About Us

** The newest updates are at the bottom!

The below was taken directly from the Caring Bridge website...

We have been very busy the last few weeks with little Abby. Since late February she has been doing a weird jerking motion with her arms and head, we took her to the Dr. right away who referred us to a neurologist. After waiting six weeks to see the neurologist we had an appt, of course she didn't have any of these episodes while we were meeting, but we got lucky and as we were about to leave she started to have one, we quick called the doctor back in who was able to witness one right then. The unfortunate part of this was rather than waiting a week to get an EEG done he ordered one right then, can be a good sign! The EEG showed what he called infantile spasms a relative to epilepsy. He also referred us to get an MRI.

The MRI results were sent directly to the neurologist who called us right away, great service, but again not a good sign. Abby was then diagnosed with TSC, Tuberoses sclerosis; (more information can be found at the link at www.tsalliance.org). We learned that Abby has several pea sized tumors in her brain, one tumor the size of a shelled peanut in her brain referred to as a SEGA which was causing the infantile spasms. We were than referred to a neurologist surgeon and his team of doctors. In meeting with the neurologist surgeon, he and his colleagues were told this tumor was the size you would expect to find in a teenager with this disease, and that it had to come out. It is currently blocking the flow of spinal fluids from her brain and as the doctor said, "We want to find out what it is".

The next several months were a little crazy with doctor’s appointments, 2nd opinions & trying to get a grip on exactly what this diagnosis was, genetic testing & a lot of trial and error with different medications to help stop the infantile spasms.

Abby was scheduled to have the tumor removed from her brain at Children's hospital in Minneapolis on June 5, 2006. She will be in the hospital all week and at home recovering for an additional three weeks. After that she will be meeting with a physical therapist in an attempt to catch her up and offset the effect of the infantile spasms. Surgery went overall well, they had to leave a portion (silver) of the tumor on her brain as the surgeon was afraid that with her brain so swollen, he may end up doing more damage to the gross motor portion of her brain and did not want to take that risk. So, we will continue to monitor that with MRI’s every 3 months to see how the brain & ventricles are doing and see if the swelling is going down.

Abby decided she needed a little more time in the hospital and we ended up staying for almost 2 weeks. After the surgery Abby had completely forgotten how to eat, drink, scoot on her butt (she never did crawl). We had to have additional therapy in the hospital to teach her how to eat as they wanted to send her home with a feeding tube for a couple of weeks until she was able to understand again how to suck, drink & eat from a spoon/fork.

As part of the surgery and diagnosis, they did a complete MRI on the Abby’s entire body and found that she also has a tumor on her heart. Again, we meet with another heart specialist and will have to monitor that one as well. Typically, with the ones on the heart, they tend to shrink on their own over the years as the organ begins to grow. As of current, the tumor on her heart has completely went away!

In late 2009, we were in for our 6-month MRI’s. Abby’s tumor has grown back. This time, too large to do surgery. We were referred to a specialist in St. Paul that works with children with TSC. Between the two doctors, it was determined that no surgery at this time, and we were placed on a double-blind study. Abby was monitored very closely during this time, as we were at the hospital every 4 weeks to start with doing blood draws, samples, and MRI’s, then we increased to 12 weeks of being monitored. After being on the drug study for almost a year, at one of our MRI’s we were informed that Abby’s tumor had shrunk in half! We were so happy with this news, and knew at this time that Abby was actually given the drug. Abby continued on the drug study for approximately 5 years with regular checks, blood draws, MRI’s, & EEG’s.

In December of 2015, Abby had been getting very ill, headaches, vomiting, no fevers & just not doing well. After several doctor’s appointments & another MRI, they had determined that Abby’s tumor had doubled in size again. The drug was no longer being effective. We never did leave the hospital that day, and after being admitted to Children’s in St. Paul, Abby under went another brain surgery on Christmas eve 2015.

This surgeon was fantastic, he was able to get all of it this time. Abby was recovering great! This time around we were in the hospital for a week and a few days, doing well, therapy was great, all of the nurses were great (we even had a visit from our favorite cousin/nurse from the NICU on Christmas eve)! Santa came and delivered Abby some gifts, Ronald McDonald house was fantastic and all of the ICU nurses were great with Abby. Abby was released from the hospital and we had to continue monitoring her at home. After heading to the surgeon office, a couple of times, they told us that Abby had hydrocephalus, and the inner layer of membrane was not healing properly. In January of 2016, Abby under went another surgery placing a programmable shunt on the back of her head and inserting a 4-foot drainage tube down into her tummy. More great news, when they were down with the surgery, another MRI took place and this time a full body scan and was determined that the 5 tumors that Abby had on her kidneys (3 on one & 2 on the other) had diminished and no longer there.

Since 2016, Abby has been doing great! Healing and fully recovered from the surgeries and still going strong. She continues to amaze the doctors as she has a mild case of TSC and has not been showing signs of some of the other children, but does continue to keep them on their toes. Abby will continue to have MRI’s of the brain, we continue with her yearly eye exams as tumors can grow on the eyes. We will continue our full body MRI’s as well, and heart only if we have symptoms that would cause concern.

To date (December 2017) our latest MRI showed no sign of the SEGA, the other tumors are still stable and Abby’s ventricles are back to normal and the shunt is doing great! Abby will have to undergo one more test that we are waiting for the referral to pass through, but she will have to do a 24-hour sleep study and EEG as she has had a couple of incidences in the middle of the night that we can not explain and they want to just make sure she is not having any little seizures in the night while sleeping. We are very thankful for all of the great news this month and could not ask for a better Holiday season to be with family & friends!

As of 1/2023:

We have great news! Our last MRI showed that Abby’s tumors in the brain are stable. Her shunt is working properly (after 3 surgeries in 2020 with adjustments and replacement). The tumors on her kidney are stable. Her seizures have been controlled with her medicine; also the non-epileptic events are currently under control! Such great news! The best news of all is that Abby will not need another MRI until the summer of 2024! So blessed and excited for Abby for her senior year!

 

We thank you all for your continued support and prayers and welcome you to join us on our annual bike ride in May!