Saturday, October 4, 2008

Saturday, October 4, 2008

Mattie woke up in a "grumpy" mood. This is his own word to describe how he was feeling for most of today. For some reason he thought he had to go back to the hospital this morning for his MRI scan. I told him that wasn't the case, and that we were headed to have a nice day doing something he wanted to do. I had chatted with him yesterday about what he wanted to do today. We came up with the plan of going to the B&O Railroad Museum in Baltimore, and then to have an early dinner at the inner harbor. I figured being by the water and looking at boats (something Mattie wants to have, in fact, if you ask Mattie what he is saving money in his piggy bank for he will most likely tell you to buy a motor boat, and he doesn't mean a toy one!) would be therapeutic for all of us.


So we all loaded in the car and headed to Baltimore. We ran into traffic and landed up stuck on the road for a while. It was getting to the point where we were wondering if this road trip was a mistake. But things eventually opened up on the road. Mattie continued his grumpiness for most of the museum trip, but we accepted and understood his mood and tried to give him his space and followed his cues. But to say these moments are frustrating and difficult to deal with would but an understatement. According to the B&O Railroad Museum website, "the Museum possesses the oldest, most historic and most comprehensive American railroad collections in the world. Dating from the beginning of American railroading, the collection contains locomotives and rolling stock, historic buildings, and small objects that document the impact of the Baltimore & Ohio Railroad (B&O) on the growth and development of early railroading and cover almost every aspect of an industry that left a permanent mark on the folklore and culture of America."

Today was "steam day" at the Museum and they had a special steam train ride taking place. The steam engine was called, "St. Elizabeth,"named after St. Elizabeth's hospital in DC. Mattie seemed to perk up by seeing Elizabeth and thought the ride was neat as well. You can see a picture of us in front of Elizabeth below.




Pop Pop, Grammie, Mattie, Vicki, and Peter





Mattie got aboard many of the trains at the museum and we all enjoyed the opportunity to experience a by gone era. Of course no trip is complete to a museum without going to the museum store. Mattie picked out a few things and then we were off to Baltimore's Inner Harbor. We ate at a restaurant right on the water, and as we sat outside, we enjoyed the fresh air, the seagulls, and the boats. It was a lovely time, because it was the first point during the day where we saw Mattie at peace, eating and playing. He is now into hotdogs. Not a thing I would feed him prior to his illness, but if he wants to eat something now, I accept anything he wants. He ate an entire hotdog, ate some fries, drank water, and ate a whole small cup of ice cream. It was amazing! We haven't seen this much food consumption in weeks. It made us all happy, especially since I look at Mattie's tiny body and wonder how much more weight can he lose? Kathy, our nurse practitioner, explained to us on friday, that the more weight Mattie has, the better his chances that his body will be able to recuperate and flush out the chemo. That was definitely an interesting fact.



Vicki, Mattie, and Peter at Inner Harbor

We are now planning our day tomorrow and coming to terms with our next hospitalization. I truly appreciate all the supportive e-mails you all sent me between yesterday and today. I appreciate you acknowledging what a difficult week it has been for us, and I greatly appreciate your insights about what transpired yesterday with my decision to give Mattie the yogurt (thereby preventing him from getting his MRI). You are right, scans can always be rescheduled, and sometimes as a mom I have to make some executive decisions that no doctor or nurse can possibly understand. Thank you for sharing your thoughts with me!

Mattie was excited to open up several packages today. We have a Mattie pile of gifts in our living room, and he opens up a few at a time. Thank you all for always thinking of Mattie. Kazu, Mattie loves the Word World, and Grandma, Mattie will get a lot of use out of the fleece hat, and of course the puzzle and game, and Julia and David thank you for the Paddington Bear, story, and airplane paper kit. On the electronic front, thank you Karen, Kim, Susan, and Emily W for the wonderful e-cards and Barbsie for the great e-mail. Thank you Ann for continuing to check in with us yesterday and today. If I were you, I would be running the other way, not knowing how in the world to handle all of our emotions. We admire your commitment and dedication and what you continue to do for our family.

Friday, October 3, 2008

Friday, October 3, 2008 - The MRI did not happen today!

Mattie was scheduled to take a two hour MRI at Georgetown Hospital today. If you have ever spent more than 10 minutes in a MRI machine, then you can appreciate why Mattie needs to be sedated for a two hour long scan. I was briefed by two nurses yesterday on the phone about what Mattie could and couldn't eat and drink before the MRI today. They made it very clear to me, and since I have done scans many times in the past with Mattie none of these instructions were novel or unusual to me. However, there was a big difference today! Mattie is seven weeks into his diagnosis, he at times is at his breaking point with going to hospitals, and he gets scared. He woke up in one of those moods today. Any parent can relate to this, there are just some days your children wake up and you think to yourself, wow this is going to be a LONG day! In any case, Mattie was sad, upset, and unhappy about the prospect of going to the hospital today for a scan. He kept insisting that he was hungry, that he wasn't going to make it, and was simply hysterical. So against my better judgment (and of course judgment at times goes out the window, when you see your child frightened and upset), I gave Mattie a teaspoon full of yogurt to meet his hunger demand. Mind you I first tried all the other "approved" things he could of had, like water, jello, and popiscles. But he refused all of them, and he just persisted to work himself up into a fit.

We arrived at the hospital around 10am, and tried to register Mattie for the MRI. I went to the usual day registration area, like I have done in the past. However, today, the staff there told me I did not have to register there but just head to the MRI area (I was suspicious, but I went along with the process). So now I move my parents and Mattie from one location in the hospital to another. I get to the MRI area, and the staff there tells me, NO I am in the wrong place again, and I have to go to the Day Surgery registration area. So now I move to the third location. At Day Surgery registration, they tell me, NO I am still in the wrong location, and they send me back to the first place I tried, which was day registration. At this point I was livid. It took me over an hour to do all of this, and I had to schlep Mattie around from place to place. But you have to understand Mattie was frightened and upset to be at the hospital to begin with, so moving from location to location did not help the process. By sheer accident, I ran into Gail, our patient advocacy liaison. I told her I wanted to talk with her, and she met up with me about an hour later, and I told her about my registration fiasco as well as my unsettling experience with Mattie's platelet transfusion. Gail immediately went into action, so much so, that I had a meeting with the director of the Georgetown bloodbank later in the day.

Our saving grace today was Linda. Linda met me down in the Day Surgery area, and rescued us from hanging out there. She helped us back to the MRI waiting area and played with Mattie until his scan time. We got Mattie changed for the scan and they even started the sedation process. It was at that point, one of the doctors asked me what Mattie had to eat this morning. I was honest and told her about the yogurt. It was at that point that the doctor said Mattie couldn't have the procedure until 6 hours after he ate the yogurt. The MRI machine was booked up back to back today, so therefore his scan had to be cancelled. As if I did not feel bad enough about this, I felt that the doctor made me feel inept as a parent, and not only inept, but a parent who doesn't establish boundaries and limitations for my child. Of course, it is possible I read into this, but that is how she made me feel. Like the week hasn't been hard enough, I now needed another guilt trip. I left the MRI area feeling awful, because I knew this scan was important for Mattie to have. I called Peter and he immediately talked me through how I was feeling. Peter totally understood why I gave into Mattie's demands for yogurt today, and he told me we can always do another scan. Peter is very protective of me too, and I think if he were present today, he would have given this doctor a piece of his mind.

After this experience, we headed to the Lombardi clinic, because Mattie needed his blood checked to prepare him for his monday chemo admission. While we were at the clinic Mattie met up with his buddy, Jenny. Jenny normalized the MRI experience for me, and started playing with Mattie. Mattie even ate half a sandwich in the clinic. There is something about Jenny's presence and the inspiration to eat. Meanwhile, Dr. Toretsky came in to see us. This wasn't a planned visit, but he knew we were in the clinic doing blood work, and he had also read our blog and wanted to follow up with me. I am not sure how long I spoke with Dr. Toretsky today (it wasn't a short period of time, nor was he watching the clock like many others do), but he basically listened to every one of my concerns and helped me understand and put what I learned at Sloan Kettering into perspective. For me it has been a very sad week, and at times today I listened and cried, but Dr. Toretsky was able to walk this path with me. He holds out for what we all want, a cure for Mattie, and the only way possible to give him this opportunity is to have surgery on all four tumor locations. In many respects, Dr. Toretsky had a very hard job today. He had to find the way to instill hope back into me, and to pick up the shattered pieces and aftermath of our Sloan trip. One thing is for certain, I feel that Dr. Toretsky and I are on the same wavelength and he welcomes my feedback and concerns. But I feel tired, and just plain weepy this week.

After our visit to the clinic, my parents and I took Mattie out to lunch at a restaurant in DC, that has a working train that runs around a track on the ceiling. Mind you lunch for us was around 4:30pm, and we were all starved. Mattie started lunch grumpy, but perked up and I was able to feed him 3/4 of a pizza while he was busy working in his highlight's hidden picture book (thanks Margaret!). Fortunately my parents were with me, because if not, I most likely would have gone home and not eaten.

Mattie had a lovely visit this evening from JJ. It was a great reunion and JP (our neighbor and JJ's owner) brought Mattie back some very special gifts from his trip to Spain, where he visited his mom. JP brought Mattie a wonderful Don Quixote t-shirt. This Cervantes character is wonderfully symbolic of the tenacity of idealism that we need to hold onto during these difficult times. Another special gift JP bestowed on Mattie was an official Real Madrid soccer uniform! This was very "cool" as Mattie puts it. Thank you JP for thinking of us while in Spain!

I received two lovely e-mails that I wanted to share with you today. One came from Ashley, who is a RCC mom and Sam, her son, is one of Mattie's buddies. Ashley wrote, "Sam had a yogurt the other day that had one of those pink tops--the ones you collect and send off to help raise money for breast cancer. He asked about the top and I explained that if you collect the lids (we've done this in the past), send them in, the yogurt company will raise money for cancer. Sam said, "can we do this for Mattie Brown?" I thought that was very touching. Thank you Sam.

The second e-mail came from my college roommate and friend, Leslie. Leslie worte, "Last week Faye and I were doing her Hebrew School homework and reading about Rosh Hashanah (Jewish New Year). It said: "Rosh Hashanah is a day of hope. We hope for good things in the year to come...Whatever people hope for, they can tell their hopes to God." As soon as I read that statement I immediately thought of you, Pete, and Mattie. In the Greenberg household our hope for this New Year is for Mattie to beat this cancer. Leslie, I am hoping God is hearing our prayers. Thank you!

We want to thank the Peterson family for a wonderful dinner tonight. I love pumpkin soup and it makes me feel better. Also, how on earth did you know we LOVE apple pie? Your homemade pie is a total treat, and the fact that you made it from handpicked apples from an orchard is very special. Thanks for being so thoughtful.

On the electronic front, thank you Kim, Lorraine, Susan, and Karen for your great e-cards and Jackie for your wonderful seal video! We are hoping to have a peaceful weekend before we head back into the hospital on monday for the next round of Methotrexate.

Thursday, October 2, 2008

Thursday, October 2, 2008

Thank you Susan S. for sending me this lovely quote! I think it is the perfect way to start off today's blog! I think we need a miracle.

"Out of difficulties grow miracles." Jean De La Bruyere

Peter, my parents, and I were focused on one mission today. The mission was making Mattie happy. He woke up excited about the fact that he was going to do something fun today. Fortunately my friend, Karen, last night presented Mattie with an alternative plan from taking a boat to the Statue of Liberty (which is what he originally wanted to do today). Karen used the power of suggestion, she told Mattie about the wonderful Natural History museum in NYC and then told him all about FAO Schwarz. This morning was cool and windy in NYC. Since I have come down with a cold and sore throat, the idea of being on a boat wasn't appealing. Mattie came up with the plan of going to the museum to see dinosaurs and then buying a special toy at FAO Schwarz. So we packed up our bags, and we were off. We taxied to the Natural History Museum and had a great time. They had a special live lizard and snake exhibit. Right up Mattie's alley. I am NOT a snake person, but at this point, I would have stepped on a snake (a non-poisonous one of course and that says a lot since I REALLY dislike snakes) if it made Mattie happy and smile. The exhibit was great and after that exhibit we went up to the fourth floor and saw some amazing dinosaur bones. See the pictures below of our adventure.

In DC, we have Elephant and Donkey statues, but outside the Natural History museum, there were three wonderful horse statues. Most likely because they had a special horse exhibit featured inside, but we couldn't resist posing it front of this horse.

Vicki, Mattie, Grammie, and Pop Pop

The Three Amigos! One amigo is not happy to get his picture taken.

Voted one of our favorite lizards today! Mr. Chameleon! His skin changes color based on his emotions! When he is relaxed and calm, he is green. I agree with Kermit the Frog, "It isn't easy being green!"

Mattie loved seeing this T. Rex. The exhibit left an impression him! He loves dinosaurs and couldn't believe these were real bones!

After the exhibits we had lunch at the museum then jumped into another taxi and headed to FAO Schwarz. What an experience. A toy store like no other! Mattie was a man on a mission, he wanted a lego set, and headed up the escalator to the lego section. The lego section is right near the famous floor piano, that was featured in the Tom Hanks movie, "Big." We all enjoyed seeing the piano being played. It is funny to me, how some simple plastic blocks can make a six year old so happy, but better yet, it is even more perplexing why these plastic pieces have to be SO expensive. Normally I would have refused Mattie's insistence on such a large lego set, but how can you refuse a child who has been through all sorts of pains, and who spent the previous day in a hospital? Well we couldn't and we came home with a large hotel lego set! When we exited the toy store, we observed our own version of Lady Liberty. See below.

Right: the Floor Piano

Left:
Mattie LOVED FAO Schwarz.

Only in NY! We did not make it to the Statue of Liberty, but we did see Lady Liberty. This person was dressed as Lady Liberty right outside of FAO Schwarz. Moving around and talking to people!

Our trip home today took us about four and a half hours, but it was uneventful. We arrived home and unpacked and were greeted by a wonderful dinner from Beth E. Thank you so much Beth, and the soup was very needed. My throat thanks you. Also we love the book of "Hope through Heartsongs." Thank you for sending this to us, and I love the name of the author, Mattie Stepanek!

I want to share three e-mails with you. The first one came from Anne. Anne is the mom of Elizabeth, a classmate of Mattie's at SSSAS. Anne wrote, "We belong to a church in Alexandria. Elizabeth is now too old to go to Enrichment class during the sermon so she sat with us throughout the whole service for the first time. I explained to her what each part of the service was and when we got to the part entitled "Sharing of Concerns and Blessings," she asked what that was. I explained that people can stand up and tell the congregation about friends or family who are sick or blessed. She asked if she could stand up and talk about Mattie. I said sure. That is precisely the point of that part in church. So as the time gets closer and closer she starts to get nervous and ask if I will stand up and talk instead of her. I said yes, but that she could try. She said okay. Finally, the time comes and she raises her hand. Well, she is so short, Pastor Carl does not see her, so she stands up and starts waving her hand. He calls on her, and she stands up and looks around. . . . she completely panicked and looked at me. So I stood up and asked for prayers for "Mattie Brown, a classmate of Elizabeth's who is ill." After church, we saw Pastor Carl and he asked Elizabeth if she wanted to include her friend on the prayer request portion of the bulletin. She said yes. So we went over and she wrote in all of the information so our church can pray for Mattie." What a wonderful gift from a friend. Thank you Elizabeth for thinking of Mattie, and very being brave and willing to speak up in church. We appreciate all the prayers.

The second e-mail came from Tad Ferris. Tad's son, Kazu, is a buddy of Mattie's at SSSAS. Tad wrote, "Mattie of course never ceases to make me smile (in my heart), from his courage, and ability to move through this and focus on those around him. These are his daily gifts to us." I agree Tad, Mattie is a special gift!

The third e-mail was sent by Coach Dave at SSSAS. Dave wrote, "In football, we coaches have a saying that a player is “big time.” That means that the player is a great person, hard worker, tough, smart and does everything the right way. Everybody loves and respects the player. Well Mattie, I want you to know that all of our coaches think that you are “big time.” Keep doing what you are doing and I look forward to seeing you soon." Thank you Dave, we think you are "big time" too.

On the electronic front, thank you Linda, Kim, Charlotte, Susan, Lorraine, Emily, and Karen for the wonderful e-cards, and Mr. G, Denise, and Barbsie for your e-mails. It has been a whirlwind of a visit to NYC and back, though all your messages do not take our pain away, your support means the world to us. As we were driving home today, we received a call from Catherine Silver. Catherine is our nurse case manager. She called to talk with me about Mattie's MRI tomorrow. She acknowledged reading our blog and understood how difficult our trip to NY was. I told her, I am happy to be coming back to DC, but that I really don't feel good anywhere. She heard me, and then said, Georgetown wants to help us in any way possible, and she welcomed us home and said she would see me soon. After my day at Sloan, these simple words from Catherine were like being resuscitated with CPR. I end tonight with a thought from my mother-in-law, Barbara. Barbara wrote to me tonight as she does every day, and said if she could take Mattie's place she would. Though I wouldn't wish Mattie's disease on anyone, I am beginning to understand that Mattie's story affects all of us deeply. Thank you all for walking this scary, frightening, and at times amazing path with us.

Wednesday, October 1, 2008

Wednesday, October 1, 2008

I have to start out by saying that Mattie is such a good sport. He literally spent his exciting "road trip" in a hospital the entire time. We arrived at Sloan Kettering today at 9:45am and did not leave the building until after 5pm. Mattie amazes me, because he does get impatient at times, but for the most part puts up with all of this far better than I do. Where he finds the courage and the strength for this is beyond me, but maybe that is the beauty of being six and not completely aware of the ramifications of things. I will try to recount this day for you, but I will let you know that these consultations left Peter and I feeling very depressed, and though we realized the seriousness of Mattie situation before today, there is something about today that was a real wake up call for us. A wake up call that Mattie has a finite time with us, and the bigger question becomes how do we want to play out his remaining years.

Our 10am appointment was with Dr. Paul Meyers. Dr. Meyers is the Vice Chair, Academic Affairs, Department of Pediatrics. Mattie was quickly examined and then spent the rest of the appointment with my parents while Peter and I spoke to the doctor for over an hour. Dr. Meyers talked in detail about three things: 1) the origin of Mattie's cancer, though unknown, he gave us a plausible theory, 2) alternative treatments to surgery, and 3) discussed an experimental drug called MTP-PE, which can only be administered (at least the first couple of doses) at Sloan or MD Anderson in Texas. Dr. Meyers highly recommends that we consider MTP-PE, but at the moment the drug company (IDM Pharma) will not allow this to be administered to new patients for another 5 weeks because of manufacturing issues with the filters, which help to form the drug. L-MTP-PE stimulates the innate immune system, or the body's first line of defense, to kill tumor cells, and based on data from clinical studies, when used in combination with surgery and chemotherapy, L-MTP-PE reduces the risk of recurrence of osteosarcoma and improves long term survival (of course we are not sure this data applies to children with multifocal osteosarcoma). Dr. Meyers had some major concerns about Mattie's quality of life if we indeed proceed with three protheses (both arms and leg). Dr. Meyers encouraged us to talk with Dr. Healey today about alternatives to surgery. But I could clearly see that Dr. Meyers felt that Mattie's situation was very serious and somewhat grave. In a nutshell the problem is from Dr. Meyers' perspective he couldn't recall a child with multifocal osteosarcoma who did not get recurrent cancer. This was a major blow to Peter and I. Mainly because we could help Mattie through this major crisis, which involves debilitating chemotherapy and life altering surgeries, but to hear that this cancer will happen again (who knows at what time frame), and that with each recurrent cancer, a child's body becomes more resistent to chemotherapy was too much for us to take.

After this appointment, we met up with Mattie and my parents. We took a picture of Mattie in front of the big apple outside the Sloan Kettering child play room (which is a misnomer, since the room is enormous, but Mattie refused to go in, probably because it was sensory overload for him). My mom found this special FAO Schwarz bag for him that you can see in the picture. He loved the bag and was using it to carry his toys around with him in the hospital. We had lunch at the hospital and then arrived on time for Dr. Healey's appointment at 2pm.

Dr. Healey is the Vice Chair, Conferences and Education, Department of Surgery; Chief, Orthopaedic Service. People had warned us about Dr. Healey. He devotes a lot of time to each of his patients, so we were prepared that the 2pm appointment time, wasn't actually going to take place at 2pm. However, what we did not factor into the equation today, was Dr. Healey had to be in NJ by 4pm. So what in essence happened was that our appointment was rushed. I did not feel that Dr. Meyers and Dr. Healey had talked with each other before hand about Mattie's case, and therefore at times Peter and I got conflicting opinions from them.

Before I continue with the story, I took a picture of Mattie and Peter while waiting for Dr. Healey. You have to understand that they put us in a holding room (just the three of us) for two hours, while we were awaiting the doctor. We played every possible game with Mattie, and he was climbing the walls. At 3:50pm, the doctor walks in, and pulls up a chair and starts to talk about these very serious issues in front of Mattie. Peter stopped the conversation after about 10 minutes so that we could have Mattie leave the room and wait with my parents outside. What I want to convey to you is the fact that Dr. Healey seemed visably disturbed about Mattie's case. He sincerely said to us, "I don't know how both of you are doing this." Peter and I read him differently, but I felt as if he came into the room with the resolve that there wasn't much that could be done for Mattie. That his fate isn't a positive one, and instead of doing more radical approaches (three prothestics), he is encouraging us to talk with a radiation oncologist. He feels if Mattie has three protheses, this will limit his ability to lead an active lifestyle in the short time we have with him. In addition he was VERY concerned about infection rates. He said with each major surgery, Mattie has the chance of complications and infection, that could prevent him from getting back on chemo in a timely fashion. Which Peter and I understand is vital considering Mattie's presentation of cancer. So Dr. Healey is recommending radiation in the left arm, and if the tumor grows back again, then we always have the option to do a prothestic at a later date. He is in agreement though that Mattie needs a prosthetic in the right arm and leg. There seemed like so many questions we wanted to ask, but Dr. Healey had to go, so he shook our hands and left for the day. After our appointment, we had a visit in the same room from Dr. Melinda Merchant. Melinda is actually a good friend of Artie (a friend of ours). Melinda was kind enough to stop by, chat with us, and answer many of our questions. She even walked us out of the hospital and later e-mailed saying she would help us in any way possible. Thank you Artie for this wonderful contact!

In the midst of all of this, my dear friend, Karen, met us at the hospital. She waited with my parents, helped entertain Mattie, and stayed the rest of the evening with us. Karen is a true friend and would drop anything in a flash to help us. I have known Karen since 6th grade, and our friendship has withstood the test of time.

After this horrible day, I was disillusioned, and basically wanted to curl up in a ball and not deal with the outside world. But our former neighbors, Goli and John, invited us over for dinner. Mattie's one request about going to NY was seeing Goli and John, and we were looking forward to connecting with them. So Peter, Karen, Mattie, and myself jumped into a taxi and met up with John and Goli. Thank you John and Goli for a fabulous buffet of foods. You really spoiled us and it was wonderful to be able to chat and reconnect. Below you will see some pictures from our lovely evening out.

Karen, Mattie, and Goli

John, Mattie, and Goli

Vicki, Mattie, and Karen

Goli, Vicki, Mattie, Peter, and John

I sign off tonight with two thoughts. I think I had high expectations for Sloan Kettering. I was hoping they would have some alternatives to present to us. Maybe some sort of magic pill to take this all away. Kind of like when you put someone falsely up upon a pedistal. It isn't realistic of course, and I had this painful reality lesson today. The last thought is we plan on making Mattie's day tomorrow a happy one, since his only experience in NYC so far has been within the walls of Sloan Kettering. We will head back to DC late tomorrow since we have our first MRI scan on friday at Georgetown Hospital.

Tuesday, September 30, 2008

Tuesday, September 30, 2008

We had a slow start to the morning. Mattie did not wake up until 10:15am. Then we started to pack and get ready for the journey ahead. Packing for a child is complicated enough, but when the child also has cancer, the complexity of the packing job goes up by a factor of 10. I was worn out just figuring out what medications I had to take with me, and which ones needed to be transported in a cooler. But by 1:30pm, we were finally out the door, and to some extent we were excited just to be leaving DC. But as we were driving on the NJ Turnpike, Peter got a call on his cell phone. It was Dr. Myers checking in and asking how Mattie was feeling. At first, I thought, how lovely, the doctor is calling because he is concerned about Mattie and his well being. But when Dr. Myers asked Peter for the third time how Mattie was feeling and where we were, Peter said, "why are you asking me all these questions?" Well in a nutshell, you may recall that Mattie had an allergic reaction to the platelet transfusion yesterday. It turns out that the Georgetown blood lab and the American Red Cross determined that the platelets that were given to Mattie were tainted with a bacteria. So Dr. Myers wanted us to check into Sloan as soon as we got to NY to get a bacterial culture of Mattie's blood, as well as IV antibiotics. Since most of you have been following this journey with us, you can imagine how disillusioned Peter and I feel right now. Mattie immediately said, we are on a road trip, we are NOT going to the hospital tonight. Peter and I range in reactions from being mad, angry, and sad. As I expressed in prior blogs, I do not like blood/platelet transfusions, and this is exactly why I don't like them! Nothing is 100% safe with a blood transfusion. Mattie is sick enough, and why expose him to these other outside threats?! But as I said to the resident yesterday who came in to ask for my informed consent for the platelet transfusion.... What other choice do I have?!

In between our complete anger over all of this, we had moments of laughter in the car. Peter drives like a typical Bostonian, or NY cab driver. Being in NYC, only highlights his abilities. So he was flying over potholes, and my mom, Mattie, and I were in the back screaming and laughing at the same time. To top it off, the music we were playing in the background was the perfect backdrop for our city driving experience. I am happy to report that we are in NYC in one piece, but I am writing this from the Urgent Care Center at Sloan Kettering. I realize we are not in Kansas anymore. Peter and I drove up to the hospital, and we couldn't even figure out where to park. So we landed up at NY Presbyterian Hospital's parking area. Mattie was examined, and his vitals are fine. He had his blood drawn, and his counts look good except for low magnesium and potatsium. Mattie is currently getting an infusion of antibiotics. So apparently fun and a break are not in our future!

Before we left our home today, Mattie had the joy of opening some packages he received in the mail. The first package was from the Gelhoff's. Matt Gelhoff is Mattie's music teacher, and his family sent Mattie some wonderful Scooby Doo stickers (which will be added to the haunted house he is building at the hospital), and a fantastic Scooby Doo 3-D board game (which looks like a lot of fun!). However, the real treat in this package, was a special music CD Mr. G made just for Mattie. The first CD had Mr. G narrating what Mattie was about to hear. Mr. G's voice sounded so professional, like someone you would hear over the radio. It was a fabulous introduction to the music we were about to hear. We listened to this special CD through the entire car trip up. It was a wonderful variety of music and Mattie really enjoyed this special gift. The second package Mattie opened was from Cohort 12 at the GW Alexandria Campus. These are a special group of students, and they really spoiled us with gift cards from Dunkin Donuts, Target, and massages. Mattie also loved the paint and floam. What can you say about such a giving, caring, and thoughtful group of students (who have recently graduated)? Other than I am proud of all of you and I know you will be great counselors. Your gift means a great deal to all of us, and thank you for giving us an opportunity to have such a special treat. The third package we opened was actually for me. Thank you Ellen for the wonderful shoes. They will be coming with me to the hospital. I love them.


On the electronic front, thank you Charlotte, Kim, Karen, and Susan for the wonderful e-cards and videos, and Jacky and Grammie for the great e-mails. I sign off for tonight, and reflect at an amazing six year old, who sat through over a four hour car trip patiently, and then instead of being able to have fun tonight, is back in a hospital this evening. He isn't pouting or acting sad (like I would be doing!), he is building legos and chatting with the doctors and nurses. An amazing fellow indeed!

Monday, September 29, 2008

Monday, September 29, 2008

Mattie started off the day on a happy note. Miki, Mattie's nurse, told me that his ANC was 520. It is amazing how an absolute neutrophil count can jump from 32 yesterday, to 520 today. But I am not complaining. We were very excited because we knew it meant that he could go home. However, the next shoe dropped. We learned that Mattie's platelet count was low, at 24. At a count of 20, Mattie would be required to have a platelet transfusion. Because the doctors knew Mattie was scheduled to go on a road trip on tuesday, they did not want to take any chances, and decided to give him a transfusion. My favorite topic, transfusions! It seems like we can't get out of the hospital lately without a transfusion.

Our family friend, Margaret was visiting us this morning while all of this was going on. Margaret was Mattie's first preschool teacher at RCC. Margaret arrived bearing gifts. She brought Mattie a beautiful pumpkin that she picked on her trip to NY. She also brought Mattie some fabulous books, a tasty pretzel, and a great CD of pictures taken from Mattie's recent outting to the RCC playground. Margaret had the opportunity to meet Jenny. Jenny came up to the PICU with a fabulous art project. Jenny always has a way of coming up with a project that captures Mattie's attention. Jenny helped Mattie create his own pumpkin out of tin foil, tissue paper, and glue. By the time they were finished, it looked like they made a paper mache pumpkin. It was a great project, and much easier and less time consuming in comparison to paper mache. This pumpkin seemed very happy next to Margaret's pumpkin! Before Jenny left, she also helped Mattie start the building of a haunted house out of packing boxes. I never knew how versatile packing boxes could be. Mattie left the haunted house at the hospital, with the plan on working on it next week.

After Jenny left, Margaret played with Mattie. They kept adding to the haunted house, and then they did some Highlight's hidden pictures together. Margaret and I had lunch together, while Mattie took a computer break. Mattie is now very focused on the computer. Thank you Mary! While Margaret and I were eating and chatting, we were observing Mattie and watching the platelet transfusion taking place. To our amazement, a bag of platelets looks like apple cider, not a blood product color. Mattie received 3/4 of the bag of platelets, when Margaret and I noticed Mattie was itching. It went from light itching, to intense itching. Margaret then said she noticed Mattie looked red. I literally jumped out of my chair. Margaret and I observed Mattie turning red like a lobster, and developing huge welts on his body, running from his head to his toes. Some of the welts were walnut sized. Margaret sat with Mattie, while I ran to get the doctor. Thanks to one of the resident's we know, Dr. Jung, she handled this smoothly and effectively. She got Dr. Myers and about three other residents. The room was stuffed with people. Mind you Mattie was still sitting on Margaret's lap with his tubes wrapped all around her. Margaret handled all of this very calmly, which wasn't easy to do, since Mattie was sitting on her, and we were all staring at Mattie. While staring at Mattie, I could observe his nose and lips turning white, and then he literally looked like he passed out. He was still answering questions and so forth, but it was frightening to see him energized one second and then practically sleeping in the next second. Dr. Myers had an intensivist come in too, to confirm his assessment on what to do. They both decided to give Mattie Solumedrol (a steroid) and Atarax (an anti-histamine). While this was being administered we were watching him like a hawk. My parents came into Mattie's room mid-allergic reaction, and they were just as perplexed as Margaret and I. But we all clearly were on the same page, we were hoping for the medicine to help stop the blood reaction. One thing is for certain, Mattie is clearly sensitive to certain things, such as benedryl, low dosages of Ativan, and now platelet transfusions. I was impressed though with how Dr. Myers handled all of this, and was super attentive until the crisis was over. It is funny, I spoke to Ann today and also bumped into Dr. Cantor (a resident) and they both said basically the same thing. Nothing about Mattie is boring or typical! The day was too calm, and we needed to shake some excitement into it. Needless to say, I am ready for a boring day! Bring it on.

Mattie and I appreciated Margaret's visit. They have such a great rapport with each other, and this was most evident when Mattie was going through his blood reaction and was curled up on Margaret's lap. Fortunately, Mattie slowly started to feel better as the medicines kicked in. Then within an hour, he was back up, and somewhat energized. Mattie had a visit from Kathie, his OT. Kathie brought us a wonderful dinner (which I was eating while walking the halls of the hospital, thanks for the fabulous olives!), and a fantastic book about identifying objects in each picture which do not belong. Mattie found this book fascinating, and he got engaged and playful with it. After this, he and Kathie went for a walk in the hallways, until they bumped into Linda and a volunteer musician. While Mattie and Kathie were together, I started packing up our room. I feel like I live my life out of a suitcase sometimes. Thank you Kathie for the visit, the wonderful books, and the garden stone. We can't wait to create it!

It is a pleasure to be home tonight. Of course we can't get too comfortable because we are on the road to NY tomorrow. I have to give packing great thought, since I have a ton of medications to take for Mattie. In addition, I noticed that tonight he looks white as a ghost. It is that sickly white, that I haven't noticed before, but something I will keep an eye on.

We received two other special gifts today. One came from Ignacio at Voxiva Peru. Ignacio wrote a beautiful letter to us, in which he described a time when he was a child and was very sick. His Doctor introduced him to the game of chess to occupy his time and Ignacio fell in love with the game. Ignacio looks upon the time he learned chess very positively and wanted to share this special game with Mattie. Ignacio sent Mattie a beautiful hand carved chess set, and we will reflect on Ignacio's beautiful story, everytime we play the game. The second gift, is we had a visit today from Dr. Toretsky. Dr. Toretsky brought us some homemade ruggala, which he made with his daughters. Apparently Mattie thought this was the best medicine, because he demolished a whole cookie. It was wonderful to see Mattie eat something and actually enjoy it.

On the electronic front, thank you Kim, Charlotte, Emily W. (Happy Smile Week), Karen (Happy Pumpkin Day), and Susan for your wonderful e-cards, and JJ, Barbsie, and Wayne H. for your e-mails. Keep us in your thoughts as we pack up and head to NY on tuesday.

Sunday, September 28, 2008

Sunday, September 28, 2008

I had the good fortune of sleeping at home on saturday night. Peter has taken Dr. Toretsky's prescription to a whole new level. It has been glorious to be sleeping in peace, friday, saturday, and sunday nights. At first I felt guilty, but then my practical side took over and I realized if I don't take a break, I will be unable to function well. I also bumped into one of my favorite residents yesterday, Dr. Cantor. I am very fond of Dr. Cantor because she is one of the first residents we met, and she helped us through Mattie's first round of chemo. You don't forget a person like that. Dr. Cantor is expecting a baby in three months, and we are enjoying sharing this special moment with her. Amazing how you begin to share the joys and ups and downs with the hospital staff. In anycase, I bumped into Dr. Cantor yesterday, and she told me I looked tired. When I told her I was planning on spending another night at home, she thought that was a fabulous idea, and since Mattie wasn't undergoing chemo, she seemed to think taking care of me was a necessity. As a mom, it is not easy to let go and to leave the hospital, and by doing this I really get a sense for what Peter must be feeling when he leaves to go to work during the week. Your body may not be at the hospital, but your mind and heart are!

Mattie's Absolute Neutrophil Count today was 33. Yesterday it was 35. So it has not changed much, and we need it to be at least 250 in order to be released from the hospital. So we wait. The irony is, for a little boy with a depletion of neutrophils (most common type of white blood cell, and are the first immune cells to arrive at a site of infection), he has an inordinate amount of energy. I was talking with a senior hem/onc nurse today, Kathy. I asked in her experience if most children with an ANC of 33 or below land up in the hospital with a fever (like Mattie). Her response was yes! However, she said the difference is that most children would be lethargic, tired, and not feeling well. Mattie is usually like that for one day, but then has a lot of energy thereafter. In fact, if you saw him, you most likely would think nothing is wrong with him. Mattie knows that his NY trip is coming up. He is very excited about this adventure since he has never been to NYC. However, if his counts aren't high enough, he isn't going anywhere. Peter and I haven't told him yet that perhaps we will be going without him. Monday should be an interesting day in terms of making this decision.

Today, was a very busy and fun day for Mattie. His first visitor was Ms. Mary Dressendorfer. Mary is Mattie's technology teacher at SSSAS. Mattie always loved his technology class and would come home last year, with these fabulous computer creations. Mary contacted me and told me she is willing to work with Mattie this year, and would like to bring him up to speed with the technology curriculum for the first grade. This was an amazingly generous and kind offer, since she is doing this on her own time, and refuses to be compensated for this. I had the pleasure of chatting with Mary today, and it turns out she is VERY familiar with Georgetown Hospital, since her mother was a three time cancer survivor. I continue to be in awe with how cancer survivors/patients and their families instanteously bond with each other. Mary brought an ibook with her, a type of Mac computer. What I found fascinating to watch is that Mattie knew exactly how to use the Mac (since we are a PC family) and how to use a particular program called KidPix. Mattie had a great time working with Mary, and Mary gave Peter and I the opportunity to leave the room for a while and have a change of scenery together. Before Mary left today, she let Mattie know that he could keep the ibook this week. That was very exciting news, and I am happy to report, that the computer is keeping him VERY busy. I think he likes the idea of having his own computer, and especially something familiar from SSSAS. Below you will see a picture of Mattie with Mary as well as a creation he designed on the computer using KidPix. Mattie entitled this creation, "Mattie's laboratory!"

Thanks Mary for sharing your skills and time with us today. The computer and the donut were major hits!

Mattie's second visitor today was Coach Dave. Coach Dave let Mattie know that the Saints Football team won the homecoming game. This was exciting news! Peter and I are so impressed by Dave. He truly cares about Mattie, and we are enjoying the opportunity to get to know more about him. Dave is very familiar with the Georgetown campus, since he was the university's football coach for many years, before coming to SSSAS. Dave brought a DVD of last week's Saints football game for Mattie to watch. In addition, Dave's daughter, Sarah, picked up a cute Saints panda bear for Mattie at homecoming, and it now sits proudly on his bed. Thank you for all the wonderful gifts, your love for Mattie, and your generosity of time! Below is a picture of Mattie with Coach Dave.

I also want to acknowledge Leslie Williams and Larry Jenney (Mattie's kindergarden teachers) for the wonderful DVD they created from Mattie's carwash fundraiser. We are enjoying it very much, and Mattie almost feels like he was at the event. It captures the spirit and energy of the day. Thank you so much for this precious gift. Mattie definitely enjoyed seeing the dogs and the classic car that came to the carwash. Glad you captured it Leslie!

Peter and I had the wonderful opportunity to go out to lunch together again today. Thanks Mommy and Daddy for playing with Mattie this afternoon, so that we could escape the hospital scene for several hours. These times away are so needed, and I find that Mattie enjoys his one on one time with his grandparents without us present. When Peter and I came back, Mattie had all his bugbots and windup animals (thanks John!) out on the floor doing all sorts of creative moves!

I received a lovely e-mail today from Susie Saadat. I have only met Susie once before the carwash fundraiser. Susie is a dear friend of our former neighbor, Goli. You may recall from a previous e-mail that I mentioned Goli no longer lives in DC, but moved to NYC. I know that Goli wishes she lived closer so she could do more for us. But Goli contacted her good friend, Susie when she learned about Mattie's cancer. Susie immediately went into action and has been supporting us in so many ways. Today Susie let me know that she has collected $2800 from friends, neighbors, and family in support of Mattie. I am not sure how we can ever thank Susie and Goli, but their kindness, generosity, and love for a six year old boy and his family will never be forgotten. All the money we collect for Mattie will be going to his treatment, plans for his future, and for osteosarcoma research. Not that I think we need to say this, because all of you have been so generous and are not even giving it a second thought about what Peter and I are doing with this money, but Peter and I feel better that you know, we are not using any fundraiser money to help finance our trip to NYC, or any other expenses that are not directly related to Mattie's health and future. In fact, we have asked Alison McSlarrow to help us oversee Mattie's account, and we feel a third party evaluating this fund is a very good idea.

Over the past several weeks, I have gotten to know Maria Hammann. Maria is the mom of Teresa, an osteosarcoma survivor and also a patient of Dr. Toretsky's. Maria and I have very similar outlooks and perspectives on things, and I consider myself very fortunate to have her supporting me. She e-mails often and even took Teresa up to Mattie's PICU room once to play with him. He thoroughly enjoyed her company. The ironic part is I haven't known Maria very long. But when I saw her a few weeks ago at the clinic in fear that Teresa's cancer reoccurred, I couldn't get over how this affected me. I was worried about Teresa all day and couldn't wait to hear what the tests revealed. Fortunately Teresa is fine, but the fear of what the future holds is a very real threat for cancer survivors and their families. I look at Teresa and see the picture of health. She has survived a horrible ordeal and battle, but she has come out shinning. She is the picture of hope for me, and when I thought she had a reoccurence of osteosarcoma, my heart dropped and felt heavy. Maria has helped normalize this ordeal for me on many occasions, and has even helped me put the trip to NYC in perspective, since she met with the same surgeon a while back. It is hard to know why Cancer has come into our lives, but one thing is for certain, God has helped us by introducing us to such special people like Maria.

Tonight we had a visit from Olivia Kane, a SSSAS mom. Olivia is a dear person who lights up the room when she walks in. Thank you Olivia for always reading the blog and for contacting Jim on our behalf. We thoroughly enjoyed your stew and salad, and the apple cider and cookies were a real treat. I am not an Autumn person, but I love fall foods. Tonight's dinner was very special and I look forward to designing card structures with Mattie tomorrow.

On the electronic front, thank you Kim, Emily W., Susan S., Karen, Charlotte, and Margaret for the wonderful e-cards, and Wayne H. (for your lovely prayer) and Barbsie for your e-mails. I also want to thank my cousins Maureen and Philip for the special healing gift from the League of Saint Anthony. Mattie will be remembered daily in masses and prayers of the Capuchin Community and students of Saint Lawrence Seminary. Thank you for these daily prayers and as some of you may know, people pray to Saint Anthony when seeking the return of a lost object or entrusting someone ill or in trouble to his care.

I leave you tonight with two e-mails I received today. The first one comes from my friend in Boston, Jen. Jen and I went to graduate school together at Boston College and the second e-mail comes from my lifelong friend, Karen, in NYC. Thank you Jen and Karen for your thoughts and messages of support! I share these messages with you, not only because they cheer me up and empower me through these difficult times, but I think it is meaningful to read what others write about this situation and to hear about this situation through their lens and perspective.

Jen says, "I believe your story is teaching people so many life lessons; everytime I read Mattie's blog I feel like I am receiving an education in medicine, religion, and philosophy - especially as it concerns the power of love. "

Karen sent me an e-card today which said: "Gold Star Mother’s day… Makes me proud of you…. cause you have all that it takes…. To be the chosen one…Grits, guts, and a great heart!"