Wednesday, August 13th, 2008

Wednesday, August 13th, 2008 - Today was a good day. In spite of Mattie having a 7:00am biopsy that required sedation once again, he was a champ. With the help of a little Versed administered in the room, and then a "cool ride" down to the CT Center, and then Propofol, Mattie went through the CT guided biopsy with contrast in about an hour or so, completely unconscious. We retrieved Mattie in Phase 1 Recovery where he had been administered Morphine, and was in decent spirits. On hand to perform Mattie's biopsy were Dr. Allison Lax (a truly compassionate radiologist, who personally visited with us twice today to see how Mattie was doing!) and Dr. James Jelinek (who works very closely with Dr. Bob at Washington Hospital Center). The Team decided just to biopsy Mattie's distal right femur (just above the knee after conferring with Dr. Bob Henshaw) since the MRI imaging from yesterday convinced the team that the other two sites on the left arm were indeed Osteosarcoma. We should have the pathology results by friday or monday morning, but everyone seems confident that the results will also be Osteosarcoma. The irony is that through a PET, Bone Scan, and MRI something of question showed up on the right femur, but this same area did not appear on the x-rays or CT scans. Which makes this particular area rather suspect and in need of further exploration, which is one of the reasons this leg was chosen today for a biopsy. Mattie's knee was both swollen and bandaged, but he was feeling good most of the day.

Once Mattie recovered later in the morning, Mattie had some visitors. First, there was Junko Funahashi, mother of Kazu Ferris, an SSSAS buddy. Junko brought Mattie some gifts to pass the time of day and much to my delight, a Red Sox game hat that they purchased while seeing a game at Fenway this summer. We also thank the Ferris family for their very generous gift of meals and groceries. Junko's mom also assembled 60 origami cranes and tied them together beautifully to create a "praying crane" hanging mobile. You can see this colorful display in the picture on the left below (right near Scooby's nose!).




Next, Mattie had a surprise visitor, who was very tall, furry, wore a collar and had a slight speech impediment: you guessed it.... Scooby! Though Mattie was happy to meet Scooby he was convinced that Scooby was really being played by Dr. Myers. One of the oncology doctors in Mattie's practice. Mattie even questioned Dr. Myers about this later on in the day, Mattie was convinced that Scooby had to be played by Dr. Myers because the doctor and the visiting Scooby were the same height. Trust me, it was hysterical!


Next, Elizabeth Sterba and her mom Anne, paid Mattie a visit. At that point, Mattie wanted to get out of the room, so Linda requisitioned a wheelchair, and off the team went around the unit. Mattie quickly started mastering the wheelchair and was already powering it on his own.

Mattie was joined by Anna Fragomeni, the resident Physical Therapist, who performed an evalution on him while Elizabeth and Mattie played ball and drew a chalk picture that was then taped to his hospital room door. Once again, Mattie was acting like a typical six year-old this afternoon, which made us very happy.


Deb Berry then stopped by to drop off dinner for us as well as two "find Scooby" books (similar to the "Find Waldo" books). Many thanks Deb for dinner! Also, Amany Aridi (a close family friend) stopped by and brought us some tasty treats and ice cream and stayed to chat for some time with us.


So, the bigger news is that we are going home tomorrow (Thursday), and that Mattie will not have to come to the clinic to check his blood levels until Monday. Vicki and I have been trained and were practicing today (and will actually perform) the dressing changing, flushing and cleaning activities that Mattie's central line (nicknamed "Sparky") will require each day. For example, every day that he is not receiving an IV or in clinic, Vicki or I have to push 10mLs of saline through his lines and then push 3mLs of Heparin (and fast acting anti-coagulent) to make sure both of the lines stay open. Also, we are coordinating with a home medical supplier to deliver the required materials to our home so that we have the appropriate supplies to do this. Let me say this, pushing fluids into tubes extending from your child's chest that dump directly into a major artery just before his heart, is a little scary to say the least. But like many things in the last three weeks, we just have to accept and embrace this as well. We thank Erin (one of Mattie's nurses) for her patience today in training us. She is a marvelous teacher! As Vicki says to all the oncology nurses, "if we have to be going through this, she can't think of a better group of people to go through it with."


This is Week 2 of the five week chemo cycle, and is supposed to be an "off week" for Mattie (ha ha!!). Mattie will go to clinic on Monday and Thursday next week, as well as Monday (the 25th) of the following week, and then on Thursday the 28th, Mattie will be admitted to the PICU again for his first dose of Methotrexate, which will take several days to complete (between administration and level balancing). Mattie will then go home for a few days, and then come back to the hospital on the following Thrusday (Sep. 4th) for his second dose of Methotraxate, and then that will complete one cycle. The next Thursday (Sep.11th), Mattie will start back at the beginning of his chemo cycle.


So we will try to make this weekend a normal one for Mattie. Mattie's energy level and counts are expected to drop some time next week as the chemo's effects continue to impact Mattie's body. We will keep up the regimen of thrice daily antibiotic lozengers, four times daily mouth washes, and will add in thrice daily Bactrim doses next week, all in an effort to prevent infections. So, we'll see how tomorrow goes as we spend our first night back at home in 11 days.

Before we end tonight, Vicki wanted to say a special thank you to Resurrection Children's Center (RCC). Vicki received an e-mail today from Kim Messinger, the school's director (Vicki found the e-mail so touching that she landed up crying). Kim and the entire RCC community are deeply concerned about us, and want to find a way to ease the isolation that this year may present us with. Vicki will work with Kim on coming up with something feasible for Mattie, but once again RCC has entered our life in a time where we really need support and compassion. We are the living proof that RCC truly embodies and embraces its mission of inclusion of all children!