Wednesday, August 6th, 2008

Wednesday, August 6th, 2008 - I am writing today's entry a little earlier today since Mattie has recovered from the PET scan sedation and is presently out in the hall painting with Liza, a wonderful volunteer with the Child Life Specialist office.

The process of the PET Scan went smoothly. Mattie received his isotope injection in his room and then some Versed (an anti-anxiety med), which made him happy and relaxed (imagine him spaced out and inebriated but not out of control). After I lifted him into the gurney, he was wheeled down to the Nuclear Medicine Center where he received his Propofol injection that works in about 15 seconds. Mattie was unconscious for the entire procedure (he never even saw the machine nor remembered the trip down there) and during this they changed his central line dressing (which can be a traumatic experience with the sticky adhesive).

So, to get to the results, the PET Scan identified two additional tumors: a small tumor in the distal right femur that the bone scan had picked up on (which is the leg bone connecting the hip and the lower leg bone and is just above the knee), as well as a much smaller tumor in the distal left wrist (at the end of the radius, one of the two arm bones). What this will mean is that both of these areas in addition to the two humeri will have to get surgery. The positive spin on all this is that Mattie does not have any tumors present in any of the internal organs or any of the axial/trunk bones (i.e. lungs, pelvis, chest, head, etc) or the lymph system. Also, on a side note, the pathology from the first biopsy of the right humerus was deemed a stage 2 malignant osteosarcoma, which is consistent with the way the cancer is presented.

Both areas will likely have to be biopsied and we are aiming to get that done this Friday. The wrist tumor could be addressed by radiation since the spot is so small and may be a good candidate since it is very well contained and small. We need to discuss this option and will be meeting with Dr. Gagnon here at Lombardi (as well as others) to begin exploring what this might entail. The femur will also have to be operated on but again on all four surgeries we will be working directly with Dr. Bob Henshaw to advise us as to our options including potential second opinions at Hopkins (Dr. Webber) and Seattle (Dr. Conrad) for some of the surgeries. Again, we need to begin discussions with Dr. Bob about these and will do so once we are underway on the chemotherapy.

We met with Dr. Jeff and discussed all of these results and we agreed to begin chemo Thursday morning. We still need to discuss tonight with Kathy, our lead nurse practitioner, the specifics of each dose, routine, administration, onset of side affects, medications, etc., so more on that later, but we're getting going tomorrow.

Mattie will also get a physical therapy evaluation and possibly begin a program in order to strengthen his muscle tone since he will need to be as strong as possible for the post-surgeries. A preschool parent Friend of ours, Kristin Emery, who visited yesterday and who happens to be a Pediatric PT, made an astute observation last night via email that Mattie should start getting PT now and continue on a regimen until surgery, after which PT will continue to be a main routine for Mattie.

We still have many options, alternatives and answers to address regarding Mattie and his chemotherapy plan. For now, all involved agree that we must start chemo as soon as possible on the standard protocol, but we are also all in agreement that as we see how Mattie responds to the chemo, and what the Tumor Board provides input on, and what Dr. Jeff uncovers through his conversations/consultations with other experts in this field, that we will make the right decisions and take the right actions to maximize Mattie's chances for survival. On a side note, Vicki is convinced that Dr. Jeff is related to Patch Adams. Do you remember that movie with Robin Williams? Dr. Jeff has a great rapport with Mattie!

On a lighter note, Mattie had a fantastic morning thanks to a half dozen good buddies who came to visit Mattie in his room. First to arrive was Charlotte, a good buddy from kindergarten, who instantly turned the room into a goofy, laughter-filled environment. The two quickly got into painting in the hall, and were joined by Claire, another good buddy from Kindergarten. Next arrived Kate, Eric and Jaimie (Resurrection buddies) and Zander, another good buddy from kindergarten. So Linda, the Child Life Specialist, ended up entertaining Mattie and his six buddies this morning. They used ModelMagic, paints, stickers, pipe cleaners, played with the I-Spy wall mural and blew bubbles in the hall. Needless to say it was a wonderful thing to see happening. The mental image I have is six kids lined up shoulder to shoulder on the bed, with Mattie in middle, all watching Scooby in a hospital room. For me, that image alone helped redefine for me the cold and ominous images one gets from seeing a hospital bed and IV pump and pole.

Mattie was also showered in gifts once again from his visitors this morning. For Mattie it's like having a mini-birthday each day, which really helps with the minute-to-minute and hour-to-hour existence for both him and us. We cannot thank you enough for all of your generosity. Also, your visit enabled Vicki to get outside and among adults (and non-medical professionals) and to talk. So Thank You!

Also, I got a note from a close friend and former Arthur Andersen colleague, John Bonds, another person who shares something in common with Mattie, who told me that among other things a group of my former Andersen co-workers, have ordered a series of pre-cooked/frozen meals from Let'sDish, which will be delivered to our home, and that can be frozen and when needed heated up in 30 minutes, so thanks! Even if Andersen was taken down by a few foolish guys in Texas, we benefit from the bonds of friendship that were formed while working together!

So, we are trying again for a normal night in the hospital (yeah, these are probably mutually exclusive concepts), and are trying to prepare ourselves for the start of chemo tomorrow.

Note to all: thank you for your comments in the blog. We get notified by email each time a comment is added, and like an invisible hand, the comments are both helpful, informative, heartfelt as well as timely. So thank you and please keep them coming!