Mighty Maverick’s Battle Against Brain Cancer

Hello and thank you for visiting #MIGHTYMAV’s gofundme page! We’re asking your help to raise funds for the Matuszeski Family who at the beginning of June found out the devastating news that their son has brain cancer. The next months of their lives will be spent traveling to and from St. Jude as well as countless days spent in the hospital while Maverick receives treatment. Please read about their journey so far below this paragraph. If you would like to be a part of Maverick’s caringbridge.com webpage, please email his dad at: [email redacted] and he will send you the link to the private account. Thank you for your generous donation to support our #MIGHTYMAV and #MAVSTRONG campaign. Please check this page often for other ways you can support Maverick!

Mavericks’s Story as written by his parents on July 12th, 2023:

Maverick (Mav) who is three years old (four on July 16th) was recently diagnosed with a malignment (cancerous) brain tumor. The story starts on June 6th when Jen and I took Maverick to UW Hospital Children’s ER. The events that led us there that day had to do with Maverick developing a tremor in his right hand and arm approximately two weeks prior. Maverick had also randomly vomited two times within a week in the morning after taking a sip of his juice. This was odd because he denied having an upset stomach or any complaint for that matter. Mav had a tick bite the Friday before Memorial Day so we thought possible Lyme disease could be the cause of these symptoms. Jen took him to Community Pediatrics, and we were sent for bloodwork. That all came back negative, no Lyme disease. Community Pediatrics was going to refer us to outpatient neurology which would take a couple of weeks. On June 6th, my mom who along with my dad watch our kids while we work, called Jen and let her know that Mav was very lethargic this particular day. Jen called me and we agreed she should call Community Pediatrics and brief Katie, NP on this new/worsening symptom. She contacted UW ER and spoke with the neurologist on call who agreed that we should be seen there. I left work early and stopped home to pick up Mav and Jen and off we went. Although this blurb doesn’t detail it, Katie who is a Nurse Practitioner at Community Peds is our first hero in all of this. She didn’t have a good feeling about Mav’s symptoms and got this whole thing rolling. She even texted Jen at 1:30 a.m. the morning after we went to the ER after seeing Mav’s chart and his preliminary diagnosis in the ER. That diagnosis was a large (7cm) mass to his left temporal lobe with mass effect (his brain was shifted from being displaced by the tumor). This was after a quick brain MRI while in the ER. After this and still in the ER, we met with the pediatric neurosurgery resident, Joyce, and eventually the attending Dr. Iskandar. Maverick was then intubated for a functional MRI which lasted about an hour and a half. This was all happening so quickly that Jen and I were just in complete shock. We sat in silence for what felt like an eternity. Around midnight Dr. Iskandar met us in the waiting room and let us know that Mav would have surgery at 8 a.m. that morning! Talk about having your world turned upside down with a matter of hours! Mav was extubated for the night and was very restless. Needless to say, we did not sleep much that night. The next morning, we said I love you and kissed our sweet boy. His momma rode with him on his bed to the operating room. We waited in agony all day and it wouldn’t be until 10 hours later that he was back from surgery. Dr. Iskandar informed us that the surgery went well, and that Mav would remain intubated until the next day so that he could have a repeat MRI. He did inform us that the tumor resection was very vascular, and that Mav needed two units of blood during the surgery. He had resected about 80% of the tumor and another surgery would be needed to safely remove the rest. Mav recovered exceptionally well and after five days we were discharged home. After only a couple of days he was practically back to normal and without a tremor to his right arm. The second surgery was scheduled for June 27th and ended up being another 10-hour surgery. He again recovered well except for some urine retention which he was sent home with an indwelling catheter for about five days. The good news is that Dr. Iskandar was able to remove more than 98% of the tumor. He and third year resident Joyce (they are both from Lebanon by the way….no not Lebanon, WI) Joyce and Dr. Iskandar are our second heroes respectively in this story. Prior to the second surgery we had learned that his tumor was an embryonal tumor but not which type because we were waiting for further profiling of the tumor. We have since learned that it is a Primary CNS Neuroblastoma with PLAGL1 genetic mutation. It is a grade 4 aggressive type of tumor. To keep this relatively short, I won’t explain each meeting with oncology, but after extensively discussing our options we have enrolled Maverick in the Head Start 4 clinical trial. We also are currently awaiting review of his case by the St. Jude tumor board which meets next Wednesday. We have a feeling they will concur with the Head Start 4 clinical trial. If that is the case, he will start chemotherapy the last week of July. This Friday 7/14 he goes in for a one night stay to have a PICC line and PEG tube (eventually will be switched to a G-tube) placed in preparation for his chemotherapy. He will have 3 to 5 cycles of chemotherapy which last 28 days each, so essentially 3-5 months. After three months a repeat MRI will be performed and if there are signs of clinical remission then he will go on to the consolidation phase or if no remission he will repeat the chemotherapy cycle two more times. The consolidation phase which is 1 or 3 ultra-high doses of chemotherapy requires stem cell rescue. This is the randomization portion of the trial so it can be 1 or 3 treatments. For this phase some of his white blood cells will be harvested via leukapheresis and preserved sometime after his second induction chemo treatment (end of August). They will then be given back to him in the consolidation phase because the high dose chemo will kill his bone marrow which produces all blood cells. He will not have radiation as a first line treatment due to the sensitive nature of his developing brain and the severe lasting complications radiation can cause. This is an option though if chemotherapy is not successful. If he was to have radiation therapy, it would be at Mayo Clinic or another facility in Northern Illinois due to the fact that UW nor Froedtert have the capability of proton radiation at the current time. Proton radiation versus photon radiation has less potential long term side effects especially for developing brains like Mavericks. We confirmed this today during a fact-finding conversation with a radiation oncologist from the Carbone Cancer Center at UW. Her hope is that we don’t need the radiation but she would recommend proton if needed.

Personally, I feel a small sense of relief now that we know what this thing is and what the plan to murder it is. We both agree that the worst week and a half of our life was waiting for pathology and the constant speculation and urge to “Google” the topic. I didn’t heed the same warning I gave to Jen and that was to NOT peruse the internet on the topic of “pediatric brain tumor” until we knew what it was for sure. No doubt I caused myself a lot of undue stress. Oh, and by the way, Jen didn’t heed the warning either!

Now that the dust has settled a bit, Jen and I want to again extend our appreciation to our family and friends that we’ve already shared this news with. Thank you to everyone who has reached out to help and more importantly prayed and continue to pray for our little boy. We’ve moved past constant sadness, though the tears do still come. We’re focused now on the fact that this is our life for however long it takes and we’re ready to do whatever it takes to rid his innocent body of this horrible disease. His sisters Maddie and Molly are handling the situation very well. The first surgery especially they were shipped from grandma and papas to aunt and uncles, to grandma, and back again! They have been nothing short of angels for all the stress and disruption of their summer break this has caused. Even though Maverick’s health is our priority we haven’t forgotten the girls. We intend to keep life as normal as humanly possible and spend all the time we can with them throughout the whole ordeal.

Many of you have asked how to get updates or how to help. We’ve set up a caringbridge website where we will give periodic updates on Maverick’s progress especially once his treatment starts. It isn’t a public site so if you would like to be invited to the website please PM me your email address. We were initially resistive (but still incredibly grateful) to accepting your generous donations. Once the reality of the situation set in and the amount of time away from work that this will require was realized, it became apparent that we’ll need to rely on help from others. Further, after reading stories of families in similar situations, it confirmed the fact that we need to be open to accepting donations that will benefit our family. We’ve been asked countless times about a gofundme page. We will have that option available in the very near future. We’ve been simply amazed at the amount of great people we know who have provided us with offers of help, their time, financial assistance, you name it! People are still great and that’s one positive that Maverick will take away from this awful time in his life. I hope one day that we can repay the kindness we’ve been shown from family, friends, co-workers, even complete strangers!

A final request: Pray often for Maverick’s healing. Pray often for God to guide his doctors and nurses. Pray often for his sisters Molly and Maddie, Pray often for his parents and grandparents for the strength to carry him through.

With love,

Mitch and Jen