"How do you not have cancer?"

This was an amazing weekend, so much so that we didn't even get to everything we had planned - special shout out to Stephanie - we're so sorry we missed your shower, and want very badly to make it up to you!!! 

 This weekend really began over a week ago when, at our annual oncology/late effects follow-up at GUH Pediatric Cancer Clinic visit we discovered that some of the GUH med students were holding a St. Baldricks fundraiser, April 1, to benefit the Palliative Care Unit at the pediatric clinic.  Along with those who would shave their heads, they would also be set-up to donate hair to Locks of Love.  Over the coming weekend, Sophie and I had quite a few conversations about the possibility of donating her hair at the event.  This is her beloved hair that has grown, uncut, since she ended chemo in February 2007 - grown to below her waist.

After a particularly tedious evening removing a giant dred-lock from beneath her pretty curls, she decided to go ahead and take the plunge, make the cut, and donate her hair in honor of the Clinic and all that they have done for her over the years.  So, this past Friday afternoon, just after school, we loaded into the van and made our way downtown.  Shortly after arriving at the Georgetown student center, a crowd formed and Sophie was guided to a chair - they measured, and sized up the task, and then... they made the cut - not just one cut, but several to get through her thick mane.  It turned out that she donated close to 12 inches - although she admitted later she was quite embarrassed, she sat amid all of the people taking pictures and video and smiled pretty for the camera.  Me, Mike and her oncologist, Dr. Shad, were all in tears - keenly aware of the milestone that had just passed, and the significance of the moment having painstakingly lived through the initial loss of each strand and the renewal that new growth promised following treatment.  An extraordinary moment for us all.

The students and staff at Georgetown were so gracious and sweet to Sophie, Zach and us - doting on the kids and encouraging us throughout the process.  What a great day! Check out the St. Baldrick's event website if you would like to make a donation or just read about the event and organization.  This event raised over $17k for pediatric cancer research!

Zach has vowed to shave his head at next year's event.  Stay tuned as he will be doing some serious fundraising!  He'll have a page up at some point and we'll let you all know how to get involved!

After the log, but fruitful day, we celebrated out to dinner and then headed home to bed to prepare for the rest of the weekend.

Saturday morning we awoke much earlier than usual to prepare for Ben's Run. This run benefited Children's National Medical Center (CNMC), and was in honor of a schoolmate of the kid's, Ben Goldfogle.  in 2009, after fighting ALL and AML (both forms of leukemia) for over six years, Ben lost his battle.  A tribute to the strength of his family, and the support of the surrounding community, Ben's run had 875 human participants, and 40 canine friends running/walking a 5K or 1K course throughout the Stonegate community.  One of my BFFs from high school and her daughter drove up from southern MD and joined us for the great event.  We all did the 5k - some ran - the rest of us walked.  We all had fun, and really enjoyed the opportunity to support Ben, his family and CNMC.  Plan to join us next year - I've vowed to train to actually run the 5K next year - I'll need plenty of your support!

Following the run, we had some brunch and then rode out the downpour and following thunderstorms on the way home and in the house.  Kim and her daughter, Cecelia stayed all afternoon - this is where our conflict came in... we were supposed to go to Steph's bridal shower, but the afternoon got away from us, and we, regrettably missed it. Love you Steph - will make it up to you, promise!

The evening left us very tired... off to bed to move out again the following day.  Sunday we awoke to neglected chores for all of us then off to a cub scout pack meeting - geo-cacheing at Wheaton Regional Park - the boys went for a hike and Soph and I joined friends at the carosel and train.  Off to a long overdue trip to Costco and then home, just in time to grab some dinner and get to bed.  Wow, what a whirlwind.

So likely - if you've made it this far - you might be wondering about the title of this post.  It's kind of sums up how 'heavy' this weekend was for us all.  At Ben's Run, there was an opportunity to sign up for the bone marrow registry - a service that had given Ben and many others, hope during their battle.  While I was filling out the paperwork, Sophie started questioning me about the process.  "Can I be a donor?" she asked.  I explained that to be a donor, you have to over 18, and you can't have had cancer.  This was followed with one of the most poingnant questions of my life, "Mommy, how to you not have cancer?"  Wow, what a question.  Until that moment, I didn't really get what it must be like to be a childhood cancer patient/survivor.  I've always looked at her illness through a parents lens - empathetic to her perpsective, but never privvy to it.  Sophie has never really known a life without cancer.  It's simply all she knows.  Wow.

So, I have no words of wisdom for this, just admiration for my strong, beautiful little girl, and gratitude for all we have... cancer and all.  Peace.

Found and exceptional village...

So, the title of this post is a little vague, and likely confusing.  As many of you who know me, my life and my blog story, our family has been blessed with two beautiful, wonderful, perfect children.  That said, they are still each wrought with issues and concerns, physical, emotional, and educational.  What we have been finding over the past year or so is that what we thought we knew about them and their differences are simply the tip of the proverbial iceberg.  We've come a long way already, but the road is long, and now we see it is winding as well.

So back to the title, well, last night, I sat in on a Parent 2 Parent meeting at our kid's school and round a village, a small one mind you, but a village nonetheless of Mom's struggling with the same paradigms our family struggle with every day.  Some have learned to navigate them, and shared their knowledge, and some are just beginning their journey. Young children, older kids, boys, girls, multiple children, multiple disorders - unbelievable.  I was brought to tears many time throughout the evening listening to their personal stories and relating them to my own.

So, now that I've found the village, what do I do?  Oddly I feel more isolated today than ever, even in knowing that there are others who have paved a path for their child and can provide help along our.  Others that have witnessed the same emotions.  Others who cry when they hear other's stories, and when they speak of their own children's struggles.  Kindred spirits, but still alone on our respective journey's and no path is the same. Our children are like snowflakes, multifaceted, no two are alike, and they drift through the air, sometime causing havoc, but always bringing a glint of a smile in their loveliness.

So my hope is that I can connect to the exceptional village that formed last evening. That somehow we can continue to connect, to share, to support each other and to work together to create an atmosphere that supports our exceptional children and leads them to their greatest potentials.

For all those still searching... Peace.

We Couldn't Make This Stuff Up...

It's early morning on Tuesday and we're sitting at an Affordable Dentures clinic in Jessup, MD. I believe we are here because the universe has a sense of humor - or at least is trying to ensure we keep ours.

Yesterday, our second day home from the hospital, my Father-in-law woke up sick to his stomach. He got sick in a bucket and my Mother-in-law quickly cleaned everything up flushing the waste down the toilet. What she didn't know was that he when he got sick, his lower denture dropped into the bucket as well. Bye bye denture... flushshshsh. All I could picture is a fish swimming around the Bay with a great smile - can you see it!?!

So, today we're getting a new, full-set of dentures for him. I've joked that my M-I-L will 'accidentally' flush her's now so she can get a new pair too. This is an interesting arrangement where we can get a new set for him in just one day - Ha!. So far they've taken impressions of his upper and lower gums, and then an additional impression of his bite. Now they are creating a wax mold with teeth to test the fit and bite. We're hopeful that that will happen soon, and that the fit is good. If now they adjust and possible re- impress, and we re-impress for the bite. We will come back this afternoon form the final fitting of the laytex cast, and then on to solid food!

This has been an interesting couple of weeks focusing on not-eating, special diets, and a variety of stomach ailments.

I'm looking forward to going back to work to get away from it all at this point. I was to leave for Miami on Sunday, but guess I was meant to be here instead - there Re certainly a good nuk er of folks depending on me, so I'm glad the it worked out this way for everyone.

Sophie is doing better every day. I'm still waiting for her rosy cheeks to return, and with rest they will come.

Rest, that's what we all need at this point. I'm looking forward to getting back to our daily routine and to getting fa ull night's sleep - Thanksgiving is right around the corner, with good friends and family, and long weekend - ahhhhhhh.

Happy Tuesday e eryone! Peace.

Home Again, Home Again, Jiggety Jig...

So, yesterday was full of events that brought us home-sweet-home this evening. Following the 'pfffttt heard round the ward' yesterday, Sophie finally had another little 'movement' letting us know that things are working as intended. This was, of course, met with cheers and adulation from the nursing staff and residents - similar, but louder than the pfffttt party the night before.  Dr. Chahine stopped by and even declared Sophie fit to eat anything she wanted.

Being given the option of anything was a little daunting, but she quickly honed her request to a greek salad, chicken tenders and fries. We quickly reviewed out delivery options and settled on Manny and Olgas - an old-time favorite.  She could hardly contain herself as we waited for our dinner to arrive. Finally, sweet satisfaction as we got her all fixed up and she dug into the salad, dipped into her fries, nibbled the chicken, and eyed my steak sandwich with increasing interest - who could deny this child anything? I made her a small sub and she downed it like a champ. Stomach pain, who, Sophie?

This morning she sent me out to get oatmeal and fruit salad from Starbucks. Gotta love her tastes, so grown-up, and so yummy.

We stuck around the hospital today to work on a painting and to help with a promo video being created by the Starlight - Mid-Atlantic Foundation. Starlight provides events and activities to sick children and their families to help them find time together away from doctors, procedures or any of the other medical considerations they have to deal with every day.  We have participated in many of their "Great Escape" activities and have made many friends among the other families, and among the Starlight Mid-Atlantic staff.  The opportunity to give something back, even if it is just our words, was tremendous.

After the hubbub of the Starlight, we were discharged and sent on our way.  And that brings us home this evening.  Wonderful friends brought us dinner and took Zach to spend some quality boy time with their three boys, and another lovely friend brought ice cream and pie - yum yum!  It's so wonderful that Sophie can actually enjoy all of the food and being home.  Mike's parents are still with us and have been hugging our little princess whenever they can. I've been kissing her face so much she's actually pushing me away.  I just can't help it I'm so happy she's well and home.

We will spend the next week at home resting and regaining stength to return to school the following week.  The time home will be good for us all.  Thanks you to everyone for your well wishes, prayers, positive thoughts, phone calls, and gifts for Sophie.  We are so incredibly grateful and humbled by your love and friendship.  Peace...

Pffftttt... Woo hoo!

For those who are don't know what a pfffftttt is, let's just say it relieved a little pressure in Sophie's tummy, and a great deal of worry from the Doctor's and our minds. We were just sitting around making clothes pin dolls and Sophie announces, "Hey Mommy, I just tooted!". This was of course followed by a woo hoo from me, the childlife intern, then, as I made the grand announcement, the nurses, and residents. The surgeons were so happy the ordered her NG tube to be removed, and gave Sophie permission to begin passing clear liquids past her lips. Much to Sophie's delight, this included Popsicles!!! Yeah!

So, we are firmly on the road to recovery. We'll see how she does tomorrow. I'm sure it will be similar to today, but more active, playing with the other patients, doing arts & crafts, playing games, and just coping with the confinement. Maybe we'll even get outside for a few minutes to get some fresh air.

We're hopeful to go home this weekend. More updates tomorrow (and I hope pics too :). We've had a couple requests for visitors - we'd love to see you, but please call first so we can make sure we don't have too many people here at one time. We'll also be home for about a week after discharge, so you can visit at the house as well if you like, whatever is easiest.

Much love to everyone... PEACE.

One step at a time...

So, today was filled with hope.  We started and stayed well throughout the day.  I knew it would be a good one when Sophie told me she was bored this morning.  After seeing all of the doctors and nurses and therapists and such, Sophie took a stroll down the hall to the ChildLife playroom.  There she made gak with Georgetown chemistry students, made a volcano erupt, and played with home-made quicksand - all before creating two awesome, glittered paintings.  She returned to the room a few hours later tuckered out to say the least.  After a bit of rest she geared me an a volunteer up to string beads and make some jewelry.  Idle hands you know.

As you can imagine, we're thrilled to report that her progress is positive and that she continues to get better by the hour.  We're hopeful that she can deliver the essential bodily functions tomorrow so she can have the NG tube removed and start putting at least liquids past her lips again. I'll post more pics tomorrow.  Thanks for checking in and staying tuned with us,and of course your continued prayers and support! PEACE.

Just another block in the road...

Welcome back to our blog.  We hoped to only have updates like school events, and Halloween costumes, but this week, we've hit a little snag with Sophie's health.  Fortunately, it's not related directly to her problems of the past, rather a complication of the surgery that removed the nasty tumor.  Here's the whole story...

On Thursday (10/28), the school called me to let me know that Sophie had a tummy ache after lunch, returned to class after a short rest, only to return later with more pain.  I was on my way, but not quick enough, and we agreed that she should go home on the bus and I'd meet her there - she wasn't nauseous , so at the time seemed like a good plan.  Well, apparently within minutes of going on the bus, she threw up :(  So now she was not feeling well and mortally embarrassed. So I rushed to the school and brought her home where she headed to her room to lay down and threw up again.  It was obvious that she shouldn't eat or drink anything for awhile.  We laid her down to rest with bucket and towels and though she was in intermittent pain and threw up a couple more times, she was able to sleep through the night.

An angel on Stonegate grounds!

On Friday (10/29) she awoke feeling better, but still in some pain.  We waited a few hours and started introducing some water every 20 minutes or so and then some plain toast.  Bad idea, very bad.  Within a half an hour she was in extreme pain and then threw up everything.  This was around noon and I'd planned to go to school a bit later to take some pictures of Zach in his Halloween costume at the parade and party. At first she was fine staying home with her Meema (Mike's Mom), but as the time for me to leave drew closer, she started to feel much better, so we decided she could tag along, in her angel costume of course, to wave at her friends and Zach.  We stayed for an hour or so and she enjoyed being out of the house and part of the action - but she was still really tired.  As soon as we returned home, she crashed on the futon in front of the tv for the evening.  She woke up just before dinner and wanted some soup, so thinking it was solids she was having a problem with, we tried some princess chicken noodle soup.  She had a small bowl and a cracker and did well for some time.  Then it started again, but this time the pain was worse and the vomiting was more violent.  This got worse throughout the night with the final, terrible, projectile episode at about 2:00am on Saturday - then she went off to sleep until morning. 

Ms. Thebaud's Halloween Party

By Saturday morning Sophie was not intreseted in eating, but snuck in about a half a cup of water and promptly threw it up. We knew it was time to seek help.  She was so tired she would walk into the kitchen and lay on the floor to rest.  We got organized and drove to the Georgetown Univeristy Hospital ER where they confirmed, through an x-ray, our suspicions that she had a intestinal blockage.  We were admitted to the pediatric floor by 7:00pm and later they inserted an NG tube - very much against Sophie's will and wish - and we settled into C53 for the first time in more than three years.

Sunday was Halloween - tough for Sophie to accept she wasn't going to be able to participate in any of the parties or trick-or-treating that night.  There were any tears that day, but we ended the evening on a great note, reverse trick-or-treating areound the pediatric units, bringing candy to those who could have it - including the nurses :) and little halloween trnkets to those who, like Soph couldn't eat candy.  Sophie dressed in her costume - wings, halo, feathers and cupcake pj's.  She wasn't her bubbly self, but she did smile and really enjoyed helping others to smile that night.

Reverse Trick-or-Treat-ing on C53, C52 & C51

Monday was a bit of a game change.  We thought she was getting better, and really hoped that the blockage would resolve easily on its own.  Following the morning x-ray, the surgeon, a wonderful human being - Dr. Chahine, indicated that Shopie was not only not getting better, but seemed to be getting a bit worse.  We planned to repeat the x-ray at 1:30pm and see if we would indeed, need surgery.  Well, several hours later, we got the word that surgery was imenent.  By 6:00pm we were wheeling into the OR with her blankie, Cinderella and my 'bunny suit' on - cute, right?

In pre-op waiting, preparing...

So the surgery went well, they actually started at about 7:00pm and finally called that they were closing around 9:15pm.  Right on schedule.  About 45 minutes later, a visibly tired Dr. Chahine came by to explain what happened and what we can expect over the next few days.  He recounted that the blockage was quite serious and was likely building over time creating a series of four 'pleats' one folding over and into the other, completely tieing off her small bowel and causing all of the distress.  He said he'd never seen anything wuite like it before.  That's our Sophie, she's one of a kind ;)  Because the blockage was likely there for some time, parts of the bowel were in distress and to distended to save, so they removed about 15 cm of it and thankfully were able to sew the ends together with no addtional intervention necessary - there was a riskthat if the bowel was severely damaged they might need to pull it out, give her a colostomy and then perform another  procedure after several months to bring everything back into her body.  Obviously we are very grateful that this was avoided!

So tonight (11/2), 24 hours after surgery, she is resting comfortably.  The day had it's challenges, but she ended like the trooper she is, insisting that she get out of bed unassisted to do some 'business' and get weighed.  If we didn't already know it, it's been confirmed now - she's tough as nails - don't mess with Sophie!  Tomorrow I hope she'll be up for some art and playing with her new Barbie dolls.  I'll post more as we know more - inlcuding pictures!

Thank you all for your continued thoughts and prayers!  We hope your loved ones are well tonight!  PEACE!

New Beginnings...

Well, the first week of school went off without incident.  We're trying something new this year to cut down on some of the stress and anxiety surrounding school.  We've given up our slots at the aftercare program, and we have local teen watching Zach and Sophie after school.  So far, so good.  Kathleen is so good with both kids and they really like being with her.  This little bit of serenity is just what we've needed after a quick but full summer.

In early July we were lucky enough to spend 15 days traveling to and around Morocco visiting family and friends.  It was a lovely trip and much too short.  The kids had the opportunity to connect with cousins they hadn't met before and we had time to reconnect with Mike's parents, siblings and their families.  It was a hot couple of weeks, but really fun.  We even got to ride camels!  Now, if you ask the kids what they did in Morocco they tell you they went to the pool.  We did so much more, but in the heat that was obviously the most memorable - and refreshing memory.

We came back to trouble, but nothing we can't handle.  Mike was laid off three days after returning.  Luckily he's always kept his lucrative bartending hobby, so now he works five night a week at the restaurant and has the mornings free to pursue whatever he wants to do when he grows up.  As we know all too well, life could be much worse so we count our blessings and make the best of the situation.

Sophie started Kindergarten again last week and seems to be adjusting well.  It was a shock at the end of the last school year to find that she was not recommended to move forward to first grade.  We've since consulted specialists and it seems that Sophie has some learning disabilities including dyslexia - that would explain why she completed a full year of kindergarten and didn't learn to read!  We'll be starting a new program, hopefully this week, to get our little princess back on track and remove the anxiety and frustration of not being able to read and open the path for her to thrive in school.  For now this is the worst of our problems - she's doing so well medically it's hard sometimes to remember how far she's come and how wonderful she's doing.

Our dashing fourth grader Zach is also doing quite well.  He is enjoying the increased responsibility of the fourth grade curriculum and so far has been hassle free for homework and other assignments.  We took him to a developmental psychologist early int eh summer and will begin a regimen of physical and occupational therapies - as soon as we get organized (ha!) to help his with some of his own issues.  Apparently he has some gross motor problems that we need to work on to help with his handwriting, and as always we're looking for the holy grail to help us manage the ADHD. (At the recommendation of specialists from the reading center, we will also have Sophie evaluated for ADHD pave the smoothest road possible for her as well.)

I hope to get some pictures posted soon, you won't believe how bug both kids are now.  Truly amazing! Zach is almost to my shoulder and he's only 9!  Sophie will turn 6 in a few weeks and we'll have a bash at Chuck.E.Cheese - not our favorite, but Sophie's pick, so we'll play along.

We hope you and your families had a wonderful summer and that you are happy and well.  Until next time... peace!

Family Update: Just a regular year... for a change...

Hello again! I've decided that this year I'll post more regularly to keep everyone up to date on the who, what, where, when, and why of our family activities. I light of the past few years, this has been a very quiet one. Sophie tested into early admission (her birthday is 22 days past the cutoff) and started Kindergarten in the fall and Zach 3rd grade. They both are doing well - and agree on their favorite subjects of PE, recess, music and math. I'm happy they at least threw in one academic subject!!!

Sophie's been officially off treatment since last February and has had not signs of recurrence from anything!!! In December of 2009 we started in the Late Effects program at Georgetown where Sophie will be followed for the rest of her life to see the effects of the treatments. We're hopeful that she will continue to thrive as she is now. She's a big diva princess and is having a blast as Daisy Girl Scout this year - she sold over 175 boxes of cookies including a bunch that we'll bring to the Georgetown Pediatric Cancer Clinic next week to donate to the Childlife program.

Zach is getting so big, he's almost 5 ft tall now and comes up to to just below my collar bone. He is such a sweetie pie and a giant Mamma's boy! Right now he's really into Cub Scouts, Bakugan, Tech Decks and reading - he's working on several series including Harry Potter, Percy Jackson and the Olympians, the 39 Clues and Diary of a Wimpy Kid. Academically and behaviorally we're still struggling a bit. We are now seeing a developmental pediatrician at Children's National Medical Center to work through a more complicated diagnosis of ADHD than we had anticipated. We're on a new drug now, Vyvanse and are working through the frustration of finding the right dose. We are so incredibly grateful for Zach's teacher this year, she is amazing and truly 'gets' Zach for the wonderful kid he is. She sees beyond the disability and draws the best from him everyday. It helps that her own son has the same difficulties and she can see him through not only a teacher's eyes, but a Mother's.

Everyday is something new to do and learn. With all we've been through and all of the research we do almost everyday to stay on top of these kids, I should qualify for some sort of honorary Mommy MD! Heh!

Looking toward the future, we're planning a trip to Morocco this summer to see Mike's family. This will be Sophie's first trip and Zach's second - although he was only two so he doesn't remember a thing! We're looking forward to relaxing on his parent's farm and at the beach - I've already made a plea to stay out of people's living rooms and out in the country so the kids can see and absorb as much as they can of the land and culture. IF we make it down south, we may even get to ride a camel this time!

I've included some recent pics from the snow and other activities. Drop us a line sometime - friend us on Facebook or just leave a comment here to let us know you're well!

Love and peace...


Cutting up at the Circus


Helping with yard clean-up from snowpocolypse



Zach's 9th birthday party at Dave & Busters

A look back... 2003

Hi, it's the Soussi-Tanani's here... just checking in to say hello and wish you all well. Please leave us a note to let us know how you are doing - we're busy, but you're always in our thoughts.

Recently, I found a new tool for capturing my backlog of memories - Smilebox. In addition to creating digital scrapbook pages in minutes, it allows me to share these pages through our blog. So, for the faithful - that is those of you who still (despite my lack of posting) check out the site occasionally to see if there's anything new - here's a look back at 2003. Life was very different then. A little slower, a lot quiter, and definately less full than it is now. And to think we thought we were busy then! I've just finished scrapping 2003 (yeah, I'm behind, but catching up quick!) in 8 page blocks. I'll periodically post the animated pages here.

Make a Smilebox scrapbook

It's good to be on this side of that...

I've uttered this post's title phrase so many times now when folks ask me how things are going. It is true. IT is wonderous to be on this side of such an amazing and wrenching journey. Although we're not quite finished, Sophie is technically still in treatment for the OMS, we are well on our way to a full recovery. Sophie has passed all of the post treatment milestones with flying colors. Her scans to date have been clear. We are waiting for the final results of last week's MIBG and CT scans, but have no reason to believe that they would show anything other than all-clear.

Zach is doing so well, I want to pinch myself occasionally to make sure it's all real! His math and reading are at the 2nd grade level. I'm just amazed each time he reads an entire book. I don't know what I was expecting from a first grader, but certainly not such proficiency in both subjects. His pool of friends is ever increasing. We have had more than a dozen birthday party invitations in the past couple of months. For both kid's friends, but still, I can't keep up!

Over the past several months, birthday parties notwithstanding, a good deal of our energy and efforts have been dedicated to reducing Sophie's dependency on the steroid medication that keeps her OMS symptoms at bay. We have successfully tapered from a previous threshold of 17mg every other day to 5.5mg every other day. It was at a half a mg per week, more or less, but we've now reached the point that we can begin the delicate process of completely weaning her from the drugs - safely and hopefully symptom free! We will see an endocrinologist at the end of this month to help with this process.

We have officially moved into maintenance for the ganglioneuroblastoma, with clinic visits dwindling to quarterly! It is sad not to see all of the staff and families that we have become accustomed to seeing each week. But also nice that when we do see them, we can talk about more than a diagnosis or treatment. Many of the children and families that we met through the process are also moving into new phases and it is just lovely to see such healthy, happy faces!

Of course, with each child that beats the disease, there are new children diagnosed. In the past several weeks, two friends have reached out with friends who have a recent diagnosis. Another family from Zach's school struggles with a recurrence and very difficult treatments. My heart hurts to think of the children and families who are beginning and continue to live the fight. My personal wish for each new diagnosis and for fighting through is from our good night prayers...

"Please give our family and all families, peace and love and hope and faith, and health and laughter and joy and patience and courage and strength. Amen."

     

Back to 'Normal'...

For those who kept up-to-date on our blog during my more prolific times, thank you! The last several months have been incredibly busy as we began the process of ever so slowly returning to 'normal' life. It's amazing how that simple word - normal - invokes such a sense of wonder in us now. During the height of Sophie's treatment we referred to each day as our "new normal" or "what is our normal today?" Now we take for granted that everything we do is, more or less, normal.

We get up each morning, we make breakfast - okay except for the past month of Ramadan - we get everyone out of the house, we go about our days, we return home, have a meal, get everyone clean, and then retire for the day. Isn't that just about everyone's day? Of course there's much more complexity there than the statement allows, but in a nutshell, that's it. We're normal again.

So a quick update on our princess and the rest of the royal family...
Sophie has been off treatment for seven months now. Where did the time go? She has the six month scans scheduled for next week. A CT scan and the nuclear test, the MIBG. We don't expect to see anything, but we're always a bit on pins until the scan is over. We're down to monthly visits to the clinic. Boy that was a hard habit to break. Actually, it was almost like a loss. The folks at Lombardi have become much more to us than clinical staff. They have become such an important part of our lives that it has been a little difficult letting go. Alas, it's time to move on and let Sophie begin her life without all of the medical hubub. And that's exactly what she is doing.

In August Sophie started preschool. She's following in her big brother's footsteps and is a Tigershark at the Bright Horizon's center in my office building. There's another group that is, thankfully, a tremendous part of our lives. A fabulous groups of people doing amazing things for such little people and their families.

Zach started firts grade in August. We are thrilled to report that he is thriving. He's in an accelerated math unit, and is reading at the appropriate level. This is such a wondrous time in a child's life. I love to watch him read random things. It's such pure joy when he sounds out a word that he's never read before and get it on his own. His eyes light up.

On the non-academic side, Zach spent the summer at a terrific sports camp, Camp Olympia. There he learned sportsmanship, accountability, responsibility, and soccer, horseback riding, swimming, netball, basketball, and much more. All in all it was a fantastic experience for him and really laid a perfect foundation of first grade. Zach is quite the popular kid now. I affectionately call him the "frat boy." He's apparently stated a recess club where membership hinges on ones ability to arm-fart. Yet another lesson learned at camp this summer! I think he said there are three club members, and growing. I have this visual of him on the corner of the blacktop at recess with a line of boys ahead of him. As each boy approaches, Zach assesses his arm-farting abilities. In my mind's eye there are no girls in line, but you never know!

We also celebrated a birthday in September. Sophie turned three on the 23rd with a backyard carnival with friends from her school, the neighborhood and our family and friends. It was a terrific day - I'll include some pictures in the next post.

Mike has been observing Ramadan for the past month and we've just determined that today is the last day of fasting - tomorrow we feast! This past weekend really tested his willpower. All four of us attended the Redskins / Lions game at FedEx field. It was easily 95 degrees in our seats. Mike made it through the entire event without even water. Amazing! The game was terrific incidentally. If you haven't heard, they won 34 to 3. Sophie wasn't thrilled about the heat and the disruption to her nap schedule, but Zach had a fantastic time.

As for me, well, I've just been hanging on for dear life. I returned to work full time in May. It took a bit to reacclimate to work-life. It was almost like getting a new job with a lot of deja vu. Most of what I did before I left wasn't on my plate anymore, but there was, and is, plenty to do. Well, those who know me well know that I wouldn't let my plate remain unfilled for long. I've managed to fill an entire place-setting with things to do at the office and schools. Creative Memories is still a great part of my life and I've had the pleasure of completing many albums over the past many months. All a testament to the strength and determination of our children - every picture is of our joy in the past year. The chronicle of the difficult times is still pending. That to will come, in time.

So here we are, it's a seasonally chilly night, and time to end another busy day. Sophie's had croup for the past two days - and nights - and we're hopeful that we can get everyone back to school and work tomorrow.

During the throes of treatment and hospitalizations, someone once commented to me that when they didn't see a post on the blog, they knew that things were busy, but well. That's where we are now. Busy, but relatively well. We hope you are too! Until next time, peace.

They say they comes in threes.....

So usually when there hasn't been a post in awhile, that means we've been just living our lives, catching up and making up for lost time. Well for the past few weeks it's been that and some. I'm still trying to eek out three full days at work - not going as well as planned - and the kids are trying to find normal in our lives. We weren't doing so bad until about a week and a half ago when things just started to go crazy!

On Thursday morning, 5/10, in the wee hours, three young folks came through out quiet and trusting neighborhood checking for open cars and taking what they could get. Luckily one of our vigilant neighbors caught one of them in our car before they could get much more than my cell phone. There was apparently a girl in a car parked near by and the two guys with her were running amuck and then tossing the goods into the car. Once the neighbor approached the car to see what was happening they took off - but not before the neighbor got their plate number - ha!

So the neighbor called us, at 3:40am - uhg, and we spent the next hour with the police running down what happened. It's just a shame that our quiet community is now on alert (and hopefully the police too!) to such senseless crime. It turns out all they were able to get for our troubles was my phone and a stack of music CDs from another car. We don't have an update on any arrests following the licence plate, but hope we'll hear something this week. We'll call that #1.

So #2 didn't take long to materialize - however we were not on the alert for a trend or anything. We were just trying to recover from the loss of my phone contact list - what a pain, and we thought that was the worst! Friday morning Mike was on his way in to work when a car cut him off on Georgia Ave, at the 495 underpass. Instead of hitting the offending car, Mike reacted and swerved into the jersey wall smashing the driver wheel base pretty badly. Thankfully Mike wasn't hurt - with the exception of some superficial burns from the airbag explosion. The offending car probably even made it to work on time that day, and of course no witnesses stopped to help! Well yesterday we heard from the insurance company that they will total the car, as the damage far exceeds the value of the car at this point. So in the next few weeks we will get a new car - and a new car payment too - woohoo!

So we were still reeling from these incidents, but getting by day by day - then on Monday, 5/21, we have a minor scare at Sophie's Daycare. Sophie fell and hit her head and a cart fell on her as well leaving a nasty mark on her forehead. We were worried, but the nurses at the facility check her out throughout the day and the mark is all that remains of what could have been worse. Then on Thursday of the same week, Sophie and I start the day walking Zach to the bus stop. On the return to the house, Sophie decides to take a detour to a neighbors house. As I stand in the neighbor's driveway talking to other Moms, Sophie runs to have me pick her up. Well we both missed, and she went backward, first landing on her bum, and then tossed her head back and smacking the pavement, hard. I immediately picked her up as she screamed. The neighbor consoles me that as long as she's crying it should be okay. At that very moment, she stopped, went limp and lost consciousness. Of course my heart sank and we, the other Mom's and I, went into emergency mode and called 911. She awoke crying again about 20 seconds later, but as you can imagine, it seemed like an eternity. Her first thoughts and words moments later were, "I lost my Croc" or more accurately, "...my Cwoc." Apparently, when I scooped her up I dropped a shoe and she wasn't going to let me get away with it, no matter what. Well, by the time the paramedics arrived, she was walking around and sort of playing with the other children. We did decide to bring her to the local emergency room to get checked out just in case. A head CT later that day confirmed that she was fine. And except for a very lumpy head, she's been fine since. That was #3.

So that is our saga of late. In the midst of all of this we had a lovely Mother's day at home - a holiday NOT spent in the hospital for a change! The adults ate and drank and the kids bounced and played. A good time was had by all!

This week we are in recovery mode once again. Mike is in Hollywood - Florida that is - at the Mid-Year meeting for the American Society or Consultant Pharmacists where he works. He will return on Thursday. Then we have a few days at home and head to the beach at Fenwick Island, Delaware, for a week of respite courtesy of a wonderful organization called Believe in Tomorrow Children's Foundation. We haven't been away for almost quite some time now and could sure use a break! Believe in Tomorrow provides retreat housing for families of sick children and has two properties on the Delaware/Maryland shore for families to enjoy. We are very luck to have this getaway and the generosity of this organization! Thanks also to the team at GUH Lombardi who started the wheels in motion for this amazing gift.

Well, that's it for now. We hope you all had a wonderful Mother's Day - for you, your Mom, you as Mom to your pet, or whatever! We leave you with a few photos from the past few weeks to show that although we've hit some more bumps in the road, they are all surmountable in the end and we keep on keepin' on and hope you will too! All our love!


Notes on the pics...Stuck in a tree, but feelin fine ...Taking time to smell the, weeds?... Oooh, Fries, Mmmm (at a Hoya Lacrosse game)... All I want for Memorial Day is my two front teeth (there's a story here too, maybe later!)... Gwamma, trying to be a good sport - didn't make it in much farther though!... Gwamma and Paw Paw safely outside the moonbounce with Mike getting tackled inside. PEACE!

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!!!