Support for Kellen and Family

As Kellen's mother, I prayed he would never be facing another operation. Unfortunately, with the results of a recent CT scan on February 29th we learned he once again needs surgery. The road for Kellen has been really difficult and terrifying at times. As a family we tend to keep most of our life out of the public eye but we are at a point where we are asking for any support you can offer.

Kellen is scheduled for his 6th operation next month and with that comes medical bills, travel expenses to Boston, including a multiple night stay for my husband and I, and time off of work for my husband Patrick. He is a contract travel nurse and if you're not familiar with that, they do not accrue any sort of paid time off. I unfortunately have not been able to work for the past 8 years or so due to being disabled. While Pat is home with me caring for Kellen during his recovery we will be without any income. There are so many pieces to this puzzle that we are trying to put together and ultimately the most important thing is that Pat and I can be there for Kellen. We want to be able to focus on him and what he needs in order to heal and move forward from what we hope will be his last operation. We don't want the stressors of bills and expenses or the fear of falling behind to take our focus away from Kellen and his recovery. We know that monetary support is not something all can offer but as a family of Faith we also know the value of the power of prayer.

"Prayer is a surge of the heart, it is a simple look turned toward heaven, it is a cry of recognition and of love, embracing both trial and joy."

- St. Therese of Lisieux

I have written Kellen's full story below for anyone who would like to know what his journey has been like. It's been a true test of our strength as a family. I know that our Faith, family, and friends will continue to see us through. Thank you from the bottom of our hearts for being a part of our lives. We're truly blessed.

Fun fact: We recently looked back on the meaning of Kellen's name and the Irish translation is little warrior. He sure has earned that!

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Kellen's Journey

For those of you who know Kellen, you know him as a creative, quiet, young man. His personality shines when he is spending time with friends and family. He’s funny and artistic and quick witted and loving through and through! The strength and bravery he has exhibited through his uncertain medical journey is astounding. Kellen has struggled with hearing issues over the last 6 years and he has faced multiple operations. For those of you who don’t know Kellen’s history, I’ll start from the beginning...…….

This may be long winded but I promise you he is worth it!

Kellen was born on November 22, 2013, and he was a perfect little boy! For most of his early years he was a very typical baby and toddler. He was always trying his hardest to keep up with his two older brothers and fighting like crazy to keep his spot as the “baby” when his little sister came along in 2017. Medically, Kellen was always a healthy child.

In 2017, Kellen started to exhibit some hearing limitations, however he never had the typical issues of recurrent infections that would be cause for concern. There were a multitude of treatments we tried to help Kellen but nothing worked. It was recommended that we have ear tubes placed which wasn’t too shocking because one of his older brothers had needed ear tubes at an early age as well. Shortly after that evaluation appointment, Kellen had his first procedure and had ear tubes placed bilaterally to assist with his hearing impairment. To our relief this helped and continued to help for 2 -3 years.

Over that time the effectiveness of the ear tubes faded. I noticed that Kellen had taught himself how to read lips in order to work with his inability to hear clearly. On one hand I found it truly amazing that this young boy taught himself a way to work around his disability. Yet, on the other hand, I was heartbroken to realize that he had been trying so hard to deal with this on his own. Of course, at this time COVID had become daily life, but for Kellen, it turned his world upside down. Masks made his life impossible and caused him a lot of anxiety. He was having difficulty hearing those who were speaking directly to him, which at the time Pat and I assumed was due to the masks muffling the voice of the person speaking, but it was more than that.

In July of 2020, Kellen started to show the same signs of struggle when it came to his hearing. I had been homeschooling during COVID and I started to notice he was reading my lips. We had him evaluated again and it was suggested to try a second round of ear tubes with adenoid removal. We did as was recommended, and things improved but only temporarily.

It had only been about 8 months and it seemed like Kellen’s ear tubes were failing again already. It was way too soon for the ear tubes to be losing effectiveness. Kellen was confused and a bit scared and as his parents it was our job to help him with this but it wasn’t making sense to us either. So, our first appointment was with his pediatrician, who referred us to a pediatric ENT out of Weymouth Massachusetts. Close to where we were living at the time. Kellen was evaluated and it was uncertain what we were dealing with, but the Dr. was sure ear tubes were no longer the answer. He referred us to a pediatric ENT at Massachusetts Eye and Ear in Boston MA. I took Kellen into Boston for his appointment with the specialist and he too was unsure of what he was seeing upon examining Kellen. We were sent down for an emergency CT scan of his head. We waited for it to be reviewed and to be seen again in the specialist office to review the results.

I’m sure you can imagine at this point things started feeling really scary, and the worry took over. As a mother I can’t help but think the worst and my son was so little. The specialist informed us that this was a very rare situation and that he had not seen it before like this. He was familiar with what Kellen was presenting with on his scans but he had not seen it in both ears and never this large in size. Kellen's scan showed he had what was clinically called bilateral cholesteatomas. He had destructive and expanding tumors in both ears. I truly believe God was watching over my boy because these tumors are not cancerous. As destructive as the tumors are he did not have cancer.

So, what comes next. These tumors grow and grow and can cause significant problems because they are erosive and as they grew they were taking up space and eroding the bones in the middle ear that transmit sound. Removing the progressive disease is the surgeon's first priority and preservation of hearing is secondary. The tumor in Kellen's right ear had grown so large it was millimeters from the facial nerves that control the facial functions on that side of his face. We were at a point where surgery needed to happen and fast.

We had to start on the right side due to the size of that tumor being larger and the location of it. On April 23, 2021 Kellen had his first tumor removal surgery. Kellen's outcome was uncertain going into surgery. Once Kellen was in surgery the doctor could get a much clearer picture of the damage caused by the tumor and if Kellen would have any hearing function post surgery on the right side. The surgery was almost 8 hours. The longest 8 hours I ever experienced. When his surgery was complete the doctor came to talk with us about what he found and what life after this operation would look like for Kellen. The doctor had to perform what is called a canal wall down Tympanoplasty/Mastoidectomy with a cartilage graft. Kellen would likely be completely deaf in that ear and had lost all 3 of the tiny bones in that ear that transmit sound to his middle ear as well as his ear drum. He was left with no hearing and he would have a very large scar behind his ear. However, I will explain that his surgeon is so incredibly talented and extremely passionate about his work. His title alone is quite impressive. He is the Director of the Multidisciplinary Pediatric Hearing Loss Clinic Division of Pediatric Otolaryngology at Massachusetts Eye and Ear Infirmary as well as the Assistant Professor of the Department of Otolaryngology at Harvard Medical School. He works tirelessly for his patients to have the best outcomes and during surgery he attempted to create a false ear drum for Kellen with a goal of producing any type of sound by laying a piece of cartilage on the footplate of the middle ear in hopes that it may heal and scar correctly to function. Miraculously, it did and Kellen was able to hear, very minimally but there was something. Something we never thought would be possible. But we didn't know this until some time later. It came as a surprise to us after the surgery on his left ear. Seeing him in the recovery unit was hard. He was sad and in pain and so groggy due to the medication and anesthesia. Absolutely helpless and no idea where he was or what was happening and so scared. I couldn't help him and I had to be the one to explain to him that he was going to be permanently near deaf in that ear. It was a really difficult experience. His recovery was so hard. He was in a lot of pain and managing pain meds and getting him to eat was almost impossible. He suffered with severe vertigo and he wanted nothing but to just hide away from the world and not leave his bed. Honestly to this day he still likes to sleep with his head under the blankets. I think over time it became a comfort to him. to be able to somehow block it all out. Seeing my little boy go through so much pain and struggle to recover was heartbreaking and we knew surgery had to happen at least once more to remove the tumor on the left side. And we knew we didn't have much time before the next operation.

On July 26, 2021 Kellen has his tumor removal surgery on his left ear. Going into this surgery I think Pat and I were a bit more hopeful. In a way we felt like we knew what the outcome possibilities were. What it could look like if the tumor was as bad as the right but we also knew there was a possibility it could be less damaging simply because it was smaller in size. The surgery was a bit over 7 hours. The time we waited while he was in surgery felt like an eternity. We met with the doctor after his surgery and he found the damage was a but less leaving Kellen with one of the sound transmitting bones. He had to perform the same type of surgery, a canal wall down Tympanoplasty/Mastoidectomy with a cartilage graft. Kellen would have minimal hearing in that ear because of the sound transmitted by the one remaining bone but due to the extent of the damage from the tumor there wasn't much else left. And again he would have a very large scar behind his ear. I was terrified going into the post anesthesia care unit to be with Kellen after this operation. Something that was weighing heavy on my mind was that after this operation there was a good chance he could be completely deaf and I wouldn't be able to communicate with him. All of this happened so quickly and I had not had the time to learn how to sign and Kellen had not either. He didn't want to. I think he was somewhat denying the idea that he was going to lose his hearing because learning to sign was out of the question for him. I walked in to see him knowing I wouldn't be able to speak to my son in order to comfort him. He was going to be scared and in pain and there wasn't anything I was going to be able to say to make him feel better because he wouldn't hear me. As I approached his bed I could hear the nurse talking to him and it almost made me angry. She was talking to a patient that couldn't hear. Shouldn't she know that???? She was talking to a little boy who just came out of surgery deaf. Why?........ I walked over and the only thing I could think to do was to place my hand on his chest so he knew I was there, and I leaned in and whispered "buddy, I'm here". I knew he wouldn't hear me but it was almost habit. He turned to me and said "Mommy, aren't I supposed to be deaf?" I was immediately covered in this warm feeling of shock and started to cry. I responded "what do you mean baby?" and he said " I can hear you a little". He could hear, not much but he could hear. With his left ear completely bandaged up and only his right ear exposed he could hear. That chance of a possible false ear drum the doctor placed during his first surgery healed perfectly and allowed him to hear something. My little boy could hear my voice and know I was there for him. My baby didn't feel alone in a quiet world. I was in awe and all I could do was thank God and lay on that stretcher with Kellen and hold him while I cried. His recovery was just as hard this time. The pain was just as hard to manage and he didn't want to eat and the vertigo returned. He was back to hiding out in his bed with his head under the blankets trying to block it all out. And this time he was recovering from surgery in the summertime which meant no swimming with 3 siblings and having a pool made him miserable.

After he was fully healed, Kellen started wearing an external hearing device, called an Adhere, behind his right ear that conducts sound through bone conduction rather than sound amplification like most hearing aids. Because he doesn't have ear drums the sounds have to vibrate through his skull. Kellen would have to be monitored at least every 6 months and have his ears cleaned in the office for the foreseeable future. At one of his visits, there was a conversation about the possibility of a hearing assisted implanted device. It's called a cochlear Osia 2 Implant. It would replace Kellen's external hearing aid but would require another operation. We talked at length with Kellen about the benefits of the device and what it could do that his current device couldn't and we talked openly about what the operation would be like. Much less involved, much more simple, and much shorter. At this point we left this decision up to Kellen. He had already been through so much and this was something we wanted him to have a say in.

In July of 2023 he decided he was ready. He had his device implant surgery on July 21st and another recovery that was really difficult. Although the surgery was more straightforward it was painful seeing as the device had to be drilled directly into his skull. However this time, Kellen started to struggle in a different way. He was depressed and his anxiety was out of control. He was having anger fits and crying for no reason. He couldn't express why he was upset. We started doing some research and found out that anesthesia can have really lasting effects on children. It's something called post anesthesia syndrome. It can cause or exacerbate anxiety and depression and even cause long term regression in children. The depression was probably the worst and he was just crying all the time. We sought help from his primary care and the problem with this is that the situation is very individualized and there is not a certain time frame or a certain way to treat it. The best thing in these situations is to treat the symptoms until they lighten up and can be handled without medication and the best thing is to avoid any other procedures that require anesthesia. We've been treating Kellen's symptoms and he is doing really well however, we now know he is heading in for another operation next month and we are extremely concerned about his mental well being as well as his upcoming surgery.

Kellen is heading in for another surgery on his right ear for a recurrent tumor on April 23, 2024. We do know that it is not as extensive as the first time but it has affected his hearing and caused him to be almost completely deaf without his hearing device active. As a family and as a parent this had been a really difficult road and we are praying this will be his final operation. We know that this too shall pass and we will get through this as a family and with our Faith. Prayer is a powerful tool. Thank you for your time and your support. We are eternally grateful for our friends and family and the support they have provided and the people we have behind us. We know we could not do this alone and we are truly blessed. With love and gratitude. - The Madigan Family.