It was 4 years ago today that Charlotte received her second chance at life because of a stem cell transplant from a complete stranger. Since then, that stranger has become an integral part of our lives. We skype with Erin as often as we can and Charlotte and Molly just adore her. She has been a true blessing to our family and she has touched our lives in a way that few people can truly understand.
I apologize again for being neglectful of the blog recently. With the amount of time we’ve spent indoors this year, I should have a pile of good excuses for the delays in posts but I don’t. It has been a busy and fun, albeit cold winter. We had a happy and fun Christmas holiday and enjoyed getting together with family and friends. The girls got most of what was on their Christmas lists, and I don’t know that our house can hold any more. But both of them have been getting much better at letting some of their older toys go to other homes, so we are slowly working towards organized chaos when it comes to their rooms in the house. Speaking of rooms, Amy and I decided that Molly was getting too big for her toddler bed so we started shopping around for different beds. Before we were finished, we had located beds for both Molly and Charlotte (her bed has been broken for a while now so she needed something as well). The problem was that the beds wouldn’t fit into their rooms very well so different plans had to be made. We ended up completely clearing out Charlotte and Molly’s bedrooms and repainting both of them so they could swap rooms! It was a pretty messy couple of weeks while we had both the family room and living room filled with toys, furniture, clothes, stuffed animals, and beds to assemble (one of them we had to let sit in my truck for a while because we just didn’t have the room!). But both of the girls were very helpful in painting, moving and organizing their new rooms and they both seem to be very happy with where they are now!
Charlotte has been busy this winter participating in cheerleading and Girl Scouts. Lots of weekend days have been taken up with volunteering at cookie booths. Charlotte still has another week of cookie sales yet so if you are interested, let me know! :) Her cheerleading team even got to cheer during halftime for the Varsity boys basketball team a couple of times this year. They all did very well and looked like they had lots of fun out there. Both Charlotte and Molly have been taking basketball lessons on the weekends. Charlotte and her team are now playing games (with very minimal officiating), and she even scored her first two points last week! It’s been a cold winter here so the girl’s time outdoors has been pretty scarce, but they still insisted on playing in the fresh snow when it fell.
Charlotte has also been chosen to be the Girl of the Year for Wisconsin Chapter of The Leukemia &Lymphoma Society. It’s a wonderful honor. But it means even more because she is paired up with Austin Schuetz from Fall River as he is Boy of the Year. They are both such deserving kids and have incredibly inspirational stories. We look forward to the LLS campaign this year and hope CJ and Austin have a great time!!
As for a couple of updates for the rest of the family…
I changed jobs in early February- leaving PDS where I have been for the last 11 years. It was a very tough decision for me to make. PDS has been nothing but wonderful to us throughout this whole journey. I don’t know where we would be without the support and dedication of my manager, Kyle. He was able to keep me focused on my family and was instrumental in organizing the Love for Charlotte benefit shortly after her diagnosis. He is a true friend and we wouldn’t be where we are without the help from wonderful people like him. Thank you Kyle, for all you have done for us.
In January, Grandpa Elske ended up making another couple of visits to the urgent care/hospital because of chest pains and breathing problems. After a few more appointments he was scheduled to undergo quadruple bypass surgery on January 20th. He did well during the surgery and hospital stay and was able to come home on Grandma Elske’s birthday after spending just less than a week there! He has been recovering at home and getting better and stronger every day.
Thank you again for checking in on us.
Charlotte and Dr. Diamond
We hope you all have had a wonderful and safe holiday season so far. Ours has been very busy with school activities (Charlotte and Molly), holiday shopping (Amy) and egg-nog drinking (me)!!
Today Charlotte had her yearly clinic appointment with Dr Diamond at The American Family Children’s Hospital. It’s always a very nerve-racking appointment and Amy and I have been both looking forward to, and dreading this day. We very much want to hear that the doctors and nurses think she looks great and we want to hear them say that she is doing so well. But we don’t like putting Charlotte through the blood draw and we are always terribly anxious to know what those CBC and Echocardiogram results are. So it’s a good thing this day only comes once a year now.
Charlotte, Ashley, and Molly
She was very brave during the blood draw and sat through the echo like a pro! We couldn’t have been more proud of her! Dr. Diamond was impressed with how tall she is getting and how big Molly is getting too! Dr. Diamond said she had no concerns and thought Charlotte looked “perfect”. Her only recommendation is for Charlotte to have her first neuropsych evaluation this summer. Just to help us assess cognitively how she is doing after everything she has gone through in her young life and catch any potential side effects from the nasty chemo she received. Had Charlotte been older at the time of her BMT, she would have had this evaluation then too but since she was only 2yrs old we got to skip it at the time. Dr. Diamond states she doesn’t think anything concerning will be found, but in the event there are concerns with her learning it’s better to know now rather than later. Charlotte’s CBC results came in later in the afternoon and those too looked perfect. Her WBC was 6.0, Hemoglobin 12.4, Platelets 273k and Neutrophils 2560. (did you get those Jason?) We stopped in on P4 and saw some of our favorite nurses and they all mentioned how great Charlotte was looking, and how thankful they were that we remembered to stop in to see them. It was a surreal feeling to now be 4 years out from diagnosis and actually not have all of the staff not recognize us!! Or they would recognize Amy and me, but Charlotte and Molly were complete strangers to them. (Except for Ashley that is….she gave us the warmest greeting!!!) We celebrated by taking a trip to Toys-R-Us when the nurse called us with the Echo results. Those too were perfect. So all in all, it was a pretty damn great day.
Thank you again for checking in on us and we just want to say “Happy Holidays” from all of us to all of you. We hope you all have a blessed and magical Christmas season.
I apologize for the delay in posting again. We have had a very busy and really awesome fall!
Amy and I surprised the girls in October with a trip to Disney World!! We all had a fantastic time and already miss it dearly. The girls were so excited to go and loved every minute of it. We visited Give Kids the World again for a day and had a blast. We even met with another family from New York who found our blog when their son was diagnosed. He’s the cute one in the red and received his transplant from his superhero brother! They were enjoying their Make-A-Wish trip the same time we were down there. How cool is that?? We really connected with them and their two boys are adorable! We spent the entire day with them at GKTW and at Magic Kingdom for the Halloween party!
We took a day off and drove to Sanibel Island to collect seashells on the beach. The girls were thrilled to bring a huge bag of them home! We also had dinner with my cousins who moved to sunny Florida many years ago but still keep in contact with us and love reading Charlotte’s updates.
We spent the next week at all of the Disney parks and couldn’t have had a better time. Molly and Charlotte each met all of the princesses including Anna and Elsa! All of us can’t wait to go again!
See more pictures on Amy’s facebook page here: Disney pictures.
Charlotte has been enjoying first grade and Molly is also having a great time at 3K preschool. We just celebrated Molly’s 4th birthday this past weekend with family.
Charlotte’s next appointment is coming up on December 19th. She will be seen by Dr. Diamond and have another echocardiogram to monitor her heart for chemo damage. We will update you when we know more.
Thank you all for checking in on us. We hope you have a safe and happy holiday season.
Four years ago today, Charlotte was diagnosed with AML. She was 27 months old.
September 11, 2010. Fighting a 105 degree fever.
September 2, 2014. Starting 1st grade.
It has been a wonderful 4 years-more magical and exciting than I could have ever imagined. Every day I spend with our family is an absolute blessing!
It is because of Charlotte that we are walking in the Leukemia & Lymphoma Society’s Light the Night walk next Friday. It is because of the families that we know who didn’t get four years with their child or family member. It is because every three minutes one person in the US is diagnosed with a blood cancer.
It’s been a wonderful and happy summer! We have all been keeping busy! The girls are having a great time every day, and I am sure they will miss each other when school starts next week. Charlotte will be entering first grade, while Molly will be starting 3k preschool for a couple of mornings a week. Amy and I are both excited to see them start school and learn and grow like every other child is doing.
We just had to share this picture as it is an example as to why we are trying to raise more money for blood cancer research. At summer school this year, Charlotte was asked to draw a timeline documenting her life. Everything above the purple line are the good things in her life. In case you can’t read it, the good things include Disney World, up north, learning to ride a bike, her birthday, and her cousin Brett’s birthday. Also listed is her port….this is how the nurses administered her chemo, medications, blood draws, and transfusions during her leukemia treatment. She knew how it important it was for her for those months and that’s why she wrote it on there. Never in a million years would we have ever thought Charlotte considered her port as something “good.”
The bad things in her life are below the purple line. She simply wrote two things: Dean and Leukemia. Her Great Uncle Dean lost his battle to the same cancer as Charlotte had last year. Uncle Dean was one of Charlotte’s biggest supporters and we miss him dearly every day.
Charlotte was so proud of her timeline and I had a horrible time fighting back my tears. I firmly believe that no one, especially a 6 year old little girl, should ever have to list leukemia on her timeline.
Please help us fund more research so that we can find cures for this horrible disease. Help us keep the word leukemia off of the ti melines of so many others. Please join our team in honor of Charlotte and in memory of Dean. There is no registration fee so I encourage you to donate to yourself when you sign up.
I am also happy to announce that we will be having a fundraiser night at the Columbus Culver’s on Monday, September 8th from 5-8pm. Charlotte’s Angels will receive a percentage of all sales during that time frame. Please come for dinner and frozen custard and support this wonderful cause. Or let us know if you are interested in helping us volunteer!
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!!