We have had an enjoyable and quite busy summer so far! Charlotte finished up summer school, and now she and Molly are in swim lessons. They both love them and are learning a lot every day!
We were fortunate enough to attend a Brewer game with the Wisconsin Make-A-Wish chapter last month. We all had a swell time! I hope it’s the first of many games that we are able to attend.
We are excited to announce that Charlotte has been asked to be an Honored Hero for the Leukemia & Lymphoma Society’s Light the Night Walk. The walk takes place on Friday, September 19th at 6:30pm at the Warner Park Duck Pond in Madison. It is a fundraising walk to celebrate and commemorate lives touched by cancer.
For Charlotte and us having this walk in September is especially meaningful. Not only is September National Childhood Cancer Awareness Month, but it will also be 4 years since Charlotte’s leukemia diagnosis. We know that Charlotte benefited from research that organizations like LLS funds and we are thrilled to help raise crucial dollars to enable this research to touch more lives.
Please join us in honoring Charlotte by joining our team, Charlotte’s Angels. All you need to do is click on the link below. Can’t walk? Please consider making a donation in honor of Charlotte instead.
Saturday was Charlotte’s 6th birthday!!! The lucky girl had two birthday parties. One with her friends from school, and another at our house with family. Both she and Molly had a wonderful time and kept right on playing until bedtime.
On Sunday we delivered balloons to AFCH, 4th floor to hopefully bring a little smile to someone who is spending their Sunday there. It was awesome to see some of her favorite nurses again and they all couldn’t believe how big she has gotten-Molly too!
After that we went to Chuck-E-Cheese and had a swell time again! Lots of junk food. Lots of excitement. Lots of playing last weekend!!
Well, it’s been over two months since I’ve last posted and I really have no excuse other than we have been busy doing regular things like any other family would be doing.
Charlotte is still very much enjoying school and is looking forward to having her school friends come to her birthday party at the end of the month. She is getting better with her reading and math and we can see little improvements every week. We are happier with the fact that she still likes school and is eager to talk about the things she does every day with her friends.
In case you hadn’t heard via other means, Kim Schuetz was named Leukemia and Lymphoma Society’s Woman of the year. She and her dedicated team of friends helped raise over $28,000 for the fight against blood cancers!
I wanted to let you know about another fundraiser that is close to our hearts. A cousin of mine contacted us about honoring Charlotte for her own St Baldrick’s fundraiser. St Baldrick’s is another wonderful organization dedicated to funding research to end childhood cancers and last year raised over 34 million dollars, 80% of which went directly to research. We are proud to know that such organizations exist and that people like Krysta are willing to shave their heads to raise money for a good cause.
Please consider making a donation to Krysta’s campaign by clicking here. We are forever grateful for all of those that have donated to this and other similar causes in the past.
She’s just too cute!!
Three years ago today, Charlotte, and our family, received the best gift of all-A bag of stem cells donated by a complete stranger 900 miles away. A bone marrow transplant was a crucial part of Charlotte’s treatment, and gave her a real shot at growing up that she may not have otherwise had. We still feel that God played a huge role in this, as the first two people that were contacted refused to donate stem cells via bone marrow. This delayed Charlotte’s transplant and added another round of toxic chemotherapy to hold the leukemia off until more donors could be contacted and tested. Fortunately, the third donor on the list was Erin. She stepped up without question and saved our daughter’s life. We still have a long way to go in Charlotte’s journey but we are so proud of how far she has come.
I can’t say enough about all of the people that have touched our lives since we started writing this story. Without all of you, we would have been lost.
Thank you Doctor Gindlesberger. For taking Amy seriously when she thought something was wrong.
Thank you Doctor Wagner and Doctor Dvorak. For taking the extra test that led to an early diagnosis.
Thank you Katy. For welcoming us to this frightening world.
Thank you Doctor Diamond. For giving us hope-hope that seemed out of reach too many times.
Thank you Tracy. For making me laugh when I’d rather not.
Thank you Doctor Desantes. For your wisdom and dedication to your work.
Thank you to the staff at AFCH. For everything you do. Every day.
Thank you Erin. For your selfless gift of life, love and laughter.
Happy New Blood Birthday!!
Thank you to our family. Without your love and support, this would have been unbearable.
Thank you to our friends. For putting up with us, and our rules during all of this.
Thank you Charlotte. For always wanting to be yourself.
Thank you Molly. For sometimes taking the back seat, even though you are just as deserving to ride in the front.
Thank you Amy. For taking care of our family in ways that I couldn’t have done myself.
Thank You God. For creating all of the pieces of this puzzle. And Thank You for making them fit.
I vividly remember a conversation I had with Dr. Diamond during one of our early stays. I was feeling a little more relaxed about our situation. Kyle was helping me cope in my job and Cheryl was assisting Amy with her schedule and duties. I remember seeing several families that had to leave their child at the hospital while both of the parents worked every day. They didn’t have a job where they could flex their time and borrow from next year’s vacation pool. They didn’t have co-workers donate their own time off to them. They needed to show up at work, all day to keep the insurance going while their child stayed behind without them. I actually felt like it was sort of a blessing that, because we had such a great support system in place, we were already bearing this weight and not a family that couldn’t make it work. I told Dr. Diamond that if it happened to us, maybe it wouldn’t have to happen to someone else. All Dr. Diamond could say was that it would happen again. And again. It brought me to tears right there. And still does to this day. Every day in the US, 36 children are diagnosed with cancer. That’s thousands of families each year that are thrown into a scary, uncertain world. We were extremely lucky in that there were several possible donors on the marrow registry. That is not the case for everyone who needs a transplant. If you haven’t already done so, please consider joining the National Marrow Registry by visiting Be The Match or DKMS.
Thank you all for your continued prayers and positive thoughts.
Charlotte and Molly with baby Max
Infrequent Posts=Life is Good. Life is still going on as normal for the Elskes. Molly and Charlotte have been sick a couple of days over the last few weeks, but they have been troopers through it all. Each one has supported the other when she wasn’t feeling well and they have been very patient waiting for the other to get back to her normal, playful self. Now that they are both feeling better, they are enjoying the snow days Charlotte has been getting and really driving Mommy and Grandma E bonkers just trying to keep up with them! Charlotte is still loving school and Molly is often very jealous of her older sister and wishes she could go as well.
Amy and I are doing well also. We are both anxiously waiting for this winter to get over with so the girls can get outside and get more exercise than just running around the house.
We wanted to share a wonderful fundraising event with you. We’ve mentioned Austin, the 5 yr old boy from Fall River who was diagnosed with ALL when he was 2. He has spent the last three years battling this disease like a true superhero. His mother, Kim, has been nominated for Leukemia Lymphoma Society Woman of the Year 2014. As you will read in Kim’s letter below, LLS funds lifesaving blood cancer research around the world that plays a vital role in saving the lives of children like Austin and Charlotte. Kim was also one of Uncle Dean’s nurses while he was at the UW receiving treatment so she is connected to our family in more ways than one.
Please visit Kim’s fundraising page here and consider making a donation. If you are uncertain about donating online, you are more than welcome to mail a check to us (by May 1st) and we will get it into the proper account.
We have had a terrific month. Charlotte did a wonderful job singing in the Elementary School Holiday program. We loved seeing her on stage and smiling and waving at us! I still find myself humming “Hearts around the world” and a few other songs they did. The following weekend, Charlotte and her friend Brady played Mary and Joseph in the Church nativity play. They were so cute. And Molly was a happy little sheep!
We had wonderful Christmas celebrations this year. Lots of family. Lots of toys. Lots of fun and laughter. Lots of food. And lots of eggnog!
We had Charlotte’s first appointment with Dr. Diamond since July. Charlotte did very well with her blood draw, only crying a little bit and not yelling, fighting or screaming. And she laid perfectly still for the half-hour long echo-cardiogram and didn’t make a peep once during any of it! After that we saw Dr. Diamond and she went over Charlotte’s echo and CBC results. Perfect, perfect were her exact words (WBC 5.8, Hemoglobin 13.1, 263k Platelets and 2800 Neutrophils . We are so thankful for that. I know that today was a very rough day for Amy and me. We were both on edge and very nervous about how everything was going to go and we just wanted it all over with. We couldn’t have asked for things to go better and we are so proud of her!! After discussing how good Charlotte looked, Dr. Diamond mentioned that she was at a conference earlier in the month and said there is much more evidence now showing that we made the right decision in 2010 in going straight to transplant rather than playing the waiting game. She stated that there are more statistics out there confirming that chemo alone would not have been the cure for her AML-M7 and complex cytogenetics. We assume that “statistics” mean children who have had relapses or have passed away from their disease. We are so fortunate to have such a well matched donor in Erin. And we are so happy and grateful now to call her family! Dr. Diamond continued to mention that our main focus is going to be trying to keep her heart healthy by proper exercise and diet to prevent complications from the harsh side effects of the chemotherapy. Before we left, we got one more piece of good news. We won’t be coming back to clinic until December 2014!! While we love seeing Dr. Diamond and hearing the good things she has to say, we won’t miss putting CJ through the blood draws and the other appointments. She has been through enough already, we are just looking forward to her spending another year as a regular kid! Thank you again for all of your prayers and thoughts. We hope everyone has a safe and happy New Year!
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.