Looking Back Zach

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Post Holiday Blues... or bumps in the road

First, I'm happy to report that we had a fantastic start to the school year - yes it's been awhile since I've posted :( - and a wonderful Thanksgiving, Christmas holiday and winter break.  Zach has made the honor roll all year, and is excited about school. He was placed in the Highly Gifted Reading program and high math which has given his self-esteem a much needed boost. Sophie is doing very well in 1st grade, her reading is testing above grade level and she is settling into her new peer group well. Girl Scouts and Cub Scouts keep us busy when we're not doing homework.

For Christmas we were surrounded by the love and friends an family and wallowed in our primarily tech free gift-giving. The kids got back to basics and spent time playing games and cards, and generally having a great time.  In January we got back to our school routine and even found some time to adopt a new kitty, a little one-year-old black and whit sweetheart named Fiona.  Then... we hit a bump.

At the end of January, Sophie was admitted to the hospital again.  This time for acute pancreatitis - a very painful inflammation of the pancreas.  after a fun weekend sleeping at the Port Discover Children's Museum in Baltimore with our Daisy friends, we had a great and normal Sunday.  That night, however, she awoke in tremendous pain and we had to call the paramedics to rush her to the ER.  After a CT scan it was determined that it was likely her pancreas causing the pain and vomiting, and knowing her history, they had us transported to Georgetown University Hospital where the team that knows her best could get to work figuring out what, exactly was happening and nursing her back to health.

We stayed in-patient for a week and while we were there Sophie had two MRI's and an ultrasound of her abdomen.  She had been having some additional non-abdominal issues over the past few months, so while we were in they did a complete workup and she had a CT of her head, an EKG, and a cardiac echo.  The head T was clear, whew, no sign of hereditary AVM that caused my Mother's brain hemorrhage either!! - so not we're looking for why she's getting headaches so much.  Also she had been having episodes of rapid heartbeat, and has been tentatively diagnosed with SVT (Supraventricular tachycardia).  This is a non-life threatening condition that causes a rapid heartbeat from misfires in the upper ventricle of the heart.  For Sophie they last for a minute or so, but have no lasting effects.  She is on a 30 day heart monitor now to see if we can get a reading of an event to see how her heart responds to it.


The poor thing had to go with out eating for most of the week in patient, but returned to her hearty appetite quickly requesting steak & cheese sub the night she was cleared for a regular diet.  She remains on several medications to support her pancreas while it heals. 


During the multitude of scans, some inconsistencies were found that the oncology team wanted to inspect further through the nuclear scan.  This would rule out a recurrence of the cancer.  We were surprised to hear that the tumor was 'on the table' again - one of the oncologists, in the sweetest voice explained, "The tumor is always on the table, however, this time, thankfully, we believe it is under the table."  We were relieved that they didn't think it was an eminent threat, but still very worried.  The week after she was discharged, we went back for the nuclear injection and then the scan.  Apparently there was still some question after the the scans were complete, so we had to return the following day for another round of scans - boy, that brought the stress level way up.  Thankfully, the repeat scan ruled out a recurrence, but still seeing 'something' we will return for a repeat MRI in early April once the pancreas has had a chance to heal and the surrounding tissues recover from the trauma.


Sophie had four total IV's put in, which now come with heightened stress and a physical response - full with screaming, writhing, and kicking.  Each new IV had me promise here something that would calm her - at least long enough for them to get he needle in.  The first, at the ER, I promised a new American Girl Doll (she gave up her first opportunity for this by opting for Fiona the cat instead), at the hospital, another IV had to be put in for her PCA pain pump, so I promised a shopping trip to the American Girl store, then came the nuclear medicine injection, where, in a panic to just get it done,  I promised she could get her ears pierced almost a year ahead of our original schedule.


So after a follow-up doctor visit one day, we headed off to Tysons Corner (anyone who knows me,  knows that just going to Tysons was a big deal), bought a doll - her name is McKenna - had lunch with her, and then headed off to get her ears pierced.  All in all it was a wonderful Mom and Daughter day.


Zach has been such an amazing brother and son throughout all of the commotion.  While Sophie was in the hospital, Zach's 5th grade class had a Poetry Cafe where each student read a poen from a recent poetry project in front of fellow students and faculty.  He had planned to read one he wrote about the cat (We have a cat named Fiona, she's new to our family, she peed on my backpack and climbed up our Christmas tree) but instead, ad libbed with a new poem her wrote just before heading to the stage.  The topic was his sister and her trails, and from what I heard from moms that attended and faculty, it was very moving and emotional.  Each time one of them told be about it they started to cry.  I'm tearing up no, just thinking of it, and I wasn't even there.  Unfortunately, Zach didn't' write it down, so I can't repeat it for you now.  I've asked him to try an remember, but it seems to be over for him now and he's moved on.  This just reminds us about how much Sophie's medical problems weigh on everyone else around her.  When she is sick, we're all get sick with her in our own way.  The stress is there, whether it manifests in a poem to the world, or is kept inside until it can be released later.

Zach's birthday (2/6) fell on the Monday after Sophie was released from the hospital, so we all took special time to spend with him, heading out to dinner at Buca Di Beppo.  At Zach's request, we sat at the 'kitchen table' and enjoyed chef's specialties and a giant fudge brownie dessert - larger than his head!  On the 19th, we had many of Zach's friends and family join us for an afternoon of laser tag with an Angry Bird theme - it was the Angry Birds v. the Mischievous Pigs - everyone was a winner in this match-up and had a great time. Later that evening we celebrated Mike's birthday (2/22) at another dinner at Bucca do Beppo - it was an awesome day!


So, now were getting back to our regular schedule.  For our family Christmas gift, we started a family membership to a local health and racket club.  We had been doing well beginning a routine of exercise several times a week.  Now we are working to get back on that schedule, release some of the stress of the past month, and start looking toward warmer and calmer days.


As always, I'll try not to wait too long to post - and will make an effort to post happy events as much as the difficult ones.  Hopefully we'll get to catch up with you in person sometime soon!  

Love and peace to you all!

"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.