The hardest part

All is fine. The waiting was ridiculous, more so for us than for you, trust me. But all is well.

The radiologist and oncologist noticed some spots on Austin’s kidney on yesterday’s ultrasound that weren’t present on the previous one and wanted to check with the surgeon to make sure they were expected post-operative marks and not a sign of something worse. They are indeed common post-operative spots and the surgeon was really quite pleased with how the ultrasound images looked, saying this was exactly what he would expect and hope for from a successful kidney-sparing surgery and that we should carry on with treatment as planned.

So carry on we will.

No word

No final results from the ultrasound yet. That’s not necessarily a bad thing. Our oncologist wants to review “post-operative changes” with the surgeon. Of course, this kind of vague waiting makes me nervous, but if I step back and think of it from an objective perspective, I know that what remains of Austin’s kidney does not look normal and never has. It surely looks even less normal after December’s surgery, so I think the doctors are just being cautious and are consulting with each other before making any final proclamation.

So, we’ll just let that be for now (what else can we do, after all?) . . .

In other news, his platelets have risen significantly, almost to the minimum level required to start chemo. We assume that they’ll continue their ascent and are planning to check in to the hospital Thursday morning to stay through Tuesday for the next round. When next week’s over, he’ll have completed three of his six rounds of chemo (assuming–and hoping!–that we stop after 18 weeks and not the full 30), so that feels good.

And in the meantime, Austin will go to school tomorrow and Wednesday, and have two spectacular days in a row. Lucky boy.

High stakes

One little thing I forgot to mention in yesterday’s post is that Austin has an abdominal ultrasound tomorrow morning. This is the first time we’ve actually looked at his kidney since December 7, when we confirmed that the tumor was, well, was indeed a tumor and was in fact a growing tumor.

There’s no specific reason that we’re doing this tomorrow except that it’s time. His belly has healed from his surgery and two months have passed and radiation and chemo should be working their magic and it’s just time to see what’s going on. Of course, the hope is that there’s nothing going on. Nothing new, nothing unusual, nothing suspicious or shadowy or blob-like.

If there is, if there is something that is definitely there that wasn’t there before or something that has definitely changed in size or shape or maybe even color from the way it was before, well, then it’s finally time to say goodbye to that kidney. To cut our losses (wow, how fitting is that phrase?) and take the damn thing out. We will fight, as we’ve always fought, to keep that hard-working little organ as long as we possibly can. But not if it puts our hard-working little boy at too much risk. No, no, one is worth way more than the other.

So, we are hopeful as always but we are also aware (as always) of how high these stakes are set. Very very high. As always.

Finding my voice

I lost my voice. Both literally and figuratively. We’ve had no phone or Internet access until today, six days into living here. And blogging from my cell phone is a drag (too much SHOUTING). So, my “voice” has been temporarily silenced.

Plus then, I lost my voice, due probably to sheer exhaustion. Woke up Thursday morning unable to talk, my already raspy voice about ten notches down on the raspy scale.

But, here I am, blogging from my new home office, with so much to say.

The house, first of all, is fabulous. We are absolutely loving it. Of course, we’re still maneuvering around boxes and still opening three drawers before we find the one with spoons in it, but each day, we’re feeling more and more settled and are all very happy here.  Mark and I have been thoroughly impressed with how well the boys handled this transition, how independently they’re playing in their new playroom, how they’re sleeping in their own rooms (well, Braedan is, and Austin at least starts in his room, but a rousing game of “musical beds” is nothing new in our family).

We love how we’ve decided to configure our space and it all feels surprisingly cozy, despite the larger size. I do promise pictures in the next week or so, but right now there’s still too much clutter for you to be able to appreciate anything anyway.

And Austin is doing great. He recovered quickly from his feverish stay in the hospital and has been racing around like his regular old self. His platelets are low (a common side effect of chemo), so we had three clinic visits for labs last week, but aside from a directive against “rough play” (yeah, right), all has been normal, including the rest of his blood counts.  So normal, in fact, that he went to school last Wednesday and had not just “a day” but a spectacular day, according to his teachers.

Because his platelet count is low, he’s not supposed to take his blood thinner and because his other counts are normal, he hasn’t needed his Neupogen, so he’s had no shots at all for the past several days. This coupled with the fact that he’s allowed to be around other kids has made it feel like an enormous break from cancer. Like he’s a totally fine kid with no hair who has to take a few extra oral meds each day. It’s really quite lovely. Oh, but he does have an ear infection! He had a truly rough night on Thursday with much complaining and crying and ear tugging, and sure enough, at clinic on Friday, he was diagnosed with a double ear infection. But as any mom who’s witnessed the amazing efficacy of Amoxicillan knows, this is an easy one.

We were scheduled to go back in the hospital this coming Monday for five days of chemo, which is being postponed due to his platelet count. We have labs again Monday morning and if his counts have risen, we might reschedule for Thursday. Or it could be delayed until the following Monday. Not knowing is hard in the practical sense, as I have friends trying to coordinate our meals and playdates, but I’m also willing to take each extra night here (somehow I thought I’d be much farther along in my unpacking by now. . . ?). Plus I’d love to send Austin back to school Tuesday and Wednesday next week. I will certainly keep you all posted.

For now, you can rest easy knowing that all is well in the Gallagher household.

Home sweet

SWEET SWEET HOME.  RELEASED YESTERDAY AT NOON, NOW SCROUNGING THROUGH BOXES UNABLE TO FIND MY TOOTHBRUSH (AND CERTAINLY UNABLE TO FIND THAT ETHEREAL WORLD OF THE INTERNET) BUT ALL HAPPY.   WE ARE HOME.

One more night

We’re hanging in there, thanks to an army of friendly volunteers helping wrap, pack, carry, load, move, feed and care for. Austin is still in the hospital, but should be released tomorrow which means that, yes, thankfully, we will have our last night together here on Edgehill Road, a minor issue in the grand scheme but one that seems extremely important to me nonetheless.

His fever continued to rage throughout the night on Thursday, due in large part to his adamant refusal to take Tylenol. He doesn’t usually mind Tylenol (and, in fact, sometimes he downright loves it . . . ) but on that particular night, he simply would not take it. I think it was the one thing he was able to exercise some control over and he would not give that up. Finally, around 2 in the morning, the nurse and I held him down and forced it into his mouth.  He, of course, spit half of it out but enough made it into his system to begin the long slow (and very necessary) process of lowering his temperature. Early the next morning, I told him we wouldn’t be allowed to ride the tricycle in the hallway if he had a fever and he happily and quickly downed another dose. He then turned to me and said, “Ok, let’s go.”

He was briefly allowed out today after twenty-four hours of no fever but only while wearing a mask (because of his cough). He was surprisingly okay with this rule and donned his Mickey Mouse face mask while cruising the halls:

His counts have been slowly rising but we need to wait until his blood culture continues to be negative for bacteria growth. I think the deadline is midnight tonight so if all goes well and no last minute symtoms arsie, we should be sent home before lunch on Sunday.

The small fact of our being together in our home one last time somehow makes all the insanity of these few days bearable. And trust me, there has been insanity. Take, for instance, the gas leak at the new house in the main line from the street that required a full crew out there on this 15-degree morning digging a new hole and placing a new pipe. But, it’s fixed now, the heat is up and running yet again. And, as is somehow always the case, this too will be okay. We will be out of that damn hospital and home together. Home here and then home there. And that is all that matters.

One tiny inch

FORGIVE THE ALL CAPS.  THIS HAPPENS FOR SOME BIZARRE REASON WHEN I UPDATE FROM MY PHONE. I’M NOT YELLING BUT MAYBE I SHOULD BE . . .                                                                                                                                                                                                                                                         REMEMBER THAT WE’RE SET TO MOVE IN FOUR DAYS AND ARE IN THE MIDST OF PACKING UP OUR ENTIRE HOUSE?  AND REMEMBER THAT LITTLE RULE ABOUT GOING TO THE HOSPITAL IF AUSTIN HAS A FEVER OVER 100.4? CAN YOU GUESS WHERE THIS IS GOING?                                                                                                                                                                                                             WE WENT TO THE CLINIC TODAY FOR LABS WHICH PROVED THAT HIS COUNTS ARE INDEED LOW (WHICH WE ALREADY KNEW BY HIS GENERAL LOW MOOD). HE FELL ASLEEP ON THE WAY HOME AND GOT IN A GOOD NAP AT HOME WHILE I (AND MARK’S MOM AND SISTER) PACKED. WHEN HE WOKE UP, HE WAS ON FIRE. NOT “OH, WILL SOMEONE FEEL HIS FOREHEAD AND TELL ME WHAT THEY THINK?” FIRE BUT DEFINITE, NO WAY AROUND IT, MOTHER KNOWS BEST FEVER.  SURE ENOUGH: 102.7.

WE’VE BEEN HERE SINCE ABOUT 7. HE’S HOOKED TO FLUIDS AND HAS ALREADY HAD A CHEST X-RAY AND ANTIBIOTICS. YOU CAN’T BE RELEASED UNTIL YOU’VE BEEN WITHOUT FEVER FOR 48 HOURS AND HAVE RISING BLOOD COUNTS SO IT’LL BE SUNDAY IF WE’RE LUCKY. I AM MOST MOST UPSET AT THE IDEA OF THE FOUR OF US NOT BEING TOGETHER FOR THE LAST NIGHT IN  THE ONLY HOME MY BOYS HAVE EVER KNOWN. BUT, AS MY DAD WOULD REMIND ME, I AM TRYING TO FOCUS ON THE ONE TINY INCH IN FRONT OF ME.  JUST GET PAST THIS ONE TINY INCH AND THEN ONE MORE TINY INCH AFTER THAT. WE DO WHAT WE HAVE TO DO. EVEN WHEN WE DON’T LIKE IT.

Drum roll, please . . .

And now, after many months of patient waiting, I present to you . . . my mudroom:

Like I said, the name “mudroom” just doesn’t do this place justice.

Control room, maybe? Situation room?  Super room? Mud mansion??

The view to the back yard

I guess they like it.

I know you’d all be jealous of me, except for that pesky little issue of having a child with a sneaky cancer for the second time. At least, I’ll be organized . . . .

What day?

My postings will surely be sporadic this week and next as we are in the throes of packing up our house and I can barely make my way through the maze of boxes to reach the computer. We’ve only been here for eight years but, oh my god, do we have a lot of stuff!  I don’t know how on earth people manage to move out of houses they’ve lived in for twenty, thirty, forty years. I am a pack rat, for sure. The amount of already-used wrapping paper I have stored on my third floor is embarrassing.  Some of it is so crumpled that I’d never even wrap a present in it.  Time for the recycling bins . . .

The new house should be finished tomorrow and then a cleaning crew will come through on Thursday.  I’d actually considered taking you all up on your many offers of help with that until my mom convinced me that no one really wanted to spend their precious free time cleaning my dusty house and instead offered to pay for a service.  So thank my mom and dad when you see them next!

We’ll make some trips over the weekend with carloads full of gear and then the moving truck comes on Monday. So, in a mere six days, we will be sleeping under our new roof.

Austin’s doing fine. We hit a “sore spot” with one of his shots over the weekend and now he’s been fighting them, which is really a bummer because we’re still in three-a-day right now. But Braedan, my child who screamed bloody murder when he got his second H1N1 shot two weeks ago, has been begging for injections. We gave him one — just an empty syringe poked into his leg — last week upon his request, and now he keeps asking for more!  Oh boy.

Austin’s blood counts are down but I’m hoping they’ll have risen by the time we go for labs on Thursday so I can send him to school next week. Not only would this make the move easier, but when Mark got home yesterday and asked Austin about his day (our dinnertime ritual, often dominated by Braedan, the big talker), Austin said, “I didn’t have a day.”

“Of course you had a day,” Mark replied.

“But no,” said the little one, ” I didn’t go to school.”

Oh sweet boy.  Time to get him back in there so he can “have a day.”

Every minute a gift

Sorry to leave you all hanging on such a bad post back there. These past few days have certainly been a series of ups and downs. We are home, released first thing on Thursday morning. Austin’s spunky self has re-emerged, he’s jumping on the mini-trampoline and playing rocket blasters with his brother (with whom he is miraculously getting along — maybe absence makes the heart grow fonder?). He’s been completely happy and seems mostly normal, despite the fact that he isn’t eating much.

We’ve gotten the hang of the PICC line, especially now that it’s covered with the “tube” part of one of Mark’s athletic socks (an “arm bra”). Yesterday we went to the clinic for labs and a dressing change which was a fairly miserable experience because the tape they’d used in surgery was much stickier than the regular one and took ten minutes to slowly and painfully peal away from his already sore arm. Then, late last night, I went to flush the line and couldn’t do it. It was stuck, nothing going through, total resistance. You’re not supposed to push too hard when this happens in case there’s a clot that you don’t want to push further into the blood stream. It was the middle of the night at this point and I figured there was nothing to do until morning, but I tossed and turned for hours convinced this PICC line wasn’t working either. Imagining my Saturday in the ER, with twelve different doctors trying to figure out what to do with this kid who clearly needs a central line and clearly rejects every one of them.

I tried to flush it this morning, again to no avail. Called the attending oncologist, who didn’t sound too alarmed and told me to call our Home Care nurse. Well, I’d spoken to this woman yesterday when she called to schedule a weekly visit to change his dressing. I told her we’d be in the clinic each week and they could do it there, so after making sure I felt comfortable with the flushes she said, “So, it sounds like you don’t need me?” “No, I guess not,” I answered, never guessing I’d need her less than twenty-four hours later. When I called her today, she listened to our predicament, and then apologized for having canceled us as her patients! Oh great. She said she could reinstate us on Monday and wished me luck (thanks a lot).

So there I was, mentally preparing for an ER visit (not exactly the place you want to bring an immuno-compromised child) when I decided to call our old nurse practitioner, a long time friend and my go-to for advice. She calmed me down, urging me to avoid the ER at all costs, and walked me through some options, one of which worked beautifully . . . and the line flushed! All was suddenly well and every minute of this almost-awful day now feels like a gift.

And the shots — oh, this kid is a trooper. On Thursday night, he screamed and cried so hard that I cried, just furious that, on top of everything else he has to go through and everything else we have to go through, now we have to add this twice daily bit of pain and suffering. But by Friday morning, he barely let out a peep. And the three shots he’s had since then have been a piece of cake. He climbs into my lap, making sure Braedan is nearby with a distracting toy, and Mark pops that needle in his skinny little leg and it’s over. “One and done,” is Daddy’s motto.

I’m totally wowed by him, by his ability to just adapt and take it and make it all okay. By his truly incredible resilience and his endless supply of strength. By the smile and the laugh and the jump that inevitably come after the shot and the prick and the poke. He keeps going and that lets us keep going. He guides us through this with a three-year old’s sense of possibility and hope and joy.

How lucky are we?