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!

It's all good...

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


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


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



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

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

Round two... ding...

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

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

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

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

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

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

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

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

Update continued...

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

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

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

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

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

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

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

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

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

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

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

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