Mattie Miracle 10th Anniversary Walk was an $119,000 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

September 27, 2008

Saturday, September 27, 2008

Saturday, September 27, 2008

It was a sheer pleasure to wake up today without hearing hospital sounds or anything else for that matter. It was peaceful at home. I told Peter he gave me a great gift last night, of a good night of sleep (since he stayed with Mattie alone at the hospital). It was also a joy to be able to get showered and dressed without stopping every two minutes to meet someone else's demands. One thing is for certain though, I knew I was tired, but now that I have stopped the hectic pace for one day, I can see just how debilitating all of this really is. My head, body, and stomach ache. The body is an amazing structure. While undergoing intense stress, our ultimate goal and focus is to survive the stressor. We devote all our resources to the stressor, but once we remove ourselves from this stressor, then we start to take a breath and truly feel and experience the impact all this stress has had on us. This is where I am at today.

I was able to fill Dr. Toretsky's second prescription today. If you recall, Mattie's doctor gave me two prescriptions: 1) for a good night's sleep, and 2) for a meal and conversation with Peter. Well I got the night of sleep (thanks Peter!), and thanks to Alison and my parents, we were able to leave the hospital for four hours today. We went out to lunch and chatted with each other. Actually Alison came up with this idea long before such a plan was prescribed for me. Alison (Paul's mom, one of Mattie's kindergarten buddies) and I haven't known each other very long, but Mattie's illness has brought us closer together and through this experience our friendship is growing. I am grateful for this opportunity to get to know Alison and this gets back to my previous night's blog posting in which I mentioned that having to slow down my pace because of Mattie's illness, has enabled me to experience others around me in a more meaningful way. Mattie enjoyed his time with Alison, and he told me all about their imaginative game they played with a motorized knex car (thanks Denise!) which was being attacked by bugbots (thanks Charles!). Thank you Alison for the gift of your time and energy. These are priceless.

Mattie was visited today by Dr. Synder. Dr. Synder is one of the doctors in the pediatric hem/onc practice at Georgetown. Dr. Synder told us that Mattie's 24 hour bacterial culture was negative (a good thing) and that his absolute neutrophil count (ANC) was 33. Mind you his count must be 250 or higher to be released from the hospital. The absolute neutrophil count is the real number of white blood cells (WBCs) that are neutrophils. Neutrophils are key components in the system of defense against infection. An absence or scarcity of neutrophils (a condition called neutropenia) makes a person vulnerable to infection. After chemotherapy the ANC is usually depressed and then slowly rises, reflecting the fact that the bone marrow is recovering and new blood cells are beginning to grow and mature. As of today, Mattie continues to be severely neutropenic. But he does not have a fever, and his energy level is climbing. Because he is severely neutropenic, all playdates have been cancelled. This is an aspect of the disease that is truly difficult for Mattie since he is a very social fellow. Dr. Synder discussed with us what the next couple of days could look like for Mattie, and also the possibility that Mattie's counts may not be high enough to be released from the hospital on tuesday for us to head to Sloan Kettering. So we will just wait and see.

The other development today is that we suspect Mattie may have the start of mucositis or a sore in his throat. Mucositis occurs when cancer treatments break down the rapidly dividing epithelial cells which line the GI tract, particularly in the oral cavity, leaving the mucosal tissue open to ulceration and infection. Mucositis can occur anywhere along the digestive tract. Oral mucositis is probably the most common, debilitating complication of chemotherapy. Peter and I have tried hard to convince Mattie to eat and drink today, and to take a lozenge medication to prevent mucositis. In addition, Mattie has to occasionally take bactrum to prevent pneumonia. Needless to say, Peter and I were unsuccessful with getting Mattie to take the lozenge and the bactrum. But in walks Tricia, Mattie's nurse. She was able to work with Mattie and got him to take both medications. We were thrilled! Tricia rationalized with Mattie and really believed he could do it, and Mattie rose to the occasion. Though Tricia is pretty sure that her trick will only work for today, because by tomorrow, he will be onto us, and will not want to take the medication in applesauce. None the less, Tricia is one of the nurses who makes this whole nightmare more bearable.

In fact, the nurses are becoming part of our family. Peter and I tonight had the pleasure of talking with Tricia and Erin. We are getting to know more about them, and both Tricia and Erin have brought in pictures of their puppies to show us. This aspect of closeness is like no other I have ever experienced with the medical profession. We realize the nurses work very hard, and when we can, we like to acknowledge them. Peter and I brought in a treat for the nurses in the PICU tonight. We left the treat with Erin, and then five minutes later we had a knock on our door, and in walked three nurses who thanked us for thinking of them. What I am trying to get out here is that walking into C52 (the PICU) is like walking into our home away from home. It is a special place, because of the attitude and care of the nurses.

On the electronic front, thank you Kim, Lorraine, Susan S., and Karen (Happy Honey Month!) for the great e-cards, and Coach Dave, Barbsie, and Susan C. (thanks for the prayers from your school) for the wonderful e-mails. I will close tonight with a special thank you to Team Mattie. We received in the mail a huge Mrs. Fields cookie that was decorated on the front with the words, "welcome home." Thank you for thinking of us and for celebrating the fact that Mattie completed his second round of Doxorubicin and Cisplatin!

September 26, 2008

Friday, September 26, 2008

Friday, September 26, 2008

Mattie slept better last night. Was up and down a couple of times, but in comparison to previous nights, last night was a blessing. Well until 7am that is! At 7am, Peter was about to walk out the door to work, and Mattie started stirring and complained he was hot. So before Peter left for work, I asked him to take Mattie's temperature. Sure enough, Mattie was running an 101.8 fever. Mattie is becoming quite good at ascertaining how he is feeling and assessing his situation. Peter immediatedly called the on call hem/onc doctor and Dr. Myers let Peter know that we should bring Mattie right in and that there would be a room awaiting him in the PICU. So Peter and I mobilized into action. I must commend Peter because his mobile packing units he created for the hospital, are working beautifully for us. Needless to say, I never unpack our overnight bag that comes with us to the hospital. It is always ready and waiting for us at home, for moments just like this. Mattie was not happy about the prospect of going back to the hospital today. But a part of him understood that it wasn't a choice.

We got to the hospital today and Mattie and I checked into the PICU. There was only one hem/onc nurse, Tricia, in the unit, and she was unable to be assigned to Mattie, since she had other kids who were undergoing chemo and needed her attention. So Mattie was assigned instead to a PICU nurse. Though these nurses are wonderful in their own right, I could clearly see that Mattie would be better off with a hem/onc nurse. Well you know me, I am not shy or quiet, at least when it comes to Mattie. So I aired my dissatisfaction with this. Later on in the morning, one of the nursing supervisors came in to apologize to me, and told me he pulled a hem/onc nurse from another unit to come work with Mattie. Certainly he did not need to do this, but this speaks to the responsiveness of the nursing care at Georgetown. They truly listen to our needs, I felt better to see that Kathleen, a wonderful hem/onc nurse, was on the scene and working with Mattie.

At around 11:30am, Linda arrived to play with Mattie. But Mattie was sleeping. However, Linda gave me a lovely gift. She watched Mattie for two hours, while I went out of the room with Ann to have tea and some of Ann's delicious banana bread. I should let you know, that today was going to be "my day." A day I was looking forward to. To get out of the house and my routine, and meet a special friend for lunch and conversation. While I was going to be out, Mattie was going to play with his buddy, Ann, have an art lesson from Ms. Pollak (Mattie's art teacher and major Mattie supporter), and finally his buddy, Charlotte was coming over after school. So it seemed like all the stars and planets had aligned today so I could get out of the house. To say I was disappointed that Mattie was sent back to the hospital today is an understandment, and I while riding in the car to the hospital this morning I was about to comment on my feelings, but then I thought about what I was going to say and realized it would probably be hurtful to Mattie. So I kept my thoughts to myself. After all, he did not want to be in the hospital either or sick for that matter.

Having tea with Ann today was very special. Ann and I are what I would call busy moms. We always get involved in as much as possible, and in the process are running 100MPH. But with Mattie's illness, I am forced to slow down, and I am learning by slowing down I am getting the opportunity to cultivate some wonderful friendships. Ann is one of these relationships that I am referring to. As busy moms, Ann and I really never had the chance to connect like we do now. I try to thank Ann frequently for all that she is doing for us as Team Mattie Coordinator. But if you know Ann, then you know her response to me, is, "no thank you is necessary." I told Ann that I continue to be amazed by her passion and commitment to help Mattie and my family. I certainly can understand a family member stepping up to do this, but what explains a friend devoting her time, love, and energy to help us? Ann has her own family, she is the caregiver to her parents, and she just lost her brother to cancer. Yet, despite all the things she manages, she finds the incredible energy to help us and to motivate those around us to be a part of Team Mattie over the long haul. What Ann is doing is such a selfless act, and when I asked her what keeps her motivated to help us, her response is that it is "the right thing to do." Ann told me I would probably do the same thing if the issue came up. I had to think about that, but one thing is certain when I have my down days, Ann is always there e-mailing or calling and checking in with us. I just couldn't let this opportunity pass without saying thank you Ann!. Ann also helped me today examine Mattie's surgery from a different viewpoint. In her perspective, surgery is a great thing, in the sense that it carves out the cancer. The sooner it is removed from Mattie's body the better. Ann said the worst thing would be for a cancer to be inoperable. But with surgery, there is always hope that all of it will be caught and removed. I must admit I have been too absorbed on the physical consequences to Mattie, that I did not really focus on the bigger picture. The big picture of course is survival, and this positive reframing today, made a big impression on me.

Thank you Ann for the dissolvable egg that turns into a toy snake. All the nurses are awaiting Mattie's snake arrival. Mattie was intrigued by the donuts, but still wouldn't eat anything for us today. Dr. Toretsky told me that Mattie was quite dehydrated when he entered the hospital today. Again, that doesn't surprise me since Mattie is basically not eating or drinking.

Ann dropped off a surprise package today for Mattie at the hospital. She told me that the gift giver wanted to remain anonymous. But I worked hard to get the name out of Ann. Thank you A.M. for all the wonderful gifts you sent along to Mattie. It really cheered him up today. We spent a great deal of time opening up and playing with each gift! The blue angel model was a major hit along with the wind up plane. Thanks for your generosity!

Thank you Denise for a wonderful dinner too. Everything was delicious, and Mattie's eyes lit up when he saw all those wonderful treats. The knex car was fantastic and kept him VERY busy tonight. Thanks for thinking of me too with the aroma therapy!

On the electronic front, thank you JJ for your e-mail and Kim, Lorraine, Karen (Happy Biscuit month), and Susan for your wonderful e-cards. Mattie received an e-mail today from a complete stranger. Thank you Jueon from Holy Fire EM church in Alexandria for your lovely e-mail. I am sharing a portion of the e-mail, because I am moved to hear how Mattie's story is impacting an individual we do not even know. "I will say Mattie is born with a special purpose. He is born to be a light and salt to this dark world. A life that is bright and impactful that can challenge and break many other lives, including mine. Only God knows how long this light may shine and how long this salt may be influential... It maybe be for a very long time, or for short time, I can't tell. But I must admit, my 22 years of life is not as bright as or as salty as Mattie's. I pray that this light may continue to shine and impact many more lives and I will also try to be someone who is worthy of seeing such a light. Christ has a way of bringing us all together in His brightness and I see a glimpse of His light through this precious young fine boy. I must say I am humbled and thankful that you guys are continuing to struggle and not giving up. Thank you so much. My church members and I will continue to pray for Mattie and you guys."

I am writing this blog from home tonight. Peter is staying with Mattie at the hospital. He sent me home in order to fulfill Dr. Toretsky's first prescription. This is my first night away from Mattie while he is at the hospital. At first I did not want to go, but I realize I am very tired and run down, and need this break. I am looking forward to a full night of sleep! I end tonight with a fun article I found called Six-Figure Moms. If you are a mom and reading this, then I have no doubt there are times when you wonder....gee, how much would the services I provide at home be worth outside in the market place? Well the answer is you are entitled to a six figure salary! After all, think about this....in a given day, you serve as your child's teacher, advocate, healthcare provider, ombudsman, psychologist, housekeeper, valet, cook, coach, chauffer, etc. We live in a society where being a full time mom isn't valued and actually at times questionned. I have worked with many women over the years who are embarrassed to say they are moms (and do not work outside the home), but in all reality raising a child may be one of the toughest yet most commendable jobs out there. To make a difference in the life of a child is powerful, and has long lasting ramifications for the child and our society's future. I know the fact that I was a full time mom, who worked part-time, has enabled me to step into the role of Mattie's nurse and advocate very easily. Mattie and I knew each other very well, and we are used to spending long hours together. If you are a mom and reading this blog, then I hope you will acknowlegde what a profound job you are undertaking. It doesn't produce a monetary reward, but it has the opportunity to produce something even more meaningful. A happy, loved, appreciated, and a productive member of our society. You make a difference!

http://www.salary.com/personal/layoutscripts/psnl_articles.asp?tab=psn&cat=cat011&ser=ser032&part=par901

September 25, 2008

Thursday, September 25, 2008

Thursday, September 25, 2008

Mattie had another night of IV hydration on wednesday. However, thanks to Peter, he handled most of the up and down bathroom visits that Mattie made. I was just too tired to move. But with that said, I still felt like I pulled another all nighter last night. I am amazed how Peter can balance our home life and work. It is a special feat that goes beyond comprehension. To say this is hard on Peter and I is an understatement. It becomes a daily struggle for us to keep our heads above water on everything in our lives, such as taking care of ourselves physically and emotionally, and of course it is almost impossible to have a moment to connect as a couple and have a peaceful dinner or to just chat for even 15 undisturbed minutes.

I woke up before Mattie this morning and wanted to take a shower before the day got away from me. I told Mattie that I was going to be a few minutes and asked him if he had to use the bathroom or needed anything before heading to the shower. He answered, NO! When I left him he was resting in bed and was connected to an IV pole for hydration. First mistake!!! I have learned.... Never leave a six year old unattended with an IV connection. So while showering, I heard Mattie screaming for help. I stopped the shower, covered in shampoo and ran out with a towel wrapped around me. There in the hallway, I found Mattie holding his IV bag, without the pole, and blood flowing into the IV tubing. At first I panicked because I thought he pulled on his central line by his chest. But after taking a deep breath, I realized that because he moved around, and was probably struggling to get the IV bag off the pole, this caused some back flow of blood through the IV tubing. Fortunately I had seen this happen before in the hospital, and knew what to do. But to say I wasn't frightened at first would be a lie. Mattie was also besides himself and was crying hysterically. We were a pretty sight this morning!

Mattie and I spent the morning building legos and then had a nice visit from Judith Brusseau, the Director of Religious Education at Holy Trinity Church in Georgetown. Mattie was scheduled to start CCD classes this fall, but because of his medical condition is unable to. When Judith heard about Mattie's situation, she was eager to meet with us and help in any way she could. Judith is willing to work with Mattie on a CCD curriculum this year, and she came over today and shared some wonderful books with us. Unfortunately, Mattie was in a grumpy mood and did not really want to engage with Judith. Any parent can relate to this embarrassing moment, when your child isn't cooperating and somehow it is hard not to let this reflect poorly on one's self. But I know Judith understood that there are good and bad days, and Mattie was having a rough morning. Judith is a special lady, and she too has been touched by cancer. She lost her son at a very young age to cancer, and she clearly related deeply to our struggles. Despite cancer being such an awful and life altering disease, I find it amazing how it also can be a unifying and bonding experience. In fact, I have witnessed that I am able to bond with complete strangers over this issue. Judith gave us a special gift today, a book, entitled, Little Tree: A story for children with serious medical problems. This was a very inspiring book. The basic premise is a tree will always be a tree, despite losing limbs and leaves. Trees are beautiful through all their changes, because it is what is at the core that matters. A very powerful story especially for a little boy who has lost his hair and thinks he looks ugly and is embarrassed to go out in public without a hat. Thank you Judith for the lovely book and visit.

After Judith's visit, I administered G-CSF to Mattie. I have learned my lesson on this, because yesterday I tried to insert a syringe into a dextrose solution bag (since I need to flush Mattie's line with dextrose before giving him G-CSF). I guess in my tired state, the syringe slipped and went instead into my finger. Needless to say, I won't be making that mistake again any time soon. Mattie did fine through the administration and then we headed over to Georgetown to meet with Dr. Toretsky. Mattie had his blood work done today, and we learned he is again severely neutropenic (his Absolute Neutrophil Count is practically zero). However, having gone through this already, I wasn't as startled by this, but naturally I am concerned about this because Mattie is headed to New York on tuesday. In the midst of answering my concerns about Mattie, Dr. Toretsky also inquired about Peter and I. I think it looks abundantly clear that I haven't slept well in days. So Dr. Toretsky took out his prescription pad and wrote me two prescriptions. Not for any kind of medicine per se, but instead for: 1) "an evening out to include dinner and CONVERSATION" with Peter, and 2) "a good night of sleep, minimum of 8 hours." Dr. Toretsky has a good sense of humor, but there is a lot of truth in humor, and I was particularly moved that he would even be interested in how Peter and I were doing. But then again, if you don't take care of the caregivers, there will be no one to take care of the patient. While I was talking to Dr. Toretsky, Mattie was busy sculpting with clay. Below you will see a picture of his "big head" clay series, and a beautiful bowl he made with a butterfly in it.



Left: Big Head

Right: Bowl with a butterfly









After our visit to Georgetown, my parents and I took Mattie out for an early dinner, in hopes of getting him to eat something. Mind you when Mattie was at the clinic today, he was inspired to eat half a sandwich because Jenny and Jessie (the wonderful art therapists), were eating along side him. Now if I could only travel around with them, I would be all set. Not to my surprise, Mattie basically did not eat dinner. But it was nice to get out and eat something. Also over dinner, I had the pleasure to hear about the imaginative game Mattie has been playing with my parents. He has created a special playhouse in their apartment out of packing boxes. The playhouse apparently is guarded by Captain Mattie, and there are other characters in the story who are trying to invade the playhouse and Mattie has to defend it in the most clever and creative ways. It made for a very fun dinner conversation tonight. This reflects the beauty of playing with grandparents because sometimes we as parents are just too tired or innudated with other things to take the time to play in this manner.

Today, Mattie received a wonderfully large card from his soccer team, "The Superstars." He really enjoyed it. In addition, Mattie received a special gift from Karen. Candles from the Vatican! On the electronic front, thank you Emily W. (happy vanilla milkshake day too)
Susan (I think we all could get a lot out of joining a donut support group), and Karen (happy pancake day) for the wonderful e-cards and JJ (our resident Jack Russell Terrier) for his wonderful e-mail. JJ is away on vacation, and Mattie misses his canine buddy. I want to thank the Wright family for the delicious chili. Peter LOVED it and Mattie enjoyed the corn bread earlier today! I end tonight with a beautiful prayer I received today from Kathy Harris, one of Mattie's preschool teachers at RCC. Kathy received this prayer a long time ago from her Grandmother. Thank you Kathy, I will reflect on this often.
May God give you...For every storm a rainbow. For every tear, a smile. For every care, a promise. And a blessing in each trial. For every problem life sends, a faithful friend to share. For every sigh, a sweet song. And an answer for each prayer.

September 24, 2008

Wednesday, September 24, 2008

Wednesday, September 24, 2008

What a difference a day makes! Thank goodness the IV Kytril and IV fluids arrived last night. I called, Barbara, our in home nurse as soon as the package arrived and she walked me through how to administer both IV fluids through Mattie's central line over the phone. Within 30 minutes of the administration of Kytril, an anti-emetic, Mattie was beginning to feel better. He became energetic and interested in food. Something I hadn't seen for over a week. It was like reading the book, A Very Hungry Caterpillar, and Mattie was the caterpillar. He just ate, and ate! I savor those hungry moments, because they are few and far between. Because Mattie took a three hour nap during the day on tuesday, he wasn't eager to go to bed. So he and I stayed up until midnight. He thought that was very cool! I hooked up Mattie to IV fluids at 10pm and the in-home nursing company also supplied us with an IV pole. So at midnight you had to see the sight of Mattie and I climbing up the stairs to the bedroom with the IV pole in tow. It could have been on America's funniest videos. I think Mattie was more at peace and comforable last night, and really wanted to sleep through the night, but with over 100ml of fluid being pumped into his body per hour, the poor fellow was up every 90 minutes needing help going to the bathroom. So sleep has become a thing of the past in our home. Most days I feel like I am in some sort of fog, both physically and emotionally.

Mattie and I were both motivated for his condition to improve today, because he was invited to a special picnic at RCC, his preschool. This invitation came just at the right time, since we both needed this time out of the house and in the fresh air. When we got to RCC, all the teachers were waiting for him along with his RCC buddies, Alex and Witt. RCC, in my mind has always been a special place. I knew that from the moment Mattie entered the school on the first day. It is such a remarkable school that I always felt and still feel compelled to volunteer my time on their parent advisory board. I am indebted to RCC, because the teachers empowered me to appreciate Mattie and other children for the gifts they possess and bring forward, and particularly that all children are different, yet the same in so many ways. RCC's school symbol is the sun, and I always think fondly of the two years we spent at the school, because as many of you know raising a toddler and preschooler can be a challenging and sometimes isolating experience. However, RCC was my ray of sunshine during that time, and little did I know this sunshine would continue to burn bright and be such a vital part of our lives. The teachers today spent time with Mattie and with me and spoiled us with all sorts of treats and goodies. Coming back to visit can be bittersweet though because I was flooded with feelings and memories of all the good times at RCC. The good and healthy times. I just sat there thinking, how could we go from such a happy time to where we are now? But one thing is for certain, RCC accepts us for whatever way we show up and as always embraces Mattie and treats him like any regular or typically developing child. Thank you RCC for this special day out. You will always have a special place in my heart. Below are some pictures we took on the RCC playground.



Back Row: Margaret (Mattie's pretend room teacher at RCC), Vicki





Middle Row: Kim (RCC's director), Mattie, Kathy (Mattie's block room teacher at RCC), Alex


Front Row: Deb (RCC's OT)



Margaret, Vicki, and Julie














Left: Vicki and Kathy

Right: Alex and Mattie - swinging away!




I would like to tell you about a special envelope, sent from a special young lady, that we received in the mail yesterday. One of Mattie's RCC buddies, Ellie C., came to Mattie's fundraiser carwash last saturday with her mom and brother. Carolyn, Ellie's mom, tells me that Ellie was so motivated and inspired from the energy at the carwash that she went home immediately and decided to generate her own art creations and then sell them to her neighbors to generate funds for Mattie. Ellie felt like she wanted to do something that would help Mattie directly. Actually Ellie did a great job selling her art work, and the proceeds she generated will most definitely help Mattie. Ellie was concerned she did not raise enough money, but in all reality what Ellie gave to us is something so priceless that you can't put a value on it. When a six year old takes it upon herself to help another child in such a meaningful way, this is a gift that goes beyond dollars and cents. In addition to her generosity, Ellie is also a good artist. She sent Mattie an original piece, which she entitled, "A Mack Truck stomps out Mattie's bone bugs."See below!




Ellie's original!










On the electronic front, thank you Jenny P. (Mattie's art therapist, for the "big head" clay update), Wayne H. and the Commonwealth Baptist Church greeting, and Zachary for your nice e-mails and Karen, Emily, and Kim for your wonderful e-cards. Thank you Brian Boru (our feline friend) for the great gift you created of scooby doo activities. We also loved your picture of you doing the laundry!

September 23, 2008

Tuesday, September 23, 2008

Tuesday, September 23, 2008

I wonder if I jinxed myself by reporting on the blog that we had a good night of sleep on sunday night? I say this, because Monday night, was a night to remember. Literally Mattie was up on the hour. He literally said he did not feel tired, and looked wired and ready to do something. At 4am, I gave up with this in and out of bed routine, and instead we all officially got up and went downstairs. Peter was on a conference call with India at the time, so Mattie and I were kind of watching him, and doing our own thing at the same time. Peter is quite a good multi-tasker though, and he can run a conference call and answer my questions all at the same time. He's better than I am at 4am!

Needless to say, without much sleep, Mattie has an edge today. In addition to being edgy, he is quite nauseous, vomiting, pale as a ghost, and unable to drink or eat anything. In fact, he really hasn't drank or ate much of anything since he has been home from the hospital. I called Mattie's nurse today, and she is starting Mattie on hydration, which I think is a great idea! In the midst of dealing with all of this, I am trying to convince Mattie to take a shower or bath. I am meeting intense opposition. Considering the circumstances of how he is feeling, I am not pushing it. I did administer his G-CSF on my own today, and did that successfully, and tonight I will figure out how to administer IV fluids and IV Kytril (which is an anti-emetic). So one thing is for certain, I did not sign up to be a nurse in life, but I am certainly getting some basic training.

Today was one of those days when both Mattie's mood and my mood matched, in essence we were both down. I think it hit both of us today that even though we are home, what's the difference? We are still confined to one place and are unable to really live a normal life. Anyone who tells me this is the "new normal" should have to experience it for a while. There is nothing normal or should be normal about this. When feeling at my worst today, I checked e-mail and I receive an e-mail from Kim. Kim is Mattie's preschool director at Resurrection Children's Center (RCC). Kim invited Mattie and I to the RCC playground on wednesday at 1pm to have a picnic lunch with the teachers. I am not sure how Kim knew to do this, but this e-mail invitation was such a welcomed offer today! Mattie seemed very excited by this prospect, and it is my hope that the anti-nausea meds and the hydration help him so that he feels up to going outside tomorrow.

As many of you know, we have been trying to arrange for a consultation with doctors at Sloan Kettering. We just heard back from the hospital today and we have an appointment with Dr. Paul Meyers and Dr. John Healy next wednesday. We will leave for NYC next tuesday afternoon, right after Mattie's MRI at Georgetown Hospital. We will only stay in NYC for a day or so, and will be traveling up probably by car and staying at a hotel a block away from Sloan Kettering. I want to thank all of our NY friends and family who are willing to host us, but I want this trip to be as convenient as possible for Mattie, and the closer we are to the hospital the better. Thank you so much for all your wonderful offers though and support.

On a very special note, we received an e-mail today from Danelle and Brian Fortune. Peter went to business school with Danelle and also we reconnected again with the Fortune family at RCC (Mattie and Nora Fortune were in the same preschool class). Brian works with Ted Kennedy, Jr. As some of you may know, Ted Kennedy, Jr. was diagnosed with osteosarcoma when he was in 7th grade. He had part of his leg amputated, but has gone on to live a very full, productive, and successful life. Apparently when Brian told Mr. Kennedy about Mattie, he wanted to talk with us and lend his support. We are in the process of working with Mr. Kennedy's scheduler so that we can have the opportunity to connect with such a powerful successful story and a man who is such a passionate advocate for cancer patients and people with disabilities. Thank you Brian for this incredible opportunity!

On the electronic front, I want to thank Karen, Susan, Lorraine, and Kim for your wonderful e-cards, and Emily W., Zachary, and Bunny for your great e-mails. Thank you Barbara L. for a wonderful dinner tonight. After a day like today, the idea of even seeing the kitchen wasn't appealing, so we really appreciate you cooking for us and delivering such a nice meal! Let's hope tomorrow is a better day!

September 22, 2008

Monday, September 22, 2008

Monday, September 22, 2008

Well guess what? I am proud to report that we broke the 4am wake cycle last night. Mattie slept on an aerobed in our room, and we did not hear a peep out of him all night. It is my hope that being in our room provides him some comfort, so that we can all get some much needed rest. Mattie started out strong today, he was playing with me, doing a puzzle with my mom, and then was even walking and running around. However, by mid-afternoon, he was wiped out. You can tell he is wiped out, he turns white as a ghost and basically heads right for me, buries his head into my stomach, and I realize this is the sign that he needs to rest. He literally went to lie down for two hours today. Something highly unusual for Mattie under normal circumstances. But I realize nothing is normal about our current state.

While Mattie was napping this afternoon, I had a visit from our in-home nurse, Barbara. Barbara was lovely and low key. She helped me learn how to administer G-CSF to Mattie. G-CSF (granulocyte-colony stimulating factor) is an haematopoietic growth factor. It stimulates the bone marrow to produce more white blood cells. One of the main side effects of chemotherapy drugs is a reduction in the number of white blood cells. This makes your body less able to fight infection. There is a risk that you could develop a serious infection, which might have to be treated in the hospital. G-CSF can be given to people in this situation to stimulate the bone marrow to produce new white cells more quickly after chemotherapy. This can shorten the period during which you are at risk of developing a serious infection. G-CSF needs be be pushed through Mattie's central line over a 30 minute time period, and therefore needs to be administered through an IV pump. So today, I learned how to flush Mattie's line with D5W, followed by the administration of G-CSF. I will have to do this process each day this week, in addition to the dressing changes, flushing his lines daily, and making sure he takes certain medications orally. No problem, right?! Of course no drug comes without potential side effects, and I looked up each one. G-CSF can produce: 1) Bone pain, 2) Red, itchy skin, 3) Fever, chills and fluid retention, and 4) Nausea, vomiting and diarrhea.

Mattie had a visit today from our neighbor upstairs, Kathleen. Kathleen has had her own battles with illness and lost her husband to cancer. When she heard Mattie's story, she was very concerned. She brought us some lovely Gerber Daisys today and a vial of holy water from Our Lady of Lourdes. All very special gifts. Technically if Mattie is neutropenic (low white blood cell count, which he isn't yet), it is suggested that we not have fresh flowers in our home. So I have them sitting outside on our patio table, but to me there is nothing perkier or happier than seeing the smiling face of a gerber daisy. After Kathleen left, Mattie and I built a lego fighter plane and did some word games. Later in the afternoon, Mattie played with my mom and then we all took a walk outside together. So it was a good day, free from non-stop interruptions, and full of fresh air and frankly freedom!

I would like to share three e-mails I received today. The first e-mail I would like to tell you about came from Rocio Johnson, the Marketing and Communications Coordinator at Caribbean Conservation Corporation. You may recall that Rocio was working with me on generating an article for their Tour de Turtles newsletter. Rocio sent me the electronic newsletter today. You will see a copy of it below, and to the side of it, I placed the actual text so you could read the article. On a side note, Rocio told me today that Mattie's sea turtle, Roxana, was named after their Costa Rica Director. Rocio took a copy of the story to show her, and she was very moved. She had a young daughter who passed away from cancer and she told Rocio to let me know that Mattie will be in her prayers. I told Rocio that I REALLY appreciated this story about how Roxana got her name. I am saddened to hear that the Costa Rica director lost a daughter to cancer, but I feel that there is something very symbolic by having Mattie's turtle named after someone else who had cancer touch her life!

Here is a copy of the newsletter article I received today:

This week, Roxana was able to bring joy to a 6-year-old boy named Mattie. Mattie has been diagnosed with osteosarcoma, a type of bone cancer, and began chemotherapy on August 7th. To help cheer him up during long hospital visits, his preschool director adopted Roxana, a participant in this year's Tour de Turtles. "Mattie is very excited to be the proud "parent" of a large green sea turtle named Roxana," said Victoria, Mattie's mom. "We are thoroughly enjoying the new addition to our family!"
In order to help Mattie, his family began a blog to tell everyone about his battle with cancer. In this blog, his family credits Roxana for reminding them of a valuable lesson. "We are learning that fighting osteosarcoma is a marathon and not a sprint," said Victoria. CCC would like to thank Mattie's family for reminding us that both sea turtles and Mattie are fighting, in their own way, for survival. To learn more about Mattie and read his blog, please visit http://mattiebear.blogspot.com/.


The second e-mail I received today that I would like to tell you about came from my former neighbor, Goli. Goli and her husband, John, recently moved to NYC. However, over this past year, we all became very close, and they lived right next door to us. Goli wrote the following, "You know in my life, I have met a lot of people. But, John and I have not met a family, such as you, Peter, and Mattie that we love, respect, have admiration for all members of that family such as we do for yours. I knew you were different from the first time I talked with you. Now I am more grateful to you for, as Peter used to say, "trusting us with the most precious person in your life.” I am indeed delighted that you trusted us with Mattie. My only regret is that I did not attempt to get to know you as soon as I got to DC, and lost so many precious days." Goli's e-mail was so meaningful, because I too could have struck up a relationship and friendship with her sooner. The issue went two ways. However, I have a feeling all of you can relate to this feeling of a lost opportunity with a friendship. We say to ourselves, I am not going to reach out to someone today, maybe tomorrow. Or better yet, perhaps we are afraid to strick up another friendship because of how it will impact our lives, or fear of things not working out. However, I am glad that Goli and I did eventually connect, because no amount of geographical distance can sever such a friendship.

The third e-mail I received today was from a GW student who I have had the pleasure of getting to know over the past two years. Emily W. and I worked on a research project together, were neighbors, and also Emily eventually became one of Mattie's babysitters. Emily recently moved back to NY, but when she found out about Mattie, she was devastated. She wrote this to me today, "I know that you have only recently learned about how much you mean to so many people in this world, unfortunately you learned this through Mattie's situation, but I want you to know how much you have meant to me. Professionally, academically, and most of all, personally, you have been such a great support, means of encouragement, and motivator to me. I would have never been successful at GW without you- Before I even started the program, my goal was set out to be just half as amazing of a student, leader and contributor to GW, CSI, and to students as you have been and still are. No words will ever be great enough to express my gratitude, admiration and love for you- but all I can do is try :) Vicki, you are amazing- Mattie is lucky to have such wonderful, caring, intelligent, generous, and passionate parents as you and Peter are. It is very obvious to me and everyone who knows your family how Mattie became such a smart, sweet, kind, and handsome boy." You may be wondering why am I putting these wonderfully personal comments on the blog? Well I guess for two reasons. One, hearing such comments are of great comfort during a time when I feel directionless and at times helpless. In a way, such positive feedback can be very empowering as I tackle the next major obstacle in Mattie's day/life. But second, I think I tell you this because sometimes, we have no idea how our lives impact people, until such a crisis arises. The feedback I am receiving lately leaves me in awe. It also shows me the importance of telling someone around you each day how much you appreciate them, or by simply saying, "You Did A Good Job!" Those five words don't require a great expenditure of energy to deliver, but who knows the type of energy they will be received with!

On the electronic front, thank you Kim, Susan, Emily W., Julie R., Margaret, and Lorraine for the wonderful e-cards, and Paul and Barbsie for the great e-mails. Thank you Kristin E. for dinner tonight. Your Martha Stewart Macaroni and Cheese was wonderful, along with the heirloom tomatoes (delicious!). Mattie appreciated the snickerdoodles! I head into another day tomorrow where Mattie is home without the usual structure we have gotten used to in our lives. No school, no camp, and no extracurricular activities. It at times is daunting and overwhelming as a parent to deal with this but then I catch myself, and realize, does it really matter? The answer is NO! Because what we should be doing is enjoying this time together, and not worrying about what is or isn't being accomplished.

September 21, 2008

Sunday, September 21, 2008

Sunday, September 21, 2008

We were struggling with Mattie last night (saturday) into this morning about the need to start drinking and eating something. On saturday night, I was able to coax him to drink three teaspoon fulls of water. But that was a chore. This morning, the issue continued. We begged and pleaded with him to drink something, anything. Believe me, we tried everything. He refused. We talked about why he wasn't drinking, and we got all sorts of responses from it hurts his tummy, to something more complex. He said he was afraid to be off of the IV machine. Peter and I both talked with him about this, because he said that the IV pole made him feel safe. We then reminded him that he was taken off the IV pole yesterday for a brief time, and everything was fine. But there was no rationalizing with him. He did appear to want to eat some of his breakfast, so we dropped pushing fluids and moved onto food. The hospital served him scrambled eggs, and he decided he wanted to eat that, of course to me, eggs on a sensitive stomach do not seem to be a good combination. But we went with it. About two hours later, Mattie began vomiting again. In the midst of the vomiting we also learned that Mattie's hemoglobin count was low today (below 8) and therefore needed a transfusion, and of course we were still dealing with one blocked lumen from the night before. So we had three issues to contend with, which only further frustrated Peter and I because it was our thought we would be released from the hospital in the morning.

As the day continued we resolved one issue at a time. Our nurse Miki (a real angel!), placed tPA (tissue plasminogen activator) into the blocked lumen of the central line and let it sit for an hour. After that, she went back at it with a syringe and was able to finally break open the clots in the lumen entrance. We felt very happy to resolve this problem, and learned that this most likely happened the day before when they lowered Mattie's fluid rate down to 15ml/hr. Peter and I are certainly getting quite an education, but one thing we do know is we have to keep "sparky," Mattie's central line open and operational. Miki also helped us resolve the second issue, the vomiting. She administered Kytril, and about 45 minutes later, Mattie was on the mend. The last issue, was Mattie's low hemoglobin (the iron containing oxygen transport protein in red blood cells) level. This was a little more complex to solve, because it involved the need for a transfusion, which took about four hours to complete. I knew that a transfusion was bound to happen one of these days, but I never thought it was going to happen today. I have my own issues about blood transfusions and I really wanted to refuse putting Mattie through this today, but I knew that it wouldn't be in his best interest. In order to have the transfusion, Mattie had to get his blood typed and crossed today, to determine his type and other factors. Then Peter and I had to sign an informed consent to receive this blood. Mind you when the blood gets transfused into Mattie, Miki (his nurse) stayed in the room with us for 15-20 minutes to make sure Mattie did not get a reaction to the new blood (such as fever, rash, or rigors - intense shaking). This was not even something Peter and I were aware of, that there could be some sort of reaction to a transfusion. When Miki saw that Peter and I weren't briefed on this, she immediately called the doctor, because it is the hospital's policy that parents be told of any possible reactions when receiving a transfusion for the first time. I really appreciated Miki's advocacy for Mattie and for us. What continues to amaze me are medical doctors. I am wondering if they are just too far removed from the clinical, day to day processes to really understand the ramifications their prescriptions and medical orders have on us (those of us receiving the care). It is one thing in theory to tell a family your child may need a transfusion down the road, and quite another to be sitting in front of a tired family, who has a child with cancer, and then just matter of factly delivering the news that a transfusion has been ordered and will be started within the next 30 minutes. Again, it takes away any power you as a parent have in the decision making process, and I wonder if doctors would react the same way if we put them in the same situation as us? Would they be so nonchalant about the whole process if this where happening to their own child? I wonder!

I went through the transfusion process mostly upset, and Miki could see this. She understood my concerns and dealt with each one very professionally. Again, thank God for nurses, because they know how to sit through the process with you and have the day to day observation skills that are so needed for parents going through such a nightmare. As the transfusion was coming to an end, Peter and I slowly started to pack up and get Mattie ready to head home. Meghan, our resident, was kind enough to send us home will all the medicines we needed for tonight. That was a blessing, so we did not have to run home and out to a pharmacy.

Coming home is always hard because it involves unpacking bags, putting laundry together, getting reoganized, going through mail, and so forth. Just imagine what it is like when you come home from vacation. You have nothing in your refrigerator, and things are piling up all around you. Well for us, we have this feeling each time we come back from the hospital. It is simply tiring. Mattie is in good spirits tonight. He drank half of a vanilla milkshake (Hey!!!) and ate two bowls of pasta. This is a great news, and now he is sleeping. Against my better judgment, Mattie is now sleeping on an aeromattress in our room. I just can't handle the 4am wakings, and I am hoping if he is in the same room with us, he will feel more secure. Time will tell.

On the electronic front, I want to thank Coach Dave (congratulations on the team's win), Wayne H. (for the virtual candle and mass said in Mattie's honor today), Barbsie, and Karen (great horse pictures) for your e-mails, and Kim and Lorraine (what a special angel card) for your wonderful e-cards. All these messages mean so much to all of us. Thank you Katie and Anna Parker for a wonderful dinner tonight. There is nothing like homemade stew. We thoroughly enjoyed it! Thank you also for the wonderful bag of halloween gifts. The scooby book and the ghost keychain were a hit! We received a very meaningful gift today from my mother-in-law, Barbara. Barbara's friends gave her a vial of holy water from our Lady of Lourdes. I want to thank the Carey family for this water and for the special mass being said in Mattie's honor. In fact, I opened up the vial today and rubbed the water over Mattie's right arm.

I leave you tonight by sharing a story about a new friend I have met through e-mail. Wayne H. lives in VA and lost his wife to breast cancer. When he heard about Mattie's carwash fundraiser through a community listserv he is a part of, he immediately mobilized forces and not only attended the event, but he has encouraged his church to become involved by sending e-mails and prayers. Wayne was in fact the FIRST car to get washed at Mattie's carwash on saturday. But this wasn't just any car, this was Jenny's car (Wayne's wife). I told Wayne that Jenny would have been proud of him that he took her car to such an important fundraiser. Jenny was a professional therapist who helped many children and their families, and it is ironic, even though she is no longer with us physically, her memory continues to help those around us. I feel honored that Wayne and a part of Jenny were at Mattie's carwash on saturday. What intrigues me about all of this is that cancer seems to level the playing field, and has a way of uniting all of us that it touches. I personally could have done without this experience, but if I have to go through it, I must say I am learning some very valuable life lessons.