When it rains it pours...

So the title of this post may seem a bit ominous, but actually, just as the rain and cool temperatures have subsided over the past few days, things have been good. Sophie is milling about the neighborhood like a regular little girl now. Even playing in the dirt! Right now it's pouring good times!


Since her central line catheter has been removed from her chest, she is even more bubbly than usual. She has always had such charm, with a party seemingly following her around all the time waiting to happen, but now, with no real restrictions, she is so full of life and it's just wonderful to watch!

Since Easter, there have been some difficult times, including a stomach virus that plagued the house putting Sophie back on IV fluids for a few days, keeping Zach home from school for a day and ending a night at CPK early for Mike. Mom got a respiratory version of the virus lasting for several days, but never enough beyond annoying to stop regular activities - and there were many!

We've also been struggling with oral medications for Soph. She has always hated any medications by mouth, but without the central line, there's just no other way (and we want to avoid putting line back at all costs!) We tried all sorts of creative things, like oral disintegrating tablets, a flavored liquid version, and just plain old pills. We tried hiding it in food - yogurt, frozen yogurt, spinach dip, olives, berries, bananas, and other things -- no luck! Finally we tried grinding the pills and putting them in a little bit of apple juice. We put a gummy candy in her mouth and she takes sips and eats more gummies until it's done, usually about 20 minutes. Then we have a big dancing and clapping party to celebrate! Sophie takes any opportunity during the day to tell others that, "I take my medicine, Yay!" We're not arguing with the process, it works!

We've been spending a great deal of time enjoying home lately. The weather this weekend kept the kids out and playing late into the evening each day. Sophie wouldn't even stop to take naps, but fell asleep before her head hit the pillow!

Zach is doing great lately, he's reading and spelling and enjoying math too. He raised almost $200 for St. Jude's Children's Hospital as part of a school sponsored Math-a-Thon fundraiser. It's a really cool program that has the students do math to earn money - who wooda thunk?!? Even better most of it was done on-line. You can check it out at www.mathathon.org. He's been really busy doing Kindergarten stuff, he even lost another tooth last week. A front one at that. He's not really listhping, but it sure looks cute! Tomorrow he heads to the National Zoo for a field trip and Dad is even a chaperon. There's great weather in store and hopefully we'll get some great pictures to post!

We are so happy to report good times, and hope that your lives are doing well also. Best to you all, until next time... Peace!

Bumpity Bump Bump...

Happy Easter everyone! Just for the record, if you have ever been on the guest list for a holiday dinner at out house, please - with all due respect - do not expect another invitation soon! (just kidding of course!) This is our third major holiday since Sophie got sick, and the third time we've spent one in the hospital! Can you believe it. We joke that next time we'll call ahead for reservations!

In any event, the Easter bunny found us and, as usual, we will continue to celebrate for the next week or so.

Sophie is improving. Of course, she doesn't look or act sick. She's tearing up C53 as usual and making new friends along the way. Apparently the infection was in her external catheter, so it had to be removed on Saturday. She has a regular IV in her right wrist now until her blood cultures are clear. we are trying oral versions of her regular, daily medications to see if she will tolerate them. If this works, we can forgoe having a new broviac catheter installed in her chest. At thispoint it's all up to Soph. She's just too little yet to swallow pills with skill. This story is to be continued...

Well, we hope the bunny found you too, and that you've had a hoppy holiday! Till next time... Peace!

Bumps in the road...

So the last post left us excited and looking at the road ahead filled with improvements and a return to 'normal' life. We are still thrilled with the news of Sophie's remission, and optimistic about or future. With that said, this is turning out to be a trying couple of weeks!

There are great things, like Spring Break from school this week - too bad it was on my calendar for next week (oops!) We've managed to get some fun time in for Zach after all, especially much needed one-on-one time with Mom and Dad. On the down side, Scheduling is much more difficult than I ever thought possible after returning to work. There just aren't enough hours in the day, no matter what your circumstances! Sophie has been waking in the night again and practicing her fancy footwork on our bodies as we try to sleep (the up side, her leg strength is quite improved - the down, we're battered, bruised and tired!)

Our quest for just the right med for Zach's ADHD is nearing the end as we now adjust dosage to see the degree of effectiveness throughout the day. Zach's school also just sent a note indicating that he failed the last vision test - apparently when Zach was mixing up letters in reading, it wasn't because he was being difficult or lazy, rather they were/are too blurry for him to distinguish well - how bout that!?! Taking control of the situation, Zach promptly selected a pair of 1.5 magnification reading glasses from the dollar bin at Target. He was disappointed in the selection of shapes and colors, but finally decided on a lovely hot pink plaid pair - thankfully they only lasted a few hours and then were broken beyond repair - Awwww (Chuckle!).

Next on our list of things to do was to watch Sophie's eyes for further signs of the O in OMS (opsoclonus, or dancing eyes). There are traces, but it can be deceiving, so we're going to stay on the current course of increased steroids until we can get a good neurological consult - probably in a week or so, it's just a matter of scheduling!?! Well, that was put on hold just as Soph came down with a fever Wednesday evening. It was quite high - 102.8, so we headed off to the emergency room after a consultation with the oncologist. This was anticipated to be routine blood work, line culture, and a dose of antibiotics, but the fever would reduce, but it actually rose a bit, so they decided to admit her. There were no beds in the general peds ward, so we ended up in the Pediatric ICU - much noisier and disruptive by design than the regular ward. Sophie got a little sleep, Mom on the other hand, not much! Today we found that there is a possible infection in her line, so what started as a 3-4 hour trip to the ER may turn into a 3-4 day visit to C53. While it's nice to see the friendly and familiar faces at GUH, it would be nice to celebrate a holiday at home! Hey, maybe we'll just get Chinese take-out like we did for Christmas and call it a great day! We'll play it by ear.

All in all things are good, but as you can see, very hectic. We are thankful for those we've been able to see and talk to lately, longing for those we have not. We are wishing safety and joy to those who will travel this holiday weekend and beyond. And sending our thanks and love to you all, wherever you are and wherever you are going! Peace.

As promised, here's some recent, and not so recent pics - enjoy!

Free at last...

Happy Spring everyone!!! So the weather is really shaping up, but the past couple of weeks have been very stressful, full of tests, new schedules, an annoying respiratory bug that has plagued each of us in its own way, little sleep, and weird weather happenings. Today, however, most of that just drifted away as we received news that Sophie's latest nuclear scan, the MiBG, came back clear. This means that the scan did not detect any traces of the cancer - all together now... WOO HOO! The CT scan did show that there is some residual tissue left from the surgery and chemo, but the MiBG confirms that these are mature cells with no malignancy - once again, can I get a WOO HOO!?!

I don't think we had expected anything less than the all clear, but we learned through experience to be prepared for the worst! Her doctor tells us that there is a 10% chance that the ganglioneuroblastoma could recur as growth in the current tissue or the formation of a new mass. This rate drops dramatically after the first year, so we will keep a good eye on her for the next 12 months with regular scans. We expect nothing but great news from here on out!

The news on the neurological from is not as great, Sophie has had a bit of a set-back in treatment. The opsoclonus, dancing eyes, has returned a bit in her right eye, but is not considered severe as it doesn't seem to interfere with her vision, but is noticeable periodically throughout each day. We are doubling her dose of steroids in hopes of reducing the problem. Keep your fingers crossed on this one, we should know if this is effective in a week or so. This small set-back means that the steroid therapy will last longer than the originally anticipated 12 months. Actually the doctor running the study indicated that most children require about 18 months on the steroid therapy before weaning completely. More watching and waiting.

Other happenings include Music Night at school tonight. Zach and his fellow kindergartners and the first grade classes sang a number of melodies, they even had hand movements and some dance moves thrown in! It was very cute, and of course we have pictures and video (pics to hopefully post tomorrow). Zach is doing well on his now forth ADHD medication and we're hopeful we've found a long-term solution. He just started this particular drug on 3/20, so we'll report back when we have more time to observe the affects.

Sophie's hair is growing back - blond! Not quite as blond as before, but light nonetheless. Again, pics are pending.

Mom and Dad are getting through one day at a time. I've returned to work - albeit on a very limited schedule until I can get a handle on all of the post chemo and OMS related appointments for Soph. We're getting there, day by day, week by week.

Thank you all again for your prayers and positive thoughts! They worked and continue to bless our family. Until next time...Peace!

Catching up...

Okay, so we've been REALLY busy with life lately - so busy we haven't had time to post. But, that's a good thing, right?!?

Since the last post Sophie has completed her second round of chemo and is now awaiting nuclear and CT scans to see what's left of that pesky tumor. We were scheduled for this past week, but we had another little run-in with croup. Harken back to last June when we spent a couple of days in the pediatric intensive care unit for the same illness. This time it was, thankfully, not as intense! However, the first night, Tuesday, gave us a bit of a scare - enough so that we called the paramedics. Sophie was breathing much better once they arrived and we decided to drive her ourselves to the GUH emergency room for treatment. By 6am she was asleep in the ER and we awaited the clinic opening for an appointment scheduled for that day. The nuclear injection was scheduled for that afternoon and the scans for the following day, Thursday. Sophie needs to be sedated for the lengthy scans and any compromise to her breathing and airway is risky, so we're rescheduling for next week.

Next week also begins another chapter in our progress. Mom returns to work after more than seven months. There are still clinic appointments to attend to, physical and occupational therapy, and the ongoing possibility of hospitalization for fever or other complications from Sophie's central line. But, this is a step in a positive direction for everyone, and hopefully a sigh of relief for those that have been covering for such a long time. If you're reading this, thanks you! - you know who you are!!!

Zach is enjoying school, and started his ADHD meds a couple of weeks ago. We're still trying to figure out what does of what drug is best, but we are definately seeing improvement in his ability to control impulses. And, we still have a very creative and energetic boy, so our greatest fears of medicating the Zach out of Zach are thus far unfounded. Whew!

Well, there are a ton of pictures to post, but unfortunately, no time to decide which ones and upload now. Hopefully next week. We just wanted to post a quick update and hello to let everyone know we're still hanging on and in some respects even moving on!

Love and peace to you all!

Happy Birthday...

So our big boy is turning Six!!! Where does the time go? Tomorrow (2/6, the actual big day) is also the 100th day of school, so there will be a bunch of activities to go along with our cupcake feast! Yesterday, Sunday, Zach and his buddies had a blast at Chuck E. Cheese, playing games and dancing. Afterwards, a group came back to the house for lunch and the kids ran free in the basement, again having a blast! The best part was spending time with friends and family that we haven't been able to see much lately.

There is nothing like getting everyone together around the kitchen table and eating and talking and eating some more and talking some more. At one point, just after finishing the main meal, the conversation digressed into an in depth discussion of diaper changing - who had cloth diapers, who used a diaper service and who, unfortunately was the diaper service. We have it easy these days gals! Disposable diapers and zip-top bags rule!!!

So this is just a post to say things are going well. Sophie had a CT scan last Wednesday that was thankfully clear - except for what is expected to be residual scarring from the surgery. Our LAST scheduled cycle of chemo is next week. Then we will need to monitor her blood counts, and continue to check her weight weekly. A few weeks later we will have another MIBG scan that will let us know if the chemo has done its job and removed all traces of the cancer. We're knocking on wood, hopping over cracks, and keeping positive thoughts that all will be well soon in the oncology department soon. once we clear that hurdle, we'll focus more on making sure that the neurological issues are in check. We will start physical and occupational therapy this week, and will have a developmental assessment next week to see if she's on target. We will also begin scheduling time to go back to Illinois to see the Opsoclonus-Myoclonus specialist to see Sophie's progress with treatment.

This coming weekend, Mom will get some much needed away time and attend a Creative Memories convention. Wow, two days without cooking or cleaning, or changing diapers. I see a spoiled Mom in the future.

Whew! We're busy as usual (and tired :), but smiling! We hope you're smiling too! I know I keep promising pictures - these are from Christmas-time, the family shot is from Christmas eve at our home away from home, GUH C53; Zach and Sophie in the grass is actually the day we cut down our Christmas tree - it was about 68 degrees; the last "I'm too cool" is just a bonus from some fun time at the hospital. We'll get more recent shots on the blog once they get out of the camera!

And the beat goes on...

So we're nearing the end of January and we're back at GUH again for scheduled chemo. Since New Years, we been idling along, still trying to catch up from 2006. Sophie has good blood counts which has helped a bit by allowing her to go to day care a few days a week. The last I posted, we were preparing for Zach's colonoscopy. The two-day prep was a bit tedious, but Zach did wonderfully, taking it better than most adults might!! The procedure took a mere 20 minutes and they found the expected single polyp and removed it. The polyp was sent for biopsy, and thankfully returned with positive news of a negative finding!!!

As unnerving as the year has begun, we have only good news and hopeful outcomes coming our way. As I write this, Sophie has just completed the seventh of eight Chemo cycles. We will return in three weeks for the eighth and final treatment. Woo Hoo!!! This round is really taking a toll on her little body. Between the chemo and surgery, she's lost about 4 lbs since we started treatment in June. That doesn't sound like much, but it's about 15% of her total body weight. she seems to be rebounding a bit thought with spoonfuls of peanut butter, calamata olives, and hummos among her favorite foods right now. She's also much more tired than usual, quite ready for naps and bedtime - but still full of energy and difficult to catch all other times!!! She's a tricky one from doing chin-ups in her hospital crib to running circles around her IV pole, she's basically unstoppable! At night we had difficulties keeping her in her crib. She would climb out repeatedly after being put to bed. Not only was this annoying, but dangerous, so we lowered her crib to a toddler bed - her big girl bed! Go Sophie, growing up now!

Well that's the medical update. Now for the fun stuff...
This past Friday Zach attended his first school dance, the Stonegate Kids Ball. Mike attended as his chaperon and reported that they had a blast! Saturday, they both headed for more fun at a special event sponsored by Georgetown University through the Hoya Dreams program. They attended at Hoyas basketball game at the Verizon center with other families of sick children and a slew of Hoya athletes. Again Mike reports that they had too much fun! The pics are still in the camera, but we'll include them in the next post.

Our next big event is Zach's 6th birthday, which is a mere 10 days away. We are scheduled to gather at Chuck e. Cheese for cake, pizza and games on February 4th and then home that afternoon for a family lunch and then the Superbowl later that evening. It is sure to be a fun, but exhausting day!!!

Stay tuned for pics and updates soon! Until then, Live, Love, and don't forget to Laugh!!!

Happy New Year...

We are sending wished for a wonderful New Year to all of our family and friends! May 2007 be healthful and prosperous for you all!

Today we are waiting for discahrge from GUH after a night's stay in C53 for Sophie's sisth cycle of chemo. Everything is going fine, and we hope to be on our way in an hour or so. Sophie hadled everything great as usual, but had a little nausea and vomiting early this morning. After going back to sleep for a few hours, she woke up asking to eat and threw back a banana and some cereal, so the tummy is much better now.

So far so good for the new year, Zach is back to school, and we're hoping that Sophie will be able to go back to daycare net Monday, even if only for a few days. We all need a break from each other following the holidays.

Santa was very good to our little munchkins. Zach got an acoustic guitar which he has decided he already knows how to play, so he won't need lessons of course. Sophie got a Disney Princess kitchen and tea set which is keeping us all busy keeping it put away. Zach has decided he is The Handsom Prince (not price Charming - as he was mean in Shrek 2 - Zach logic!), Sophie is Cinderella (of Course), Mom is princess Aurora (it's a blond thing I guess) and Dad is the King (or the Prince's Dad as he calls him). Sophie and Zach bake us cookies and serve tea on a regular basis now. Luckily there are no calories!

Zach's teacher had a baby boy last week, so he has a new teacher for the rest of the school year. He seems to like her very much and is very excited about school.

Well, we've been dedicating a bunch of our time and effort to Sophie's health for some time. Now, it's Zach's turn. He has had some blood in his stool for a couple of months which a pediatric gastrointerologist tells us is probably what is called a juvenile polyp. We've scheduled a colonoscopy for January 18. They will Check things out and remove the polyp. The doctor doesn't think that this will be a long-term issue for Zach - just another inconvenience. Lucky for Zach he is familiar with the environment here at GUH, so he doesn't have anxiety about the procedure. The major part ofr him will be the preparations - a liquid diet for two days prior (Can you make a chicken nugget and freich fry smoothie?) That same week, we are seeing a specialist to do an ADD/ADHD assessment. We've been putting this off hoping that he would 'grow out of it', but his impule issues are starting to affect his schoolwork so we want to get things on track while the school demands are still low in kindergarten.

So that's an update for the beginning of our 2007. Everything is actually moving in a very positive direction - although it seems to have some bumps in the road. We are all in great spirits and ready to take on whatever life throws at us. Our family is stronger now than a year ago!

Wishing you all well - those near and far. Youare always in our thoughts and in our hearts!

p.s. - a special shout out to our nurse friends You know who you are! - those that are returning from travels soon - we can't wait to see you; and one who is leaving us for a new adventure - all the best and thank you!

We wish you a Merry Christmas...

You'd think the prospect of not being home for Christmas would make us sad. On the contrary! Much to our amazement, we are even more grateful for the holiday and for our family and friends than I ever remember before. It seems that when you take away all of the trimmings, there is an amazing spirit left that fills your heart with joy. We are so grateful to be among friends here at the hospital. This has literally become our home away from home for the past few months and we are privileged to spend another holiday with the dedicated and lovely folks here at GUH pediatrics! If we can't be home for Christmas, we can't think of a nicer place to be!

Sophie's blood counts continue to be low, however her spirits are constantly high. The doctors tell us that if she reaches a specific level this evening we can go home before Santa arrives! If not, possibly tomorrow. Gwamma and Paw Paw are coming this afternoon for a Christmas visit which will definitely add special cheer!

Warmest greetings of the season to all - may there be peace on earth or at least in our hearts!


Here's a pic of Zach and Sophie with Santa and Mrs. Claus at the clinic last week. This Santa rides a motorcycle for the Fairfax Police Department when he's not delivering good cheer and presents to GUH pediatric patients!

Bloom where you are planted...

So, it's two days till Christmas, and all through the house, not a creature is peeping - well, maybe Elvis the cat. Yes, yes, we're back in the hospital.

Our stockings haven't made it to the mantle yet, but a beautiful, fresh cut tree stands in the living room - without lights or ornaments yet, but big and fat and smelling like Christmas!

All is basically well, but counts from the past few weeks have shown that Sophie is anemic, so we scheduled a transfusion for this morning at the clinic. This morning, however, Sophie awoke with a fever of 101.9, so we came directly to the clinic anticipating that we will be here for a few days to get IV antibiotics and watch daily counts. Yesterday her Absolute Neutrophil Count was quite low (.18 - normal begins at 8.1). Today the count is up a bit to .5, so it's looking better. We're hopeful that we'll be home for Christmas, but have made arrangements to bring Christmas to GUH, just in case.

We're thinking of all of our friends and family - that's YOU - this holiday, and miss you so very much. May your holiday be happy and healthy, and may Santa bring everything on your list - assuming you haven't been too this year!!

We'll update as we know more! Much love to all!

Okay, so it's been awhile...

Whew, the last few weeks have been a whirlwind. As if dealing with a toddler with iv lines attached isn't enough, we've been trying to get ans stay in the Christmas spirit and get all that needs to get done, done! As of this moment, there is still a Halloween flag waiving in front of our house, as well as a large 'Happy Halloween' greeting prominently displayed in our front window. Even the mailman has made comment regarding it's untimeliness! Oh, well, just another thing that isn't getting done in our house in lieu of spending time with the kids!

Despite the fact that we are once again in the hospital, this has been a great week for us. Sophie's damaged lymph node seems to have healed up so the drain that was in her belly following surgery was finally removed - Whoo Hoo! She was also on the IV nutrition and since she can also return to a fairly normal diet, we stopped that too! She was IV free for a day and a half or so.

We returned to GUH Thursday (12/14) to begin the second round of chemo. Sophie had a post-surgical nuclear test, the MIBG and a small undefined spot appeared in the location of the removed tumors. We had hoped that all was removed, but were aware that there would probably be some residual tumor left following surgery. Recall after the first surgery, the surgeon indicated that the tumor could not be removed completely as there was not a plane between the tumor tissue and the artery - removal could have caused a catastrophic tear in her aorta so it was not attempted. The hope was that the chemotherapy would cause a plane to form between the tumor and the aorta. This did occur, thus the tumor was able to be removed. The problem is that the tumor is the manufacturer of the plain, not the bodies' healthy cells, so the plain is left behind when the tumor is peeled away. Because of this, we took the advice of our doctors and have begin another round of chemo. We are expecting that this will be her last round!!! We are headed home tonight after chemo - actually right about now, we already have the papers!!! Can I get a Whoo Hoo!

As usual, Sophie is in amazing spirits. She continues to entertain those that surround her, including her own family. She has quite a vocabulary now. My personal favorites... 'mon and 'mere - come on and come here. Also, the secretary here on the pediatric ward is Maria or Ma-wie -pause, pause, pause- a. There is so much more!

Zach is really coming into his own these past few weeks. I believe he truly understands now what is going on. He told me that he was worried about his sister, but that he thinks she will be okay. We think so too!! So will we all!

As the Christmas holiday approaches, we are thankful for you all and your thoughts and prayers. We are hoping to see you soon and to begin reconnecting our lives to yours. We still have a few months to go, but there seems to be another light at the end of the tunnel, this time there aren't any whistles associated with it!

If we don't get back to the blog before the holidays, may health and happiness grace you and your loved ones this holiday and throughout the new year. Peace to all!

Rounding out week three...

Okay, so we're still at GUH! Sophie was allowed to start eating again yesterday and she dug right into her fat free diet! Today, however, she is not taking the whole diet thing very well, but we're working on getting her some flavor. At this very moment she is standing on her head in her crib after waking from a two-hour nap. All in all we are coping quite well with our new normal, but are also looking forward to
being home soon!

We will have our home care service at the hospital this evening to show us how all of the medications and pumps will work once we're home. Hopefully we won't need to be on themeds for too long. If all goes well with the eating we'll go home tomorrow - Woo-Hoo !! Just so we don't get to comfortable at home though, we are scheduled
to be back in the hospital next Wednesday (12/6) for some post-op baseline tests and to start the next round of chemo. I can't say enough how great the folks here are and how easy they make it for us to be here so much.

i hope to post some recent pics soon - thanks for reading! We hope we can see you soon!

Still here...

At Georgetown that is. We're approaching day 14 now, and it looks like we have a few more ahead of us yet. Sophie has been taking a bit longer to heal that we were hoping. But we're all in remarkably good spirits, including Zach, and of course Sophie. Sophie makes friends wherever she goes and usually relies on the nurses and other staff at the hospital for entertainment. This week she is spending time with another patient, Teresa, who is having chemo. Teresa is five years old and has a cast on her arm and one on her leg following surgery to remove a tumor from her arm and repair it with part of her leg. Although she is getting stronger, keeping up with Sophie is tough even for us! They do visit each other throughout the day and even did an art project together. It's nice for Sophie to get to know other kids going through similar circumstances. It's also nice for the parents to have an opportunity to talk about all of the changes in our lives since diagnosis - we take support any way we can get it these days - and who better than someone who is living the same reality!

Well, after a week of trying to get Sophie to eat, we are now on a no food or liquids by mouth 'diet' = or NPO. Apparently, a lymph node in her belly is leaking and needs time to heal. This requires a special drug, Octreotide, and to take it out of action - i.e. no food going in, nothing for it to do. So, for the next week or so, Sophie will rely on IV nutrients called Total Parenteral Nutrition (TPN). We are waiting for our home care company to acquire the drug, and to get us the equipment we'll need to take care of everything at home. Because the Octreotide and the TPN are both IV infusions that are given over 24 hours, Sophie will need to have a pump or some other device that will administer the them continuously.

So it looks like we'll spend Thanksgiving at the hospital. Probably just as well - we'd feel bad enjoying a feast without Sophie anyway! We also have the pathology report which shows that all of the masses removed are tumor and have traces of neuroblastom. They are all classified as ganglioneuroblastoma. This means we will definately need to do another course of chemo (4 cycles, 21 days apart - jsut like last time) to ensure that there isn't anything left t the original site or anywhere else. Although all of the visible tumor was removed, it is possible that there were microscopic traces of tumore left that could grow. We are still awaiting the final pathology review and report but don't expect that there will be new information at this time only confirmation of what we already know. We are scheduled to begin the next round of chemo Dec. 7. The good news is that this schedule will allow us to be home, together for Christmas.

As always we'll post more when we know more - most likely once we get the little princess home! We hope your holiday is happy and healthy. Stay safe and stay in touch! We'll be thinking of you all and are continually grateful that you are with us!
Happy Turkey Day! Gobble Gobble!

Poopie!!!

Okay, so this may not be an exciting word or concept for you, but we have been waiting - not so patiently - for Sophie's stuff to start working again, and this morning they did!!! WooHoo ! As you can imagine, she is in a much better mood now, pretty much back to her old Sophie-self. Whew! Today marks the seventh day in the hospital - ugh, and there's probably two more to go. Since she just started eating this afternoon, theDrs . will want to watch for at least a day to make sure that everything is working as it should. Sophie also still has a drain in her abdominal incision that will need to be removed, most likely Friday (hopefully just before discharge!)

So, before the magical poopie, we were trying to cheer our little sweetie up with a variety of things - we tried her big brother Zach, but this had only the opposite affect as he was so happy to see her that he wanted to be as close as possible
- not whatSoph had in mind! We did manage one adorable pic of them last Friday night when she was still in the PICU.

We went for a walk, tried games and toys and coloring and crafts, nothing worked until a very talented young man, Robbie Schaefer, came to the pediatric ward to entertain on Tuesday. He played his guitar and sang enchanting and silly kids songs - Sophie was hooked! Apparently, Robbie is Sophie's answer to JustinTimberlake ! She is like a groupie or something. Robbie generously gave us a copy of his CD - and he even signed it! Sophie would not let it go. She even fell asleep for her nap holding the CD case close (see pic). I have to admit I was equally impressed with Robbie's silly and endearing songs (I didn't sleep with the CD though!). Check out Robbie's web site for a sampling of his songs and to learn more.



Well there is a bit more clinical update pending but I'll save that for the next post - time for bed now. The news is good so far, we'll probably do another round of chemo just to be safe, but it seems that they got it all! Until next time... be safe and well. We think of you all often and can't wait to see you again!

The morning after...

So Sophie is recoving nicely from a much longer than anticipated surgery yesterday. the initial estimate from the surgeon was five hours, and they were in the operating room for more than eight. The extra time allowed them to remove all of the primary tumor as well as the two additional masses thought to be lymph nodes. The samples have been sent for the biological studies and we now patiently await the results to see our next treatment steps. We are hopeful that we will have the results within a week or so.

for now, sophie is resting comfortable in the Pediatric Intensive Care Unit (PICU) at Georgetown. She is hooked up to a bunch of machines and monitors with a foley catheter to remove urine, and an NG tube in her nose to remove the yuck from her stomach.

It looks like we'll spend another night in the PICU and then move to the regular pediatric ward tomorrow. The current plan is that we'll be here until about Tuesday, but that depends on her progress over the weekend.

We'll post more when we know more and maybe even a few pictures. Until then, keep the prayers and thoughts coming! Thanks to you all and much love!

Now beginning phase two...

We met with the doctors last week and verified what we had gleaned from earlier telephone conversations. As a result, Sophie is confirmed for a second-look surgery on November 9, at 9:30am. Meeting with the surgeon especially provided a clearer picture of where we were (following the last surgery) and where we are now.

Apparently, during the initial surgery, back in July, the surgeon determined early on in the procedure that he would not be able to remove the tumor completely without unnecessary risk. At that point, he made a decision to only take what he needed for biopsy and to possibly return later, after treatment, for a second attempt. The doctors anticipated that the course of chemo has made changes to the tumor(s) and that it may be possible to remove all of the tumor, and the other masses, this time. We are told that sometimes the chemo creates a membrane around the tumor that would
allow for a plane between the mass and the artery, making the removal less risky. We are also told that this should be Sophie's last surgery as there would be no benefit to trying again if it is not successful this time.

Once pieces are taken, they will be sent for a biology study as we did the first time. As noted in the previous post, this, combined with the level of surgical success, will tell us our next move. Fortunately this does not affect her prognosis. However, it probably will extend the length of her treatment.

It has actually been an okay week or so with Sophie off antibiotics and with high enough blood counts to be a "normal" two-year-old for a little while. Halloween started on Saturday with our annual neighborhood gathering, and last night was great fun for everyone. Zach was abionicle robot and Sophie a fairy-somthingerother. Unfortunately Mike became ill on his way home from work Halloween night and was stuck in bed for the bulk of the festivities. He was close to fine this morning except for being a little bummed that he missed all the fun!

We hope your Halloween was joyful and safe. Look for another progress-post this weekend (pending access in the hospital). Until then, here are more pics to enjoy.

Things could be worse...

Well, Sophie has had all of the major post-chemo tests now and, unfortunately, that are not what we expected. The ultrasound and CT scans confirmed that the initial tumor is still there - albeit smaller - AND they showed two additional masses. The doctors tell us that these could have been there all along and were masked by the main tumor. There is the main mass on her aorta (beneath the celiac artery and above the superior mesenteric artery) and two others that could be lymph nodes. In addition to 'seeing' the masses, Sophie also had another MIBG nuclear scan that showed neuroblastoma cells. Let's recap for a minute...

There are three types of neuroblastoma cells, classified as:

• ganglio neuroma - mature, benign cells;


• ganglio neuroblastoma - a mixture of mature and immature cells;


• neuroblastoma - immature, malignant cells

Sophie's diagnosis from the initial biopsy was ganglio neuroblastoma.

The MIBG showed the presence of something in all three masses - it could be any one of these at this point, but most likely ganglio neuroblastoma or ganglio neuroma. The doctors are recommending a 'second-look' surgery to see if the last course of chemo shrank the initial tumor enough that it can be removed without jeopardy and to remove the other masses for biopsy. We are tentatively scheduled for surgery November 9th. This is all happening really fast, so bear with us as we explain as we go. Whatever is removed will be reviewed by pathologists to see where the cells fall in the classification above. If everything is able to be removed, and no immature cells remain, we're in the clear. However, if everything cannot be removed or immature cells are found, we will start another course of chemotherapy immediately. Let's all focus our energies on the former!!!

We meet with the doctors again this Thursday (10/26) for final decisions and scheduling. For now, Sophie is back in daycare for a few hours each day. This gives her a break from me and the house, a chance to play with other children, and the time to receive physical and speech therapies. I also get some time to make calls, sort piles of mail (from the USPS and Kindergarten - UGH!) and keep you all updated on what's happening.

Keep your thoughts and prayers coming, we need them now more than ever. This news is so much harder to take and react to than the initial diagnosis. As I explained to the doctor last week, the initial diagnosis inspired us to fight, to give all our energy and focus to the plan and returning Sophie to full health. While our goal is the same, our resolve has taken a hit. We still want the best, but are more tired from the fight. We could so clearly see the light at the end of the tunnel, and somehow a new mountain was plunked down in our path. Fortunately there is still a glimmer at the end, and we haven't lost sight completely.

After all of this, we are assured that Sophie's prognosis remains the same - a full recovery. That's something I can hang my hat on with a smile. The other stuff is just time and energy.

Now for a few more uplifting thoughts. This past Sunday we took the kids to a farm up in Howard County, here are a few pics of us all having a great time. Enjoy, and thanks for reading!

Kindergarten homework...

I know you all have been waiting patiently for pics of the bean plant, so here they are... From the first week, to now. It's almost 18 inches tall!
. . .

One day at a time...

So, we thought we were done with inpatient at GUH C53, we were wrong!?! Tuesday morning, Sophie came down with a fever of 103.3 - do not stop on go, do not collect $200, go directly to GUH for admission. It seems that Sophie's immune system is low and a rather aggressive bacteria - pseudomonas aeruginosa - found it's way into her system. Luckily it didn't enter her blood stream, so a two week course of IV antibiotics and we'll put this latest issue behind us.

We did take advantage of our captivity this week in scheduling an ultrasound that would have been delayed for a few weeks. This is part of the post-chemo testing that will tell us if the round was successful. So far, the news is encouraging. There were originally two tumors and a questionable lymph node, they have all reduced in size since the last scan a little more than a month ago. The next couple of weeks are full of the rest of the post-chemo tests. Sophie will have an audiological exam (one of the chemo drugs could affect her hearing) a cardiac echo and EKG (her heart is also at risk), a CT scan, as well as an MIBG nuclear medicine test to determine if the tumor continues to contain any malignancies. If the tumor is clear, we continue with the course of therapy for the neurological disorder, opsoclonus myoclonus ataxia syndrome. If there are still traces of the neuroblastoma, we go back for another round of chemo. Of course, our fingers, toes and even eyes are crossed for the former!

I'm hoping this is the last night in the hospital for awhile. As I've said before, the folks here are terrific, but there's no place like home. Our very great and very helpful friends/neighbors have come to the rescue again taking Zach in while mike is at work in the evenings. I'm sure he would be quite happy to fall asleep and wake up in the same place for a change!

My camera is on the fritz, but stay tuned for pics of the bean plant Zach is growing for his homework it's way cool, and quite big now! Until then, all the best to you and your families and as always, thanks for reading!

September in review - and a little October too...

So it took forever for me to get the last post published. Mainly I was waiting until I had the pictures downloaded from the camera, but also because life has shaken us up a bit more than usual lately.

We began in late August with Zach entering Kindergarten - could we be more proud? Then a decision on my part (which now in hindsight was a very good one) to remain out of work until Sophie completes treatment and has an all clear. We began rather mundane, getting adjusted to meeting the school bus on time each morning; learning how to interact with the school, teachers, PTA, etc; and a couple of days at NOAA to pack up my office for another redesign. We were back at GUH for cycle 3 of chemo on 9/7 and back home again on 9/10 without incident. Sophie did pick up a few new tricks on this visit - see the pics of her scaling the crib (just about out on her own, scary) and giving Cinderella a much needed checkup.
We were cruising (homework free for a month I might add) through September when the following Saturday afternoon, Sophie gets hungry or something after an afternoon nap, and bit through the tubing for her Broviac (a.k.a Hickman) central line. Only little droplets of blood let tell that anything was wrong, but once I figured out what it was - around 8pm when I began to give her IV medications - we immediately headed toward Georgetown (GUH) to the ER. Zach thankfully was able to have a last minute sleepover with our wonderful neighbors that night - Mike was working and I knew it would be a long night. After a successful patch which consisted of cutting off the existing lines just above the split (see the link above for a great picture) and super gluing (no kidding) a new double lumen apparatus with tubing over the lines, and getting blood work done, WE were done - or so we thought - HA!

We returned home about 3:30am and promptly went to sleep. Waking a little later than usual (ya think?) we prepared to go to a local festival for some fun around 1:00pm - not so fast... the hospital called as we were leaving to tell us that Sophie's blood tested positive for bacteria and we would have to return to the hospital asap. We would most likely need to stay the night, BUT there were no available beds in the pediatric ward - UGH! We returned to the ER - finding also that Sophie's white blood cells and other disease fighting immune stuff in her blood was very low (check neutropenia from previous posts or the link) Now we were in the ER AND in isolation - way too much fun. We found that we would need to stay and they began working to get us a bed - finally we were admitted near midnight.

It turned out that the bacteria was only in the line and had not actually entered her bloodstream, but you can't be too careful with the little oncology patients, so we started a ten day course of high-test IV antibiotics. Her red blood counts were also low that week, so she had a blood transfusion as well which put some color in her cheeks! In order to be released, Sophie needed three clear blood tests in a row, and she finally passed with flying colors on Wednesday and we were prepared to go home on Thursday - Whoa, not so fast again. I tried without luck for about 3 hours to put Sophie to sleep that night, and she fussed and fussed, at around 11:30pm, I found out why as she vomited unexpectedly. She continued to be sick throughout the night, and by morning was like a wet rag, just laying in her crib, no dancing, no giggling, just restless sleeping. Poor thing, she had three chemo treatments and no nausea, now this. It turned out to be a virus - how do I know so definitively you ask? Well we were finally discharged late Friday afternoon (more about that in a bit) and we headed home, picked up Zach at school and then Mike left for work - about a half hour later, I go the virus! Woo Hoo! That was NOT fun! Getting two kids dinner and to bed in that condition is NOT advisable!

The following Tuesday morning (2am) Zach got it - had to miss school - on picture day no less - UGH UGH! and then Wednesday night, Mike got it - yikes - at least we knew it was done at that point. Sophie and I returned to the hospital the next day, Thursday for her last scheduled round of chemo.

Back for a moment to our almost week at C53 (the pediatric ward at GUH) Let's just sum this part up by stating that the folks at Georgetown are tremendous! Five days in the hospital and Sophie was still having a blast on the last day. They even threw her a birthday party with a beautiful cake and gifts. Mike and I were so floored. These are very special people at GUH and we are continually amazed at the level of care from everyone - the administrative staff, social workers, art therapists, doctors and residents, and of course the wonderful nurses, everyone makes us feel so comfortable and special each and every day, not just on birthdays. This birthday party was especially special however. Sophie continued to be neutropenic, so a home party was out of the question - at least for now.

The end of the month brought us back to C53 for the last scheduled cycle of chemo. On Saturday evening when Sophie received the last scheduled infusion, I was so excited - I was snapping pictures everywhere, trying to remember the moment that would hopefully be the beginning of the end of these challenging times. the doctors pushed the infusion time up a bit so we would be able to leave Saturday night instead of Sunday. As much as we have actually come to enjoy our visits, it is always great to know that we are on our way home. Sunday we took a drive and found this rainbow - it kinda sums things up for that week!
A clinic visit this past Thursday (10/5) had Sophie running the halls creating merry mischief wherever she went. Her blood counts were good (not neutropenic) - a regular weekend awaits - regular, what's that?!?!?!? We have no real plans for the weekend, and that will work out fine. Last evening as we were picking up Zach from school, there was a minor scuffle on the stairs involving two strong-willed children (one Zach, one Sophie) and one backpack, and one Mom (that's me) that wanted nothing more than to get the munchkins in the car and go home. There's a parenting note here - you cannot, under any circumstances, take a toddler in two directions at the same time (on stairs mind you) and expect to emerge injury free. We returned to the GUH ER and a couple of x-rays later found no significant injury - most likely a dislocated elbow (know as nursemaids elbow). It's possible that I unknowingly reduced (or resolved) the dislocation when I bent her arm to put her in her car seat. In any event, she was not able to make a fist and cried significantly when we moved her wrist, so they put her in a soft cast for the weekend. We'll check her mobility out on Monday and see if we need to see an orthopedist or just the pediatrician.

Wow... are you tired from reading - I'm thoroughly exhausted from reliving a very busy month! Other than these mishaps, we are all doing relatively well. We did celebrate Sophie's birthday very quietly at home and on the neighbors swings that weekend. No real fanfare, but she had fun - that's all that matters. Ramadan started the same day and a month of fasting and breakfast for dinner began for Mike.

I'm hopeful that things will be quiet for a few weeks. In two weeks or so, Sophie will go in for testing to see if there are any traces of the cancer left in the tumor. We continue to have positive thoughts and are hopeful that what had passed will be the only chemo necessary. I'll post again as we know more!

Thanks for visiting and catching up! As always, thanks for your thoughts and prayers!