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!
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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!