On October 4th Hailee's life changed drastically. We have always told her she was unique and one in a million we just never thought that she would actually become one in a million. When the doctor walked into the ER room I could tell by his face that something was really wrong. After a few days and many many tests the one thing a parent never wants to hear from a doctor is "your child has a life threatening illness". Hailee has been diagnosed with Severe Aplastic Anemia and just like that our world was turned upside down. 1 in every 8 people will be diagnosed with cancer, people being diagnosed with Aplastic Anemia is literally 1 in 1 million people..... SAA is bone marrow failure. Her bone marrow is not making the blood cells she needs. Without treatment SAA is fatal. Since October Hailee has spent numerous days in the hospital and on the days we have been "home" we have had clinic visits for transfusions. Hailee went from being a goofy, happy 8th grader who's only worry was "what am I going to do on the weekend with my friends" to "why me?" We have held her while she has cried trying our best to ease her fears. The treatment and care for this disease is very intensive and requires constant care. Over the last 6 months she has been undergoing immuno therapy and has had to deal with intense bone pain, jaw pain, swelling, nausea and various other nasty side effects. She will be finished with the course of medicine April 24th and we don't know how long before she goes to tranplant. We had our consultaion Feb 15th and found out we would be require to move to Seattle for 4 months. Throughout all of this I have had to quit my job to take care of Hailee. The medical bills are going to be astronomical and without my $45,000 a year income our regular bills are going to be a real struggle. Not to mention how expensive Seattle will be when we move down there. Nick does not get paid time off but has to continue to work because we have to be able to pay what we can but there will be days when he needs to be with his baby girl. The last hospital visit we were there for 10 days and he was only able to have short visits after work, which was heartbreaking. If anyone knows Nick, they know that family is his priority and his girls are his world. As a father he feels helpless and the guilt he feels for not being able to be there is crushing. The money raised will go towards medical bills, household bills and any of Nicks lost wages when he takes time off to be with Hailee. It will also go towards gas and groceries when we are in Seattle. Our 16 year old daughter Taylor has also had to rapidly try and adjust to the changes in our family. Thank God we were blessed with such great kids and they have been able to handle even the smallest changes. When Hailee was diagnosed in October we literally were in the process of replacing the floors in our kitchen, living room and Hailees room (our refrigerator leaked, 2017 was not kind to us) and it all needed replaced. We still have not finished it. I think we are so overwhelmed with what is going on with Hailee that the simple things seem like a huge deal. We have no idea what the next year will be like and are taking it one day at a time. Whether it is a money donation, home cooked meal, used clothes, home repair help or anything that just makes our new everyday life easier is appreciated beyond what any words could express. Anyone who has met Hailee knows the kindness in her soul. She is such a caring and loving individual who has been a joy to raise. She is always worried about other people and how they are doing. Helping her to stop worrying about everyone else and focus on herself and getting better is our main priority. The love and support of everyone so far has blown our entire family away and with your support she WILL BEAT this!+ Read More
First IV since the port removal, No problem! She is still holding steady. How it was explained to us today is that the cells that were attacking her bone marrow have been suppressed by the medication, how long it takes them to grow back and start doing damage again is anyone's guess. She is not in remission and is still immunocompromised for at least another 6 months. Sometimes, when the counts drop they do another round of ATG and cyclosporine but he said we wont be doing that, we will go to transplant. Right now our family feels like we are in limbo.... trying to live as normal as possible but still knowing she has a long road ahead can be difficult.
My husband words: "So I am sitting here on the couch watching TV listening to my children and their friends play a game in the other room! Hailee is laughing her butt off! Her laugh comes from deep within, with everything she is going through she still manages to share that infectious laugh with everyone around her! Moments like this is why I know she is going to beat this awful disease! I will never know what goes on in that beautiful brilliant little mind of hers, and how she is handling this so well?! It runs through my mind a lot!"
Hailee will be having surgery on July 5th to remove her port. When she goes to transplant they would have to replace it with something else anyway. Removing the port gives her a little more freedom this summer while she is still feeling good.
Since March Hailee's counts have been on a steady decline. They have downgraded her response from good to fair. As her counts continue to drop they will eventually declare the treatment a failure and we will have to move to Seattle for the bone marrow transplant.