A grandmother’s hope for her granddaughter

As a grandmother, Lois Jarvis would love nothing more than to sit down with her granddaughter Lauren and enjoy some milk and cookies, bake her a birthday cake, take her out for pizza, or go on a family picnic.

But she can’t. Her granddaughter Lauren Paulsen, 19, is deathly allergic to food.

For the honour student, talented artist with a sunny disposition and infectious smile, life has been precarious, surgery and treatment have become as routine as the feeding tube that keeps her alive.

For Jarvis, who is a powerful and outspoken advocate for an organization in Campbell River called ‘Citizens for Quality Health Care’, she can only hope her granddaughter gets exactly that.

At the age of eight Lauren was diagnosed with rare auto-immune disease, Eosinophilic Gastroenteritis (EGE).

“Lauren is one of two kids in BC with this illness,” said Jarvis. “All kids with these rare diseases don’t get the help or funding that other kids do with illnesses such as cancer, diabetes, or heart disease. Drug companies don’t want to invest in finding treatments for orphan diseases because they don’t get the promise of a big profit from them.”

As long as Lauren can remember, she suffered from stomach aches. Her life changed drastically when she frequently became ill with flulike symptoms, worsening stomach aches, headaches, weakness, and pain.

“All our bodies have white blood cells called ‘eosinophils’ which are there to protect the digestive tract from foreign invaders,” said Jarvis. “In her case, the eosinophils release a substance that is supposed to attack the invader but in the process, when she eats food, it recognizes food. It is extremely painful.”

EGE has not only affected Lauren profoundly but all her family as well. They cannot live like other families do. Most socialization for people Lauren’s age all centres around food. Their opportunities for holidays and travel are very restricted.

Jarvis said that Lauren was sick all the time and missed a great deal of school.

“She gradually had no friends left as they all drifted away and she became isolated due to her illness,” said Jarvis. “During the night when she was sleeping Lauren was fed a special hypo-allergenic formula through a Nasogastric Feeding nose tube to her stomach. She was sustained for three months on strictly the formula, and then introduced to plain white rice. Much later, she was able to add potatoes to her diet while on the formula. It was very difficult for the rest of us to eat a meal while she sat with a plain solitary potato on her plate.”

She was tethered to an I.V. pole for hours while feeding. Lauren was teased by children and stared at by both children and adults due to the N.G. tube. She did her best to ignore all of that, even being called “snotty nose” along with other names at school.

Lauren was very weak and tired easily, unable to walk through a store. She became very depressed and discouraged in trying to cope with her illness. Lauren was trying to cope in a social environment watching everyone enjoy eating while she was unable to participate.

Lauren wrote a very moving story on her blog entitled “Sick for awhile”, dated March 10, 2013. It is a story on what it is like to be her.

“For years I have been working at the level of ‘barely-functional.’ To try and explain this, I am going to use the Spoon Theory. In a sense, everyone has spoons, each one representing the energy and ability to do something in a day. Getting dressed uses up a spoon.

Brushing your teeth uses up a spoon. In all these little things, we don’t really take into consideration the amount of energy we are using to accomplish them. The reason people don’t think about it is because they have enough spoons that they don’t have to worry about running out.

However, I have a very limited numb er of spoons. And I mean, extremely limited. I have to be careful about what to use my spoons on, or I will run out and won’t be able to function for several days.”

At her “barely functioning level, Lauren is only able to do the necessities.

“What I mean by this is that when I am attending college, it uses up a lot of my spoons going every day, so I cannot go out and do other things that would be more fun. If I did, I wouldn’t be able to go to college. So I have to use my spoons wisely.

It can get pretty depressing so sometimes I cry myself to sleep. And yes, I tend to think of ways to end my life to end the pain and misery, but I would never do it because I know how much it would hurt the people that care about me.”

This year, Lauren had withdraw from college due to her health declining and at one point she almost lost her battle.

What does Grandma Lois do to prepare for a visit from her granddaughter?

“We put all the dishes, pots, pans, cutlery and cutlery trays in the house and camper van through the sani cycle in the dishwasher,” said Jarvis.

“We use the camper van daily on outings so we can have a fridge and stove to cook food for them. We wash drawers to ensure there are no residual crumbs. We clean and sanitize all counters well and then shop at a specialty health food store. We change our cooking and eating habits to ensure there is no cross-contamination of food. We have switched household products to the products they use at their home. We purchased some cookware to be used exclusively for Lauren’s food. There is lots of extra hand washing too.”

And who would have thought a little blessing would come their way from the local farmers’ market in Campbell River?

“It was very exciting to discover more food to add to her diet from the Campbell River Farmers’ Market,” said Jarvis. “Larry and Angelina of Watrin Farms (Comox) have wonderful pure products that Lauren can eat. Angelina’s popsicles made from apple juice with mango or strawberry juice are a rare treat so we purchase anywhere from 20 to 50 at once. Island Bison is another discovery which has added to her diet. We also make trips to Paradise Meadows poultry farm. Lauren is able to enjoy their chicken as there are no chemicals and no sprays. She is still considered medically fragile but certainly has come a long way.”

Jarvis recalled one visit that went wrong.

“During one visit Lauren wanted to try a little piece of crab meat which the rest of us were eating. Her mother Sandi gave her a miniscule piece which resulted in an acute reaction and a trip to the Emergency Department of our Campbell River Hospital.

“We were fortunate as Dr. Hansen, the attending doctor in Emergency previously had a patient in South Africa with EGE. He was also a good friend of Lauren’s specialist, Dr. Jacobsen, at Children’s Hospital. Two conference calls resulted in an intravenous treatment of a steroid which alleviated the acute attack and gave Lauren a very temporary reprieve from pain for a few hours. For a while after, Lauren said it was the first time in years she had escaped all pain and she happily stated she felt like dancing. We were very impressed with the care and treatment given at our Campbell River Hospital as Lauren has been taken to other hospitals where they really didn’t know what to do for her as her illness is so rare few doctors are familiar with it.”

Now Lauren is just beginning to feel a bit better and is going for short walks and sitting in the sunshine.

“If you think Lauren is no ordinary girl, we would all agree whole heartedly with you,” said Jarvis. “All she needs is a better treatment and/or a cure and there will be no stopping her.”

Her wish may come true. On June 19, Lauren will find out if she can have a bone marrow transplant.

– Sian Thompson (source: couriorislander.com)