Monday, September 6, 2010

A LOT to update!

In many ways, this blog has become a forum (of sorts) to ask for your continued prayers for our family. What started as a place to post pictures and stories of Austin has become a place for me to update my friends quickly about our growing prayer needs.

As you know, my dad continues to receive chemo every Monday and Thursday at Moffitt for his multiple myeloma and amyloidosis. It is hard to believe that I first heard the word Amyloidosis in December. Dad came home from a visit with his kidney doctor.

I was working at his office for the afternoon, and dad and mom came in from their appointment. "Well, Emmy... I don't even know if I can pronounce it, but the doctors say that I have amyloidosis."

A quick google search once my parents were out of the room led me to a quick realization. This was not a good diagnosis. Amyloidosis... a disease I learned to spell (and pronounce) that afternoon has never been far from our minds since.

Dad did not receive good news last Monday at his appointment, and mom and dad are now looking for treatment options in other parts of the country. You can read more from my dad at his latest blog post (click here).

As some of you may also remember... Six weeks ago, my nephew (Andrew) was sent to a neurosurgeon to discuss results of his MRI. Six weeks ago, we were so relieved to get the good news that brain surgery would not be necessary for his Chiari malformation, the doctors just wanted to keep a close eye on his brain every six weeks.

On Thursday, my sister and her family went back to All Children's hospital for their six week follow up. My day continued as normal - I called my mom several times to check on dad and his chemo for the day. "He is doing great, Emmy!" was my mom's ever positive response.

Around 4:00 pm, I received a text from my sister. "Andrew is going to need surgery."

What??? I was caught completely by surprise - expecting that Thursday's MRI would simply be a routine visit. The entire family was caught off guard based on the phone calls that ensued over the next few hours.

Jenny agreed to send my mom an email which explained everything they knew so far.

So, here is my sister's email: explaining everything that happened on Thursday

Today, we returned to All Children’s Hospital for an additional MRI of Andrew’s brain and spinal cord then a follow-up with the neurosurgeon. Based on today’s MRI results, the neurosurgeon was to make a recommendation about whether our boy would need surgery to correct his Chiari Malformation.

After reviewing Andrew’s images, the surgeon came in to speak with us. His use of words like “worrisome”, “severe”, and “concerned” were not what we were hoping for or expecting.

Andrew’s brain extends past the base of his skull and creates a sort of “cork”, plugging up the entrance to his spinal column. Today’s tests showed that this malformation is virtually blocking all spinal fluid from entering and exiting his brain. In addition to the fluid blockage, this “tonsil” of brain that’s extending downward is throbbing against his spinal column with every single heartbeat. The MRI images also showed that some spinal fluid (but only a very small amount so far) has accumulated in his spinal cord.

The surgeon was most concerned about the throbbing of his brain into the spinal cord. It’s very rare (he mentioned that this was the 2nd time he’d seen this effect with a Chiari patient) and exposes his brain to undue jostling and potential for injury.

The good news is that this can all be corrected with surgery. The procedure was clearly explained and the doctor reassured us that it’s a much less invasive procedure when done on children (adults require a much more aggressive surgery with a longer healing time). And from all accounts we’ve heard, it’s a remarkably effective “fix”, virtually eliminating most patients’ symptoms.

Although we have not yet scheduled his brain surgery, we have been advised to get it taken care of within the next several weeks – early November at the latest. This will include a 3 day hospital stay and a recovery period of about 5-6 weeks.

We’re sad for our little guy that he has to go through this at all, but we’re grateful for the peace that comes from knowing God is in control and loves Andrew even more than we do. We are ready to get this taken care soon – and get him back to his busy schedule of Kindergarten and t-ball!

I promise to continue to update, but please continue to keep my Dad (and Andrew) in your prayers!

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