How Liam felt about eating today...

Appointment yesterday went well, but we think last week's dose is catching up to him...

TGIF

Quick update to let you know Liam had a great week. We were worried since he had the double dose Tuesday, but he bounced back within about 24 hours. We heard from Julie, she was having trouble with stairs, but otherwise did well too. Quiet weekend planned, hopeful for lots of outside time. Next appointment isn't till Tuesday. Stanley's coming for one last ride before we ship him back to CT.

4 hours, 43 minutes, 34 seconds

Ready for the Marathon

We had a special night tonight, a big pasta dinner at the Seaport Hotel for the Mass General Marathon team. Julie presented Liam with a medal of honor, although looking at tomorrow's weather - she's the one who deserves the award!!!
Owen, Jack, Nana and Papa came too. We all got bright green t-shirts to wear to support the runners tomorrow. We are going to decorate ours with Julie's name.
She's going to have "Flat Stanley" pinned on the back of her jacket during the race. Flat Stanley is a project my nephew Zachary is participating in at school... he's sure to get an A+.

Tomorrow, we'll be Dr. Weinstein's house waiting for the MGH runners to go by... we are estimating Julie will pass by between 1:30 - 2pm. Watch for pictures!!

Have you seen my Pack 'n Play?

Liam did well this morning at his weekly appointment; although I think we are all still a little tired from a very busy Easter. (All the extra candy went with us to Boston today). We noticed for the first time today that Liam is losing the hair on the top of his head, Dr. Friedmann was surprised it held out for so long. We prepped everyone in the office for next week's appointment; we've decided to bring Owen and Jack in next week to see where Liam spends his time. Between the play room and DVD player's in the patient rooms we think we'll be ok. Next week's appointment will be on Tuesday since we'll be spending Monday cheering Julie on from around the 20 mile marathon mark... Her bib number is 22730.

Liam continues to get around more and more, time to put the gates back up in the house. He's also slept though three of the last four nights. Seven more treatments to go!

Happy Easter!!

great day!

Great Day, except for the weather. Quick appointment today, Bridge went solo. Liam’s in a very good mood… chowed lunch and has been pushing himself around the house backward. Hoping for a good week too…

Tootise went shopping

Liam had a fussy week, just wasn't himself until roughly today. He is trying to crawl now, and gets pretty frustrated when he can't seem to figure it all out. Once he gets more active, I'm hooping he'll tire himself out more and we'll have better nights. The nice weather will help too.

Some sad news... On Tuesday morning we awoke to find that Tootsie was no longer with us. A private ceremony, with only Poppa and Tootsie in attendance, was held somewhere in the woods in our backyard Tuesday morning. No plans to replace her anytime soon. If the kids ask, "Tootsie went shopping".

Round Two

Back at the chemo today, long appointment… no more inpatient treatment, but every third week we still get a heavy dose of the chemotherapy drugs. Poppa came along for the ride today, got to meet the crew over in Yawkey 8B. Liam had gained about a pound and ½ since his last treatment.. He’s into eating these days – above enjoying squash and potatoes Sunday night from Aunt Marylou and Aunt Bonnie. THANKS!

Kind-of a tough night for Liam, just couldn’t seem to settle in... We had pizza, cake and ice cream in honor of Owen’s birthday tomorrow, and I took the day off, so we’ll have another day to recoup and enjoy his birthday at the same time.

Only nine more weeks of chemo to go; it doesn’t seem so far away anymore.

CT was good!!

Just a quick note to say the Cat Scan of Liam's chest today looked good. No indication of regrowth (execellent news) and blood counts were reasonable, so we are back on schedule to start chemo again in one week. Long day today though.. up early to get to the hospital by 7:00am, back just a short while ago. Everyone's napping now...

Picture taken by Jack

Liam did ok this week, was sick a few times on-and-off but seemed to get past it today. Tomorrow we have our “day off”... First time since December we won’t be making a weekly trip into Boston for chemotherapy. By the end of the week, Liam should be past his low point from the Cyclophosphamide; going forward it is just Vincrinstine and Dactinomycin, these are not as damaging to the blood counts so maybe we’ll let him out of the house more often :)

Halfway there!!

Made it home a short while ago, Liam has completed the last of his in-patient treatments. It was a rocky one though in terms of logistics... Started yesterday morning as usual in Yawkey way for blood work, no beds ready over on Ellison 17, so started the hydration process there. Eventually made it to Ellison, but we were moved out of our room around 8pm to allow another patient to go into isolation... pretty good night, up a few times before getting up at 6am and staying up until we were discharged around 1pm. The good news however... WE ARE HALFWAY DONE WITH THE CHEMOTHERAPY!!!

No appointment next week (A real break, provided Liam stays healthy this week). Then the CT on the 19th, before we resume chemo again on the 26th. Talked in detail with Dr. Friedmann about the chemo doses, the consensus is not to increase the dosage; that we are being aggressive enough. Not sure if I'm satisfied with all the answers, so we'll address it again on the 19th. Checked in with Julie on her training - she completed 18 miles this weekend!! Thanks for all the donations that have come in!!!

I'll check back in later this week with an update..

Support Pediatric Cancer Research!!!

Julie Piotrowski, a Nurse Practitioner for the Dept of Pediatric Surgery at MassGeneral is running the Boston marathon to raise money to support Pediatric Cancer Research at MassGeneral. She specifically asked if she could run for Liam. We met Julie during Liam’s first surgery to remove what we thought was a cyst, since then, we’ve stayed incontact and continue to exchange emails on each other’s progress.


So – How about considering a donation to "Team Julie & Liam" ?? ?? (Click Here). You can also get more details from the MGH Boston marathon link on the right.

THANKS!!!

February is winding down

Liam had a great week, didn’t sleep through the night too many times, but he’s been in a great mood. He’s doing so well, such that Dr. Friedmann is considering increasing the dosage of chemotherapy over the second half of his treatment… more to come on that. We are almost at the halfway mark, he has two more treatments, then two weeks off from the chemo, that will mark the halfway point. During the “off” weeks he’ll have a CT (March 19th to be exact). That will be compared to his baseline CT from December… I don’t think much is expected, I think you have to look at the CT’s overtime… we’ll be doing them every three months.

Other news – Basketball season has ended. Friday night BSC lost to Salem in the MASCAC semi-finals... sad to see it end, but nice to have Bridge around more. We all watched the game from home via webcast... pretty cool. I’m off to St. Louis tonight, so Bridgett is on her own with the three boys for a few days; got the helped lined up.... even though Owen and Jack are great helpers (note the assistance Liam is getting in the swing)... it’s always nice to have an extra set of hands around.

Maybe Bridge will do some blogging while I’m away...