News

Living like there is no tomorrow

Living like there is no tomorrow is a great motto to embrace when facing something as terrifying as a brain tumor. Jiry

Posted on 5/30/15

By Melissa Anderson

For 9 year old Jiry Rosencrans and her family, finding out what was wrong with Jiry was as frightening as not knowing. On May 4, doctors discovered a very rare tumor called craniopharyngiom on a MRI. In Jiry’s case it was even more rare as the tumor had grown up into her brain, damaging her pituitary gland, adrenal gland and thyroid. Although it is not cancerous, the tumor is likely to grow back even though it was removed during a high risk surgery on May 8.

“Jiry is a very amazing kid. She is very positive  and has not felt bad for herself being faced with life long and life changing events,” Jiry’s mother, Bri Rosencrans said.

The journey in finding out what was wrong and ultimately having the tumor removed began in 2008 when Jiry’s growth suddenly stopped. Coupled with problems with her speech, balance and other fine motor skills, Rosencrans knew something was wrong with her little girl.

“I would take her to doctor after doctor searching for answers,” Rosencrans stated.

After visiting what seemed like hundreds of doctors and having each doctor be unable to determine what was causing the stunted growth and motor skill problems, Rosencrans continued to search for a doctor who could diagnose and treat the 40 to 50 symptoms that Jiry exhibited.

“I did a lot of driving, research and begging for someone to put this 1000 piece puzzle together before my daughter died. I truly felt each night as I lay beside Jiry that there was something terribly wrong, and I was losing hope on which doctor would believe me,” Rosencrans said.

One day Rosencrans called Dr. Ramesh Mishra, a pediatrician at Altru in Grand Forks, explaining to him everything that was going on with her daughter. Rosencrans brought her daughter to Dr. Mishra and pushed for an MRI to be done. On May 4, the Dr. Mishra called Rosencrans and told her the MRI results. It was a golf ball sized brain tumor growing into both hemispheres of Jiry’s brain and had already caused massive damage to her pituitary and adrenal gland as well as her thyroid. Both of Jiry’s optic nerves and an artery were wrapped up in tumor as well. The optic nerve for Jiry’s left eye was also damaged by the tumor.

“Dr. Mishra called me immediately and said I need to be prepared to be in Mayo, Fargo or Minneapolis right away in the morning cause he only knew of three surgeons that had performed surgeries on tumors like Jiry’s but those tumors were not as rare. Whoever could see her first is where we needed to be right away Tuesday morning for surgery. He called me back and said  to be in Fargo at 8 a.m. to talk to the team that was being put together,” Rosencrans stated.

“I spent over six years looking for answers. The surgeon here found a scan of Jiry’s head from 2009 that showed the tumor then, and no one told us. That’s very frustrating as a lot of what she has had to go through could have been avoided,” Rosencrans continued.

Jiry underwent a craniometry surgery to remove the tumor. The surgeons removed her upper left orbital bone, giving them more room to work and replaced it with plates and screws. The surgeons also took out a bone that is behind the eye and leaving it open in case she were to have pressure or swelling, which would allow her brain to have some more room. They also cut out a large, palm sized portion of her skull for the surgery which was also replaced with plates and screws.

“Her bone won’t fully grow together so she will need to wear a helmet for recess, phy- ed, figure skating, volleyball etc.,” Rosencrans said.

The surgeons used a 3D image of Jiry’s brain that was created through tests and scans to assist them in the surgery. The image was then put into a GPS that helped  guide the surgeons during the surgery in an attempt to minimize complications and risk. The scope went up through the throat into the brain while they used tools through the skull to remove the tumor. They also had to cut her jaw muscles to manipulate her jaw in order to gain access through her throat. The muscle was then stitched together and Jiry is doing exercises to regain full use of her jaw.

One of the possible outcomes Jiry and Rosencrans faced was Jiry being blind. Up until the evening of the surgery, it was expected that Jiry would completely lose her vision in her left eye  while her right eye maintained most its ability. The risk of stroke was also high due to the artery going through the tumor. The surgeons were able to remove the majority of the golf ball sized tumor but could not remove the lining of the tumor due to the risks. In this way they saved her vision and the hypothalamus was not disturbed which would cause a lot of disorders.

Jiry came out of surgery with no stroke, her right eye is fine, and she has some vision in her left eye although it is yet to be determined how well until her appointment with the neuro-opthamalogist.

“We are not sure how her vision is yet. She can see, but how well is what we do not know,” Rosencrans said.

The future outlook for Jiry is very difficult to face as the tumor which caused so much damage to her developing brain may come back. The tumor destroyed the gland which produces the human growth hormone(HGH) and now Jiry must take supplements in order to develop normally. The HGH which will help Jiry grow will also encourage the tumor to grow again since the risky surgery was unable to remove it in its entirety.

““I am highly concerned about it coming back since that’s what all the doctors and surgeons tell me. And the HGH hormones she will take daily increases the chances,” Rosencrans stated.

The oncologist and surgeons advised Rosencrans that radiation therapy is necessary for Jiry and should be started within the next few weeks to try and get the rest of the tumor. The problem is the optic nerves are highly likely to be damaged by the radiation therapy.

“She went into surgery knowing her left eye would be sacrificed in the surgery. She was fine with that but it wasn’t sacrificed thanks to the neuro-opthamalogist that hopped on board the night before surgery. But now with doing radiation she could lose sight in both eyes but hopefully destroy the tumor,” Rosencrans explained.

Jiry will meet with her oncologist to discuss radiation therapy on June 25th at the Roger Maris Cancer Center located at Sanford Medical Center in Fargo.

For now, Jiry has been undergoing physical, occupational and speech therapy which is going far better than what Rosencrans and Jiry were prepared for prior to her surgery. At time of print Jiry had some right side droopiness and weakness but with the help of therapy she should recover most, if not all her strength.

The prognosis for Jiry is full of many challenging medical conditions that most would never develop, let alone have them all. Jiry will more than likely develop some difficult medical conditions associated with the pituitary gland, adrenal gland and thyroid as a result of the destructive tumor. In addition to the conditions, Jiry will also be unable to regulate her body temperature and her body will not be able to fight off germs causing her to be on steroids.

“If she gets a cold then we have to triple the doses[of the steroid] to help her avoid being hospitalized with pneumonia,” Rosencrans explained.

One of the more concerning conditions that Jiry will more than likely develop is Central Diabetes Insepatis(DI). This is different from the more commonly known Type 1 and 2 diabetes. It must be watched very closely with the necessary medication given when needed otherwise Jiry’s sodium could get too high or low, causing seizures.

Overall, Jiry’s life has changed drastically within the last month. She went from traveling all over with grandparents and staying over at friends’ and brothers’ houses to not being able to do any of those things unless her mother is with or Jiry herself knows how to keep track of her symptoms of DI and treat accordingly. Jiry can no longer go on camping trips, travel, or even  participate in field trips unless Rosencrans or a trained person goes with Jiry to ensure her safety.

“Her freedom has decreased and she has to be very careful with activities.  She will probably be needing modifications at school and other areas of her life. Everyone involved in her life will need to know how to react in an emergency since she can go downhill fast,” Rosencrans stated.

With so many constant threats to her life, Jiry must be very vigilant when it comes to her body as she could suddenly have a change in her condition. A safe guard that has been put in place is a letter of treatment that can be provided to doctors where ever Jiry is taken in the event of an emergency so the unfamiliar doctor will be able to treat her properly. Along with the letter, Jiry must always wear a medical i.d. either as a bracelet or necklace with similar information should an emergency occur.

“She is such a positive person that is so brave and strong that with her having to modify what she can and can’t do, she will find a positive in it somehow,” Rosencrans said.

Jiry came home from her extended stay in the hospital on May 22 to over 40 cards and letters of support. To try and return to some normalcy, the 9 year old plans to get back to school. Rosencrans stated that the hope is have Jiry return in the fall to Langdon Area Elementary School.

“Right now she is testing out at a kindergarten level so she has a lot of work to do this summer so she can be caught up to the 5th grade level that she will be entering,” Rosencrans explained

Rosencrans wishes to thank the school, Mr. Mitch Jorgensen, all the teachers and Jiry’s schoolmates at LAES. The school has been a major means of support for Jiry. Prayers, emails, uplifting and cheering phone calls for Jiry over the past 17 days have made the experience a little easier. The faculty and students also raised money to help with travel, meals, future motel stays and other things not covered by insurance and for clothes.

“She has never gone school shopping for clothes cause she never grew due to the tumor. So she has clothes from when she was 3 years old that she still wears,” Rosencrans explained.

Jim Rademacher and family as well as Michelle Aastad for doing all the chores and keeping all the pets happy and safe.

“They have went above  and beyond in helping us,” Rosencrans said.

Special thanks to Karl Ingulsrud for taking time off of work and farming to help us everyday and Danielle Skaar P.A., for never giving up and going above her call of duty for us.

Other thank yous include the Cavalier County 4-H and Macine Lukach for the gift of money and the beautiful blanket for Jiry. The Rosencrans’ family for being there for Jiry before and after surgery and again when she had seizures. Pastor Berge of Bottineau and Pastor  Craig of Hampden for leading them in prayer and the visits.

“So many people have been very kind and sent words of encouragement and prayers. Many have kept in touch to help spread the updates around,” Rosencrans explained.

Rosencrans is in awe of how strong her daughter is as she didn’t let this get her down. For Rosencrans that says a lot about Jiry’s character. Jiry told Rosencrans that she didn’t realize so many people knew her or loved her.

“She asked me what she did that makes these people say such nice things to her. She feels blessed by the support and hopes to be back at school as good as new,” Rosencrans said

For Rosencrans, finally finding out what was wrong with her daughter was not what she expected it to be.

“I am doing okay. I’m really bothered by the fact that she went undiagnosed by so many doctors. No parent should have to go through so much turmoil while searching for answers. All the pieces were there,” Rosencrans stated

“Now we have the answer. Jiry kicked butt on the only solution and now we are moving forward with a new way of living. We are scared, excited, emotional, and so blessed to have so many great people in her life. I’m speechless,” Rosencrans continued.

If you would like to help support Jiry and her family as she goes through this difficult time there a few ways that you can help. There is a Go Fund Me account set up for Jiry in regards to travel expenses and things not covered by insurance as well as a few things not covered by insurance that she medically needs.

There is also a T-shirt that can be purchased and worn in support of Jiry with funds going to travel and medical expenses not covered by insurance. If you are unable to provide a monetary donation feel free to send cards or letters of encouragement to Jiry at:

Jiry Rosencrans,

9982 78th St NE

Edmore, ND 58330.

The Go Fund Me page can be found here:

www.gofundme.com/uvquzc

The tshirt fund can be found here:

www.tfund.com/Jiry?fb_ref=Default