About It TakeS Guts
We believe that we are on this journey for a reason. Life has its twists and turns. We never would have chosen this journey, but it was given to us. We are passionate about helping others maneuver through the uncharted waters of childhood chronic illness.
Our children don’t fit into a perfect “Diagnosis” package all tied up with a bow (oh, how we’ve wished this was the case). Their illnesses require out of the box thinking from caregivers and doctors. Thankfully both kids have an amazing team of physicians that have done that for both of them but it also helps that they have two bulldoggy moms that will never let them fall through the cracks! Many times we’ve reminded each other of the simple words, “Whatever it takes.”
It Takes Guts
9630 Bruceville Road 106-240
Elk Grove, CA 95757
Who We Are
We are the proud mamas of two very amazing, resilient kids with rare but similar conditions. One was born prematurely and from the beginning of his life on earth has known nothing but pain. The other was born healthy and remained that way until a viral illness drastically changed her life at nine years old.
In 2008, our eyes met in the post surgical unit of the hospital that our kids are treated at. That day we simply smiled at each other, knowing what it meant to be at an unexpected procedure on a Sunday. We simply exchanged that "look" of sympathy as we knew each other's child had endured a procedure. We each waited quietly for our child to wake up and then we headed for home.
We didn't see each other again until the summer of 2009. Meeting once again following pretty rough surgeries for both of our kids, we found ourselves next to each other in the bays of post op again. One of us said, "Hey, I remember you." We formed a friendship after that day and discovered that it was comforting to not feel alone in this journey. There was another mom in the trenches struggling to dig out.
For six years, we have been each other's rock through good and bad, many surgeries, PICU stays, long admissions, walks to the healing garden, boxing matches in our kids' hospital rooms, coffee runs, shared lunches to avoid the cafeteria, cheering in our children's triumphs and feeling sadness in their pain. We have found humor and laughter in times of extreme trial, it is what carries us through. We have been pushed many times to the edge and past the point that our mommy hearts' could handle.
Over the years, we were trained by many gracious nurses and doctors to manage the unmanageable at home. Central lines, IV's, ileostomy bags, port-a-caths, Broviacs, drainage bags, GJ tubes, G tubes, Cecostomy Tubes, Pain, Nausea...all became words in our vocabulary.
Our wish is for others to not feel alone in their journey, that you may find strength deep within you to continue to find answers.
Kobe was born at 28 weeks gestation; he weighed 2 lbs. He came into the world fighting and has been fighting ever since. He has overcome many of the challenges that come with his premature birth; he has truly beaten – and continues to beat – the odds!
Kobe's intestines have never worked the way they were supposed to. There were signs in the NICU that his body wasn't doing what it should. For years Kobe had terrible stomach pain, his stomach was constantly distended. Right before his 4th birthday, after many hospital stays and more tests than we can count, he was diagnosed with chronic ulcerative colitis.
Ulcerative colitis is an autoimmune disease that affects the colon and includes characteristic ulcers, or open sores. The main symptom of active disease is usually constant diarrhea mixed with blood. The disease is often accompanied by varying degrees of abdominal pain and is associated with a general inflammatory process that affects many additional parts of the body; Kobe deals with leg and joint pain as a result of his ulcerative colitis.
While the ulcerative colitis diagnosis was a start, Kobe was still having issues that the doctors couldn’t explain. He rarely went a month without being hospitalized. At age five Kobe had a cecostomy or C-tube placed into his colon to help with his motility. The C-tube allowed us to put a flushing (irrigating) solution directly into Kobe’s bowel so that we could flush the stool out through his bottom. At the time, he was one of the only children with ulcerative colitis to have a cecostomy due to the risk associated with ulcers affecting the cecostomy site.
During the cecostomy surgery the doctor removed his appendix and sent them to off to be tested; as a result we learned that Kobe also had Intestinal Neuronal Dysplasia (IND). We finally had an answer as to why things didn't work. IND sufferers have a problem with the motor neurons that lead to the intestine, inhibiting motility and preventing proper digestion.
Kobe had challenges with the cecostomy. His Ulcerative Colitis was often flared which made flushing his cecostomy terribly painful and not always productive. For months we had to give him the drug Versed to cause drowsiness, relieve his anxiety, and prevent any memory of the flush because it was so painful for him.
Because of the constant need for IV’s and blood draws his veins were no longer working the way they should so the doctors implanted a portocath (central line). The port makes it easier to give meds and collect labs intravenously; however, it also comes with a risk of infection, blood clots and port blockage.
Kobe was able to go to school for first grade, but near the end of the school year, he began having major challenges. Cecostomy flushes were no longer working; he was in constant pain and was having to undergo fecal dis-impactions every month. He was forced to go on home hospital school just a few months into his second grade year.
During an emergency dis-impaction few days before Kobe’s 8th birthday we learned that his colon was not allowing waste through. We had no choice but to schedule surgery right away. The day before his 8th birthday, Kobe had a foot of his colon removed. Recovery was slow and there were many complications, Kobe spent over a month in ICU.
Just a few weeks after being discharged we found Kobe doubled over in pain; he was re-admitted to the hospital and scheduled for surgery. On September 2, 2009, Kobe had a sub-total colectomy – all but 15% of his colon was removed. The 7 hour surgery was very hard on Kobe; he spent another 3 weeks in ICU with what seemed like one challenge after another and another 2 weeks out of ICU before coming home.
His doctors sent a portion of the colon that was removed and a biopsy of Kobe’s bowel out for testing. The results came back showing that his bowel shares the same congenital defects that plagued his colon. We also learned that his enteric nervous system was irreparably damaged. This explained why things were not getting better.
It took Kobe months to recover from the sub-total colectomy. Eventually he began feeling better and had a few good months, though we spent quite a bit of time in the out-patient clinic for Remicade infusions, steroid pulses, labs, fluids, dis-impactions, endoscopies, colonoscopies, and biopsies. During this time Kobe had quite a few admissions for pain.
Things started falling apart around October of 2010. We could not control his pain; he was exhausted and miserable. Toward the end of December, 2010, his doctors decided it was time to bring Kobe into the hospital and put him on a PCA (patient controlled analgesia) to help manage his pain. On February 2, 2011, after being hospitalized for months, the decision was made to give Kobe an ileostomy, a surgical opening constructed by bringing the end or loop of small intestine (the ileum) out onto the surface of the skin. Intestinal waste passes out of the ileostomy and is collected in an external pouching system stuck to the skin. This was a step we had hoped to avoid, but the decision as no longer ours to make, Kobe’s body decided it was time. It was another long surgery, many complications and another 3 week ICU stay.
As Kobe recovered, we had to face the fact that getting him off of his pain medication after being on the PCA for months had created new issues. Kobe suffered severe withdrawal symptoms and once again became very ill. The doctors attempted to wean him off dilaudid with methadone which caused methadone toxicity. Kobe didn’t wake up, speak, or move for 5 days. It was frightening. Kobe wasn’t fully weaned off the dilaudid until June, 2011.
The ileostomy solved Kobe’s motility issues; however, he had quite a few issues with prolapsing, when the muscles holding the stoma weaken and allow the bowel to telescope out, increasing the length of the stoma. It came to the point that his stoma was constantly prolapsed resulting in the need for 2 stoma revision surgeries.
The first revision surgery was a 6.5 hour surgery that left him very sick. His body was so tired. Two days after surgery Kobe was rushed back into the operating room for a chest tube after it was determined that his left lung had collapsed. He spent weeks back in the ICU; his recovery was very slow and riddled with one complication after another. The second surgery was similar to the first and took a large toll on Kobe. Recovery was very slow.
We were devastated when his revised stoma site started prolapsing. It came to the point when it would stay prolapsed and would lose circulation. Rather than put Kobe through another major surgery, his surgeon Dr. Greenholz decided to try to sew the stoma to Kobe’s stomach cavity. We were grateful for a 3 hour surgery; it was much easier on Kobe’s tired body then the previous surgeries. We did not have a major prolapse again, but Kobe had quite a few issues with stoma blockage and internal tearing which was very painful and scary for him.
Though Kobe had only a very small piece of colon left, it was enough to cause quite a few problems for him. We were unable unable to get his flares under control; he was bleeding from the rectum and needed blood transfusions to keep his hemoglobin and hematocrit numbers stable. In March, 2012, Kobe’s labs came back with elevated lipase levels, which could be indicative of pancreatitis, so he was sent for an MRI. The MRI showed that he has a large cyst on his pancreas. It also showed that his bile ducts are beading. He was sent for another MRI with a liver biopsy the very next day, the result of which is still in question. Kobe is now dealing with an undiagnosed liver disease.
Since that diagnosis new symptoms have surfaced that greatly affect Kobe’s daily life. He suffers from chronic and intense nausea. He now has a feeding tube to help him get the nutrients and hydration he is unable to ingest orally. Kobe LOVES food, not always being able to eat it is very frustrating for him. Imagine going through each day nauseous. It’s awful. Headaches are now a daily occurrence as is fatigue, back pain and the never ending stomach pain.
Kobe’s road has certainly been bumpy. He has undergone so many treatments, procedures, tests and infusions that we have lost count. He knows all about about picc lines, colonoscopies, portocaths, IV's, labs, intestines, catheters, ileostomies and hospitals. He has learned how to find his joy in the midst of his challenges. He is constantly teaching us about courage and reminding us about what is important in life. He brings so much light to his family and friends, all of whom share the fond hope that one day he will lead a life free of pain and full of love and laughter.
We have been down many "diagnosis" roads. Having an unknown illness has been extremely challenging for Mad, for our family, and her doctors.
It all started with a viral ear infection, a fever, a headache and vertigo in early 2007. She was just 9 years old. It caused a downward spiral that continued for many years. There were months that she felt a little better and months when we thought we were going to lose her to her illness. Over the years, we exhausted our local doctors and made various trips to Kansas, San Diego, San Francisco, Minnesota, Cleveland, and Chicago in desperation for help for our girl. Throughout the course of this "disease" we have been down many paths, most of which have stopped short. We knew from studies that she had gastroparesis of varying degrees of bad, went through many diagnoses...abdominal migraines, cyclic vomiting, she had an Arnold Chiari Malformation decompressed and the best Mitochondrial testing available at the time in 2008. We limped along for many years not knowing what was causing her issues, never realizing that they could be autoimmune.
By grace, I stumbled across a website where another mom was talking about a neuro-muscular neurologist who sees complicated kids. It was after flying to Chicago and going through a long series of testing, her disease finally had a name and we finally had doctors that recognized it. Autoimmune Autonomic Small Fiber Neuropathy and Dysautonomia (POTS). For years, the Solu Medrol and IVIg infusions that were recommended really helped but after time, their effectiveness tapered off. We tried plasmapheresis and that, too, worked for about a year until the complications of port infections took over.
In early 2015, we contacted Dr. Richard Burt at Northwestern Medicine in Chicago and applied for an autologous (which means she was her own donor) Hematopoietic Stem Cell Transplant. She was accepted into the transplant under "compassionate care" as the FDA has not approved HSCT as a treatment for autoimmune disease. Going into transplant, she was on IV nutrition, a 100 mcg Fentanyl patch and Dilaudid for pain, at her worst. In July, Madalyn began her induction chemo and stem cell harvest. On October 14th after receiving Cytoxan, Rituximab and rATG, her stem cells were then infused back into her body and her new immune system began to build. HSCT was a complete success and her central line and GJ tubes were successfully removed in 2016.