The Maccoux Family Story - About the Family
Want to find out more about Hydrocephalus ?
Want to find out more about Reflex Sympathetic Dystrophy Syndrome ?
Our goal in this letter is to introduce you to each member of this remarkable family. Understandably, there is far more to their situations and life than we could or would ever attempt to address ourselves. So, please keep in mind, that this is only a taste of their bittersweet story.
Meet Traci:
Traci was diagnosed in 2001 with Reflex Sympathetic Dystrophy (RSD). What is RSD? Also known as Complex Regional Pain Syndrome (CRPS) - is a chronic neurological syndrome characterized by:
- Severe burning pain
- Pathological changes in bone and skin
- Excessive sweating
- Tissue swelling
- Extreme sensitivity to touch
Tom Haederle of Johns Hopkins University describes RSD like this: "If Hell were a clinical medical condition, it might look something like reflex sympathetic dystrophy or RSD."
So just how bad is the pain? On the medically accepted - McGill Pain Index Scale (0 being no pain up to 50) RSD comes above a bone fracture, childbirth and even above amputation of a finger.
Controlling the pain of RSD is far from easy, as Traci's dedicated team of doctors and surgeons will tell you. Traci has had to endure years of sympathetic blocks, epidural blocks (spinal catheters), Ketamine drip drug treatments and multiple surgeries all-resulting in having to be hospitalized for months at a time. In fact, Traci spent most of her 6th grade year, not at home or in school, but at Children's Hospital-Minneapolis. In May 2002, Traci was the recipient of "Edinbrooks ISD 279 Investment Youth award for overcoming an incredible amount of adversity." In June of 2005, Traci had a spinal cord stimulator (SCS) surgically implanted to help control the pain in her left leg and reduce flare-ups of her condition, which has been successful.
In May of 2006, Traci was bumped in the hallway at school and the RSD spread to her arms. Since then she has been hospitalized numerous times for sympathetic injections into her neck where they have access to the sympathetic nerves which affect her arms. Traci spent 8 days at Mayo Clinic in Rochester, MN with a catheter in her neck, with the hope that they would be able to put the RSD into remission. Unfortunately none of the attempts were proven successful so in September 2006, Traci underwent surgery to implant a second SCS system to control the pain in her arms. We're very thankful that both SCS systems have worked well in controlling the RSD.
Despite her debilitating disease, Traci tries to live life to the fullest as an active teenager by pursuing her love of swimming. At the time she was diagnosed with RSD, Traci was listed as the #2 swimmer in the state and one of the top 25 swimmers in the entire country, for her age group. As an example of her will and determination, in 2005, after having gone through three days of horrific pain and treatments in the hospital, Traci got back in the water on the 4th day - something most of us would not have even thought of.
Traci was a captain for the swimteam her senior year at Park Center High School in Brooklyn Park where she graduated in 2008.
Traci continued her education by attending Minnesota State University - Mankato for Nursing however due to continued flare ups and the physical demands of nursing she decided to change careers. She is now attending Hennepin Community College and is in her 2nd year studying Graphic Design.
Traci enjoys creatively expressing herself through her drawings and spends as much time as she can with her friends. Traci was a member of the Youth Advisory Council (YAC) for Children's Hospitals and Clinics of Minnesota and to volunteer at Children's Minneapolis campus during the summer months.
Meet Olivia:
For
Olivia, pain, surgeries, medications, doctors and hospitals are simply a way
of life. Olivia was born at only 29 weeks, which caused bilateral grade II intra-ventricular
hemorrhages (also known as brain bleeds), which developed post hemorrhagic hydrocephalus
(excess spinal fluid in the brain). Olivia underwent surgery to receive her first
VP shunt at 10 months of age. A VP shunt is a system that drains the excess cerebral
spinal fluid from her brain to her abdomen. Many children, after they receive
a VP shunt, only need to return occasionally throughout their lives to have shunt
revisions as they grow. Unfortunately, for Olivia, she has had to suffer her
entire life from complications with her VP shunts resulting in the 60+ brain
surgeries she's had to undergo to try control her complex medical issues.
Some of those surgeries have been Chiari decompression, Craniectomy, and Saggital Sinus decompression all of which which are used to accomplish a cranial expansion. This is where they actually removed sections of Olivia's skull and added titanium plates and composite in an effort to make more room for her brain. In February 1999, Olivia developed a MRSA Staph infection following a shunt revision. The treatment resulted in an allergic drug hypersensitivity reaction, which basically burned and blistered her body, inside and out, causing her liver and digestive system to fail and a fever reaching 106.9. Even the medical staff was amazed by her recovery. During that year alone, Olivia was hospitalized for over 200 days.
After this severe reaction, Olivia developed a latex allergy, multiple drug allergies, and sensitivities to most adhesives such as band-aids or medical tape, which make it tricky at the hospital after her surgeries. They now have to use cotton bandages and gauze on Olivia, as the adhesives on tapes and other bandages actually blister and tear off her skin. Olivia cannot even tolerate wearing a hospital I.D. band, so they keep it taped to the railing of her bed.
In addition, Olivia also has minor Cerebral Palsy and has had to undergo a surgery called a Bilateral Tibial Ostotomy, which is a repositioning/rotating of tibia bones in her legs. The surgeon had to cut the bones in both of her legs, straighten them out, put in plates and then cast them until they healed. Both of Olivia's legs were in casts and were held together by a bar between them. When you ask Olivia about this surgery, she'll tell you that the "best part" about having both legs in casts was that the kids got to push her around in a wheel chair at the school!
In September of 2005, after a major surgery to place a catheter in the cistern (back of neck) their neurosurgeon proceeded to tell them words no parent ever wants to hear. Olivia is O.K. "but we almost lost her on the operating table" During the exploration, removal of scar tissue, and placement of the catheter, they cut into an area of the venous system (blood delivery system). This situation, in most cases is fatal but due to the surgery team's quick actions they were able to limit blood loss. The venous system holds 1/5th of the blood supplied by the heart. If the heart beats five times with an unrestricted opening, your body has lost its entire blood supply.
Olivia was the recipient of the "2006 Edinbrook's ISD 279 Investment in Youth Award for overcoming an incredible amount of adversity".
Olivia is a 8th grader at Brooklyn Junior High School in Brooklyn Park. She swims on the Park Center High School Girls swim team and the Great Wolf Swim Club. In addition, Olivia is enjoying being part of the Park Centers Adaptive Floor Hockey Team. She is also hoping to try out the Adaptive Softball Team in spring.
Olivia does her best to be an active kid when she is not in the hospital, or at home suffering from painful headaches. Like her older sister, Olivia is a club swimmer and credits Traci for teaching her to swim and encouraging and supporting her along the way. When she's not in the water, Olivia enjoys playing with her friends, taking their dogs Schatzi and Charlie to "puppy class" and spending time with her family. Olivia is also a member of the Youth Advisory Council (YAC) for Children's Hospitals and Clinics of Minnesota, this is her 4th year.
Meet Amanda:
Amanda
would tell you that life at the Maccoux home is never dull, and never taken for
granted. As she stated in a report she had done in High School, that while other
kids her age were worried about what clothes to wear, who liked who and which
team would win the game on Friday night, Amanda was worried about the pending
surgery for Olivia on Friday and how Traci was doing stuck in the hospital for
the 23rd day. Amanda is a remarkable young woman who, even at a very young age,
knows the true value of life, what things are important, the reasons for making
the right choices and that family members are the best friends you'll ever
find.
Since Olivia had to remain in the hospital for the first 4 months of her life, Amanda had to grow up fast. While other 10 year olds were being poked and pulled out of bed by their parents, Amanda was up helping her 5 year-old sister Traci by getting her breakfast. While other kids were outside playing with friends, riding their bikes or sitting in front of the TV playing video games, Amanda was helping sort laundry, clean the house and getting her homework done before she went off to dance classes. As she got older, after Traci's diagnosis, while most teenagers would avoid speaking to any adults let alone hang out with their parents or grandparents, Amanda loved to spend time with her parents. She would help make dinner, go to movies or out to dinner with them and would even head up north for weekends to stay with Grandma and Grandpa.
Like her sisters, Amanda made the most of her childhood and teen years despite their unique family situation. She loved spending time with her friends, attended as many school games as she could and enjoyed fishing any chance she got. Her true passion was competitive dance. Starting at the age 2 and continuing on until she graduated, you always knew where to find her most given nights and weekends - at the dance studio. Amanda says that dance was not only great exercise and discipline, but it was a way of self-expression. It gave her an outlet for the emotions (fear, frustration, confusion, sadness and anger) that she would feel when she saw her parents and her sisters having to go through such unbelievable circumstances.
Amanda graduated from Park Center High School in Brooklyn Park in 2004 and the University of Minnesota-Duluth in 2008 Summa Cum Laude. She earned her degree with a major in Crimonology with a minor in Psychology. She is continuing her education by attending the University of Minnesota Law School. She was also a volunteer at Children's Minneapolis campus during the summer months and served on the Family Advisory Committee with her mother.
On November 22, 2009 (Amanda's birthday) she become engaged to Tim Johnston, the couple has been dating 5+ years. They are planning a wedding September 17, 2011.
Meet Dan and Cathy:
Pillars of strength, resilient, strong, compassionate, patient, diplomatic, humble, saints, gracious, great sense of humor, the best parents and true friends. Those are just a few of the words we've heard used to describe Dan and Cathy.
It doesn't take long to be in their presence to realize that these two are wonderful, patient and loving parents who are wise beyond their years. Watch them interact with their girls and you'll see that the girls love and respect for their parents runs deep.
Dan and Cathy have been married for 27 years. Those who are closest to them know that to this very day, they are best friends who lean on one another for strength. They help each other up when they're down. Couples today talk about "date nights" where they are able to go out to dinner to spend quality time together. Throughout the years, "date nights" for Dan and Cathy consisted of a family member or friend, bringing a meal (Subway or Leann Chins) to them at the hospital, which they would then "sneak away" to dine together in the Parent's Lounge down the hall from their daughter's room. They have also shared more Thanksgiving meals at the hospital, out of Tupperware, than around their own dining room table.
Despite their resilience, patience and optimism, the extreme burden they bear is always present.
Cathy is a member of The
Family Advisory Council (FAC) for Children's Hospitals
and Clinics of Minnesota.
Emotionally:
I think that Dan and Cathy would agree that this is the area impacted the most. Hearing what the Maccoux family has to go through is enough to make anyone's blood pressure rise or stress meter max out:
- Experiencing the ups and downs between the healthy times and the unhealthy times.
- Enduring the endless frustrations of hospitals and their glitches, which are too numerous to mention.
- The trauma of seeing your children screaming in pain or watching them suffer from a severe reaction to medications - which take weeks to wean off of.
- The bittersweet feelings of kissing your daughters on the forehead as they are rolled into the operating room - not knowing if that will be the last time you see them alive.
- The agony of waiting through surgeries which you were told would be "2 - 3 hours" actually lasting "8 - 9 hours" not knowing what is going on or wrong in the operating room.
- The numbness of hearing that you almost lost your child on the operating table along with the eternal gratitude toward the surgeon for their expert skill.
- The time, added expense, and frustration of going to a hospital emergency room for issues that could normally be handled by a clinic or urgent care facility because of the complex health and treatment issues.
And that is just a drop in the emotional bucket over the last 14 years. It
would take almost that long for them to truly explain to you what their family
has been through, and continues to go through.
As we mentioned when we began, this has been a small introduction to the Maccoux's (Dan, Cathy, Amanda, Traci and Olivia). It is our desire, that after reading this, you will be inspired by their story, their strength and their wish to encourage others to have hope even in the midst of extreme adversity.
If you are interested in learning more about Traci and Olivia and their conditions - please check out the following link to the Caring Bridge website. Please go to the "journal" tab so you can read more about the difficult experiences each girl has had to endure - as well as their family.
www.caringbridge.org/visit/oliviamaccoux
If you would like to contribute to their cause, please see "Donations" in the left column. All donations will be used to pay off existing medical expenses as well as continued treatment for Traci and Olivia.
All donations are anonymous. Please note that donations are not tax deductible.
Please feel free to forward this website to friends that know the Maccoux's or would be willing to contribute to this worthy cause.
Thank you in advance for your generosity.