Quinn's First 4 Years...A Recap

Okay,I know I have been slacking with this blog BIG TIME. I have heard you and I am finally doing an update on little man, after this recap.

Quinn is currently 4 years and 3 months of age.

For those of you new to the Mighty Quinn's journey he was born with a rare disorder called PHACE Syndrome,part of which included a very large segmental hemangioma (a vascular tumour)on both the outside and inside of his right face and head. He also has/had a number of internal ones including one in his brain.

Shortly after birth Quinn began having violent seizures which led to an airlift to a major children's hospital in Southern Ontario (far from our home)and the diagnosis of prenatal stroke, likely caused by two congenital heart defects called atrial septal defects(holes)which before birth allowed a blood clot to travel to his brain destroying a large portion of his left parietal lobe.

From Quinn's Journey With PHACE Syndrome,Hemangiomas, Autism and Stroke

From Quinn's Journey With PHACE Syndrome,Hemangiomas, Autism and Stroke

From Quinn's Journey With PHACE Syndrome,Hemangiomas, Autism and Stroke

From Quinn's Journey With PHACE Syndrome,Hemangiomas, Autism and Stroke

From Quinn's Journey With PHACE Syndrome,Hemangiomas, Autism and Stroke

From OUR GILDED BUTTERFLY AND THE STORY OF HOW HE LEARNED TO FLY

From SURGERY PICS

From New York

From Quinn's Journey With PHACE Syndrome,Hemangiomas, Autism and Stroke

From Quinn's Journey With PHACE Syndrome,Hemangiomas, Autism and Stroke

The hemangioma(s) began an aggressive period of growth at about 6 weeks of age, putting strain on his heart and threatened vital functions such as eyesight,hearing and feeding. At 4 weeks of age Quinn completely lost his right upper lip halfway to his nose due to tissue breakdown (ulceration)caused by the rapid tumour growth. Over the year that followed he continued to have these extremely painful ulcerations causing life threatening infections (MRSA),constant hospitalizations and led to significant scarring and disfigurement.

Quinn was treated with high dose steroids and twice weekly chemotherapy beginning at 2 months of age. At 6 months the steroid treatment was discontinued due to an adverse side effect on his heart (since resolved)

During Quinn's year long treatment with chemotherapy (Vincristine) he faced several serious complications including a life threatening break of his PICC line (central line, IV implanted surgically in his arm, into the neck and the end of which sat just inside his heart.

At 6 months of age that line broke (very rare) and part of the tubing traveled into his heart and lung. This complication was extremely serious and he was airlifted to a children's hospital 8 hours south of us for emergency surgery.We are thankful for the quick thinking of an amazing surgeon who was able to remove this from his heart via his femoral artery instead of having to "open him up"

Much of Quinn's first 15 months of life focused on his very complicated hemangioma. Treatment for him was complicated and consisted of much trial and error as doctors struggled greatly to get this potentially lethal vascular anomaly under control.

While many people have questioned why we did not seek reconstructive care for our child early on, the answer is simple. We wanted him to survive. His facial differences were not an issue for us. Keeping him alive was paramount and we knew that once his health was "stable" (by age 1 the child had narrowly cheated death 4 times)

We were comforted by the fact that during the peak of our son's health issues he was extremely healthy, happy and outgoing. He was seemingly unaffected by the extreme nature of his entrance into this world. Despite a stroke, a brain malformation,brain tumor and highly toxic medications his development was progressing forward and we were looking to the future.

We started looking into beginning treatments/surgeries to reconstruct the damage the hemangioma had done to his face but ran into numerous road blocks trying to get these services for him here in Ontario.

When a very concerning drug was suggested for Quinn we decided to take Quinn to a specialist in the US for another opinion.This drug had very serious possible side effects which were even more concerning for a child who already had a very serious and complicated neurological history.At this point he had been on chemotherapy for one year and we were concerned because he was having some potentially serious side effects. We wanted him off toxic drugs and hoped for an alternative.

The doctor we saw in NYC, one of the best in the world and deals daily with conditions like Quinn's...was the first to give us real hope. While doctors we are eternally grateful for, saved his life, they were unable to give us the hope we needed that Quinn would one day be able to walk outside of his house and not be stared at or called a monster (a whole other story,a very long one of 4 years of comments, stares and accusations).

This doctor was confident that Quinn would respond to laser therapy and down the road,surgical intervention. We left his office elated....until we realized that these services are not generally available in most of Canada. When these types of intervention are implemented it is often in later childhood. Earlier intervention typically does not exist. Why, again that is a complicated question and while I have a lot to say on that topic, I will leave it at that for now. To sum it up, we just do not have the doctors who specialize in the care of children's vascular anomalies, surgical wise, ones that do this on a daily basis. Children either have to live with significant deformities hoping one day surgeons will decide to help, or they can go to the US. Going to the US has a big issue attached,cost. It is rare to have a provincial government fund these surgeries so families are often forced to pay out of pocket and most do not have this kind of money. Our certainly does not.

We decided that we would first attempt to get services for our son in Canada. Knowing past history and the high rate of failure I decided I was going to do whatever I could for my son no matter who hated me by the time we were finished.

We were fortunate to have the support of my sons pediatric dermatologist who agreed to refer him for laser surgery to help kick start the regression of his hemangioma in hopes that he would be able to begin the process of reconstruction in time to begin school. Not having proper function of the eyelid area and lip (affecting everything from speech to eating) we hoped for the best.

Nobody thought that the laser would work, including the surgeon who performed it. Nobody that is but that amazing doctor in the US who took one look at him and said, get him laser, it will help him. We took those words, words from one of the best and decided not to take no for an answer. I pleaded with the surgeon to attempt 3 treatments and she agreed because she truly wanted it to work.

And work it did, and fast. Quinn blew everyone away with how fast he responded after struggling so hard for so long just to get the damn thing under control, suddenly the tide changed and things were looking up for him. With the regression of the tumor beginning, he was on the road to recovery for the tumor. Other health issues abounded but this was a very big beginning. Yes it is true it began to "look better" but this was just never what really mattered. It mattered to many people but not to us.

When Quinn was 15 months of age, I think I actually began to exhale. His hemangioma was no longer life threatening, there had been no more strokes,the holes in his heart were closing and his seizures were happening with less frequency. His health was still not great and there was far to go but there was so much reason for hope and celebration. Most of all the child was so incredibly happy and engaging.

That all changed one day in October 2007. While his seizures for the most part had been nocturnal in nature, he had a very odd one while sitting on my lap at a therapy session. That morning had started off extremely rough, with him screaming out of character. I was beside myself with worry over what the possible cause was.

He was admitted to the hospital after 3 straight days of this screaming and holding his head and was diagnosed with migraines, another lovely side effect of PHACE and hemangiomas (though still being researched)

We took him home on Halloween and began to see a very different Quinn. He stopped smiling, stopped making eye contact, stopped making any sounds (except screaming) and the utterly beautiful twinkle he had had in his eyes since birth, completely disappeared.

I was terrified and was screaming at anyone who would listen (well those who would not as well) that something was very very wrong. This was not the child we knew. Our child was happy despite living through over a year of hell. He was happy and engaging. This child disappeared an was replaced with one who had a blank look in his eyes and did not respond to ANYTHING.

Not long after this began I said it out loud to a professional. "You don't think this is Autism do you" I had seen it so many times in my work with children with Autism and it was beginning to eat at me. I brought it up to a number of his specialists and they all said the same. "No way" this child cannot have gone through all that he has only to develop Autism suddenly, just when it looked like things were looking up for him. I wanted to believe this more than anything, but I couldn't. Who knows a child more than his mother or father?

On Christmas Day 2007 Quinn sat in front of his presents staring into space. his body was there but he was not. I looked at him trying to get his attention and watched at his began to flap his hands in a way that to me screamed Autism. It was a stereotypical self stimulating repetitive behaviour. And then later that day he walked over to the closet in the hall and proceeded to open and close the door for an hour and a half. My heart broke that day because knew 100% that my child had had an Autistic regression. We had lost our child for all intensive purposes. We had fought to keep him alive and won but now another disorder was stealing his personality.

My worst fears were confirmed 2 weeks later at a series of visits with his specialists. I pleaded with them in tears to tell me I was wrong, that it was not Autism and that there was some reason why this was happening, that there was a solution. Anything but Autism. Having worked intensively with children with Autism for many years it was truly one of my biggest fears. These amazing doctors who had fought to keep my child alive and well were visibly shaken as we discussed Quinn's future.

Quinn was referred for an Autism assessment and we were horrified to find out it would take up to 2 years to have him seen. Given the rate of regression he was having I was mortified and was determined to make someone listen and not wait. I became obsessed with getting him help and with the assistance of one amazing doctor who backed me up I manged to get him an assessment within 2 months. Thank God.

In the two months prior to his Autism assessment, in the spring of 2008 we had a couple of important appointments with a pediatric plastic surgeon. by this time he had had 3 laser treatments and his hemangioma was about 90% regressed on the outside and was shrinking rapidly on the inside. It was what we had hoped for because we had been told previously that was needed in order to make the decision to do the reconstructive surgery.

We went into an important appointment that spring hopeful that we would get him the help we needed. The doctor that day referred him to an associate he thought might be better equipped to deal with the complex nature of his lip reconstruction. We had never met this specialist but tried to remain hopeful.

The day of the appointment I was a mess. I just had a horrible nagging feeling it was going to go wrong. And it did, big time.

This "doctor" and I use the term loosely told us that Quinn's facial deformity was not noticeable from far away. My jaw dropped, I was mortified. Wasn't this man supposed to help children. His rudeness was overwhelming but it was only the beginning.

He proceeded to tell me that had Quinn's face been deformed by a cancerous tumour he would do the surgery. WHAT, I could not believe what he was telling me. My child yes, did not have cancer but he did have a very serious life threatening journey with a tumour, AND went through chemotherapy too. Did he not deserve the same chance at a normal future? Could this man be possibility discriminating against my child. I had no idea what to think. I turned my back to him fearing I would lose it.

Then he dropped the bomb that said it all. "Your child has Autism. He will never know that his face is different. There is nothing I am prepared to do for him" At that moment all the incidents of watching my son look in a mirror and scream flooded me with emotion and rage.Quinn knew DAMN well that his face was different and he deserved help just as much as any other child. With so many obstacles in his future, how, why what could possibly make this surgeon, sworn to help children, act in such a callous and insensitive manner???

We got up and left before I was arrested for doing what I was thinking. We were devastated and broken and defeated. Then I became livid for reasons I am sure I do not have to explain.

I retreated to my safe haven, an online community of parents living with vascular anomalies and I told my child's story. I hesitated fearing backlash from anyone related to his case who might read my words but I decided I did not care. What this doctor had done and said was repulsive and I was not going to keep quiet.

The support we got was amazing, people were appalled, supportive and urged us to take him to the US but we knew it was going to be a long shot because we did not know how we would ever raise that kind of money.

I tried contacting every major news outlet in Canada. I was prepared to tell his story, to do anything I could to help him but we never got a response. It was devastating. I felt like nobody was ever going to help my son.

Then I got an email that changed everything. It was a message from that same doctor in NYC. He wanted to help Quinn and would do whatever he had to to make it happen. We were floored by his generosity and kindness and thankful beyond words that this man, one of the very top in this field wanted to help our son.

We got a call not long after from a woman who was in process of forming a foundation in this doctors name and was planning to help families in our situation get the surgeries our children needed. We were flabbergasted by this kindness. She promised us that we would find a way to make this happen, however long it took.

There is a lot that goes into planning the surgery of a child like Quinn and in his case much more because the foundation needs to have the money to cover the significant costs involved in having the surgery done,more fees than you can possibly imagine and a lot went into trying to secure discounts from the hospital before this could happen.

This foundation worked so hard to secure this assistance for Quinn and thanks to the kindness of all the selfless people who donated to the foundation, the foundation who earmarked funds for Quinn and the two phenomenal doctors (Dr Waner and Dr Fay)who waived their fees enabling Quinn's first two surgeries to happen....Quinn had his first 2 surgeries in the summer. Thanks to the kindness of many family, friends and even strangers we were able to raise just enough money to get Quinn to New York for those two surgeries. We can never thank everyone involved enough. Words are just not enough.

Our son, the same one who certainly was aware of his facial deformity, looked in the mirror after his first surgery, preliminary lip reconstruction and removal of an orbital hemangima and fraxel laser, and smiled for the first time in over a year. Through stitches and dried blood he saw something that changed him that day. Our non verbal child spoke very loudly to us that day. Through his smiles and giggles we had not seen in so long, he told us he was happy. Dr Waner literally and figuratively gave Quinn his smile back and kick started a period of positive development and recovery from the regression that had taken him from us, at least spiritually.

On that first trip to New York, Quinn began to smile again, and he did not stop, and has not stopped since then. While some may question the timing or if it was coincidence, we know. We know what made a big change in our child's life.

Fast forward a year later....at a check up with Dr Waner and Dr Fay in May, they were thrilled to see his progress in the year since those two surgeries. They still have quite a bit they would like to do to help him out and we are very hopeful that Quinn's outcome will be a good one. When the day comes when he is able to have these surgeries we know that his life will begin a new chapter, one free of hemangiomas. It will be a long road with many obstacles but one major one will not be there. With so many other obstacles putting him at risk this will help give him a chance at some normalcy, at least the chance at a normal appearance, one that he is on his way to having. After years of horrible comments, stares, crying by children who seen him, being called Scarface over an over and a "monster" there is hope. The day that this part of his journey comes to an end will be a beautiful one.

Medically things are not quite as certain and periodically I am reminded of the fact that he does have a rare and potentially life threatening disorder. Previously life threatening we are aware in the back of our minds that we can easily be back there at any time, but we do not live life in fear of it. Every day we have with our amazing child is a blessing beyond words.

Autism is a very big part of his life, all of ours and always will be, but it is no longer heartbreaking. He has been to the bottom and has clawed his way up and will continue to. Quinn has come leaps and bounds from that time where we "lost" him. He is finally at 4 years of age beginning to say appropriate words and we are confident that our child once labelled non-verbal will one day break his silence once and for all.

Quinn's story, his first 4 years is a long one and this is but a glimpse into that time. We share his story not to have anyone feel sorry for him. We do so to inspire hope for other families affected with any of the disorders Quinn has. He is a true and absolute blessing in every way.

***EDITED TO ADD....

I want to mention something very important and that is that we owe an extreme amount of gratitude,praise and thanks to the many specialists and health care team members at the children's hospital my son has been treated at this past 4 years.

The issues we had with one particular doctor are SEPERATE from the care that was given to him by so many and was beyond their control. The decision not to help Quinn was made by one doctor, not familiar with his case and was unfortunate. Never at any time did we experience this with those involved in his care. They saved his life and advocated for him against so many odds. He is here today because of their expertise, care and love.