June update

It's been a long month for us. This 3rd cycle of chemo with the cytoxin has been rough. I can probably count on one hand the number of bites Sophie has taken of food since June 3. With the first 2 cycles, she would still eat a little bit, but with this one, she keeps telling us that everything tastes yucky. She is still getting TPN every night, which gives her what she needs, but what we would give to add some meat to her bones. I so wish I could transfer my excess to her!

Our time in between cycles is usually 6 weeks, but between the 3rd & 4th, 6th & 7th is only 4 weeks. So next week is cycle 4. Given last week's 3-night stay at the hospital b/c of her fever, we will have been at the hospital every 2 weeks in the past 6. Doesn't feel good. No one gets good sleep, we are separated as a family, and it just wears on you.

But we move forward. Soph's counts were super-low last week, ANC down to 5 from 6/17 labs (normal is above 1500), but from 6/24 labs, she was back up to 1445. It will go down again towards the end of next week, beginning of week of 7/8, but hopefully will rebound quicker than this past cycle.

We are looking forward to our CG retreat this weekend. It will be the first time outside of home or the hospital that we would be spending the night. I'm a bit nervous, but we'll figure it out. Soph will still get her TPN overnight, but the difference is we'll all be in the same room. Should be fun. We don't want this cancer to keep us from enjoying normal life. A weekend at my parents' in July is also in the schedule.

Seah has been in the terrible two's stage for a few months now. Doesn't listen, purposely annoys her sister, screams. The good news is that she turns 3 on 6/29, so hopefully she'll start to turn the corner. Sophie turns 5 on 7/1, so this weekend will be weekend of birthdays for the girls, though we'll be at the retreat.

Jeannie was able to get away for a weekend last weekend to NY, to visit with my sister. It was a nice break for her, and I survived. :-)

Please continue to keep us in your prayers. 21 weeks pregnant for Jeannie, busy at Elkay for me, and for Soph to start eating at least a little bit.

3 down, 6 to go

So it's been slightly over a week since we finished the 3rd chemo cycle. Usually the time in the hospital is uneventful, boring mostly, and Soph does well. No one gets good sleep, so we are all tired for a few days afterwards, but the actual administration of chemo is not a big deal.

It's the days/weeks following that are unpredictable. Again, with every 3rd cycle, Soph gets a different drug, Cytoxin, which is different than what she gets in cycles 1-2, 4-5, 7-8. So far, it's had more of an effect with nausea. She's been consistently vomiting every night or morning, even with the Zofran we've tried to give her. As a result, she has been eating about half a bite of food per day. Prior to this 3rd cycle, her appetite was picking up, and she was eating something like 5-6 bites of food. Isn't it sad that we measure her food intake by bites? Another undesirable result of this terrible cancer.

Thankfully, the TPN still gives her the 1000 calories/day overnight, but it'd sure be nice to have her eat a bit more.

Otherwise, no fevers yet, and we are entering the zone where her blood counts drop, so we are on alert for that.

Summer is here, and we are trying to balance a few programs/classes in between chemo cycles and on weeks that we anticipate that she won't be neutropenic (low blood counts). We want to limit some of the physical activities, since we know she may not be able to keep up and gets mad, so there's a few art classes teed up, along with some rehab sessions at Marianjoy.

Thanks for your continued prayers. Sophie is usually in good spirits, and we are hopeful for the best outcomes. With baby on the way, life will get busy and complicated, but we are holding on to the promise that God doesn't give us more than what we can handle.

P.S. We started a facebook page that anyone/everyone can visit and like to keep up with updates and pics (that will hopefully be more frequent than these posts).

http://www.facebook.com/feistyfightersophie

3rd cycle underway

Back at it.

We have somewhat of a routine when we get to the hospital. It might be funny/interesting to watch Jeannie and I when we first get to our room. Nurses are trying to ask us questions, while we're scurrying around trying to make this hospital room a home for 2-3 days.

• I always put our family picture on the wall plate outside our room. Don't know that makes much of a difference, but I'm hoping that all of the staff who come into our room for Sophie will get a glimpse into the human side of her, not necessarily just the clinical or seeing her as just another patient.
• Jeannie unpacks the clothes, blankets, changes the pillowcase to Soph's pink one.
• I pull out the iPad, both laptops, chargers and find optimal spots for all.
• We wipe down commonly used surfaces one more time.
• Soph refuses to sit/lay in bed until bedtime, and takes her preferred place on the recliner. (Don't worry, Jeannie takes full advantage of the adjustable bed)

Of course we'd rather not be here, but since we need to be, we make it as homey and comfortable as we can.

A little hiccup this time around. I completely forgot to call ahead to RM House to reserve a room. I called yesterday afternoon in a panic, but was crestfallen to hear they had a waiting list. So unfortunately Selah didn't come downtown with us, and both of us will sleep in the hospital room. It's a bummer bc seeing Selah brightens all of our days, and it's nice for either Jeannie or I to get a decent night's rest at the RM House. The thought of spending 2 nights at the hospital was not fun, but we were surprised to find out that we will most likely go home tomorrow night! Originally, we thought this 3rd cycle would keep us for 2 nights, so it's a pleasant surprise.

In the other critical news, the MRI came back clean! Soph had been complaining of headaches & neck pain in the past week, so before Monday's MRI, we had painful flashbacks to Dec and a serious case of "scanxiety." But all is well for now, and we are thankful & relieved.

This is a new drug with this cycle, so we'll have to see how it goes, but so far so good. The bigger effects/fears of low blood counts usually happen 7-10 days after.

Thanks for all of your continued prayers. We are learning these days what it means to have faith in the person of Jesus, as opposed to a desired outcome. When you have faith in a person, the result is not as primary. We are not quite there get, as our hearts so desire complete healing & remission, but we know there is a truth that God wants us to learn about having faith in Him vs. a desired outcome.

Good night everyone.

Trying on mom's necklace

Doing some painting on the 17 North playroom.

26 Saturdays

26 Saturdays ago, on Dec 1, we got the worst news of our lives.

It's hard to imagine what life was like before then. One could definitely make the case that it was "better." We were a "normal" family living a "normal" life in the suburbs. Nothing special, nothing crazy.

Now, our life is full of monthly hospital visits for chemo, nightly TPN infusions, every 3-4 hr trips to the bathroom, germ/fever fear, low blood counts = hospital visits for transfusions, and the tri-monthly MRIs, the ultimate check to see if this monster has come back.

We do get a taste of normal here and there; Below is a pic from this morning's trip to Taste of Wheaton, where Soph loved the big slide, and the ferris wheel.

These are the memories that I want to continue to create, and hold on to. The squeals of joy when we go down a slide. Never mind the fact that it cost us $2.50, or that somehow we spend $24 on really greasy, really bad cheese fries, miniscule corn dog & hot dog, and artificial lemonade. (ouch, how did that happen?) Life is short. Hopefully not too short, but we have learned to live this way.

Next week is chemo cycle #3 of 9. It's regimen B, which is the first time we've seen this one. Chemotherapy cyclophosphamide will be the main cocktail this time, along with vincristine, which we've seen regularly. A quick glance at its wikipedia page states, "Cyclophosphamide is itself carcinogenic." sigh. There's that double-edged sword again. What can we do but trust the doctors, trust the treatments, and pray.

Others who have traveled this same journey speak of the cumulative effect of chemo, how it adds up, and gets more difficult to endure as you go along, more frequent blood transfusions. We do not look forward to these, but will take it as it comes. Soph has still been great thru all this, and though a lot of her positive attitude and disposition can be tied to childhood innocence and not knowing any better, there's something about this girl's strength, determination, and positivity that defies logic and cannot be easily explained.

26 Saturdays from now, we'll have a new member of the family that we'll be welcoming, and we'll be very eager to finish the final 2 cycles of treatment. Life will again be dramatically different, and we are looking forward to see what it will bring.