Friday, August 8th, 2008

Friday, August 8th, 2008 - Today marks the end of Mattie's first day on chemo, and what a 24 hour period it has been. Mattie slept through most of the first several hours of chemo, which was a blessing. The Doxo went in as did the Cisplatin without issue. We did have a couple of urination accidents overnight since Mattie is getting anywhere from 250 to 300 mL per hour of fluid, but in the grand scheme of things a little wet underwear or puddles on the floor is really meaningless. The Ativan made Mattie very groggy which was another good thing, so we reached the morning hours in decent shape and with Mattie still sleeping (even if Pete and Vicki were up each hour throughout the night).

During the early morning hours Mattie only received his post-hydration fluids and periodic anti-nausea as he was carted down to Radiology for CTs of his left arm, left wrist and right humerus as well as x-rays of these same area. These scans were needed for better imaging and determination of what needs to be biopsied. Since Mattie was on Ativan, we were able to get him onto a gurney along with the help of Debbie LaViolette (a Sedation Nurse and special Mattie advocate), Dr. Eric Jarandeh (Pediactric Intensivist), and Rebecca Putnam (another Sedation Nurse). Then like a marching army set off across buildings and elevators to Radiology. Once at Radiology, Mattie got his dose of Propofol, which knocked him out for both the CTs and x-rays.

Mattie did get nausea and vomitted (emesis) five times starting later in the morning through dinner time today, which was considered somewhat of a "normal" reaction (according to an ad hoc straw poll we took haphazardly today). The Cisplatin is the chemo drug that causes the worst nausea and vomitting, so we suspect it was his reaction to this, but it could also have been influenced by the morning Propofol among other things. The net effect was a little disconcerting since Mattie was both groggy, nauseous, dizzy, on a empty stomach and vomiting all the while being restless. At one point, our friend, Liz Chiaramonte and her four children (including Zander, one of Mattie's kindergarten buddies) showed up to say hi and to drop off a lovely fruit basket and some things for Mattie and Vicki, just when Mattie was at the height of this state. Needless to say it was a disturbing sight for Vicki and me, so I can only imagine what Liz and the kids thought.

Mattie did stabilize this evening and napped for a few hours, as the nurse shift change kicked in and we got Kathy (from last night) back on duty, who immediately started ramping up the next round of Mannitol, the anti-nausea meds, Ativan and Doxo. So we are now starting the second phase of this week's administration and hopefully tonight's schedule will go much like last night's schedule. Mattie has not had solid food since yesterday (vanilla pudding) so his system is stripped of food, but we are expecting more nausea and break-through vomiting tomorrow. The goal will be to minimize the loss of fluids and to stabilze Mattie so that the drugs can run out of his system.

We had several visitors today including Alison M. (mother of Paul, a Mattie buddy, and a good friend), Leslie Williams and Larry Jenney (Mattie's kindergarten teacher and assistant teacher), Liz Chiaramonte and her four children, and Ann Henshaw, Abigail her daughter and Nikki, a soccer buddy. Although Mattie was not feeling well, he still managed to enjoy his time with Abigail and Nikki as he had come out of the Ativan doped state at that point. Mattie scored many gifts today as well including a Nintendo DS gameboy, a Leap Frog Star Wars game cartidge, a Scooby Doo stuffed dog, several soft and comfy pillows, and several other gifts that we are parsing out over each day and have yet to be opened. We cannot tell you how grateful and appreciative we are to be showered with such generocity. Plus, even in his worst states, Mattie's face lights up like a firework when he sees a gift for him, just like any six year-old would.

We also met Mary Lane, a social worker, Gail Chisholm, a patient advocate, and Dr. Matthew Biel, a clinical psychiatrist. These are three more members of the team who will be supporting us. Dr. Shad and Mary arranged to get us a room for several nights in the Leavey Conference Center, which is a 100 foot walk from the Lombardi Center entrance. This was a very kind offer and Vicki and I will take advantage of it for things like short cat naps, showers or some time away for a while.

We also had a good discussion with Dr. Bob Henshaw who was at Georgetown to perform a surgery. We got a chance to see Mattie's CT scans, x-rays and MRIs as Bob took time to explain and show us the tumors as well as discuss his early thinking on possible surgical approaches/alternatives for each area. Although overwhelming, it was good to have everything laid out on the table for us to start digesting, as it allows us to start thinking and preparing ourselves for what lies ahead for our boy. Mattie will need several years of physical therapy and occupational therapy since we know for sure that all of this right humerus will be replaced with a prosthesis. The left humerus will have to be partially replaced and the distal left radius may be eligible for a bone graft or other treatments. It still is not clear on what holds for the distal right femur, but we should have some ideas soon.

Mattie is scheduled for an MRI on the three areas (left humerus, left radius and right femur) on Tuesday of next week, and Mattie will have a biopsy on Wednesday next week as well. We will likely biopsy all three areas but the MRI will guide the decision to biposy two or three areas. This should conclude the scans for now, and Mattie will not be subjected to other scans until the end of the first cycle (in about four weeks from now) when we try to get an early read on tumor growth or lack thereof. It will likely take the entire weekend for us to stabilize Mattie, and with a Tuesday morning early MRI and Wendesday biopsy, we will likely remain in the hospital until the middle of next week.

So in closing, I think we are continuing along what appears to be a very natural process of grieving including moments filled with disbelief, confusion, anger, profound sadness and acceptance. What gets us through all this are two things: hope, that chemo works for Mattie and that the surgery removes the bad tissues, prevents future occurences of the disease, and preserves as much physical function of his three appendages, and Love for Vicki's baby and my best buddy, Bear. Thank you to everyone who continue to support us in ways we are not even aware of. Ann, thanks for the laundry today and of course the Dunkin Donuts run.