This smile melts my heart every day

Hadley Lehr

First post: Sep 9, 2015 Latest post: Aug 30, 2016
Jim and I first want to thank everyone for all of the love, support and well wishes we've had in the last few days.  Despite this terrible diagnosis, Hadley is one lucky girl to have so many people love her. We have a long, difficult road ahead of us and we'll need all of the love and support we can get. 

How we got here.. 
The first week of August, Hadley had a temperature that was fairly low grade (101) that we associated with teething. Later that day, however, she would not even stand on her right leg but instead kept it tucked up - similar to how a flamingo would stand.  We took her to the doctor the next day because we thought she had hurt it somehow. Our pediatrician told us it was likely something called transient synovitis, which is when your immune system creates too many antibodies and they line the synovial pocket of the hip joint, causing a young child to limp. This is relatively common and goes away quickly. And hers did, she was fine a day or two later. Then, a month later, the first week  of September - she came home from daycare with a temp of 102.8 and a limp a day or so later. Again we went back to the doctor, but this time they decided to run tests.  Those tests were followed by more tests and more tests, which have lead us to where we are today.
Hadley has been diagnosed with AML - Acute Myeloid Leukemia. In the US, there are less than 600 cases of this type of leukemia diagnosed in children under the age of 16. So, this is fairly rare. What it means is that we have to treat her cancer more aggressively than some of the other Leukemia types. Hadley is looking at 6-8 months of in-hospital treatment. We did learn good news today that her spinal tap fluid came back negative for leukemia cells, which is a big win because it means it has not spread to her central nervous system.  We also enrolled Hadley in a randomized trial for an investigative, adjunct therapy to standard chemotherapy. We learned today that she will indeed receive the investigative drug.  The next results we're waiting on for her will be the cytogenetics, which look for certain genetic markers that put her her into a "low risk" vs "high risk" of relapse category. We should know this within the next week and the results could alter treatment. For now, we're moving forward and Hadley will begin chemotherapy tomorrow.  This will be 10 straight days of chemo, followed by 18 days of rest (all in hospital). At the conclusion of this induction cycle, they will do a bone marrow aspiration to determine how she is responding to treatment. Then she will repeat this or a similar program 3-4 times more depending on the outcomes after each cycle. She should have the opportunity to come home anywhere around 4-10 days between cycles, before she starts again. Now you know why I said, it's a long, hard road. For Jim and I, this is a new vocabulary that we never wanted to know and watching our daughter get repeatedly stuck with needles and poked and prodded.. it's been torturous.  But tomorrow we can know that Hadley is on her way to getting better. We will have to take this one day at a time and one cycle at a time.

We are so thankful to have everyone offering to help and here's how you can. 
1. All prayers, positive thoughts, energy, etc you can send her away are so very much appreciated. She needs all of the help she can get.
2. If you want to visit - please let us know and we can tell you her schedule, as well as give you a security code. There will be times when she's not allowed visitors for risk of infection. The Infectious Disease doctor said those who wish to visit her during treatment should have a flu shot, their tetnus (TDAP) shot up to date and no symptoms of illness (taking your temperature is ideal).  All of this is to minimize her risk of infection while immuno-compromised from chemo. If you don't want to see Hadley, you can always come to see just Jim and I, and we can hang out in the family lounge, outside of Hadley's room and the secure area.   
3. We've tried to invite close friends and family to this page but if there is someone you think we missed, please let us know. We feel more comfortable not sharing this information on FB or other social media. 
4. Light the Night Walk - this is a charitable walk that raises money for the Leukemia and Lymphoma Society. If you like walking and want to help raise money that can also help Hadley, this would be a great way to be involved. 

I will try to post in this journal as frequently as I can with new test results, treatment outcomes and especially pictures of Miss Hadley. I already posted a few from today - she was off of IV for 4 hours and got to go outside, play in the play room and just be her happy little self before she goes into battle tomorrow. 

Lastly, our baby girl is due to arrive in a few weeks. We are so excited to meet her and will enjoy a little ray of sunshine during this challenging time. I'm quite positive we will need more support than ever once we are juggling a newborn, Hadley, hospital and home time. I'll try to update this site frequently with any ways you can help.  For right now, we can only focus on one day at a time. 
We love our little girl to the moon and back, and with all of your love and support, we know she can beat this!
Jim, Heather and Hadley

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