MATTIE MIRACLE VIRTUAL WALK WAS AN $110,000 SUCCESS!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

August 23, 2008

Saturday, August 23, 2008

Saturday, August 23, 2008
We started our morning with a visit from Siobhan Starr, a mom from RCC. Siobhan brought us breakfast, and all sorts of treats and gifts. The ironic part is we never met Siobhan while we were at RCC. However, I imagine by now you as a reader are understanding that RCC is a special place. When one person in the RCC family is impacted, so is everyone else. Thank you Siobhan and Mary for all the great books and the videos. "Scooby visits Batman," was a hit today!

Mattie woke up this morning fever free. He started off this morning with a lot of energy. In a matter of two hours, he assembled a boat and plane out of wood pieces using glue and then painted his creations (Thanks Linda for the great supplies!). After that we played several rounds of Battleship. Mattie seems to really take to this game and the strategy needed to hide his ships from his opponent. The picture on the left shows Mattie painting the wooden plane he created. In between assembling and painting, Peter and I periodically took glances outside our hospital room window. From the window, we can see the Georgetown soccer fields. Today we watched goalies training, and I am convinced there is no amount of money you could pay me to leap in the air, dive for a ball, and come crashing down on my arms and body defending a goal. The picture below is the view from our window!


On one hand it is lovely to have such a view, but on the other hand this view makes me understand and appreciate how convicts in Alcatraz (a federal prison on an island in the bay of San Francisco) must have felt when this prison was still operational. If you have ever been to Alcatraz, you know that from the island where the prison is, you can literally see the sights and sounds of San Francisco, but because you are surrounded by water and can't get to the mainland without a boat, you feel isolated and quarantined knowing that your life has changed and you can not be a part of the everyday things and pleasures you once took for granted. This is analogous to how I feel sometimes when I look out at the soccer field. I see young and vibrant people playing and conversing, and yet the hospital window is my Alcatraz. I see the healthy world before my eyes, and for one brief moment, I long for what life used to be like for my family and then of course Mattie will say something to me, which brings me back to my current reality. But I digress.....


We met with Dr. Abu-Ghosh today and we talked with her about Mattie's current condition. Mattie has no fever today, and we found out that his 24 hour blood cultures came out negative, which is a good sign. Mattie's hemoglobin and platelet levels are rising today. Another good sign, which means he will not need a transfusion this go around. However, Mattie's neutrophil count dropped further today to 15, yesterday it was 60. So he is severely neutropenic. In order for Mattie to be released from the hospital, we are told that the level must be near 200 and rising. So, Mattie remains on fluids and antibiotics and they will continue to monitor his blood counts daily.


The isolation during neutropenia doesn't only impact Peter and I, but it also affects Mattie. Today he started crying and said that it wasn't fair that he should have to stay in his room. He wanted to walk around and go into the hallway. We agreed with him that nothing about this process is fair, but that we are very proud of him for how he is handling all of this. We told him he is much braver than we are. He also said to us that he knows he is going to die. Again, hearing such statements from a six year old can be overwhelming at times, but we try to listen to his fears, and try to normalize them (if that really is possible!). After listening to him, my new line with Mattie, is "dying is not an option," and also, "we are here to fight this battle, and we know you can do it and you won't do it alone."


After this conversation, we located Tricia (one of the fantastic Oncology nurses) and Dr. Abu-Ghosh, and they gave Mattie the okay to walk the hallway with a mask on. The mask did not thrill Mattie, but he was motivated to get out of his room, so on came the mask. As we started to head for the hallway, I quickly assessed who Mattie was looking for. He was looking for LINDA! I explained to him that Linda doesn't work at the hospital on Saturdays and Sundays. So with that he did an about face and was going back to his room. But we were able to convince him to sit in the hallway and work on model magic. Below you will see some of the great creations he made with Peter.



While Peter, Mattie, and I were working together, I had the lovely opportunity to meet with Marilyn. Marilyn approached me and started talking with me. Marilyn is the coordinator of the Lombardi Center's Parent Link Program. She is a nurse and a parent of a Lombardi center cancer survivor. We had a delightful conversation, and we shared our stories. Then Mattie started getting tired and we headed back to his room.
Later this afternoon, we received a visit from Julia Lee. Thank you Julia for bringing us dinner! Mattie loved the shredded cheese, chicken, and eggs! The apple juice was a big hit too! The egg dish reminded me of a meal my grandmother used to make called mozzarella en carozza. So this was very special. The videos of Kate and Eric (Mattie's preschool buddies) were also wonderful and it made all of us smile to see their messages to Mattie. In any case, it is all quiet on C52 (our unit) now, which is saying lot, since it was like a day from the drama series "ER" today on the floor. But it was a good night. Mattie ate LOTS of food, took all his medicines, and even changed his clothes. Thank you all for your continued support, cards, gifts, and e-mails. It is a very empowering feeling to know that we are not going through this alone. Thanks Julie for all that you have done for us this week, you have done a great job coordinating things for Team Mattie.

August 22, 2008

Friday, August 22, 2008

Friday, August 22, 2008

Mattie woke up today feeling tired and he said he did not have a good night's sleep. The morning got progressively more complicated as he grew very tired and lethargic. At around 9am, he developed a 99 degree fever and by 11:30am, it was around 101. We called into the clinic, and Dr. Gonzalez told us to come in as soon as we could. So Peter and I quickly packed our bags, because we suspected Mattie would be admitted for antibiotics. As many of us with children know, a 99 or 100 degree fever is nothing to even worry about or report normally. However, for a child undergoing chemotherapy, fevers can be deadly. When we arrived at the clinic we were greeted by Jenny (our resident art therapist) and Julia (one of the nurses who works in the Lombardi Clinic). On an aside, Julia and I got to talking yesterday and I learned that Julia previously worked at St. Jude's Hospital in Memphis, TN. Julia admired my "HOPE" necklace (and she had one too!) and told me that the HOPE necklace is a hallmark of St. Jude. She even took me onto the St. Jude hospital website, and I got to see the wonderful collection of HOPE jewelry.

We spent several hours in the clinic today drawing blood and trying to get Mattie comfortable. We tried to convince him to take Tylenol to bring down his fever. But we had no luck on that front. Even Jenny and Linda (Child Life Specialist) came in to try to convince Mattie. But like Peter and I always tell folks, when Mattie has made up his mind about something, it is very hard to change it, especially when fear is involved. We did find out that Mattie's Neutrophil count is rising today (60), up from yesterday's count of 50. Mattie's platelet count is also rising, indicating that he most likely will not need a transfusion this time around. The good news is his monocyte count is rising too, and as Dr. Gonzalez told us today, the monocytes are usually the first type of White Blood Cells to come back after his Nadir (or low point when all the white blood cells have bottomed out) is reached. So tonight, Mattie is being pumped up with fluids and antibiotics, all through Sparky. Several cultures are being run on Mattie's blood to try to figure out if the fever is being caused by an infection. We will know more tomorrow, but right now Mattie is on a general form of antibiotics, and if the culture results reveal a particular infection, then the antibiotics will be adjusted accordingly.

Needless to say we are in the hospital and probably will remain here at least until sunday. We have already been reunited with many of the nursing staff we had from our previous trip to the PICU. My goal is eventually to take pictures of each of these ladies, and then to describe them to you. These are remarkable ladies. So remarkable that when Dr. Toretsky asked if I would write to the nursing supervisor to let her know my thoughts about the nursing care, I jumped at the opportunity. Apparently the nursing staff was so touched by my note to their supervisor, that they cried. This was reported to me by one of the medical residents today. The residents and I have a standing joke, we are in a competition to see who spends more time at Georgetown this year. I am just kidding with them, but the residents too are fine and dedicated women, and in the midst of what we are dealing with, I wonder how they have the stamina to do this kind of work and keep the amazingly long hours they perform.

On a positive and upbeat note, I am focusing on trying to work with Carrie on developing an osteosarcoma walk. I think this is a fabulous fundraising idea, a way to educate others about the disease, and also a wonderful way to keep Mattie motivated by having a fun event to look forward to. I have already asked Bob Weiman, if SSSAS can help us with this event. But my ultimate goal is to get all our communities involved: Lombardi Center, SSSAS, RCC, and GW. Dr. Shad, The Lombardi Center Director, and I have communicated about this idea too, and she has been very encouraging and helpful to us, and wants to help us make this a reality. I realize how much all of you are doing for us already, of which I am very grateful. But it is my request that you will consider coming together and helping Carrie and I plan this event. It means a lot to me. I am targetting October, since this will be before Mattie's surgeries. If participating in the creation of the walk interests you, please e-mail Carrie at cebarone@gwu.edu. Thanks for your consideration!

On a final note, Julie Frye came to visit us at the hospital tonight and brought us some very tasty pizza, fruit, and a vanilla shake (for Mattie!). Thank you Julie for the food and for chatting tonight. JP, thank you for taking care of our handful of a kitty, and thank you Mary D. and Danelle F. for the beautiful PJs for Mattie. He is wearing a pair tonight and he is very cozy. They are the cutiest jammies! It is 12:15am here, and we are all still up. Hard to sleep, but we are planning on shutting off the lights soon. We did a round of Battleship and Candyland (thanks Linda!), and we are getting a kick out of Mattie as he is finding it funny that he can pull clumps of hair out of his head now (since the process of losing his hair is beginning). Of course if this was me, I would be mortified, but this is the beauty of a six year old! Mattie can find humor even in the most unpleasant things. Makes me wonder, why do we lose this skill as adults? Good night and God bless you and my Mattie!

August 21, 2008

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!

August 20, 2008

Wednesday, August 20, 2008

Wednesday, August 20, 2008

Our morning began by a nice visit from JJ and his owner, JP. JJ was very happy to see Mattie and we continue to notice that JJ is making an effort to also get to know Patches (Mattie's cat). The irony about this is JJ and Patches seem fascinated by each other, and they do not live up to the usual picture we have in our heads of... dog chases cat, and cat is scared.

Later on in the morning, JP (our neighbor) brought over his cleaning ladies to help clean our home from top to bottom. As a very self-reliant and sufficient person, every stage of this process has been humbling. I always prided myself on the fact that I could work, be a full-time mom, and also keep things clean and organized at home. However, with each day, Peter and I learn we need to admit at times that we need help and we can't do everything. We frankly don't have the energy to do it all, and whatever energy we do have should be going to Mattie! So I must admit I was skeptical about having someone help me clean, and felt that this was just another part of my life that I couldn't control anymore, and yet would now have to manage someone else in my life. But then walked in Carmenza and her assistant Blanca. These two ladies are delightful, did not get under toe, where sensitive to Mattie's condition, and also told us they will be praying for Mattie each sunday at church. I am happy to report that our home smells beautiful and clean, and the positive spin is I did not have to lift a finger. The wonders of cognitive reframing!

At noon, we had a special visit from Bob Weiman, SSSAS's Head of the Lower School. Bob also visited Mattie at the hospital last week and began to teach Mattie some wonderful magic tricks. Mattie performed these tricks for many of his visitors and the nurses. It is funny how magic can bring people of all ages together, and how conversations can just unfold because we are all intrigued and want to know the techniques behind the illusions. Bob, who learned magic from his dad, arrived today with a hand crafted magic bag for Mattie. The bag was adorable. It has Mattie's name and a wonderful painted magic wand on the front. Inside the bag were several new tricks that Bob taught Mattie, and that Mattie gets to keep. Peter and I were equally fascinated, and I had a good time watching Mattie trying to teach the tricks to Peter and I. It is very special to have Mattie's Head of School visit our home, but how many Head of Schools can also perform magic and have the patience and passion to teach little kids how to do this? My guess is not many. Besides Bob's ability to run a lower school, and do magic, he also has a way with food. He brought us some wonderful salads and delicious fruit, and even made a wonderful supply of Scooby Doo mac and cheese for Mattie. Not to mention Mattie's all time favorite, a McDonald's vanilla shake! These were major hits with Mattie. Below you will see some pictures we took of Mattie with Bob. Thanks Bob for perking all of us up!
At the moment, all is quiet in the Brown house. Mattie is resting. As many of you know Mattie never naps, so this is yet another change that reminds us of what Mattie is contending with each day. However, this was another good day, and we take all of those that come our way. I want to thank Julie as well for coming over today and dropping off a Mattie care package filled with things such as pedisure and carnation instant breakfast powder (all good sources of protein for Mattie). Julie, Mattie is still taking his meds. The nose trick works!
Thank you Ann, for calling today just to say hi. Ann is on vacation, but is deeply concerned about Mattie and even though Ann and I have known each other for years and serve on RCC's board together, I have a feeling we will get to know each other even better through this journey. What I find most remarkable, is Mattie's story seems to touch everybody, even people we do not directly know. For example, my friend, Charlie (a retired Lt. Colonel in the Air Force) told her two friends about Mattie's situation. She told them that Mattie is fascinated by ships and planes, particularly military ones. Low and behold, Charlie's friends mailed Mattie two packages of wonderful pictures of navy ships, air craft carriers, and fighter planes. Not to mention lots of military patches for Mattie to put on things. One of the men who mailed us the package has a son in the Navy, who is stationed on the USS Enterprise. Charlie's friend plans on visiting his son soon, and will send Mattie something from the USS Enterprise. The kindness and generosity of others continue to amaze me. I thank each and everyone of you for your e-mails, cards, gifts, and prayers. They do not go unnoticed or unrecognized.

August 19, 2008

Tuesday, August 19th, 2008

Tuesday, August 19th, 2008
Today was a red letter day in the Brown home! Mattie woke up feeling fine, with no fever! His physical energy level is down, but his mental energy is quite good. Peter and I have been taking turns today playing with Mattie, since he is very much on and wants to stay busy. Which as many of you know is quite typical for Mattie!

We have been struggling with Mattie on taking his antibiotics. Rationalization, rewards and even bribes were getting us no where. Mattie needs to take antibiotics three days a week, twice a day, to prevent him from getting pneumonia. I was talking to Julie this morning, a friend of ours from RCC, and another coordinator on Team Mattie. Julie happened to say, "have you tried holding his nose" so Mattie can't smell what he is swallowing. Well we tried everything else, so I figured that seemed to make sense, let's try it! Mattie thought that was such a funny suggestion, that he decided to try it and guess what? Down went the medicine! We made a super big deal out of his achievement, and we plan on having him hold his nose again tonight when he takes his second dosage. Thanks Julie!

Another big achievement for the day was Mattie took a shower. Funny how the usual occurrences become big deals. Any case, Mattie hasn't showered for about two weeks, since he was admitted to the hospital. He was frightened to get "Sparky" wet. But we taped up Sparky today with a plastic bag, and Mattie showered himself. When he got out of the shower, unfortunately "Sparky" got wet. Which meant that his dressing needed to be changed. Now that sounds easy enough, but picture pulling VERY sticky tape off of a very tender part of your body, that has a tube coming out of it. Not a pretty picture. However, Mattie was VERY brave, and sat through the changing. At one point, I thought I would be unable to complete his dressing change effectively, and I basically said, "I can't do this." At which point, Mattie told me, "yes you can, you are doing a good job." Despite the pain, he still has a sense of humor and I figured if he thought I could do it, I better prove him right!

The rest of the day, we have been spending doing a lot of lego building, playing Funny Bunny (a board game), Ants in the Pants, and Don't Break the Ice. The classics are coming back out! Mattie is enjoying reading his e-mails that you are sending him. Thank you for doing this. He even received an electronic greeting card today, which he thought was SO much fun to watch. I want to thank Christine for checking in with us several times today to see if we needed food, and Alison and Ann (our other Team Mattie Coordinators, who are both on vacation with their families) for checking in with us today. Thank you Julie and all of Team Mattie for the work you are doing on our behalf!

August 18, 2008

Monday, August 18th, 2008

Monday, August 18th, 2008 - Mattie is now neutropenic (also mentioned on top of the blog). This was confirmed based on our visit to the Clinic today and Mattie's blood being drawn. Neutropenia is when the white blood cell count drops below certain acceptable levels. When this occurs the body's first line of infection-fighting defenses (one of the three types of white blood cells) is impaired and cannot fight-off bacteria that are present within the body already or new bacterial infections. This can be a very serious condition as antibiotics need to be administered immediately upon the detection of a fever. As a result, Mattie cannot have any playdates and needs to avoid contact with anyone not feeling well or dealing with ill people as this increases the chances of Mattie being infected. Yet another awful and very isolating aspect of this disease.


Mattie did go to Clinic today and had a chance to play some with Jessie and Jenny, the art therapists. Appearing to be unplanned, Jessie and Jenny had a ceiling tile out in time for Mattie's arrival that just happened to have the five Scooby-Doo characters outlined on it (many of the ceiling tiles in the Clinic have been taken down at one point or another and hand-painted by the kids with all sorts of things). So, we spent the in-between time painting Shaggy, Scooby, Velma, Daphne and Freddy. Even Mommy and Daddy got in on the act (you can see Mommy and Mattie together painting on the right)! After Clinic we stopped at the Drive-Thru for a shake and a Happy Meal, and at CVS for another prescription. I can't remember what time it was but it was some time after 2:00pm before we got out of the Clinic. We also were seen by Dr. Snyder, one of the Hemonc Drs. in the practice, who was very nice. Although we had only ever said hello to her, Dr. Snyder spent a lot of time talking us through the aspects of Neutropenia, which was very helpful.

Once home, Mattie had another visitor, his former preschool teacher and family friend, Margaret Sharkey. Margaret brought Mattie a lot of neat things including a piece of "Pirate Booty" that she found along the beaches of North Carolina last week. Margaret (along with Lana) was Mattie's first preschool teacher at Resurrection Children's Center (RCC) and has become a true friend over the years. Thanks Margaret for the treats from the Dairy Godmother (not sure who is happier about that, Mattie or Vicki)! Also thanks for the wonderful window gel creatures.

Mattie had fun playing with Margaret but tired fairly quickly, which we have been noticing lately. The fatigue and tiredness are expected (along with the Neutropenia), but it seems like no matter how much we try to prepare ourselves, we are still never fully ready when it happens. Thanks go out to Christine Cooper who insisted on bringing us dinner tonight, but both Vicki and I waved her off since neither of us were up to eating after the afternoon's Drive-Thru experience.

We are now monitoring Mattie's temperature every hour (not fun with a boy who is non-compliant with much of what we ask these days) as fever is probably the only signal that Mattie has an infection. We have to be prepared to dash off to the hospital should his fever reach a sustained level of 100.4 for more than a two hour period. So here is hoping that we do not break triple digits in terms of Mattie's temperature. He is currently running a 99 degree fever.

August 17, 2008

Sunday, August 17th, 2008

Sunday, August 17th, 2008 - Today was another good day. Mattie and I went out to ToysRus today this morning to get a treat for all his good work taking medicines this past week/weekend. We were (of course) ready to go before the store was open, so we had to kill some time this morning by going to Home Depot for a bag of dirt, as JP (our neighbor) donated to our rapidly growing forest, another evergeen in need of more space than what a pot could provide. Once at the toy store, Mattie quickly locked in on a Lego Coast Guard boat and lookout tower. Mattie and I spent the rest of the morning building and assembling and playing with the set.

In the afternoon, Mattie and I worked on another fountain (that was supposed to be part of Vicki's birthday gift at the end of July), while Vicki ran out for a few things at the food store and to pick up some prescriptions. We had several encounters with JP and planted the evergreen. After she returned, Vicki and Mattie played for some time with the Lego set while I tended to the garden/plants.

Later in the afternoon, Mattie had a real treat as his buddy Charlotte Gehrs and her mom Ellen, came over for a playdate. The two of them spent time upstairs and downstairs playing all sorts of things. Also, Charlotte gave Mattie a Scooby-Doo DVD Board Game (this is a first for me!) that uses both a board game with cards, and pieces but also asks questions on the DVD and is interactive with the game. The two also had some pizza flavored hot pockets, juice boxes, yogurt tubes and also played with he piano and the cat. It was a real treat for Mattie to have another playdate with a good buddy as he forgets largely about his situation. God bless children and their ability to live in the moment and block out both the past and the future.

Vicki and I flushed Mattie's lines again tonight as he sat and ate an ice cream cone and watched Scooby. Mattie also took his Clotrimazole lozenger (antibiotic) and used the Biotene mouth wash (way to go Mattie!). As the effects of the chemo develop Mattie's mouth, gums, throat and airways become more susceptible to bacterial infections that someone with a regular immune system would never struggle with. So, it is important that Mattie stay clean and follow his regimen of preventative medicines. Tomorrow we are off to our first clinic appointment and will have a better idea how his white blood cell count is doing. Signing off to another good day!