‘THE INCREDIBLE LANDON’

Landon with his dad, Adam, mom, Jessica, and brother, Bennett. (Courtesy photo)

Landon with his dad, Adam, mom, Jessica, and brother, Bennett. (Courtesy photo)

Youngster who had brain tumor, surgery, on the road to recovery

In an Internet posting dated Jan. 11, 2016, a young mother reflected on what happened “two months ago today,” and about her family’s journey that has been “terrifying and miraculous and humbling.”

“I hugged and kissed my baby boy, trying to calm his fears,” Jessica Janiszewski wrote of their 5-year-old son, Landon.

“I held his hand and walked beside his hospital bed as they wheeled him down a long hallway. I walked with him until the nurses finally paused and said, ‘we’ll take good care of him – promise.’ I sobbed as I watched the doors close behind them, not knowing what our future held.”

As Landon’s family paced and prayed in a private hospital waiting room, the bright-eyed youngster underwent 13 hours of surgery – twice as long as doctors thought it might otherwise take – to successfully remove a golf-ball sized tumor from his brain.

“The procedures, side effects, risks, consent forms, survival rates, sacrifices … brings me to my knees,” Jessica later wrote in that same

Cover of Jessica's personal hardcover journal of Landon's ordeal. (Courtesy photo)

Cover of Jessica’s personal hardcover journal of Landon’s ordeal. (Courtesy photo)

Internet posting.

“I can’t remember a day when we haven’t cried together. But some days we cry happy tears, too. Like the day Landon first laughed after surgery. And the day we found out that his spinal fluid was free of any cancer cells. And the day he moved his arms. And then his legs. And began to communicate by nodding. All miraculous. All in a day in the life our our warrior – The Incredible Landon.”

‘OUR WORLD STOPPED’

One of Jessica’s very first Internet postings – minute-by-minute computer-shared chat that she eventually had published into a private hardcover book entitled, “The Incredible Landon” – was dated Nov. 10, 2015, at 7:21 a.m.

She wrote how their first-born son had been complaining of headaches, some so severe they “brought him to tears.”

Then, when Landon began to vomit because of the intense pain, his parents scheduled an appointment with their family doctor. At first, those medical tests came back normal.

“We pushed a little harder for further testing (mostly because I’m a worry wort) and had an MRI scheduled of his head and neck,” Jessica wrote. “Little did we know that MRI would be life changing.”
The MRI of Landon’s head revealed a tumor in the back of his head that measured about 1.5 inches in diameter.

“When Landon was diagnosed, our world stopped,” Jessica said last weekend as their family prepared to celebrate Christmas in Manistee.

“The thought of losing your child is indescribable. Our main focus was keeping our family of four together, no matter what it took. Our jobs and other responsibilities had to take a back seat.”

Almost immediately after her son was diagnosed, Jessica began to post on-line updated information on their son’s condition so that family and friends would know what was going on, what medical care he was receiving, what procedures would follow, time tables, sad thoughts, happy thoughts, and more.

Having been diagnosed with cancer in his brain the day after his 5th birthday, a team of doctors led by a pediatric neurosurgeon successfully removed the tumor from little Landon’s posterior fossa – the back of his head – on Nov. 11, 2015.

There are a half-dozen entries in Jessica’s hardcover journal from that date, beginning shortly after noon, and the last being entered at 11:37 p.m.

Landon relaxes with his mother, Jessica, and Grandma "Gus" of Manistee. (Courtesy photo)

Landon relaxes with his mother, Jessica, and Grandma “Gus” of Manistee. (Courtesy photo)

Those six entries made the day of Landon’s surgery are subtitled: “Slow and steady wins the race” at 12:49 p.m.; “More good news” at 2:21 p.m.; “Getting closer” at 4:32 p.m.; “Closing” at 6:39 p.m.; “Almost there” at 8:39 p.m.; and finally, “The most beautiful boy,” at 11:37 p.m.

Her final journal entry that day reads, in part, “… finally, after 13 long hours, we got to see our beautiful boy. We are so anxious to see those big blue eyes again and see his sweet smile. His doctors and nurses say he is doing really well. From what they could tell … they were able to completely remove the tumor. We are so unbelievably proud of our little superhero.”

Early the next morning Jessica wrote their son “… had a great night.”

“It is very scary to see your baby hooked up to so many tubes and machines,” she wrote at 8:33 a.m., Nov. 12, 2015. “He is stubborn and fighting hard. He’s amazing!”

Herself educated in the medical field, Jessica was able to take extra special care of him when she and her husband of seven years finally took him home, where she would provide around the clock care.

‘TEACH ME EVERYTHING’

“He would cry out constantly while we were in the hospital whenever any doctor or nurse would enter our room,” Jessica said. “We realized very quickly that he did not feel safe, or comfortable, when others came to give him his medicine, or to take his vitals.

“So naturally, I asked them to teach me everything so that I could take on that role and save him from the emotional turmoil. I had spreadsheets and a color coded calendar to help me keep track. He was taking close to 10 different medicines, plus daily injections and formula feeds through a nasogastric tube to help nourish his body.”

Jessica said while the surgery saved her son’s life, it also took many things from him, things he would have to learn how to do all over, again.

“Landon lost his ability to swallow, talk and walk,” she said. “It took over a month for him to regain control of his head, arms and legs, and it was over three months before he spoke a single word. He has had to relearn to do everything.

“I am so proud to say that his vocabulary has completely returned and he cognitively tests above his age group. He is now able to walk with the use of a walker, and is gaining more independence every day.

“He is still receiving about half of his daily calories through a feeding tube, but we have begun the process of weaning him from that and hope to get it removed very soon,” she said.

‘HE MADE US ALL STRONGER’

The Incredible Landon turned 6 years old on Nov. 3. He loves playing with Legos, monster trucks, and the video games Skylanders and

Landon recuperating in hospital following surgery to remove golf-ball size tumor from his brain. (Courtesy photo)

Landon recuperating in hospital following surgery to remove golf-ball size tumor from his brain. (Courtesy photo)

Minecraft.

One of his very favorite movies is “Planes: Fire and Rescue,” he enjoys books by Dr. Seuss, and for Christmas this year he asked Santa for a remote control car, a Nerf gun, a scooter, and of course, more Skylanders adventures.

Santa delivered.

Oh yeah, he affectionately calls his grandma, Jan Parker-Kartes of Manistee – Jessica’s mother – “Gus.”

“Landon has called her Gus since before he was two,” said Jessica. “That’s just the way it came out the first time, and it’s stuck ever since.”

“Gus” can’t help but break out into a big smile whenever she talks about her grandson.

“He IS ‘incredible,’” said Jan. “He’s made us all stronger, all better. What he went through, no child should ever have to go through, but he stayed positive. For as little as he was, he was always positive.”

Adam, who graduated from Manistee High School in 2004, is 36 yrs old. Jessica (Parker) is 30 years old, and their youngest child – Landon’s little brother, Bennett – is 2 years old.

The family lives in the Grand Rapids area, but still has strong ties to Manistee, and returns as often as they can.

“Hands down, my favorite memories (of Manistee) are of the beach,” said Jessica. “Summertime in Manistee is hard to beat. We lived at the beach growing up, and living so close to the lake was something I definitely took for granted. I love that I can share that with my children now when we come up to visit.

“I’ve also made sure to keep the Sleighbell Parade a tradition for my boys – there is just something so magical about spending the Victorian weekend downtown.”

COMMUNITY SUPPORT ‘INCREDIBLE’

Landon and his 2-year-old brother, Bennett, play in a pile of leaves this past fall. (Courtesy photo)

Landon and his 2-year-old brother, Bennett, play in a pile of leaves this past fall. (Courtesy photo)

“Our employers have been absolutely wonderful, and the support we received from surrounding communities has been incredible,” said Jessica.

“People that have never met us, or our little warrior, have given everything they could to help. Manistee County businesses hosted fundraisers and donated so much more than just time and money – they also gave us their unconditional love and prayers.

“We are forever grateful to all of them. They all helped to get our family though this difficult journey.”

The family had just two books of Jessica’s journal published, one for them, and one for Grandma Gus. With a full-color photo on its cover of “The Incredible Landon” smiling and giving a thumbs-up gesture, the book is 64 pages in length and features 64 full-color pictures, and 52 journal entries.

Jessica’s final entry in that journal is dated Jan. 21, 2016.

“After 6 ½ weeks, 30 days of radiation treatments and low dose chemotherapy, 15 Neupogen injections, two blood transfusions, three NG tube replacements, two ER visits, radiation burns, nausea and vomiting, countless tears – he did it!” Jessica wrote of their son’s progress.
“Our miracle boy defeated all odds and continued to progress each day, all while enduring such intense treatments. We start round 1 of chemotherapy on March 7 (2016).”

Unbelievably, Landon began kindergarten this past fall.

“He’s in regular public school full time and absolutely loves it,” Jessica said. “He has a para-pro who works with him in the classroom to help modify any activities they may be doing, but he actively participates in gym, recess, music class – all of it.

“He amazes us every single day.”

Jessica said Landon’s latest medical scan, which was done just a few weeks ago on Dec. 15, showed no evidence of any disease – he remains cancer free.

What future treatments are in store?

“Landon will need regular MRIs to check for any recurrence of tumor over the next five years,” said Jessica.

“Based on the genetic make up of his tumor, his successful surgery and his positive response to treatment, Landon was given an 85 percent chance of being cured of his cancer. We are forever grateful for the staff at Helen DeVos Children’s Hospital for their dedication to our baby boy.”

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Posted by David L. Barber

David L. Barber is the retired editor of the Manistee News Advocate. He contributes columns weekly for the News Advocate. You can contact him at dlbarber1006@gmail.com.

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