A site dedicated to Abby. You can get updates on her diagnosis and treatment and leave comments for Abby and her mom and dad.
Monday, September 17, 2012
Year in Review?
I can't believe I haven't updated the blog in a year! Life just got very busy and this fell by the wayside. I am sorry to those of you who only know us from online life-I'm sure you have wondered about us a time or two! I recently started using Facebook to do quick updates but have felt bad about neglecting the blog. I have a lot to share though and am going to try to do better!
First I need to introduce our newest family member-Julie was born January 24th and has been a blessed addition to our family! She is a joy!
In the past year we have struggled to keep Abby's seizures under control with medicine. We have had some scares but even now her scans show that her tumor is stable. Praise the Lord!
I can't remember exact dates but I am going to try my best as this isn't just for others but really a record for me and for Abby. One day I would like for her to be able to see all that happened to her.
As I posted last year, Abby started having seizures again but the tumor remained stable. She was put on Zonisamide and after adjusting all was fairly well. She seemed to struggle a little with school work-her processing was slower and her memory just wasn't what it used to be. But we adjusted. We had another MRI the week after Thanksgiving and the tumor remained stable. She was doing well with her medicine.
In December, right after we returned home from St. Jude, Abby started having seizures again. I spent a lot of time on the phone with our neurology nurse and our neurologist increased her medicine. We had to do that a couple times over the course of two weeks because she continued to have seizures. Our oncologist was concerned and wanted us to come back even though we had just been there a few weeks earlier. We met with Dr. Boop (our neurosurgeon) and Dr. Kun (radiation oncologist). The head neuro-radiologist (who reads the MRIs) looked at all her scans and felt sure that they hadn't missed anything. So our mind was put at ease that the seizures weren't being caused by tumor growth. It was decided to let neurology work with her medicine and that we would hopefully find a combination that would work well for Abby.
We had a great Christmas and New Year. We were anticipating the arrival of the baby. And then the seizures came back. We were at the max dose for the Zonisamide and everyone was a little frustrated that they just kept coming back. So a week before my due date, Jason and Abby went to Le Bonheur in Memphis and had a long term EEG. I just have to say here-the nurse that coordinated our trip was fantastic. I don't remember her name but she was so kind and caring. She checked on me all week and kept me updated about what was going on at the hospital. She was such a blessing to me that week! Anyway, Abby was hooked to the electrodes and had to stay in a room under video surveilance for 3 days. I was heartbroken that I couldn't go with her. But I was due any day and most everyone felt like a hospital was not the best place for me at that time. She had a seizure almost immediately after being connected to the EEG but didn't have another one the rest of the stay. They were able to do some mapping (locating the seizures point of origin) on it but not as good as it would have been if she would have had mulitiple seizures. Our neurologist at Le Bonheur, Dr. Van Poppel, decided to add Keppra (which we were on when her seizures first started) and to possibly wean her off the Zonisamide.
I had Julie a few days after they got home.
Abby was weaned off the Zonisamide fairly quickly. Her school work improved.
She had another MRI at the end of February and everything was still stable. The tumor board met and reviewed Abby's case again. After much discussion, all the doctors agreed that the tumor was definitely stable. They couldn't see any signs of change since her surgery. We were told to come back in 6 months!
Unfortunately the seizures came back again. At the end of June we headed back to St. Jude for an MRI just to be sure that the seizures weren't being caused by tumor growth. Her scans remained stable and our doctor decided to try for 6 months again. We increased the Keppra a few times. Each increase caused her to be a little 'off' for about a week or two. The seizures seemed under control for a while.
At the end of August (just a few weeks ago) she began having seizures again. She had reached the max dose for Keppra so we added a second medicine-Trileptal. Unfortunately, Abby had an allergic reaction to it and had to change medicines again. This time it was Topamax. So now it has been about 4 days on the Topamax. We will increase it slowly over the next 3 weeks. She does seem to be struggling a little on this medicine but its to be expected at first. We were told to give it a few months before declaring it a failure.
On another note-we completed our first year of homeschooling and loved it. So we decided to try it again this year for first grade. I am so grateful that God laid it on my heart to teach her (and the others) at home. It isn't easy to manage everyone and everything but I am so glad she gets such tailored and one on one instruction every day.
So, that's the basic story of our past year. I know that its a lot to read but I really wanted it all written down.
I have more on my mind-hopefully I will be able to post again soon.
Please keep praying for Abby. She needs an army of prayers right now!
It all started with very small seizures. We are not sure how long she had been having them but they were getting more frequent. On April 23, 2009, we took her to Dr. Baker who sent us to the ER at Arkansas Children's Hospital. An MRI revealed a large brain lesion and Abby was taken to the ICU for 3 days. She moved out of the ICU and spent a total of 8 days at Children's. We saw several doctors who were all pretty stumped by what they saw. It didn't look like anything-tumor, infection, swelling. They put her on an anti-viral medication in case it was infection. Another MRI showed no changes. Some doctors thought it was gliomatosis cerebri but some didn't agree with that diagnosis so they decided to take some spinal fluid to analyze. They had to take it from the brain though because of possible swelling. We spent another night in ICU.
After she was discharged we contacted MD Anderson in Houston and St. Jude's. We flew to Houston where another MRI was performed. They informed us that it was gliomatosis cerebri. St. Jude's called later that day and informed us that they felt it was gliomatosis cerebri. That was not what we wanted to hear-gliomatosis cerebri has a 5% survival rate. However, St. Jude's neurosurgeon, Dr. Boop, wanted to try to remove some of the tumor. This allowed for a biopsy of multiple pieces of the tumor. On May 22, 2009, Abby underwent brain surgery. Almost all of her right temporal lobe was removed. Abby had to spend another night in ICU, this time at LeBonheur in Memphis.
The biopsy results surprised us all, it was not gliomatosis cerebri, it was a low grade glioma! God had answered everyone's prayers! The plan was to begin chemotherapy to stop the tumor from growing but our neuro oncologist, Dr. Armstrong, wanted to wait a few weeks to see how this tumor was going to act. We were once again surprised-the tumor wasn't growing. No need for treatment!! And that is where we are today. It has been over a year, and the tumor still has not grown. It's still there, big and nasty, but it is quiet right now. We go to St. Jude's every 3 months for an MRI and other appointments to monitor the tumor.