Friday, October 06, 2006

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!

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