HOME!!!

I'm typically an optimistic person, but never did I think we would be home tonight!! Don't tell Auntie Cate and Uncle Rick though.. we are leaving Owen and Jack with them for the night!!!

Liam as you can see is happy to be home. I'm holding my breath to see how the next few days go. So, what are our next steps?

1) Figure out what to do with all the prescriptions we just picked up. Thank you CVS. I definitely think a spreadsheet is in order.

2) Pick our "chemo" day going forward. Options are Fridays or Mondays. I'm leaning towards Mondays... If there's one thing I've learned over the last few months... don't get sick on a Friday. So round two will either be January 5th or January 8th. Either way, we'll go Friday for a checkup to see how Liam did this week.

3) Relax. No more blogging for me tonight. Thank you again everyone!!!

Going home... Maybe

Liam had a good night, has been drinking well today. They MIGHT let us go home tonight!!!

We made it!!

One down, 23 to go....
We started about 5pm, finished by 6pm.
Liam slept through most of it... right up till the end when he woke up hungry, and proceeded to chug 6oz of Similac.
Me & Bridge did ok too :)

Looking forward to a good night sleep.... yeah right!!!

Up-to-the minute Update

I found the Family Learning Center here at MGH... currently I'm on "lunch break" while Bridge is up with Liam. We got going early; the port was in and bone marrow out by 10am. Very short time in the recovery area before they whisked us off to get a baseline CT of his chest/lungs. That'll be important for us later along the way, sounds like we'll be having the CT's monthly.

Dr. Ryan and Dr. Friedmann were both in the OR with Liam. They said he did great. We are back in Ellison 17 again - and for those who may remember - "Georgie" is still here, although we are not sharing a room with him this time.

So - we are settling in, pumping Liam with fluids, few tests to take, don't anticipate the chemo until later this evening. I asked Dr. Friedmann what we should expect tonight... she said it would be very boring.

Anyway - don't think this lab is open late - or on Saturday's, but like I said, I'll try to post when I get a few hours at home tomorrow. Thanks for all the well wishes and support coming in.... keep it coming!!!!!

The Treatment Plan

Ok, so we met with Dr. Friedmann today. She was patient with me as I flipped though my eight pages of questions, and spent an hour talking with us about Liam, Rhabdomyosarcoma, treatments, etc… This is another reason we like her (also see Boston Herald story below).

The good news is that we have a change in the chemo plan… 24 weeks. Still weekly, all weeks will include the doses of vincristine and dactinomycin. The cyclophosphamide will be administered tomorrow, and every third week for the first half of the treatments (i.e.… we should only have three more overnights after we get through this weekend.).

I spent this evening reading the 27 page consent form. All the chemo drugs have three categories of side effects… “Likely”, “Less Likely” and “Rare but Serious”. I think we can live with the “likely” and “less likely”…the “rare but serious” I don’t even want to think about.

So... by tomorrow at this time we should have had the 1st dose of chemotherapy complete. Keep your fingers crossed. We’ll also get the bone marrow results sometime the end of next week. That’s the final factor into “Staging” Liam’s cancer… right now we are a Stage II, but anything in the bone marrow puts us into a stage IV and a more aggressive treatment plan.

Owen and Jack will be making the rounds between various relatives over the next few days. The dogs will be boarding over at Kozy Kennel. Tootsie and Dennis are on their own. Hopefully we’ll all be home for New Year’s.

One final note on my pictured uploaded for today.. This is a horse figurine I picked up in the airport on one of my trips to Texas last month. At the time I purchased it, I did not know it’s meaning, but have since found out… It’s a painted pony replica, and this one in particular is known as “Blue Medicine”. Blue Medicine is meant to represent an expression of healing and support for those in need in our community. The pony is decorated with prints of families and children… seems pretty fitting.

I’ll try to post in the brief hours I’ll spend away from the hospital in the next few days.. but definitely by Monday night sometime.

Happy New Year.. Let’s hope we start out on a good note in 2007.

The Diagnosis is in…

Got the call today - We knew rhabdomyosarcoma was a likely diagnosis, but now it’s official.

We are going into Boston Thursday to meet with Dr. Friedmann; 25 minutes on the phone today just didn’t seem to cover it all. The plan is to have a port put in Liam on Friday, get a bone marrow sample at the same time, then have our first round of chemotheraopy. Dr. Ryan will be our surgeon on Friday.

So …. Other things to note.
- “Couple” more days in the hospital. I would love to think we’ll be home for New Year’s, but not getting my hopes up too high.
- The chemo plan sounds pretty aggressive…. Weekly for 40 weeks. VAC (VCR, DACT, and cyclophosphamide). We’ll get more on this Thursday. Every third treatment, we’ll need to plan for an overnight stay.
-If you'd like to see how this all started... You can view a copy of the follow-up chest x-ray that was supposed to confirm the pneumonia was gone. To quote that nice ER doctor over at Children’s Hospital, “It’s quite large”. Warning though - not for the faint of heart... just look for the big meatball in the middle of the page.


That's it for now - I usually reach a point where I don't want to talk anymore, and I must say, I'm done for today. Too much time on the telephone... check back for updates.

Merry Christmas