Henrik Lewis Henrik the Brave

First post: Oct 2, 2014 Latest post: Jun 26, 2020
People have asked how they can help. Our biggest request is for PRAYERS. Please pray that Henrik is CURED, fully, and lives a long life. 

Henrik's story. I think it may be easiest to to copy and paste a recent blog post that I made. 

Spring of 2014. Our ten year old amazing son began complaining of headaches and spots in his vision. Being a nurse and a migraine sufferer, I thought he too was cursed with them. I had already called to schedule en eye exam, figuring it couldn't hurt. During the week wait for that exam he began falling asleep mid-day and acted confused when I'd wake him up. He'd also started standing right in front of the TV to read subtitles and gaming instructions. 

We were rushed from the optometrist to an adult retinal specialist in Edmonds, who waited after hour to see Henrik. We were sent from her office directly to Seattle Children's ER, where they sent Henrik for an MRI of his head and spine. 

Late at night on May 2, 2014, my husband I were led to a small room with a small desk and a computer monitor. On the walk to that room, I already knew it was bad news. They had asked us to leave our son’s bedside and to go with them. During that walk, the ER room doctor said “the MRI was positive.” I think that’s when my legs first began to go numb. With a medical background, I knew full well that in this case “positive” meant “horrible.” Once inside that small room with large glass panels, as soon as I sat, the doctor said the words that made the world fall from beneath me. “We found a mass.” My husband was standing behind me. I know none of what they said made any sense to him. The medical world was completely foreign to him. The sounds that erupted from me were surely inhuman and I’m certain heard by many that night. On May 6th our ten year old son went through his first brain surgery to relieve hydrocephalus that was caused by his tumor. On May 14th he went through more than 8 hours of surgery to remove the tumor itself. At the end of that day, we were told that the tumor was too entangled in blood vessels that are critical to life to fully remove. In fact, they had only been able to obtain a small piece for biopsy.

About a week later we went in for biopsy results. We were overjoyed at first, hearing that his tumor was BENIGN! An answered prayer, so we thought. Our high hopes were promptly crushed when the oncologist explained that because it is considered “normal tissue” (benign, skin tissue) chemotherapy and/or radiation would be ineffective. That bought our son MRI scans every 3 months, extra lab work, and lots of monitoring by ophthalmology, neurosurgery, and oncology. We knew he’d need surgeries throughout his life to debulk the monster in his head. We never imagined that next surgery would be only 13 months later.

Spring 2015. We celebrated Henrik’s one-year-survivor status in Maui. May 2-11th…just relaxing in the sun. We came home and went in for his routine MRI on May 20th. He was also seen by ophthalmology. His hydrocephalus prior to being diagnosed has left him nearly blind in one eye, and that eye had started to drift outward fairly significantly. Oncology met with us after his scan. Between his eye drift and some other more subtle symptoms, and the news that his tumor had suddenly grown, we prepared for surgery.

On May 17th, we checked in to Seattle Children’s Hospital. Due to tumor location, the surgery was due to be long and difficult, and very risky. They began working on him late morning and we were told to prepare for surgery to last into the night. When we got a call around 4:00 pm that they were done, my husband and I were both crushed. We both assumed they had given up. By about 4:20 we went to meet with the surgeons. I thought it odd that they were there waiting for us, since we had always had to wait for them. Once one of them began talking, the world around me blurred and all I could see was that doctor’s face. Tears streamed down my face. Tears of joy. They told us that initial pathology identified a different type of tumor. Germinoma. I knew what it meant. Our son’s tumor is now malignant. Cancerous. And highly curable with radiation and chemotherapy.

Once Henrik woke up and was able to understand, my husband told him the good news. I had the pleasure of reminding him the next morning, as grogginess had kept him from comprehending the full story. Like us, he cried tears of joy. It feels so incredibly WRONG to be thanking God for this miracle. How can we possibly be celebrating our son having brain cancer? We hate that he’s going through this at all. But now we can actually FIGHT BACK.

It’s bound to be a very long summer & fall filled with chemotherapy and radiation. We are so lucky for so many reasons. So very blessed. Henrik's cancer stands a good chance of being cured and not returning. 

Fall 2016:  It's been one year since Henrik finished cancer treatment. It's not always the easiest road, but he's walking it well. His hair has grown so much and has kept his "chemo curls," which often relax or go away after about six months. He refuses to let me trim it, and I'm not about to force the issue. He's lost his hair too many times from surgeries, chemo, and radiation. He's still blind in his right eye, and we know he will be. His optic nerve was just too damaged to recover; we're so very glad his sight in his left eye has been mostly spared. He's also had some mild hearing loss from chemotherapy, but fortunately it's high frequency (think dog whistle) and not normal speech frequency. He has some issues with fatiguing easily after increased activity (ie a busy weekend). We really need to let him lead the pace so encourage him gently. The truth is he's had a brain injury (the nature of the tumor and three brain surgeries) and he may have an issue with fatigue for life.  He's being followed every three months still - MRIs, endocrinology, and ophthalmology every six months. Because his benign teratoma underwent a malignant transformation, we were able to kill the malignant portion of the tumor and so far there's no sign of it returning. He still has benign teratoma, cysts, and scar tissue that we'll always have to watch closely.  Someday we hope the leftover monster in his head will be stable enough to move to MRIs every 6 months and eventually every 12 months. He'll need an MRI at least yearly for the rest of his life. There's a high likelihood that radiation damaged his pituitary gland, which can affect growth. It's around now, the year post treatment point, that we're likely to see blood work indicate this. So far his blood work has been "normal" for his age, but with his last draw almost three months ago we did see his cortisol level drop to just barely normal. Eventually he may need medication for that and also possibly his thyroid. If he begins to stall out in height, we'd be given the option of growth hormone injections daily. Growth predictor programs based on parental height place him at 6'6" for an adult height. He's already 5'5" and we've talked to him about growth hormone risks. We've decided to not do growth hormones if the time comes. There's a risk of them causing the remaining teratoma to grow. He agrees it'd be better to be a bit short than to have the monster in his head grow.  He's growing into an incredible young man. He'll be a teenager in a few months and acts it. 

CaringBridge is a nonprofit social network dedicated to helping family and friends communicate with and support loved ones during a health journey. Learn more about CaringBridge.

To interact with Henrik’s website, sign in or register today.

By registering with CaringBridge, you will join over 300,000 people a day who are supporting friends and family members.

Sign In Or Register