Oct 14, 2017 Latest post:
Jan 30, 2019
Hello Family & Friends! Our world was rocked last week when Maggie was diagnosed with Acute Lymphoblastic Leukemia (ALL). We are so thankful we caught this so early in the stages of it and she is still considered in the "low" category stage of it!
How did we get here...This all started in August when on a Thursday morning Maggie woke up at 5am complaining of leg (shin) pain. We thought it was a cramp or growing pain. She spent much of the day with ice and ibuprofen and not walking much. By that night it was still bothering her so we took her to her doctor the next morning. An X-ray showed a deep soft tissue bruise. We were told it could take 6 weeks to feel better. By the end of the weekend she was fine and back to her normal self so we thought nothing of it. Kids get bumps and bruises all the time. Fast forward to Wednesday October 4 when again at 5am she was complaining of the same leg pain. She wouldn't put weight on it but by 9am seemed to be ok. I took her back to her doctor to be safe and her pediatrician seemed a bit concerned about the X-ray so she sent it for others to look at. The next day we had bloodwork as a precaution and were sent to an Orthopedist on Friday. All the while Maggie is her normal self. Friday at 5:15pm our pediatrician called me and said that the bloodwork is showing levels slightly not normal and she was not happy with it. She had called a hospital in NH who said we could come in after the weekend. She then called Boston Children's Hospital who said we needed to get there immediately. Our pediatrician said to take the night to pull ourselves together but go in the morning. We got here at 8am Saturday and after a full day in the ER with bloodwork and X-rays, the Oncology Team came to say that they are concerned and we needed to be admitted. The next day she was sedated for a bone marrow biopsy..the day after that she was sedated for an MRI. Once those results came back, the head of Pathology and Oncology determined that Maggie has the very early stage of ALL. Dan and I fell apart as they told us the news. Hearing the words and seeing their faces made us numb with fear and panic. The next day she was sedated for a spinal tap and to have a PICC Line inserted which would take over as her new IV while we are here.
Now for some positive news.... ALL is a disease that our doctors here can fully say they have a cure for! The type she has is the most common in children (85%) which is both comforting and sad for these children at the same time. More great news is that the spinal tap came back clean of cells meaning these nasty cells have not traveled into her spin on their way to her brain!
We have started treatment and will be here at Boston Children's Hospital for up to a month. We have chosen a treatment plan that our team of doctors say she will do so well at. It may get tough and ugly at times but we are pushing thru one day or one minute at a time. After these few weeks here we get to go home! And then begins the next 2 years of our life of coming to Boston often for a day for treatment. Some will be done at home either with a visiting nurse or a drink. After 5 years they consider you fully cured!!
We have had an outpouring of love from family and friends in this last week and it has helped ease the blow for the 4 of us! We couldn't have gotten here today without each and every one of you! We promise to keep you posted and informed on how she is doing along the way.
A dear friend referred to her as our own Princess Poppy. If you know the movie Trolls you know that it is one of Maggie's favorites and also has a song that speaks so well to Maggie and her story today. I will leave you with the lyrics. Thank you all so much! Xoxo
"Hey! I'm not giving up today. There's nothing getting in my way. And if you knock knock me over, I will get back up again. If something goes a little wrong, well you can go ahead and bring it on. 'Cause if you knock knock me over, I WILL GET BACK UP AGAIN"