Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.
On June 6th 2016 our lives were flipped upside down. That weekend we just got done taking a hike through Pike lake state park enjoying the beautiful weather that day, little known to us that our baby girl was very sick. I was giving her piggy back rides cause she didnt want to walk much but I didnt mind. She complained a little that her legs were hurting but I just assumed it was because I was holding her legs maybe a bit to tight. I never thought anything of it. But the next day we got a call from daycare that Hayley when she woke up from her nap got up and took a few steps and collapsed. Julia took her to her doctor that night and they ran some blood tests and told us if they see anything really wrong they would call us that night otherwise they would call us the next day. Lo and behold we received a call from the doctor that night telling us that her blood panel did not look right and looked like it could possibly be leukemia. I just remember the thought of dread as my wife was taking to the doctor and by the tone of there conversation. I just knew something was not right. I will never forget that moment.
The next day we took her to Children's Hospital of Wisconsin where they confirmed what I was praying not to be.
The next few days were awful trying to call people explaining what was going on and not break down talking to them. But what was really breaking my heart was thinking what my little girl would have to go through for an uncertain amount of time. But things are now much clearer not for me at least. I figure for myself at least I cannot be sad for her but be as strong as possible for her and get her through this. I still think this is so unfair for her. What has she done to deserve this?! But I don't think its fair for any child to go through this.
Results from blood work starting coming in. As bad as it was, I starting making light of what information we were getting. She was diagnosed with Acute lymphoblastic leukemia. Thankfully it is the type with the highest cure rate. But as 90 percent may be high.....it is not high enough for me. I do not want to lose my little girl.
She started getting treatments on June 10th and Hayley stayed strong and reacted well to Chemo. They put her under, gave her a spinal tap, tested her spinal fluid for any leukemia cells that might have spread there, gave her a dose of chemo in her spinal column, and placed a PICC line in her arm for future blood draws and chemo treatments.
Further tests came back that were promising. First that they did not find any leukemia cells in her spinal fluid, they also figured out she had type B "ALL" (Acute lymphoblastic leukemia) and not type T which was a good thing. Also they ran a cytogenetic test on the leukemia and found it to be "favorable" which means it should respond well to Chemo treatments. As long as the day 8 MRD blood test comes back with favorable results, (They do not want to see any blast cells in her blood) and as well as the Day 29 MRD bone marrow test come back with favorable results she could be put in Low to Standard Risk category. We should be getting the results on the blood test back tomorrow on 6/21. (Fingers Crossed) She has received a few blood transfusions already as the Chemo is killing the good cells along side the bad, and mainly because the leukemia has taken alot of room in her bone marrow. Which caused the achy legs. She has recently shown signs of improvement with walking lately which seems like a good sign that the chemo is taking hold on the disease and freeing up the marrow for normal cells to grow.
The first month of treatment will be pretty rough for her but as I said before she so far has been pretty tough. Shes on 3 different IV Chemo Treatments along side an array of other medications including a powerful steroid.
I will continue to update this page as I get more information. Keep the prayers coming! And thanks to SO many people for there love and support! I sincerely thank everyone who has supported us by any means from the bottom of my heart. But the only thing that will make me truly happy is to see her considered cured years down the road.
Link to gofundme page created by a friend:https://www.gofundme.com/2979bcs
To be clear to everyone...Julia and I do not want to make any profit from this. There are many other ways to support us as well if you felt the need to do so. We already had an outpouring of support from our local community friends and co-workers. A heart felt thanks to all who are thinking of Hayley and us. I hope to return my thanks to all of you in some way in the future.