Abby's Army: October 2009

Friday, October 30, 2009

Thursday's Appt

I wanted to post a recent picture of Abby. Her swelling is gone completely and her weight is back to normal. Her hair is growing out and we got her bangs cut all the way across so it looks more like we planned on her hair being like that! This is the pumpkin we carved last night when we got home! We roasted the seeds and you would have thought they were candy! Her and Lyla both gobbled them up!

We went to St. Jude yesterday for a neurology appt. All went well (other than driving in the downpour). We just talked about her seizure medication, side effects, dosage, etc. We are going to reduce her dosage slightly and see if it helps with behavior and sleep problems. Hopefully there will be no breakthrough seizures and we can keep her seizure free on less medication! We took Lyla with us but Jason and I had a hard time listening and concentrating on the doctor with all the commotion! We decided it would be best to leave her behind when we go Monday and Tuesday. I really want to be able to give 100% of my attention to what it going on with Abby. I hate leaving her though.

Please pray for all of us. It was hard to go back after being gone so long. Those "I don't belong here" feelings were pretty strong! It's also hard to see all the other kids who are so sick-we are so fortunate but we know that at any time she could be one of those beautiful bald babies. Pray that the tumor will not have grown! I really want 3 more months of freedom!

Thursday, October 22, 2009

Marathon/Appt

Just wanted to remind everyone to either sign up to join the Abby's Army marathon team or to make a donation to the team. If you are having trouble signing up (it is confusing) then call the phone number on the web page and ask them to walk you through it. It is not very user friendly!

I know most of you who keep up with us pray for us daily but I ask that you pray a little extra over the next few weeks. We go to St. Jude in one week for a neurology appt and we go on Nov 2 & 3 for our complete workup, including the MRI. Please pray that the tumor will not have grown and that we will get another 3 months of "freedom" from chemo. Pray for Abby since she will once again be subjected to long days and IVs. Pray that Jason & I will have patience with both girls and each other since it is stressful for all of us to be away from home. Thank you all for your love and prayers!

How We Got to Here-Updated August 2010

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.

Abby's Army

Friday, October 30, 2009

Thursday's Appt

Thursday, October 22, 2009

Marathon/Appt

Abby Summer 2010

How We Got to Here-Updated August 2010

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