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.
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.