Breath...

Okay, so we know what we're dealing with now. That's the good news. Our attending doctor, Dr. Bracho is on vacation this week, but we are in the very capable and hard working hands of his colleague and the Chief of Pediatric Hematology/Oncology, Dr. Shad. Dr. Shad found a new clinical trial that has been running at St. Jude and just opened up last week for Georgetown University Hospital (GUH) and an affiliated group the Children's Oncology Group. This trial almost appears to have been written for Sophie specifically. It includes chemotherapy to treat her tumors and additional steroid therapy to treat her neurological issues associated with the OMS. What an amazing find on Dr. Shad's part. I think she was even more thrilled that we were!

The Doctors, and staff, at GUH are truly amazing. They treat us as part of their family. After the radiologist found the initial tumor and we were referred to the Lompardi Cancer Clinic, we have been taken in and taken care of like nothing I have ever encountered before. We are so very lucky to have this awesome team on our side.

We spent the day on Friday at GUH and the clinic getting test done and trying to work out scheduling additional tests to meet the protocol requirements and our trip to Illinois. This next week is going to be a doozie!

Monday we will go to the clinic for a final review and signing of the medical paperwork, then we will go to our neurologist for developmental testing and an analysis and staging of the OMS and ataxia (that's the symptoms that started all of this!) Then a check back with the clinic to get our schedule for Tuesday. So far we are anticipating that Sophie will be registered as an in-patient Tuesday morning, and scheduled for surgery to have a central line and a Hickman device installed in her chest and a spinal tap. This will help her tremendously in receiving medications, blood draws, anesthesia, etc. As long as the line is in, she won't have to be stuck for IVs again. Whew! After the line is placed, she will get another nuclear injection and then a bone scan later in the day. She will remain over-night to do a 24-hour urine collection and then released on Wednesday morning. From there we head to the airport at noon to catch a commercial flight to Peoria, Illinois (through Atlanta) where we will rent a car and drive to Springfield, Il - only an hour and a half drive - much better than Chicago at 3-4 hours!

We've lost our good rate at the Hilton hotel, so I'm hopeful that we can get into the local Ronald McDonald House. They tell me it's right across the street from the center we will be visiting - convenient! We'll spend the day at the National Pediatric Myoclonus Center seeing the national (and probably international) specialist Dr. Pranzatelli. Sophie will get another spinal tap for specialized testing at the center and a medical and neurological work-up as well. This trip will help us to decide the best course of treatment for the ataxia and underlying neurological issues, and to ensure that we act quickly and appropriately so that the symptoms do not worsen while Sophie undergoes treatment for the tumor.

Okay that is enough for one post. You get the idea, tests, tests and more tests. All of this is required to begin treatment on the protocol and is basically to ensure that Sophie is in the best physical health when she begins the chemo to achieve the best results. We fully expect to be looking back on this at her third birthday as a distant memory. So anything we can do now to hasten her treatment and recovery is a worthwhile investment. Anything for our princess!

Check out today's pic. Zach decided to jump in the tub to scrubadubdub with his little sis. They both had a blast, and I got all wet! Enjoy!

Everyday is a winding road...

Yesterday Sophie completed one of the final tests, a nuclear test called an MIBG. We also received the final, definitive biology report from a clinical trial we entered. Both test have curved our path once again. The biology report showed that the tumor is actually a ganglio neuroblastoma. The MIBG confirmed this finding and showed an additional 'spot' in an adrenal gland. This obviously not the news that we wanted to hear, but it is a definitive diagnosis and we can now proceed with treatment. Today and early next week Sophie will undergo another battery of tests to ensure that she is in good enough physical health to withstand the chemotherapy.

We will meet with the Doctors again today to map out her treatment plan and set a schedule. We will also discuss if we will continue to pursue diagnostics and treatment for the underlying OMS at the center in Illinois. We'll post more as we know it. Keep those Prayers coming, we're not through this yet, but we do know that this too shall pass!

Here's a picture from this morning that shows how great Sophie's spirit remains. And, not to be overshadowed by his little sister, Zach lost another tooth - check out his new gap!

Cuteness...

Here are some cute pics from the hospital and since we've been home. Also check out two new posts below!

New week, new diagnosis!

Quick update, Sophie came home from the hospital on Saturday, July 1 full of smiles. Since then, we've been working with the docs to find the next steps. So we left off on Sophie's condition with a preliminary diagnosis of a benign ganglio neuroma. An awesome finding, but that still left us with the puzzle of her symptoms. Last week we saw the chief of pediatric neurology at Children's hospital for an other opinion, and also met again with the oncologist for a review and look forward. I think we now have a plan!

Diagnosis: Opsoclonus Myoclonus syndrome (OMS)

We have been referred to the leading specialist in the country, and possibly the world, in this very rare disorder. He and his practice are located in Springfield, IL, at Southern Illinois university. It seems that OMS could be a residual effect from the tumor. Although we do not have the complete pathology and biology studies on the tumor biopsy, we do know that at some point it was growing as it attached itself quite firmly to her aorta. While the tumor was active, it was most likely a ganglio neuroblastoma, which has symptoms very much like what Sophie has been presenting. It appears that Sophie's very efficient immune system made haste of the tumor and effectively shut it down before it could develop further (only speculation at this time, but an interesting theory nonetheless!). The reason she still has difficulties walking seems to be due to what the specialist in IL calls 'friendly fire.' Her immune system cannot tell the difference between the tumor cells and specific brain cells and has continued to try to eradicate the 'invader' that is actually good stuff that controls her balance, eye movements, and speech. There is a great article on the OMS site "Friendly Fire" that explains the situation much better than I can. http://www.omsusa.org/pranzatelli-friendlyfire.htm.

So, in order for a definitive diagnosis, Sophie and I will travel to Springfield July 25th for a spinal tap that will serve for both diagnosis and will aid in setting a treatment plan. There are several options, but we will not know what road to take until Dr. Pranzatelli has a chance to see her in person. The good news is we can get the treatment locally at Georgetown/Lombardi and not in IL.

We have been preparing for another test this Wednesday, a nuclear test called a MIBG, that will determine if Sophie has other instances of the ganglio neuroma or other forms of tumors elsewhere in her body. We do not anticipate that this will be the case, but this has been one surprise after another, so we're not overly confident! In addition to the initial and intermediate benign finding of the tumor, they also did a bone marrow biopsy the same day and it was negative as well. Things are definitely looking good. The side-affects of OMS and it's treatment are apparently difficult, but the treatments are usually successful in putting it into remission. As we always say, this to shall pass! Thanks for your continued prayers and good thoughts! We love you all!

Average guys doin heroic things...

Riders from rally Across America paid a fun visit to the pediatric ward and brought goodies for Sophie while she was recovering from the biopsy last week. They sang her a cute song, and even filmed her for possible appearance in a documentary they are writing about the journey. The guys in the photo, Austin and Tom, are amateur cyclists who are right now, peddling 5,000 miles around the eastern US to raise funds and awareness of childhood cancer. You can read more about their amazing and heroic journey at http://rallyacrossamerica.org and their trip blog http://www.rallyacrossamerica.blogspot.com/. The folks making the documentary also have a blog of the trip at http://veritaz.blogspot.com/. Sophie just knew that these guys were silly and fun, not that they could make a difference in her life as a survivor (more on this in a bit) and the lives of other children that have or will get a devastating diagnosis of cancer. They are heroes in my book! Thanks to them for letting us share in just a little part of their quest!

Things are looking good...

Well, Sophie made it through the surgery like a champ, but then we expected nothing less! The good news is the preliminary evaluation of the tumor indicated that it is a ganglio neuroma - that's a benign tumor - woo hoo! There are additional tests to the samples that were taken that will show if the tumor exhibits any signs that it could mature into something more serious in the future. We won't, however, have these results until late next week. Right now we are cautiously optimistic.

Tonight, Sophie is resting comfortably and has started to drink and even take in a little apple sauce. These are all good signs of a progressive recovery. Thanks so very much for your continued thoughts and prayers! They are working!!! I'll post more pics soon! Check back for an update tomorrow!

It's funny how life can change...

What an interesting coincidence... On the day of the last post, we started our current journey. On that day we saw the pediatrician to see why our little Sophie was having problems with balance. The week before, she began falling frequently at at daycare, six instances serious enough to require incident reports. We thought we would hear that she had an ear infection or some other mundane affliction that would soon pass. That was not the case at all. On the contrary, her ears were clear, as were her lungs and all other vitals were normal. But still she could barely take a step without requiring a lunge to her rescue.

The Doctor referred us to a neurologist. That was the beginning of the nightmare.

Here we are, two months later, and we are seeing an oncologist. Not for the initially feared brain tumor, but a more inocuous, yet still menacing tumor in her abdomen. As if that weren't enough, any affliction that could find her small body in the past several weeks has. From a bout with lice - we thankfully avoided a major family breakout with diligence and hard work cleaning and quarantining just about everything she touched that week - to a life-threatening case of croup that brings us to this past week and a 4-day jaunt at the GUH PICU.

Today, joyfully, Sophie is happy and giggly - keeping the spirits of the family up with her latest antics. The photo says it all...

Sophie's self costuming creates a nice cross between Aunt Jemima and a tavern wench! Cute and crazy! That's our baby!

Our Batty Bathing Beauty!

Okay, I said she was goofy, but this is Sophie's best shot yet! She's going to be a performer, just like her big brother. Enjoy this pic, there is sure to be more of Sophie and Zach's antics to follow!

Yummy, yummy, yummy...

Sophie's got cereal in her tummy! Mmmmmm! She's quite good with the spoon, but still makes a mess. Some day's she even eats better than her big brother. A ver particular child, don't even think about taking something out or her bwol or off her plate to make life easier. No siree, she is determined to play her cards the way they land. Sophie is very different than he brother. It's amazing to see the range of personality between them. They have so much in common, yet see the world though very different eyes. It is a wonderful blessing to enjoy each and every day!

Zach and Sophie are having a blast in the play room! They love getting into all of the toys and making a mess. Now were working on clean-up strategies - either that or getting rid of a bunch of toys! Zach couldn't love this baby girl more, he just loves to give her higs and kisses and show her how to play with stuff. He's a great big brother!
 

Put on a Happy face...

Sophie is the master of the goofy face! What a goof! 

Ahhh to be five...

In February, Zach turned the ripe old age of five. He's sucha big boy now. He had a dance party with all of his friends - what a blast! 

Winter Wonderland...

The neighborhood was beautiful like a delicate dessert topped with a sprinkling of powdered sugar! Delightful! 

Frozen Delight

Sophie thought the snow was a great big desert and kept eating it! Mmmmm! 

For the first time in many years we weren't on vacation when the big snow hit! Zach had a blast playing with his friends! 

Here's the family with the dastardly Captain Hook! The picture was great, but the Capt. and Mommy had a bit of a squabble over tinkerbell on her shirt! All in fun! 

Up above the world so high...

Here she is at the top of her world! 

Like a diamond in the sky...

While in Disney's Magic Kingdom, Sophie had a magical time hanging out on Daddy's shoulders! Against the backdrop of the beautiful clears sky she is like an angel! 

Cute as a Bug!

Sophie's first real Halloween was a blast! She 'walked' for blocks, 'pushing' the stroller. She didn't get any candy, but then she's already sweet enough!

 

Trick or Treat!

Nassim and Zach had a great time trolling for candy on Halloween 2005!