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Saturday, January 29, 2011


Avery's MRI and Lumbar Puncture was done yesterday about 4 pm. Shortly after she woke up, we hit the road bound for Kansas City. Results are typically not given until the following day, or in this case Monday, but because of the roller coaster we've been on these last 4 months the Dr was able to con the radiologist into reading them last night. Avery did great through both procedures and was happy as could be after she woke up. She was not happy though as we put her into the car seat for the long ride home. She did fine on the way home, taking a good nap, eating some McD's and watching some movies. She stayed up with us until we got to Kansas City and was pretty much done 30 mins before we got home.

Dr Armstrong called us around 6:30 with the results of the MRI and LP and both were clear. There is a new spot showing up at the base of the brain stem that the radiologist thinks is due to her radiation, however he will take a look on Monday and double check. Neither is worried about this spot and said it is to be expected after radiation. This is phenomenal news and as a result has got the team brainstorming our next step. This is unchartered territory for the Dr's as recurring on treatment is rare and never a good sign. Responding to the ICE chemo as well as she has, appears to be unexpected and has given the Dr's hope that we have another shot at this thing. Avery has 2 more ICE chemo rounds to complete - number 5 starts on Tuesday. After these 2 rounds, we will head back to St Jude to talk further with the Brain Tumor team about Avery's next course of treatment. The hope is that since she seems to be responding so well to this chemo, we can couple it with another regimen that might push the cancer into remission. If we can get this beast into remission, it opens a whole new possibility for her in the future if it returns - full radiation. At this point, Avery is not old enough for this option even though we know its the one proven option for kicking the cancer. Doing so now, would be so detrimental to her development that Dr's won't consider it. Doing so after she turns 3, lessens those chances of developmental issues.

It was a really great visit with our team at St Jude and we felt so much more hope from them after our visit. They have always been very honest with us and told us in the beginning that they would tell us when they thought it was time. I think they thought after October's visit, that that time might be coming. However, Avery has entirely different plans for all of us. It was fantastic to see them recognize her amazingness and jump on our bandwagon again. The goal is always to heal her with the best quality of life possible and without St Jude we may not have been as good at achieving that for her.

I will be returning to work on a reduced schedule starting Monday. I have huge anxiety about this, but at the same time know it will help to steady me a bit on this roller coaster. Sharon will be helping us with Avery 2 days a week and that gives us a huge sense of relief as she has been so good for Avery. We are also adding some more aggressive therapy to her week since the kid seems to have the energy of a typical 2 year old. Our hope is that she will learn to walk in the next few months and gain some true independence. We have new braces for her ankles coming that will come up a bit higher and help with her knee hyper extension. We also now have an FM system for her hearing aides that will help her focus on whomever is talking to her, especially in that group setting. We are very excited about this and hope it aides in her speech and language development. Avery has adjusted to the missing teeth so far, although she does tend to drool a little more than normal. She'll figure it out I'm sure. New glasses will be arriving in the next few weeks as well -- her current ones are a bit small for her face. No worries people, we ordered the same color in the bigger frames so the adorable blue-eyed beauty with her twinkling blue frames and toothless smile will be waiting to see you all.

Thank you to all for the prayers and support through this rather rough week. We certainly have had it worse by far, but this one was not as easy as we had expected. It can always be worse - right? I met a father this week who was there with his wife and 2 children, both of whom have bone cancer. Yes - I said both. When you hit the jackpot -- you really hit it huh? Sad part is, both these strong kids have had their legs amputated, but one of them also had a benign cyst in his brain as a baby and open heart surgery as a toddler. You want to talk about things that suck? Try that one on for size. Puts a little more perspective into your day huh?

An update on our buddy Quentin -- he had his stem cells harvested yesterday - 5 days ahead of schedule, and he rocked it! We are so proud of him! Stem cells are harvested out of the big vein in your neck - so you can imagine how horrifying this was to witness for his parents. He did great though and they are very excited that his body was ready early for the harvest - means things are working well!

Well, Avery and I have a date with some very cool birthday presents, so we must say goodbye for now. Love to you all -- the prayers are working!


1 comment:

  1. So happy to hear your great news! Thank you Jesus! Way to go Avery! Love, The Smiths