Abby's diagnosis is an idiosyncratic low grade glioma. This basically means that it is an unusual, slow growing tumor. The best treatment for this is radiation. However, radiation in young children is very risky and can have detrimental side effects. Chemo is often used to stop the tumor until they become old enough to have radiation (age 10 and over is the best).
For now, we will cautiously observe this tumor. We will have another MRI in 6 weeks to see if there is a change. Then we will have them every 3 months. If at any time they see ANY growth or change she will immediately begin chemo. If it grows extremely aggressively we will have to do radiation.
Our neuro-oncologist told us to expect to have multiple rounds of chemo. These tumors do not go away, but you can stop their growth. However, they always start growing again. So MRIs and chemo and radiation will become a way of life for her. Hopefully hers will grow so slowly that we will be able to go a few years in between treatment.
So for now we get to come home and have a normal life for 6 weeks. Then hopefully we will get 3 more months of normal, then 3 more, then 3 more, etc, etc, etc. The longer we can delay chemo the better the chance that she will make it to age 10 before having to have radiation.
We really weren't told the long term prognosis but they speak to us in pretty optomistic terms, so although this isn't what we would have chosen for our life it could be much, much worse. We feel fortunate to be part of the St Jude family now and we know God will give us the strength to endure this long road. I know it will eventually become normal for us and she will never know life any differently.
I ask that Abby stay in your prayers. Pray that it will grow slowly and she won't have to have chemo until much later and that she would respond well to it. Pray for our family, that we will adjust to this new life. Pray for all the children at St. Jude-there are too many kids here. Pray for advancements in research that will lead to an end of childhood cancer.
God has provided abundantly for us during this time and we know He will continue to do so. We are so grateful to our families, church, and community for all that has been done for us.
"For I know the thoughts that I think toward you, saith the Lord, thoughts of peace, and not of evil, to give you an expected end" Jeremiah 29:11