Maxwell's Diabetic Alert Dog
Hello,
My name is Bethany and I am lucky enough to call Maxwell my child. Maxwell's father, Tony, and I are trying to raise funds to acquire a diabetic alert dog. To say this would be life changing for Maxwell (and the rest of us) is an understatement.
About Maxwell: He is a beautiful nine year old boy who has had a rough time of it, medically, for the last few years. In February of 2018 Maxwell's eyes started to cross. I didn't notice it much until he was trying to read and would close one eye to do so. It was then he told me that when he used both of his eyes, he would see double. We found an amazing pediatric optometrist who got us in quickly to check his eyes. At this point, I just thought he would need glasses... I got glasses at 5, no biggy. She couldn't find anything wrong with his sight and she recommended that we go straight to Boston Children's Hospital.
It was a tense 24hrs of CT scans and MRI's and then we learned that Maxwell had a skull based tumor called Chordoma that was pressing on his eye nerve. So many words that I never thought I would hear in conjunction to my five year old: cancer, tumor, surgery, radiation. In April Maxwell underwent a 14hr surgery to remove the tumor from his clival bone. His magical doctors were able to remove the tumor through his nose.
The surgery went well and after 5 days in the hospital he was allowed to come home. Within two weeks he was back to being himself, wanting to go back to school. After he healed, his doctors wanted to be extra cautious and make sure they got everything, so in the end of August 2018, Maxwell started 40 rounds of proton beam radiation at MGH. The pediatric team at MGH Proton Beam are so absolutely amazing. It was during this time that Maxwell became the 'tie dye kid'. He wore tie dye every single day to radiation. On his last day, every single person in that facility was in tie dye. Still brings tears to my eyes.
So, the clival bone is right behind the nose, under the skull. When he got the radiation there was some risks to that area, mainly the pituitary. His pituitary was damaged, leaving Maxwell with some life long complications. He will need to take thyroid meds daily, along with a growth hormone injection nightly until he is done growing.
This all leads us to his latest diagnosis that happened in January of 2021. I noticed Maxwell had been losing weight. He was just not acting himself. We have an amazing Endocrine doctor and when I called her with my worries, she had me take him for blood work. While we waited for those results, she also had me go purchase a blood glucose testing kit. That is when we found out that Maxwell was hyperglycemic. When we arrived at MGH emergency room, we also were told that he was in diabetic ketoacidosis. Amid a pandemic and other disasters, Maxwell was diagnosed with Type 1 diabetes.
We spent another week in the hospital figuring it all out. For this kid, I think this diagnosis was the worst. Medical trauma, depression, anxiety, just a constant ball of worry. Add in the pandemic and not being able to find him the care he needs is just awful. Recently Maxwell was fitted with an Omnipod and a Dexcom so he can have continuous blood sugar monitoring and has a constant supply of insulin attached to him.
But having a dog that would be able to help monitor him at all times would be absolutely amazing. Maxwell loves animals, especially dogs. He would flourish with a dog of his own that would stay by him night and day. The security and the emotional support of a dog would bring him out more, get him moving.
Getting a diabetic alert dog is a process. First you have to find an organization, get on the wait list, get matched with a dog, then it is about 8-12 months to train the dog before it even comes home to us. To get on the waitlist requires a down payment of $2500. That is our first goal. We plan to do some fundraising in the coming months as well. Lots of tie dye!!!
If you want to help get Maxwell his dog (black or chocolate lab he has decided upon), we would greatly appreciate it. Bringing a smile back to our boy is our number one priority.
So much love and thanks,
Bethany, Tony, Maxwell and Quinlan