Speaking of Blood Transfusions

The doctor called yesterday afternoon, Liam's counts are very low, so today, after his radiation treatment, he'll be having a blood transfusion. The program at MGH we are looking at is called "Designated Donation". At some point today, I am going to stop by the Blood Donation center and set this up so that people can stop by and donate blood directly to Liam. If you know you are blood type "B" all the more reason we'd like to have you donate. Info on the MGH Blood Donor Center.

We had a good weekend, somewhat rested for the week ahead. Liam picks back up with the daily radiation treatments tomorrow. He has a minimum of three more weeks; tbd if we go longer than that. I started an official leave from work last Wednesday, just in time apparently…

Liam’s next round of chemotherapy will be August 9th. It’s a combination of drugs that will be administered over 5 nights in the hospital. So back to Ellison 17 we go. The master schedule is just about complete, just waiting for some final details about how the other combinations of drugs will be administered (inpatient versus outpatient). We’re hoping to explore other options, like having some treatments administered at home or at a closer hospital. To summarize, every three weeks, Liam will have 5 days of chemotherapy. There are three different combinations of drugs he’ll be receiving, each combination four times. (three combinations x four times each @ three weeks per cycle = 36 weeks)

There is a good chance over the next few months that Liam will need a blood transfusion. He had one after surgery, and I witnessed how quickly a transfusion can help his body recover. I’m going to get more info on this, but if you are interested in donating blood for Liam, you can make a “directed donation” at MassGeneral that will be reserved for Liam.

Zofran

So Liam did great at his 1st treatment yesterday. I will get more details out later, because the craziness of the last 24 hours deserves a better post. Zofran is the medicine Liam takes for nauseousness, typically for a few days after chemo. Well Bridgett has her own prescription for it now.... the dr.s gave it to her yesterday morning when they discharged her from Sturdy Memorial after a night in the hospital. Oh yes, the kidney stones are back.

Up at 5:30, at MassGeneral by 8am.... waited, waited, waited... Proton beam machine having technical issues today so Liam's treatment was cancelled. We'll try again tomorrow.

Radiation begins tomorrow

At the Francis H. Burr Proton Therapy Center.

Starting again

Well, it looks like we finally have a plan in place. The experts at MGH and Dana Farber have agreed on a plan, customized especially for Liam. There was a slight difference in chemotherapy recommendation between the two teams originally, but Dr. Friedmann and Dr. Grier worked together to arrive on what we believe is the best course of action. Don’t ask me to explain it yet though, because you need a medical dictionary, a calendar, and about three different color highlighters to get a visual representation. At some point in the future, I’ll do exactly that and maybe get it posted.

So where are we now? At MGH up on Ellison 17. We “checked in” yesterday afternoon for our first round of chemotherapy after spending the morning at Dana Farber, and the afternoon at the MGH radiation center. Liam had his “planning” scans for radiation and is now the first of my children to get a tattoo. (Just a few small freckle size tattoos, which help with aligning the radiation beams). So chemo last night, we should be discharged later this evening, and will have nurses come by the house next week to do labs for blood counts (trying to cut down the number of trips to Boston).

Radiation may start as early as next week, should tidy those plans up by EOD today. We’ve met a slew of new people comprising our radiation team; headed by the Radiation Oncologist is Dr. Yock. We spent a good deal of time with her earlier in the week and sounds like she gets a vote of confidence from our cousin Maura and a colleague of hers from down in the D.C. area. Dr. Yock and Dr. Marcus (Dana Farber) were on the same page regarding in the radiation plan. Our primary radiation nurse is Rachel, seem like most of the time will be spent with her. Good first impressions across the board.

We are now officially regulars; can’t go to the café without running into a few people we know. Yesterday it was Julie (Boston Marathon / surgical team), and Mary Rae (CT/Imaging – made Liam his own Bob-the-Builder pillow case). I’m going to ask for my own MGH badge so I don’t have to get beeped into the pediatric floor anymore…

The Consultation Marathon...

continues. Hope to have this all wrapped up by Thursday afternoon.
Tomorrow we're learning all about radiation.
Thursday more expert opinions.
It's likely that we'll be starting chemo again on Friday.

Radiation Recommendation

MGH is recommending radiation for Liam. Although all the margins were clear, there was one very close margin (1mm) in the bottom right lobe. I think either way, the thought of radiation is just as scary as the thought of no radiation. It would be in the form of proton beam radiation and MGH is one of the few places that has this capability. More to come…

So it has been a little bit crazy around here the last few days. Even though Liam was/is doing well with the recovery from surgery, he needed lots of TLC. Plus factor in being away from the house for two weeks (laundry, unpacking), putting the living room, dining room and sun room back together (just a little project we had going on the side), and all the varous other things going on in life, I just couldn't stay awake long enough to blog...

But, no major updates. We continue to stay in close contact with the doctors at MGH, and are meeting with Dana Farber on the 16th. I would imagine things will happen pretty quickly after that.

A few pictures from the last week...

We're home!!! I'll post some updates tomorrow.

Good news, good news, good news, not so great news

First the good.

Liam had a great day today, seems like once he got off the heavy duty pain medication, he really started to perk up. No recent fevers, and eating more and more.

More good: Bone Marrow test came back all clear!!!

More good: If Liam continues along this path tonight, there's a good chance we'll be on our way home tomorrow.

The not so great news... starting to get some insight into the next steps. Radiation is still tbd pending the final pathology report - estimate to hear something by Wednesday. As far as chemo, while this also still can't be finalized until pathology is complete, sounds like we are looking at a pretty intense 10 months of chemotherapy, a good portion of it to be logged as an inpatient. And while we are having a second opinion at Dana Farber next week, I would imagine their recommendations will be similar.

So to quote myself, with some advice I gave to a friend of mine many years ago about a job transfer "You can do anything for a year" Michelle - are you still out there?

and we will... already starting to formulate the plans about how to make this work...

Thursday's update...

Not such a great day for Liam, still fighting the fever, not eating/drinking too much. Got to see Owen & Jack today, Nina and Poppa came by with them for a visit.

Last night, with the best view in Boston, I slept through the fireworks. Bridge watched them, said they were awesome!! Oh well....

So, Tylenol and antibiotics for Liam while they are waiting to see where the fever is coming from... he's mostly sleepy but wakes up every once an a while for a visit. I think I've figured out how to email pics from my digital camera from the room, so maybe we'll get some more up of our little guys soon.

A few smiles

A couple of smiles Wednesday...
Tee-Tee and Nina stopped by, cleaned out the gift shop...

Baby Steps

Little bit better night for Liam; he slept on and off, spiked a temp for a few hours, had a few minor issues but overall is looking good. He also ate some Cheerios yesterday, in addition to the juice and formula he's been drinking. So he's continuing to make progress... still waiting to see a smile though.

Thanks for all the calls, emails, etc... Bridge and I continue to take tuns bedside. The nurses gave us the room which supposedly has the "BEST" view for the fireworks tonight. Sounds like Owen and Jack are doing well down the cape, that's been one more of the tough things about this week, haven't seen them since Sunday night. We are hopeful another 24 hours will make a difference for Liam and we'll maybe take a break to go see them, or bring them in... Last time with this surgery we spent five nights in the hospital, looking at the same thing, maybe a few extra days this time around.

Agitated

Wow, tough night and morning for Liam. While the doctors are happy with his progress, Liam is not very happy about his surroundings. Agitated is putting it mildly.

It does appear that later today we'll move out of the PICU and over to Ellison. Apparently the nurses over their are waiting for his arrival.

And oh yes... thank you BJ for taking care of yesterday's post, while I can get email in the room, I am unable to update the blog, so she'll be filling in for me occasionally over the next few days.

Surgery Went Well and Liam Did Great Today (YAAY)

Liam did great today, and surgery went as well as it possibly could.

The tumor was embedded in the middle lobe of his right lung. The middle lobe and tumor were both removed, as well as portions of his upper and lower lobes.

Percentage-wise though, Liam is still left with 2/3rds the functionality of the lung. Pathology was on site during the procedure to confirm clean margins, and check lymph nodes.

Both look good. The current line of thinking is that this a localized recurrence, and it's been completely resected. No radiation was administered today, although it still remains a possible next step.

PICU tonight, maybe tomorrow night too. Brigde and I are splitting shifts between here and the Holiday Inn across the street. Owen & Jack are splitting time with both sets of grandparents at the Cape.

I'll write more tomorrow.

P.S. Thanks to my favorite person BJ for her help with posting this update

Made the most of the weekend...

and we're ready for the week ahead... one day at a time.