Thursday, August 21, 2008

Thursday, August 21, 2008 - Today was a clinic day. Mattie is still neutropenic (a little more so than on Monday). Again, Mattie's condition is considered "normal" (for this situation) and although the doctors are comfortable with things, Vicki and I are still on pins and needles as we learn more and more about how to anticipate, monitor, and respond to his situation.

As usual today we were greeted by Jenny (an art therapist and graduate of GW!) in the Clinic, and we quickly went about our painting of the Scooby Doo ceiling tile as well as working with some clay and a pasta maker. Jenny is a wonderful art therapist and person, and really gets to know the children and families she serves. She made the fours hours we spent in the lab go by quickly. Thanks Jenny! She always finds something to stimulate and inspire Mattie with, and her energy and sensitivity always captures Mattie's attention.

Mattie's blood was drawn and we waited for the results. After a few hours we met with Dr. Gonzalez (one of the six Docs in the practice, who has a wonderful and nuturing demeanor, and seemed to know just how to get Mattie's attention), and went through Mattie's results as well as learned more about how to manage the times in between drug administrations.

We will be monitoring many items on Mattie's regular blood work, but there are three items (white blood cell, hemoglobin, and platelets counts) in particular that we will pay closer attention to so that we can determine when he has reached his nadir (i.e. bottomed out). Keep in mind that the chemo drugs target among other things cells that are very high in metabolic rate. Children have many cells that have above average metabolic rates since they are growing. Approximately 7-10 days after the chemo finishes, all of the remaining White Blood Cells die-off (since the longest living WBCs have of life of about 7-10 days), and then Mattie's bone marrow has to produce more WBCs and other essential items, which takes longer since the chemo has affected/impacted the bone marrow cells. So, 7-10 days after chemo, Mattie's counts bottom-out since the cells that provide him with his defenses were also damaged by the chemo drugs. It is a matter of time for Mattie's marrow to respond and start building back up the levels of WBCs and other essential items (like Hemoglobin and Platelets). During this time Mattie is highly susceptible to infections (see prior blog posts) primarily from himself, so we have to take extra precautions in the form of antibiotics, mouth washes and of course hygiene practices and exposure to germs.

The first metric is the White Blood Cell Count (WBC). Mattie's WBC count is 1.5, and the average range is 4.8-10.8. Another type of WBC is called a Neutrophil, which is also a fast responder to any sort of infection or foreign invader. Mattie's Neutrophil number today was 50. On average a child with cancer should have a WBC count of 500-750. So Mattie's count of 50 is considered very low. Dr. Gonzalez also mentioned that she likes to track bands, or immature White Blood Cells (immature Neutrophils). Increases in bands indicate that bone marrow (where WBCs are produced) is recovering and is responding. Needless to say, Mattie's band level is low, and what this basically means is Mattie's immunity is compromised and has a hard time fighting off infections, thus underscoring the importance of keeping Mattie infection free.

The second metric is the Hemoglobin count, which determines the blood's oxygen carrying capacity. The Hemoglobin is also sourced from the bone marrow and is constantly being manufactured and replaced. As his marrow is stressed from the chemo drugs, Mattie's blood and its ability to deliver oxygen to all parts of his body is reduced. Should this level drop another couple of points, we will need to give Mattie a transfusion since the blood has to be able to deliver oxygen, and if it cannot manufacture it then a transfusion will give him a short term burst. I also asked the Doctor today who confirmed that Mattie will most likely have to have blood transfusions with each cycle of chemo since his ability to respond and "bounce back" will be impaired with each subsequent cycle. This is something that neither I nor Vicki were prepared for as this means we are introducing another (albeit low) risk factor of infection from the transfusion. But Dr. Gonzalez was very clear with us today, and told us that in her years of experience, most if not all kids need transfusions who undergo chemo. We asked about donating our own blood, but this actually isn't a good option, since by the time the blood gets tested, it may not be available when Mattie needs it. Also blood can only be stored for a short period of time. So it appears that blood bank donation is our only option. Also, another important point to mention is that the doctors will not administer additional chemo drugs until Mattie's counts reach a minimum level, which means the simplistic five week cycles will most likely be prolonged as Mattie's body takes time recovering from each dose within a cycle.

The third metric is the Platelet count and volume. As many of you know, Platelets are the coagulating factor in the blood, and since these are also manufactured in the marrow, the body's ability to create Platelets is also closely monitored as it is a necessity. Today we were told how to monitor for signs that the Platelets were dropping without a blood test. Mattie could experience some localized bleeding under the skin as well as bruising that will appear different. Although unlikely this is just another thing that myself and Vicki are constantly worrying and focusing on in addition to the three dozen other things that are happening and must be monitored.

Despite all of this information we learned today and that we have to process, we thankfully had some visitors and some treats to cheer up the day. Mattie received in the mail today two videos. Toy Story and Toy Story 2, from a wonderful RCC buddy, Amelia Jones, who actually none of us have met yet. It just goes to show you how wonderful RCC is and the people who are at the school. Here is a family who we have never met, who selflessly sent Mattie two videos and their love and well wishes. Thank you!

Also, many thanks to Katey Hennig for supplying us with a wonderful, nutritious, and delicious dinner tonight. We snapped it up and left little behind, so thank you Katey!

Mattie also had a visit from the Head Coach of the SSSAS Varsity Football Team, Coach Dave Holm and Coach Jenney, who was also one of Mattie's Kindergarten Teachers at SSSAS. The Coaches brought a special set of prizes for Mattie including a Saints travel bag, a signed and framed picture of the 2008 Football Team, a practice ball, and a second ball autographed by all the coaches and players on the team this year. Mattie was not only shocked but really enjoyed their visit and the prizes (not to mention the vanilla shake!). This is just another example of how wonderful the SSSAS Community has been!

Before, we close tonight, Vicki wanted to share a story with you. Today, I received a beautiful e-mail from my Teaching Assistant, Carrie Barone at The George Washington University. Carrie worked with me in the spring, and is a gifted counselor in her own right. When she heard about Mattie, like many of my students, she also felt helpless but determined to find a way to do something. Carrie and my students are proposing two different fundraising ideas. The first idea, is working with us to design a wrist band (you know like the ones you see others wearing promoting or educating others about a cause) that supports Mattie and his battle with osteosarcoma. The second idea, is Carrie, the students, and our university counseling honor society want to either create or participate in a sarcoma walk. I told Carrie that I would find out if a sarcoma walk even exists in the DC area, and if not, what we can do to make this a reality. As many of you know Mattie's condition will be very costly, and though our health insurance now seems to be paying for the majority of things, we do not know what the future will hold, and I appreciate Carrie and my students taking a proactive approach. Thank you Carrie and all my students who are walking with me through this painful time!

So as we close tonight, we want you to know that we feel loved and blessed to have a community like you surrounding us!