It is challenging to start this story, but it is time to share some of our journey. It's also come time to launch a fundraising campaign for Inigo. As we continue Inigo’s fight against cancer, we need financial help. We have had many of our friends and family reach out to ask if we had set up a fund that they could donate to. We were focused on the acuity of Inigo's health, but now the time has come when we can not wait any longer to ask for a different type of help. That being said, we are thankful to everyone who has been gracious and kind to us through this. We know that we have so many of you that are praying for us. So many of you have sent so many sweet and kind cards and letters with wonderful words of encouragement. It's beautiful to know that we have a community around us that cares for us, loves us, that lifts us up in prayer. Above it all, we know that you all love Inigo.
Our story began in September 2021. Every Wednesday night, our family would go on a motorcycle ride to grab some pizza. On this particular day, Inigo had seemed down throughout the day. I kept asking him if he was OK, but I couldn't get a straight answer from him. So I told him to rest for the day, relaxing in the hammock and checking in on me every once in a while as I was doing my work at home. As the day progressed, I tried to cheer him up by reminding him that it was pizza night. As it always did, a big smile came across his face, but it didn't seem to last long. The enthusiasm wasn’t there, and I could tell he wasn't feeling good. Lyndi got home from work, and we all jumped on bikes and headed out to Harvard General Store for pizza.As we finished, Inigo got up from the table and headed straight toward the bikes. This was not like him at all. Lyndi and I were surprised, so we also headed for the bikes. Once home, Inigo and Lyndi headed inside. I put the motorcycles away. As I came in the door, Lyndi asked me to quickly get some rapid tests because Inigo had thrown up, and she was worried that he might have Covid. After testing negative, he sat in front of the TV but couldn't keep himself awake. We gently asked Inigo to head upstairs, and we tucked him into bed, thinking he just needed a good night’s sleep.
The following Tuesday, we headed in for an ophthalmology appointment because his left eye turned in. After which, they informed me that I needed to take Inigo to the emergency room because his optic nerves were swollen. Lyndi met us straight from work, and we headed out to Boston Children's Hospital. In the emergency room, they kept doing neurological tests on him. “Inigo, touch your nose, touch my hand, stand on one foot, jump on one foot.” Everything seemed off, and there was very little coordination to help him get their tests correct. From there, they sent us up for an MRI. About 45 minutes later, I was called out of MRI and into the room where Lyndi was waiting. There stood the emergency room doctor with tears in her eyes. This was the first indication that things were more serious than we had assumed. We were informed that a large tumor was found at the back of Inigo's brain. Another study was needed, and I was escorted back into the MRI room to sit with Inigo. The next day, September 15, Inigo had a brain tumor resection. This was just the beginning of our year-long story, a story that we are thankful continues.
After Inigo’s initial brain tumor surgery, three days post-op, he fell into posterior fossa syndrome. It has been one of the most challenging elements to deal with throughout this year. Posterior fossa syndrome, also known as cerebellar mutism, is a post-surgical syndrome where the brain essentially locks down the cerebellum: the body’s coordination center. This affected all of Inigo’s purposeful movements. Movement was there though he could not move on command. Inigo could not swallow, talk, hold his gaze, grasp, balance or walk. All of Inigo’s personality and knowledge are still there, but it is locked away. Every day we work at finding the key to getting past the syndrome. With time, some of these symptoms have improved but remain a constant daily struggle.
A year in, Inigo has had multiple brain surgeries. He completed a course of intensive radiation on the tumor site. He has spent a month in rehabilitation at Spaulding Rehabilitation in Charlestown. We wish we could have had more time in rehab. Still, Neuro-Oncology made it clear how critical it was to have Inigo begin Chemotherapy as soon as possible after radiation. For about seven months, he has been in and out of Boston Children's Hospital for a challenging course of chemotherapy but what a fighter he has been. It has been amazing to watch; both amazing and heart-wrenching. Lyndi and I have been able to be with him every step. Every single day we are with him. Every single night we sleep next to him. Inigo needs our support, to feel our love, and to see us, hold our hands, and be with us every minute he wants to. Because of the need for this depth of care, Lyndi and I are with him; Inigo is our full-time job. That is our choice because we know this is our time to be with our son, and if this is all the time that we have with him, we do not want to miss not even a second.
As mentioned earlier, we also want everyone to understand how difficult Cerebellar mutism or posterior fossa syndrome is. It can be difficult enough to have your child go through cancer; many residual effects happen from the medications, radiation and other care. Because of its rarity, many don't understand how limiting and destructive posterior fossa syndrome is. If you have further questions about it, some resources, specifically through Saint Jude, will give you a better understanding of what posterior fossa syndrome is all about. What is so terrible is that we have lost a part of our Inigo to the syndrome. Cerebellar mutism has been extremely difficult to deal with, something so disabling; the degree of destruction is so unquantifiable that it has been hard to explain to those of you that have asked what it's all about. But to make it clear, cancer would have been terrible enough. Posterior fossa syndrome has taken the excruciating pain of knowing that your child is dying from cancer and multiplies it with the factor of losing your child's personality. It’s simply immeasurable. We will continue working as hard as possible to bring him out of posterior fossa syndrome. We want all of our Inigo back. We want his personality back, his laughter, his never-ending spirit of positivity. Our understanding from many resources is that most children who fall into cerebellar mutism will eventually come out of it. However, they may still suffer from it to some degree.
As any of you can imagine, this takes a toll on a family’s finances. We have made it a year without an income. This is a miracle, but the time has come when we do need help. This is difficult for us to ask. And we are embarrassed to ask for help, but here we are, and we can not be embarrassed any longer. We need help. We desire to continue being with Inigo every minute we have left with him. What that means is that we work every day with him on therapies. We work with him on his creative projects, and sometimes it means just being with him, talking one-on-one about all sorts of things. We are attempting to fit in a lifetime of experiences for our 10-year-old. As emotional as this journey has been, it has been a journey of love for us. We are so thankful for every day that we wake up, and we get to look at his smiling face and get a giggle.
A year later, in September 2022: Inigo had an MRI at the beginning of the month. A new site of disease was found on his spinal cord. We will now begin to fight against this new area. This means that he may need another brain surgery and shunt removal for a new treatment to be effective. Our fight with and for Inigo continues.
We are thankful for our community that has been there for us with words of encouragement and love. Again, we are also grateful to everyone who has sent us money, little bits here and there that have helped us along the way. Thank you to everyone who bought Inigo's Love is the Cure Sasquatch T-shirts. He loves seeing pictures of people wearing those shirts. We'll set up a link for those in the future. Those T-shirt designs were initially made for our medical teams at the various hospitals Inigo was at, and word got out and happily, many of you jumped at the chance for one.
So if you can, please join us and financially support our journey of caring for Inigo. Your financial help can assist us in many ways. Our trips to the hospitals are endless. We have monthly bills, as anyone does. Food, insurance, car care, clothing and supplies. Your support would help reduce some of our stress and allow us to offset some of our financial needs.
We have various other financial needs to support Inigo along this path. We continue to focus on Inigo's therapies as he works out of posterior fossa syndrome. Though his medical therapies are paid for by insurance, there are things that we do that are extra that are not covered by insurance. Some of you know Inigo was an avid mountain biker before his diagnosis. Inigo now has a fantastic recumbent bicycle. It is one of the tools that we have decided as a family to invest in for him. We have worked very hard to get him back onto the trails. These sorts of extras enable us to push his therapies beyond what his therapists can offer, hoping that Inigo will have more success. We understand the activities and little added elements that would motivate Inigo; that's the blessing of being his parents. We know these extra activities that Lyndi and I can do with him have allowed us to offer Inigo a well-rounded therapeutic experience. He is walking by himself again, though we hover just in case. His communication is getting better week by week. The joy that we saw exude from him the first time he climbed Mount Wachusett on his new recumbent bike was a fantastic scene; the tears flowed freely. If you can imagine, he did this in the middle of his chemotherapy treatments! Inigo is a fighter; it is wonderful and inspiring to see.
Some people have asked us why we had to self-fund Inigo's recumbent bike. There are a few reasons. What Inigo has gone through with Medulloblastoma is not considered a spinal cord injury or traumatic brain injury. Because of this, we never fell into the right place, nor were we able to jump through the appropriate hoops to get the funding necessary for the bike. Doors seemed to close for us on that front. Another issue is that some programs that were set up to help people with assistive equipment were paused during the pandemic. We did catch the tail end, though funding cannot be retroactive. Some of those programs have opened back up. However, we have the bike for him now, and those programs will not fund assistive equipment after you have purchased it.
Thank you for the love that you have exhibited to Inigo, Lyndi and me. Thank you for praying for us. Thank you for the support you have offered us, and as we ask for financial help, know that we are thankful for you whether you can give or not. We will continue to fight. In us, you will see a spirit of never-ending fight; buoyed by love and knowing that love is truly the cure. We will continue to live holding our heads up because we have hope. Regardless of how this story plays out, we will forever have hope, a passionate love for our son, and the desire that in us others may see love from a different angle. Inigo's life will not be in vain. Love will allow us to tell his story.
Love is the Cure. There are No bad days.
Fundraising team (3)
This team raised $41,747 from 229 other donations.