6 WBC, 12.5 Hemoglobin, and 233k platelets. Dr Diamond wants to see her again in another 6 months.
The girls and I just got back from Chicago tonight. We spent another weekend down there visiting with Erin, Charlotte’s bone marrow donor. She was in Chicago for the weekend from Philadelphia so we couldn’t go without seeing her!! We had a wonderful night Saturday night and spent most of the day together today until we needed to get our tired girls back into the van so they could rest on the way home. Erin is such a blessing to all of us. Not only do Amy and I think the world of her for what she did for Charlotte, but both of the girls absolutely adore her. Yeah, I think we adore her too.