Max's Fight with Cancer
A few days ago, Max was taken to the ER for some general symptoms; fever, rash, constipation, fatigue etc. at first the doctors were chalking up his symptoms to some sort of blockage, however they were unable to explain his extremely high blood pressure, given his age. Upon a few more tests, they discovered a tumor the size of a baseball above his kidney. The tumor is cancerous.
The original plan was to remove the kidney entirely, but a complication arose where it had wrapped around Max's aorda which would prevent that particular surgery from happening. The treatment plan is still being discussed. When Max's blood pressure was stabilized, they moved him to Children's in Boston, which as we all know has arguably the best medical care in the country.
The feeling of receiving news as devastating as this is truly indescribable. Reading about stories on a frequent basis more often than not had me mutter such phrases to myself "that's awful" or "how terrible.." never thinking that my family would ever have to go through something to this degree. Now that it's a reality, my family, and in particular my sister Laura, can see first hand how the overwhelming love and support from our family and friends can be the light in a dark time.
I did not give this fundraiser a target goal. I completely understand that we are all strapped financially. Lydia sobs whenever I take my wallet away from her (it contains nothing of value.) We are planning weddings, buying homes, having children of our own. All I would ask is for you to share this link and Max's story on social media. Above all else, Max is going to benefit from the positive vibes given from those that are closest to us.
Please keep Max and his family in your thoughts. He is a great kid who has so much life to experience, and again, with the overhelming love and support from all of you, he will beat this thing.
I wanted to update you all that Max passed away last night. He battled as hard as he possibly could, but all of the complications through chemo and his transplants proved too difficult to overcome. He is the bravest kid I'll ever know, and I'll miss him so much.
Thank you all who supported Max and all of the family around him. His battle touched people all along the Northeast, and it's safe to say all of your love knows no bounds.
It's been awhile since I've updated so I wanted to fill everyone in concerning Max's progress. His big day was on Monday: surgery day. After about 8 hours under the knife, the amazing doctors and surgeons at Boston Children's removed 95% of his tumor. Max was an absolute champ throughout the whole process.
The doctors noticed that every part of the mass that they removed was solid and hard, which is an indication that the cancer cells are dead. The small part that they couldn't get was behind Max's kidney, shaped like a dumbbell. However, since the parts they removed were dead cancer cells, the doctors feel confident that the part they couldn't get is dead as well.
The next steps include a few more rounds of chemo, radiation and immunotherapy. Immunotherapy is the process of re-introducing the stem cells that were harvested from Max throughout his treatment in the hospital. This will ensure that there won't be a single cancer cell left in his body.
Max is awake and doing well. He's obviously very sore, but like this entire process, he's taking things a day at a time.
There is obviously a lot of work and treatment to be done still, but what an incredibly huge step in the right direction. We can't thank everyone enough. We were at first blown away by the overwhelming amount of generosity through this GoFundMe, but everyone has gone so far beyond this small page in terms of support. People have spread awareness from Massachusetts all the way down to Florida.
There aren't any words to express our gratitude.
What a rollercoaster ride this has been. I will try to compile the past few weeks as best I can.
In addition to the cancer, Max has a disease called "HLH". This, in short, has been the reason why Max's organs to be inflamed, namely his stomach. It could've surfaced from 1 of 2 things--either this was genetic, or it came about from stress/chemo. Because of this, Max had to be moved to the ICU floor in Children's. This didn't change his treatment plan, just made it more challenging. They put Max on a steroid which ultimately made him feel better. Obviously this was a setback, but it was good in the sense that he was being monitored on a much more frequent basis. The biggest thing for Max was he could not eat or drink until his stomach inflammation had subsided. A thirsty Max is not a happy Max.
There was a point where the doctors thought they may have had to operate on Max, as there was fluid building around his heart. This caused his heart to work extra hard, giving an average of 168 BPM with no signs of slowing. The steroid was supposed to help with this, but it doesn't work instantly. Thankfully, it worked in enough time where surgery didn't have to happen.
As of this morning, things have become much more stable. His vitals are normal and the doctors seem to think the fluid around his heart will dissipate on its own. We're hoping he'll get to move out of ICU and back into his regular room soon.
He offered free Hawaiian Punch to all of the doctors who helped him, but he told the oncology team that they're not allowed to have any because they won't let him eat.
Again, I'd like you guys to continue following Max's blog at https://maxisafighter.wordpress.com/. It's updated much more frequently, through the good and the bad. I'll keep posting as often as I can as well.
We received some unfortunate news today. Max received another CT scan to check on the status of his tumor, and unfortunately it has grown larger. Essentially, the first round of chemo did not have any affect. Since the size of the tumor has grown, the doctors seem to think that it is starting to weigh on his kidney, which would explain why his fevers have not been getting below 101.
Because of this, the plan of action has changed. The original plan was to work Max up with the chemo, basically starting "light" and then going harder with each additional round. Now they are going to start what would be the 3rd round of chemo as soon as possible. The goal is to still obviously shrink the mass, but the doctors are convening with the surgeons to see if there is any possiblility to remove the kidney entirely, even though the tumors tail is wrapped around Max's abdomen. There will be more on that as soon as we hear.
Max is hanging in there, but has been very tired for the most part from all of the medicine. It's still great to see him perk up and play some video games or to hear him boss us around.
You have all done wonders in terms of keeping a positive attitude and keeping Max in your thoughts. Please continue to do so! Although this is a setback, Max continues to fight hard every single day.
I'm praying for Max and your family.
Thanks for the update Matt. Our thoughts and prayers are with Max and all of you. Love Aunt Sandra & Uncle Matt
Matt, Thank you so much for keeping everyone updated on Max and the plan of care! I know this is so difficult for everyone! Including Aunts, Uncles and Cousins! But we are here for all of you! See you soon!
My deepest sympathy for your loss. Thoughts and prayers sent your way.
I am so sorry for the passing of Max. My daughter Heather was his nanny for 4 years and we all love him. May you R.I.P. forever my little hero Max. I will forever love you. Your the best Guardian Angel anyone could ask for. Go rest high on that mountain little buddy.
I am so terribly sorry for your loss! No words are possible at a time like this; but I believe that Mighty Max is in a place of Peace. Love and blessings to his family!
I am so deeply sorry about the loss of your beautiful boy. May his spirit soar as he fly's with the angels. Much love and many blessings.