It's all good...

Okay so I've had this post in draft mode for some time now awaiting pictures. Here it is! More to come, it's been an eventful month - here's how it started...


Well, this post, for a delightful change, is more about happy events in the Soussi-Tanani household than the challenges that have become so regular in our lives. This week, Zach had his first day of Kindergarten. He was so thrilled, and so excited - and admitedly a little scared, but he did great. The whole family walked to the bus stop on Monday (8/28) and waited patiently for the bus to arrive. Getting on the bus proved to be much more traumatic for Mom and Dad than for Zach. With a very sweet kiss goodbye, he was off - and so were we in our car to follow him to school. There was no way we were missing that photo op!


The bus was late arriving at the school, so Zach, and a neighbor and fellow kindergartner, Rebecca were quietly waiting in the All Purpose Room when we arrive. Usually they do not permit parents to the classrooms on the first day - it's a bit chaotic as you can imagine - but the bus delay was a great opportunity for us. We were able to escort both Zach and Rebecca to class - that meant even more pictures, and an extra chance to say goodbye and have fun!



Zach aged so much in our eyes as he entered the room with a sweet and sing-songy "Good Morning Ms. Nguyen." We teared up once again and then left to go on with our day - and Zach to go on with his.

There are so many amazing moments in our lives right now. So many opportunities to really appreciate our children and to watch them enjoy life. We truely believe that everything happens for a reason, and our challenges have sprouted these opportunities and opened our eyes. Wow, we are so incredibly lucky!

Round two... ding...

Okay, so time to post continues to be scarce. Here's the latest, with pictures of course...

On August 9th, Sophie participated in a fundraiser for the long-term cancer survivor program at the Lombardi Center at GUH. A local Hundai dealer, Don Byers, donated a car to the Pediatric Cancer Foundation to raise awareness and funds for cancer research dedicated to the after affects of cancer treatments and the life that continues once treatment has ended. The car will be traveling along the east coast with an image of Sophie's handprint, along with her name and age. See the picture with the door the kid stamped with washable ink on-site that day, and a picture of the entire group. Hundai and the Foundation presented a check to the Center for $45k to cover expenses related to the first ever national conference on life after treatment. It was a joy to be a part of this important event!
Later that afternoon, Sophie got her first haircut - ever!!! Her beautiful long flaxen locks became an adorable little flippy cut that seemed to age her a full year. My heart melted a bit, but we got through it... with an envelope full of hair of course.

It seems the haircut was just in time! On Thursday, Sophie made counts again (her white blood cells were high enough to not be classified as neutropenic and the risk of infection was reduced). This enabled us to go to the Montgomery County Agricultural Fair on Sunday. It was a hot day, and just as we began to visit the animals, we noticed that Sophie's hair began to fall out. I was interested to read the reason for the hair loss for chemo patients. Apparently, the drugs target rapidly producing cells. This includes duplicating cancer cells as well as hair follicles. As the cells are unable to reproduce, the follicle temporarily shuts down and the hair just slips away. Her hair is quite a bit thinner with some visible bald spots at the crown, but she's still adorable!

Zach had a great time at the fair, completely oblivious to our emotions on the hair loss. Check out his antics. Soph didn't get to go on any rides, but she did win a prize at the duckie game!

In addition to the hair loss, her face has also begun to see the effect of the medication, primarily the steroids. Her cheeks are chubby as can be - again, adorable! I may be biased so see for yourself, I think you'll agree. The less adorable part of the steroids are changes in her sleeping and eating habits. She's a hyperactive junk-food junkie right now. She's sworn off decent sleep, that is no reasonable nap, and she wakes up in the middle of the night, sometimes for a few hours. It's almost like having new born again, except when I bring Sophie to bed now, she flails around much more (and there's much more of her to do so) and beats be about the neck and shoulders with her feet. Daddy gets all the cuddly love and I get bruises! (That's okay, Zach cuddles with me while trying for a TKO with Dad, so we're kinda even on that front). Those girls love their Daddies don't they?

So last Thursday, August 17, Sophie had her second cycle of chemo. Cyclophosphamide, Doxorubicin, and Carboplatin ( It's kinda freaky that I was able to jot those down here without looking, including the spelling - yikes!). This was supposed to be a tough round as the drugs were administered in succession over about 4 hours. As is becoming usual though, Sophie woke up the next morning dancing and singing to Blues Clues. She did so well we're able to go home early in the afternoon. We only needed to make one stop... to pick up an anti-nausea medication at the pharmacy. The hospital called it in, so it should have take 10 minutes or so and we'd be on our merry way, right? Wrong! First the pharmacy had it in a holding pattern, so when we arrived they actually had to look for it on the computer, then we found that it needed prior approval from our insurance. Well I was worried that the medication Soph was given by IV in the hospital would wear off and we'd have one sick kiddie on our hands, so I said I would pay for it and work out the details later. Well, it seems that 30 of these little pills were going to cost us $930 - HOLY COW! So NOT doing that. We ended up with 3 pills at $105 to get us through the weekend. Everything doctor, insurance company and the pharmacy finally aligned and all is well now. We're literally set for the year in anti-nausea meds!

Sophie begins her new day care last week. These folks are great. It will be difficult not going the Bright Horizons anymore (Zach's last day was last Wednesday), but we have faith that once this is over Sophie will be able to return to BH and her favorite teachers. Sophie can and will stay at the new center until her central line is removed. At least six months, but up to twelve. She's part time now, but hopefully we can begin transitioning to full time soon and I can get back to work at some point.

Next on the blogging agenda is Zach approaching Kindergarten. We had orientation this past Friday with his new teacher Mrs. Nguyen - tomorrow's the big day!!! Stay tuned!

Update continued...

Okay last post we had just arrived from Springfield and enjoyed a nice weekend. Tuesday, July 25, Sophie started the IVIG (imunoglobulin) therapy at the Lombardi Clinic at GUH. This is the randomized part of the clinical trial - there was a 50/50 chance that we would get the additional therapy, and we did - woo hoo! The initial treatment is two days of IV infusions that last for 2-3 hours each, then one treatment every 28 days. It's a good thing we link the clinic and the fantastic folks that work there cause we spend a good deal of our week there! These pictures are taken int eh clinic lobby where patients, siblings and parents can enjoy arts and crafts, music, movies, toys, and even video games. It's a lovely, nurturing environment with people to match. Even though we know that there are many other patients and families, we always feel like we are the most important. That is the gift that Lombardi gives us each visit.

We had planned to become inpatient again on Thursday, but Sophie had other plans - she had a mild reaction to the IVIG. With a headache, fever, and nausea, we headed to the pediatric ward (we'll refer to it as C53) late Wednesday night. This was our longest stay yet. After a blood work, an ultrasound and a CT scan, the chemo finally started at 3:30am on Friday along with her first injection of the IV steroid Prednisone. She received two chemo drugs the first day, Carboplatin and Etoposide (VP-16). She received two additional treatments of VP-16 over the following two nights. The Prednisone is two injections daily for at least two months. We're now set up to do these at home too.
In addition to the drugs, IV fluids and an anti-nausea drug were also administered to help ease some immediate side effects. All-in-all Sophie did very well throughout the treatment and continues to be mostly side-affect free and generally happy. Of course, this make us all VERY happy too. We were discharged from the hospital Monday morning, July 31. Sophie's immune system was slightly depressed - she was what is called neutropenic, which generally means that her white blood counts were low and that she is more susceptible to infection. Her body naturally rebounded, but we needed to take some precautions such as keeping her away from sick people, and removing fresh fruits and vegetables from her diet as well as diligent handwashing and food preparation/handling. It sounds worse than it is - she was able to have her beloved bananas, so things worked out well. The picture is from several weeks ago (note the IV in her arm), but her affinity for bananas hasn't changed a bit!

We visited the Clinic last Thursday, August 3rd, and her counts were up so we're able to resume semi-regular operations here at home. We still need to stay away from sick folks and indoor places with lost of people, common sense stuff really - that's not too hard to do though. After the clinic I had the privilege to be interviewed on a local radio station in support of the clinic and the Children's Cancer Foundation that provided the incredible environment at the clinic and in-patient units at GUH. I'll post all of the information when I have it so you can listen on air day.

Yesterday was Zach's 'un-birthday' - he is now officially 5 and a half. We celebrated by going miniature golfing with his cousin Samia who is visiting from Morocco. We all had a BLAST, especially Zach! Sophie was a very enthusiastic spectator, cheering "yeah" or "bravo" each time we got a ball into the hole. Of course the winner was the one with the highest points - on a par 40 course, Zach got a 98, Samia 76, Mike 64 and Allison 50. I'll edit this post with pictures when I get them from Samia's camera.

Well that brings us up-to-date on all happenings. In reflection over the past few weeks all I can see is how lucky we are. We have an amazing bunch of friends and family that through various means have show us incredible support. We are truly touched by your friendship and of course your overwhelming generosity. Each time we think of the precious gifts that you have given us, we are overcome by emotion. Our spirits remain high, our thoughts positive, our hopes high and most of all our love strong. Peace to you all!

We haven't fallen off the end of the earth...

...but we have been really busy for the past few weeks! I hadn't realized that is was so long ago that we posted though. So much has happened. Here goes...

The same weekend after the last post, we gave Sophie a little time to be an almost two year old - a giggly romp in the sprinkler helped with the heat, eased some tension, and provided some awesome 'Kodak' moments. This is our calm before the storm.

On Monday, Sophie had a surgical procedure to insert a port into a vein in her neck that extended under the skin to just above her sternum. The device is called a broviac and has two lines, or lumens, that run externally and allow for IV medicines to be administered without having to use needles each time. She receives her chemo therapy through this line as well as a twice daily dose of prednisone, a steroid, and imunoglobluin (IVIG) therapy monthly, both to help stop the neurological problems. More on this in a bit. The next day, Tuesday, Sophie had a spinal tap (they call it a lumbar puncture or LP) to collect a sample of spinal fluid for the clinical trial, and a bone scan to ensure that the cancer had not spread. We remained in-patient until about 10:30pm that night, then rushed home and packed for our trip the following morning.

On July 19, Sophie and Mom traveled to Springfield, IL - via Atlanta, GA and Peoria, IL - to visit the Opsoclonus Myoclonus Ataxia Syndrome specialist, Dr. Pranzatelli (see last post for more on this). The travel was adventurous to say the least, but the trip went well. We landed in Peoria just as a wild storm hit the area. You may have heard about 37 people being killed from the same storm as it hit St. Louis later that night. We survived the crazy turbulence on the plane just before landing, waited the storm out in the Peoria airport (couldn't get to the rental car through the rain and strain line winds) and then drove through the tail - toward the middle - of the storm for an hour and a half from Peoria to Springfield. I have never seen a storm of this magnitude - lightening was hitting the ground on the fields along side the highway. The traffic kept going though, so, so did we - lest we get crushed by one of the many 18-wheelers going 70 mph down the highway. It is notable that Sophie fell asleep about 15 minutes before the plane landed (just before the turbulence) and stayed that way until we pulled into the Ronald McDonald House parking lot about two and a half hours later. That was one pooped little princess!

The rest of the trip was uneventful by comparison. We met Dr. Pranzatelli the next morning and he performed a spinal tap, collecting spinal fluid for special analysis. We made some friends in the recovery room and then took a looksee around scenic (kidding) Springfield - although I couldn't find a place to stop and buy souvenirs, I did manage to get a shot of Lincoln hanging out on a park bench (that was a drive-by picture I might add - okay we were at a traffic light, but I was in the car shooting through the window - no puns intended on the photography lingo, heh)

Upon our safe return, we were able to enjoy a 'normal weekend before starting treatments. Check the next post - hopefully tomorrow for info on the treatments - to keep you from suspense, to keep this short, and to get me to bed before dawn, suffice it to day they are going well. Sophie so far has only the adverse affects of yucky tasting medicine and mouthwash to contend with for now.

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!