By Ryan Gueningsman
DELANO, MONTROSE, MN A strong support system of family, friends, and community is helping Connor Menard and his family as Connor fights a rare disease called Hyper Eosinophilia Syndrome (HES).
“Kids are resilient and, through this, we can definitely say that about Connor,” said his mother, Jill Menard.
Connor’s parents, Jill (Hoy) and Matt Menard both grew up in Delano and graduated from Delano High School. They now reside in Montrose, where Matt is Chief 3 of the Montrose Fire Department as well as the emergency management director for the city. Jill is the treasurer of the Forest Creek Homeowners Association and a co-founder of the Tree Walk for Charity, which is a local charity event that takes place in November each year.
Connor was born in 2008, and Matt and Jill’s family was complete when daughter Caylee was born in 2010.
Until February 2012, Connor was a perfectly healthy little boy.
The Menards’ journey began that month when they went to the doctor for a visit regarding some belly pain issues Connor had been experiencing for a fair amount of time. A test showed Connor’s eosinophils were high. The job of eosinophils is to ward off and fight infection, according to Jill.
The average range for the eosinophil count in humans is 1-5. Connor’s number came back at 34, Jill said.
“There are many different reasons this number may have come back high,” she added.
Some common or easier-to-fix issues leading to a high eosinophil count include allergies, asthma, Eczema, autoimmune diseases, hay fever, or less commonly, leukemia or Hyper Eosinophilia Syndrome (HES).
Jill said extensive testing was performed on Connor which ruled out any of the “simpler” problems that he could have had to cause these numbers to be so high.
“Once all of these were ruled out, we were sent to Children’s Hospital to help us determine exactly what we were dealing with,” Jill said. “At Children’s, we saw a ton of different doctors from different specialties (hematology/oncology, rheumatology, immunology, gastroenterology, allergy/infectious disease and cardiology, to name a few) to see if they could put their heads together to come to a conclusion as to why these numbers were high and why Connor was having the problems he was having.”
Connor underwent many different tests and procedures including frequent blood draws, several bone marrow biopsies, colonoscopy, endoscopy, CT scan, chest and stomach x-rays, stomach ultrasound, EKG and ultrasound, and echocardiogram of the heart.
“Even after this testing, the doctors were not able to give us a solid conclusion as to what we are dealing with in Connor,” Jill said. “The initial ultrasounds and echos were quite challenging because he didn’t understand what was going on.”
Ultimately, it was deemed Connor has HES. Throughout the course of this disease, Connor has consistently dealt with stomach pains, joint/body pains, severe mouth ulcers, major tooth decay, unexplained fevers, unexplained vomiting, constant redness and swelling around the eyes, restlessness while sleeping, and fatigue.
“He has been going through blood draws every few weeks for two years now,” Jill said. “For him, it’s just a question of whether he has to have a pokey in the finger or in his arm. He would much prefer a stick to the finger the arm hurts more.”
Jill said Children’s Hospital had no suggestions for the Menards as to how to make his symptoms go away.
A second opinion from the Mayo Clinic in Rochester was obtained, with the same tests being performed once again on Connor.
“We saw the same group of specialty doctors so they could form their own conclusions and to ensure that they understood Connor’s entire story,” Jill said. “While Mayo Clinic gave us the same consensus of HES, they had proposed a treatment plan to help keep the eosinophil levels at a more normal range.”
This plan involved an oral steroid, which Connor has since grown resistant to, twice.
Last November, the Menards traveled to a Children’s Hospital in Cincinnati, where there is a specialty clinic for eosinophil disorders.
The family was told that what the Mayo Clinic was doing was the same approach they would take.
“Ultimately, enough research has not been done on HES,” Jill said. “Therefore, there isn’t an answer for us at this time.”
In the meantime, the Menards need to continue to treat Connor’s symptoms and try to keep the eosinophil levels at bay.
Jill said the concern with HES is that the eosinophils will make their way into various tissues, causing inflammation and eventually, organ dysfunction.
Because the steroid is no longer working, the Menards have appointments scheduled at the Mayo Clinic in April to discuss chemotherapy, which is the next pain management option for HES.
“He is still taking the steroid and, while he hates the taste of it, he understands that it is the only thing that might make him less tired or make his legs hurt less,” Jill said. “He is a real trooper.”
Jill admits dealing with the disease can lead to differing opinions on how to move forward.
“Because we are dealing with such a rare disease, the decision of what to do next is more on Matt and I than most situations,” Jill said. “Most times, doctors can come in and say ‘alright, this is what is wrong and this is how you fix it.’ With Connor, that’s not the case.”
Instead, there have been numerous options presented to them.
“We feel as though we are stuck between a rock and a hard place,” Jill said. “Do we keep him off the chemo, but risk end organ damage, or do we put him on the chemo and deal with all of the side effects from that? We are always in discussion about what the right answer is.”
To help her attempt to make some of those tough decisions, Jill said she has resorted to doing “tons of research” online and through medical journals.
“While there isn’t a lot, it allows me to go into the doctor’s office with knowledge and understanding of what is going on,” she said.
Jill said their family has provided a great support system as things move forward with Connor, who is one of the youngest children to be known to have HES.
“While they don’t hesitate to offer their opinions on what we should do, they never judge our final decision,” she said. “We all just want what is best for Connor, but determining what that is isn’t always easy. We definitely couldn’t do what we are doing without the support system we have.”
Spaghetti dinner benefit Sunday
A special “Cure for Connor” spaghetti dinner fundraiser will take place Sunday, March 16 from 4-8 p.m. at the Delano American Legion.
The cost is $8 for adults; children 5-12 $5; and children 4 and under eat free. A silent auction and family-friendly games will also take place.
For more information or to donate toward the silent auction, contact Tarra Berent at (612) 388-6656 or Denni Hoy at (763) 614-0376.
Cash donations may also be dropped off or sent to the Crow River State Bank in Delano c/o the Connor Menard benefit Fund, PO Box 700, Delano, MN 55328.