Saturday, April 18, 2009

Saturday, April 18, 2009


Quote of the day: "Generosity is giving more than you can, and pride is taking less than you need." ~ Kahil Gibran

Before I begin tonight's posting, I want to thank my osteosarcoma friends for writing to me last night after reading the blog. I truly appreciated your insights and support. It is funny how we haven't met each other, but some how know each other already through reading about our children on their respective websites. The ONLY positive about cancer from my perspective is it unifies you in a very deep way with others who have experienced cancer personally or with a loved one.

Mattie fell asleep at 9:30pm on Friday. It was unheard of because Mattie hasn't gone to bed that early in months. However, he had a busy and active day in the clinic, so I think this helps to explain his need for sleep. Peter spent the night in Mattie's room and assisted him with bathroom runs, while I got a full night of sleep. Since Mattie went to bed early, he was up very early too.

I took Mattie to clinic today for a blood check. I was planning on being in clinic for a while, in case they decided to give Mattie a platelet transfusion. I brought a whole backpack full of activities for Mattie, but to my surprise, when we got to the clinic, Jenny and Jessie left three special toys for Mattie on the art table. The toys had a sign on them which read, "For Mattie B." I can't tell you what a special treat that was to see these toys, and Mattie was thrilled. Thank you Jenny and Jessie for looking out for Mattie even on the weekend!

I also received a lovely e-mail this morning from Tamra (a SSSAS upper school mom, who we have developed a friendship with). Tamra offered to bring Mattie and I lunch in the clinic today, and she was going to bring her daughter, Louise, with her, so that Louise could play a little while with Mattie. Mattie enjoys Louise's company, so I was so appreciative of this offer.

After we settled into clinic, Mattie's blood was taken. Because it was a Saturday, lab results came back much quicker. Mattie's platelet count was 16 on friday. Typically Mattie is tranfused when his platelet level is 20 or below. Dr. Synder wanted to see if Mattie's platelet level would start rising on its own without a transfusion, which is why Mattie wasn't transfused on Friday. However, Dr. Synder wanted Mattie back in clinic today to get a reading of his platelet level, to see which direction it was moving. Mattie's platelet level today was 18. Dr. Shad decided not to transfuse Mattie today either. Now in order to qualify to receive chemotherapy on Monday, Mattie's platelet level must be 50 or higher. I am told that it will be virtually impossible for Mattie's platelet count to jump up to 50 by Monday. Therefore, I am expecting that Mattie will receive only his MTP-PE infusion on Monday, and perhaps his platelet level will naturally rise to 50 by Wednesday. Most likely we will start the High Dose Methotrexate infusion on Wednesday or Thursday. I believe the thinking is that the doctors could artificially raise Mattie's platelet level with a transfusion, but since his count continues to be low, then it really means his body needs more time to heal, before starting another round of chemotherapy.

When I found out that Mattie wouldn't need a transfusion, I called Tamra to let her know we would be leaving clinic. Tamra was kind enough to drop off lunch for Mattie and I at our home instead. Thank you Tamra for a tasty lunch, and for the chocolate treats! That was so thoughtful of you.

The rest of the day was a big blur. It was a blur because Mattie was very demanding, wanted our constant attention, and when he did not get it, he melted down. I can assure you parenting a child with cancer is down right complicated, because a seven year old still needs structure and discipline, but it is hard to implement. Peter did some chores around our home today, and cleaned up our front deck, which is wonderful and makes it more useable now. After Peter did that, Mattie wanted to go on a walk and picnic. So we packed him up and brought some of his favorite foods. He told me exactly what he wanted to eat, but naturally when it came time to eat, he couldn't. His appetite has been severely affected by the last round of chemo. We walked down to the Washington Mall this afternoon, and found a lovely place to sit for a picnic and to watch people, dogs, and birds. Peter snapped a picture of Mattie and I on the picnic blanket.

We walked around by the Potomac river as well. When we came back Mattie had a visit from JJ, our resident Jack Russell Terrier. JJ also brought Mattie a pizza today. Thanks JJ! It was a long afternoon though. Mattie and I read many books together, played with Legos, and even did puzzles together. It came to the point that Mattie wanted to go out for a second walk, which we did.

Later in the day, I dealt with the chore of laundry, so that I wouldn't have to worry about it next week while we are in the hospital. Mattie and Peter spotted another mother Dove on our deck today, and she is sitting on an egg. We never found out what happened to the first mother Dove who was sitting on two eggs. When we got back from the hospital after being there a week, she and her eggs were gone. But Mattie is very excited that we have another Dove to follow.

Mattie experienced a great deal of nausea today, so tonight Peter gave Mattie IV Kytril. It is our hope this will help, but this prolonged nausea is a new one for us, because typically the nausea has subsided by now. Needless to say Mattie was very moody today, and yet full of energy, but not sure how to occupy his time. I can't tell you how difficult this is to manage, especially when Peter and I are SO tired and do not have much to give. It is hard at times not to let Mattie's mood affect us, and these moods impact our family life. The joys one has in a typical family for the most part are no longer part of our lives any more. For example, we used to enjoy eating together but with Mattie's constant nausea and the stress his illness puts upon our life, eating is no longer a joy, and rarely will we eat together. We attempt to, but one thing leads to another, and Peter and I spend a good portion of meal times jumping around. This is just one example in a whole long list of things that have changed in our lives which makes our family's life complex and challenging. So yes we contend with cancer, and its physical ramifications, but the physical ramifications have real world psychological consequences that also impact our quality of life. So in my perspective cancer attacks the family holistically, which is why it makes it so hard to cope with and accept.

I would like to share a message I received from my friend Charlie. Charlie wrote, "Friday's blog was so difficult to read. So many choices of how to proceed and none of them very positive. I wish there was a guarantee of success somehow but I don't think that will be forthcoming. I don't know how you are supposed to make these decisions without constantly second guessing yourself. I think from the tenor of your blog I know what you will decide but I don't envy you these decisions. I hope and pray you find the right surgeon for Mattie; I hear how important not just his or her surgical skill is but also the ability to connect and communicate with you and your family. Many thanks to the art therapists who kept Mattie busy all day yesterday so that you could concentrate on these critical upcoming decisions. It was truly a gift that you could leave him safely in their hands and be able to focus on all this medical discussion. And also thanks to the doctors who give graciously of their time, especially when they give that time without charge. May their gift be returned to them a hundredfold."

I have befriended a mom in Nevada whose son, David, has osteosarcoma. Kristi maintains her son's website as well, and about two days ago, I read a wonderful poem she composed and I asked her whether I could post in on Mattie's blog. Kristi welcomed me to do so, and I changed some of the children's names in this poem to reflect our situation. Thank you Kristi! So I end tonight's posting with Kristi's poem!



Osteosarcoma turns beautiful young children into warriors wise beyond their years. Fighting battles that only they can face. Deciding to endure, they hang up their lives on a hook in the corner. Soccer jerseys, football helmets, hockey sticks, basketballs, scooters, bicycles, dirt bikes, skateboards, and Barbie dolls stand still and silent now. They are armed anew with the uniform of the cancer patient. Broviac catheters threaded deep into their chests, bald heads, bodies hairless and thin and covered with scars. Limping slowly and steadily on heroic limbs absent of their natural bones, they just keep moving forward. They are all tremendously brave kids. Many I only know through a website such as David, Lauren, Paul, Sammie, and Emma. I know these children's lives have forever been changed by an uninvited monster called Cancer, Osteosarcoma in specific. These children live from hospital visit to hospital visit; chemo to chemo; and (in Mattie’s case) from surgery to surgery. I don't know any adult, who could handle the brutality of this life, and yet I watch my son, and other brave children endure it. Are they happy about it? NO! Do they do it anyway? Yes, they do. They put life into perspective. They prove what is really important and what is trivial. And I have seen more courage in these children, who I have watched go through this, and wonder if we adults could handle this as well? I know I wouldn't handle it as well as these children have. I am so proud of them! They are truly amazing and I really wish all of you could know them for their stories of bravery would touch your lives forever.

Friday, April 17, 2009

Friday, April 17, 2009

Quote of the day: “See how nature - trees, flowers, grass - grows in silence; see the stars, the moon and the sun, how they move in silence...we need silence to be able to touch souls." ~ Mother Theresa

Peter stayed with Mattie last night, in order to give me a night of sleep. However, I wasn't feeling well on Thursday night, and spent a good portion of it up. Though I talk about my fears and stresses with Mattie's illness, a good part of what I experience I internalize through headaches and stomach pains. Peter and I have both been very worried and concerned over Mattie's pending lung surgery. It is ironic when Mattie first was diagnosed in July 2008, Peter and I were overwhelmed with fear, anxiety, stress, and grief. So much so, that we couldn't sleep, bearly could eat, and we felt our hearts racing. As Mattie's treatment got under way, this level of anxiety changed. Not that we do not have these same fears, but we developed a level of understanding regarding the process toward recovery that was empowering. The ironic part is after nine months of torture, we should be celebrating the end of chemo in about a month. However, this achievement is being clouded over by a major surgery Mattie must undertake in June, a thorocotomy. I have to say Peter and I are right back to where we were psychologically in July. Some of the same anxieties and fears have surfaced which make it impossible to eat, digest food, and sleep. Clearly, having a major surgery like a thorocotomy is overwhelming in and of itself, but keep reading to get the full picture as to why this would be any nightmare for any parent.

I helped Mattie get ready for his clinic visit today. He wasn't happy about going to the hospital, but I told him there would be a cake to celebrate the end of Meg and Laura's (Linda's interns) internship. That motivated him. When we arrived at the hospital and checked into the clinic. Mattie was greeted by Jenny and then Jessie. Soon there after, Peter arrived from work, so that he could attend the doctor consultations we had scheduled for today. Linda brought Meg and Laura to the clinic, and with her she brought a vanilla cake! Mattie was thrilled to be able to eat the cake, and he gave Meg and Laura good-bye gifts. I found these charming figurines of a little boy holding a balloon, and on the balloon is written our key word for the year, "hope." I thought this would make a lovely gift, because the little boy figurine reminded me of Mattie, but I also wanted the figurine to remind Meg and Laura of the importance of instilling hope in the patients they work with as well as in themselves, so that they may continue to have the courage and strength to help others during the most challenging of times. Without hope, we would be completely lost.

Meg, Mattie, and Laura! To put some context to the length of time we have been at the hospital, we have experienced three sets of Childlife interns and keep in mind that an internship is about one semester long.

Mattie spent the afternoon with Jenny and Jessie, creating, having a good time, and even having a physical therapy session with Anna. I am thrilled Anna could come to clinic today, and get Mattie up and moving. Mattie apparently raced against Jessie, and naturally Mattie won! Jenny made Mattie some wonderful gold medals as his prize for winning. Mattie literally walked two whole laps around the entire clinic. Unfortunately we did not get to see this, because we were consulting with doctors about Mattie's case. None the less, we are very lucky to have this amazing support system at the hospital who kept Mattie busy and HAPPY for hours.

Peter and I first met with Dr. Nita Seibel, Head of Pediatric Solid Tumor Protocols - Clinical Investigations Branch at the National Cancer Institute. Dr. Bob introduced us to Dr. Seibel. Not that this really matters, but I think this is worth noting. We have professionals like Nita and Bob in our life who NEVER bill Peter and I for our visits with them. I mention this because we have noticed that some doctors have billed us incredible fees for just chatting with them in the hallway. Careful who you talk to in the hallway of a hospital! For example, I remember asking a psychiatrist a question in the hallway of the PICU in the Fall. Maybe I spoke to her for 10 minutes at the most. Do you want to guess how much she billed us for her 10 minute time? Try $400! Amazing.

We met with Nita today while she was on Georgetown's campus for a conference. We wanted to get some feedback from Nita about Mattie's lung lesions and what course of action she would recommend if the lesions were indeed metastatic cancer (bone cancer that has spread to the lungs). Nita is highly professional, listens carefully, and is a wealth of information. Here is what we learned in summary. Nita explained that we really do not know what we are dealing with in Mattie's lungs unless we do surgery and remove the lesions. However, we do know that bone cancer when it spreads moves to the lungs first. So the current lesion presentation gives every indication to being osteosarcoma in the lungs. However, we will not know for certain until we receive a pathology report on these lesions, post surgery. In addition, the pathology report will also tell us how viable (ie, how alive and active the cancer cells where at the time of removal) these lesions are assuming they are cancerous. If the chemo was effective, we would hope that there would be no viable cancer cells left. Nita also confirmed my thoughts, that if Mattie had a relapse of osteosarcoma, he wouldn't be receiving the chemo drugs he is currently on. There are two reasons for this, the first is that if the cancer comes back, we know that the current regimen isn't effective, and second, some of the drugs such as cisplatin, Mattie could never receive again because of its toxicity to his body. So I suppose, we better pray that other drugs are discovered between now and a relapse. Nita discussed with us some experimental treatment options we could consider if the lesions turn out to have a large percentage of viable cancer cells. One option is to continue to MTP-PE. But if the viability is high, then how effective has MTP been? Another option would be to continue on a different form of chemotherapy. But here is the problem with this, there is NOT much research out there about lung metastasis for osteosarcoma patients. So there is NO protocol, or in essence there is no way to determine how much chemo to give, or when enough is enough. So it truly is pioneer territory. A third option which Nita is investigating for us is a trial which uses Insulin Growth Factor (IGF), which has been implicated in the growth promotion of tumors, therefore blocking IGF from binding to cancer cells could theoretically cause these cells to die off. One thing that is abundantly clear is Mattie is different, because he had four primary tumor sites, not just the typical one. Nita suspects that what generated Mattie's osteosarcoma may be different from other children who have one primary osteo tumor location (but then again, who really knows, there is virtually NO research done on multifocal osteosarcoma).

Nita explained to us the importance of extracting these lesions through a thorocotomy versus through thoroscopic procedures. She also made an excellent case for why it would be important to remove all these lesions at ONE time, rather than removing the two lesions on the right side first for example, and then weeks later perform a second thorocotomy to remove the other two lesions on the left side. I told Nita that it will be hard enough to get Mattie to agree to another surgery, much less two! She agreed. But beyond the psychological ramifications of multiple surgeries, we have a bigger problem. If these are indeed cancerous lesions, and we perform a staged bilateral thorocotomy (meaning do one side first, heal and recover, and then weeks later do the other side), then we are leaving Mattie's body exposed to potentially cancerous lesions for a longer period of time post-chemotherapy. Nita gave us the name of a surgeon at the Mayo clinic who is known for performing simultaneous bilateral thorocotomies (where the incisions would be on Mattie's sides, under his arms, near the ribs and both the left and right lesions would be extracted in one surgery). Our consultation with Nita was very fruitful as always.

After we met with Nita, we then had an hour long surgical consultation with Dr. Alfred Chahine. Dr. Chahine practices at Children's Hospital in DC, and is also the Chief of Pediatric Surgery at Georgetown. Dr. Chahine answered all of our questions and gave us an overview on thoroscopic surgery (which is less invasive and done through video assisted technology) and why this would not be a good match for Mattie. Mattie's lesions are TOO small for video assisted surgical methods, and because of Mattie's aggressive cancer, a trained thoracic surgeon really needs to go in and manually feel both lung lobes for any additional lesions that may not have appeared on the CT scans. So I think Peter and I have safely ruled out thoroscopic surgery for Mattie. Now the question becomes how will the lung surgery be done. We are pursuing one of two ways, either it will be bilateral thorocotomies (which means cutting through the chest walls, under the arms by the ribs), or a sternotomy (in which an incision is made through the sternum, breast bone). Neither sound great to me, but Dr. Chahine explained the advantages of a sternotomy. With the sternotomy you are cutting through bone and not muscle. So believe it or not, it appears easier to recover from a sternotomy than thorocotomies. Thorocotomies are painful because you are cutting through layers of muscle. Either case, Dr. Chahine explained that regardless of the surgery, Mattie would most likely be in the hospital a week to two weeks, and then would need a at least a month to recover at home. Dr. Chahine warned us that this surgery is very painful, even more so than limb salvaging surgery. That was frightening to hear, and during recover Mattie most likely would still be wiped out, in pain, and having limited mobility. This was a reality check for me, because I can see the aggressive physical therapy I had planned for Mattie this summer isn't going to happen right away. Mattie will be unable to put any pressure on his arms for over a month, and right now Mattie occasionally uses a walker when walking. He would not be allowed to do this post surgery. To cut to the chase, Dr. Chahine recommends a sternotomy at this point based on the positioning of the lesions.

Dr. Chahine gave us something else to think about. He explained that such a lung surgery should only be performed if Mattie has no evidence of disease any where else in his body. If between and now and the end of May when we perform the next set of scans, if Mattie develops a tumor somewhere else in his body, then in all reality that tumor must be dealt with first. Meaning if a new primary site in the bone forms the research indicates that this must be dealt with first. So I am not sure what I wish for first. No new tumors? A successful sternotomy? More chemo drugs developed to treat osteosarcoma? Lesions that are non-cancerous? The wish list is endless.

I asked Dr. Chahine several questions about his experience doing these surgeries. He explained that he has done hundreds of thorocotomies on children of all ages, and maybe about 20-30 on osteosarcoma children. His reasoning for this smaller number is that the osteosarcoma population is sparse. We also discussed why it is important to use a pediatric surgeon versus a cardiothoracic surgeon, who most likely has more experience working on adults than children. I then asked Dr. Chahine how hands on he would be post-surgery. I feel for any surgeon who has to deal with us now, because Dr. Bob has spoiled my family. Bob never had a resident work on Mattie post-surgery, everything was done by Bob. However, I realize in the real world this isn't the case, but none the less, I was curious to hear how Dr. Chahine would respond. He handled it well, but I have to say I am frightened. I am not too proud to admit it. This is a very complicated surgery, where so much can go wrong, especially since they must collapse Mattie's lungs in order for them to feel for additional lesions.

Dr. Chahine commended Peter and I on Mattie's blog. I was impressed that he looked at it, and he said he doesn't know where we get the strength or energy to do this. Particularly he couldn't get over how we organize and post photos almost each day. He said that he has photos of his daughter in a box that he is still trying to organize. Here is the thing though, besides taking care of Mattie (which is my number one priority), the blog is also my job. I take this job seriously. I want others to know what is happening in Mattie's life each day, so as to never forget what living with a life threatening illness is all about. I also work hard at painting a picture of what we as a family are struggling with, because osteosarcoma is a disease with profound effects on the family.

After our meeting with Dr. Chahine, Peter and I had lunch in the clinic. Mind you it was 3pm by that time. Getting food down wasn't easy, but we did it. We then said good-bye to Jenny and Jessie who were just fabulous today. I did not worry about Mattie once while he was with them. Mattie's white blood cell count rose to 2000. So he no longer needs to take GSCF (the white blood cell growth factor), however, we have to take him back to clinic on Saturday (wonderful isn't it, considering we may start chemo on Monday!). Mattie's platelet count is low. So we will recheck his blood level tomorrow, but we may have to transfuse him in clinic tomorrow. I do not have access to Jenny and Jessie tomorrow, so I plan on bringing a ton of things with me to keep Mattie occupied during his transfusion. I would have to say the last chemo hit Mattie hard, because this will be his fifth transfusion in a week's time.

When we got home, Mattie wanted to take a stroll in this lovely weather. Though my mind and body did not feel like going, I went. Peter and I enjoyed the fresh air, and Mattie liked the walk. He told me today that for the first time he felt like his old self. When I asked him why? He said because these walks remind him of things we used to do together. While we were walking, Peter and I couldn't help but notice people staring at Mattie. Certainly we are hyper sensitive to this now, but we both made the observation at the same time. I guess living in the PICU shelters me, because in the hospital Mattie is a little boy who happens to have cancer. In the outside world Mattie is cancer, and he happens to be a little boy. I found myself getting mad at these people staring, and though my outrage may be irrational, I think Peter and I are just displaying our natural parental instincts. We took some photos during our walk this afternoon.

Left: Vicki and Mattie in front of an impressive fountain on Virginia Avenue, NW

Right: The World War II memorial

Left: A mother duck with her ducklings in the Washington Tidal Basin. Mattie loved watching the ducklings, and asked me if they reminded me of him and I.

Right: The Washington Monument and the Capitol in the distance.

We would like to thank the Cooper family for a lovely homecooked dinner. Mattie loved the cookies. Thanks for remembering his favorites! We truly appreciate all the support!

I would like to end tonight's posting with a message from my friend Charlie. Charlie wrote, "Thursday’s blog reminded me about how undervalued certain things are: silence, nature, the stars, etc. How we take so many things for granted until we don’t have them and then we realize how essential they all are to our ability to function as people. Vicki, I truly don’t know how you are managing with so little rest and then no place that is without intrusive noise. We have so much noise around us all day in a city, an office, a hospital, that we don’t even realize how disturbing it is; often it takes the truly painful, like construction or leaf blower disturbing the peace of a Sunday morning to remind us of the preciousness of silence. How can you think, pray, reflect if all around you is noise and chaos? One of the things I love about your blog is how it reminds me of the multitude of gifts I have been given (but often take for granted) like good health or waking to birdsong on a weekend morning. I hope that when this treatment is completed, all these “gifts” return to your lives in generous quantities."

Thursday, April 16, 2009

Thursday, April 16, 2009

Quote of the day: "However long the night, the dawn will break." ~ African Proverb


Typically when we are home, Thursdays are clinic days. But Mattie no longer receives MTP-PE on Thursdays. According to protocol, Mattie is now receiving MTP-PE only once a week, on Mondays. MTP-PE is administered for 36 weeks in total. The first 12 weeks, it is administered twice a week, and then for the remaining 24 weeks, Mattie receives it only once a week. I can't believe 12 weeks have already passed us by since Mattie started MTP-PE at Sloan Kettering in January!

Since Mattie and I had no plans today, I had high hopes to sleep in rather than get up early. However, my complex where we live had other plans for me. At 7:30am, Mattie's room was vibrating, and then the demolition began outside our balcony door. The drilling sound was beyond intense. It made me stressed out and it did not help my headache. I actually wanted to get out of bed and yell at a few people, but I figured who would care about my plight. Needless to say I can safely say there is NO peace for me whether I am home or in the hospital. Fortunately the sound did not seem to bother Mattie.

Mattie and I spent a great deal of time today playing with his Lego police headquarters set. I had to play the bad guys who were in jail, since Mattie prefers playing the good guys. Fine, the mood I was in, the bad guy role was perfect for me. I also administered GCSF (a white blood growth factor) through Mattie's central line. Mattie started the day off with a lot of energy, but as the day went on, both he and I were dwindling. In addition to being tired, that intense stomach pain I experienced a few weeks ago, came back in full force. So Mattie and I spent some time lying down in bed, while he watched a couple of Scooby Doo episodes.

This afternoon, I had a visit from my friend Joy. I met her at Resurrection Children's Center, Mattie's preschool. Joy made us a home cooked dinner tonight. Thank you Joy for the wonderful roasted chicken, potatoes, and asparagus. I loved Ari's favorite cake, thank you for sharing that with me! Mattie loved the maracas and the marionette that you brought back for him from your vacation in Mexico. It is so nice to be thought of while our friends are on vacation! I appreciated Joy's visit and the opportunity to have a few minutes of adult conversation!

Peter and I want to thank Alison McSlarrow (our Team Mattie Media and Communications Coordinator) for connecting us with Lauren Maddox (a SSSAS mom and a public affairs and communications professional) today. Peter had a wonderful lunch with Alison and Lauren, as they brain stormed an awareness outreach campaign for Mattie's walk and beyond. Peter told me how productive the lunch was, and we are so fortunate to have access to these talented women who are willing to share their time, talent, and expertise with us. Alison gave Peter a business card that she wanted him to pass along to me. When Peter gave it to me, and I read it, I laughed hysterically. What was on the business card? The words, "Stop Talking." Alison feels I should carry this card around with me and could use it in various contexts when someone is lecturing me or giving me unsolicited advice. I love it! Some of you may recall that in the Fall, Alison gave me a nail file. I still carry this file with me, because it was symbolic of my desire to break out of my own private Alcatraz.

Mattie's Osteosarcoma walk is scheduled for May 9, 2009. Our goals for this Walk are: 1) to raise funds for Mattie's fight against cancer, 2) to celebrate the amazing community who has helped us in extraordinary ways with this fight, and 3) to build outreach and raise awareness of Osteosarcoma. I am proud to announce the launching of Mattie's Osteosarcoma Walk ("March for a Mattie Miracle") website tonight. Peter did a great job designing this site, and we want to thank Liz Chiaramonte (walk chair), Christine Cooper, Ann Henshaw, and Alison McSlarrow for helping to populate the site's content. You can find the link to this website at the top left hand corner of this blog. However, the address is www.mattiemarch.blogspot.com. We spent a long time developing a logo for this March. We want to sincerely thank John Griswold, a SSSAS parent with his own comprehensive, direct mail, and marketing business (www.griswold-griswold.com), for designing Mattie's logo. John donated his services to Team Mattie, and I feel he did a stunning job capturing our hope theme, sentiment, and energy behind the walk. The logo is very meaningful. All the children on the logo were drawn by Mattie's friends, and the sun background is actually Mattie's "Mr. Sun" painting that he created with Debbie Pollak, his art teacher at SSSAS, in November 2008. I love how the sun was incorporated into the logo, and I also love how John embedded a head shot of Mattie in the logo. Mattie is featured right below the "Osteosarcoma" sign. Please check out the March website and feel free to circulate this March webpage. We thank you in advance for pre-registering for the walk on May 9.

As we head into Friday, we will be taking Mattie to the Lombardi Clinic for a check up and blood check. We have to determine that Mattie's white blood cell counts have risen enough to qualify for another round of chemo on Monday the 20th. While Mattie is in Clinic, Peter and I will be meeting with Dr. Nita Seibel. Nita is an oncologist who works at Children's Hospital in DC, as well as at NIH. Nita has graciously consulted with us on Mattie's case right from the beginning. We will be talking with her about the next steps for Mattie, especially if the lung lesions happen to be bone cancer that has metastasized to the lung. In addition, Peter and I will also try to meet with Dr. Chahine tomorrow at Georgetown. Dr. Chahine is the chief of pediatric surgery at Georgetown. Mattie will also have the opportunity to say good-bye to Meg, since Friday is her last day of her Childlife internship.

I would like to share two messages I received today. The first one is from my friend Mary. Mary wrote, "Yes, life has many unexpected turns. You are probably more aware of that than most people. Your blog reminds me how we have to make each day count no matter what. The way you are with Mattie, making life as happy as you can for him, is a good example of accepting what is and trying to make the best of it. Let's face it, you have way more right to complain than most of us and you try to stay positive for Mattie. You're a good example for us all. Nobody could stay positive all the time, under any circumstances (especially yours), but you do give it your best. Mattie has been blessed with wonderful, loving parents and you have given him a wonderful and happy life. That means so much. We never know how long or short our lives will be, but we do know when we've been really loved by our parents."

The second message is from my friend Charlie. Charlie wrote, "Wednesday’s blog was hard for me to read. I was pleased to see that Mattie continues to make strides in regaining his confidence in himself and his ability to make and retain relationships. It is wonderful that he is back to being comfortable without you right there within arm’s reach; he has come so far from where this started. As I read your comments about watching the children run and play and knowing that Mattie’s life right now is so far from this wonderful playful situation I empathize with your painful feelings. I have this mental picture of the child looking through the window at a party and wondering why she or he was not invited. Grief, sadness, perhaps even a little envy for what others have and take for granted; all of this is perfectly normal, you would not be a mother who wants the best for her child if you did not feel this way. Getting back to that situation will take time and patience but I believe it is achievable because of your determination and Mattie’s strength of will. And I know you will not be one of those who ever takes it for granted, knowing how precious and fragile it all is."


I end tonight's posting with a video my mom sent me. It is entitled, "Never Judge a Book by its Cover! Susan Boyle on Britain Got Talent." "Britain Got Talent" is like our American Idol. I personally love the song that Susan sang for the talent competition, but what impressed me about this clip is it spoke volumes about how our culture makes a quick evaluation of a person, and such assessments are usually biased and not accurate. Enjoy!

http://www.viralvideochart.com/dailymotion/susan_boyle_on_britain_got_talent?id=x8ymn0

Wednesday, April 15, 2009

Wednesday, April 15, 2009

Quote of the day: "To give without any reward, or any notices, has a special quality of its own." ~ Ann Morrow Lindbergh

We resolved Mattie's IV hydration issue last night. Even though Georgetown did order Mattie's fluids, the pharmacy apparently never processed the request. When we got home yesterday evening and the supplies did not arrive yet, I was concerned. Dr. Abu-Ghosh helped us last night by talking directly with our in home pharmacist, and then our in home pharmacist actually hand delivered the fluids to us at 10pm. It took a well coordinated team last night to get the hydration to our home!

Mattie had a busy Tuesday. He even had the excitement of moving out of his PICU room and coming home, but despite all of this, he couldn't fall asleep last night. In fact, he was wide awake at 1:30am. I felt like a zombie. I was actually lying down while Mattie was up. The lights were off and he was in bed, but he was VERY much up. At 1:15am, he was complaining that his knee and ankle under the cast hurt him. He was crying, and said he couldn't go to sleep unless he had IV pain medication. That clearly wasn't going to happen. The only thing I offered him was Tylenol. Fortunately he took it. When the effects of the Tylenol started to kick in, he finally fell asleep. Oh wow! Mattie was up every two hours last night using the bathroom, so this morning I felt just as tired as when I wake up in the PICU.

Mattie was excited that Whitney (one of Linda's former interns) was coming over for several hours. After all, I admit I can get boring as a play partner after a while. Mattie has been very busy working on a police headquarters Lego set that his cousins sent him for his birthday. He did a great job putting it together, and literally he could have done it all by himself, but occasionally I find he needs help pushing the pieces together because they are a tight fit. Mattie was happy he could show Whitney this Lego set, along with his big T-Rex model he received from the Lombardi Clinic for his birthday. Some of you may recall that Mattie had his electric trains set up in the living room for three months. Several weeks ago, I put them away to reclaim the space back. However, my parents sent Mattie a wonderful Lionel Train set for his birthday. Mattie actually opened it the day his cast was put on his leg. It definitely brought a smile on Mattie's very sad face. So we said good-bye to the NY Central a month ago, and this week we are saying hello to the Atchison, Topeka, and Santa Fe Railway in our home. The neat part about this train engine is that it blows out liquid smoke that smells like vanilla. Right up Mattie's alley. So our living room is filled up again, and Mattie is loving it.

Left: The lego police headquarters.

Right: The train set, complete with T-Rex.

Whitney went to Florida last week to visit her sister. She brought back several birthday gifts for Mattie. One of the gifts was quite unique. It was an actual preserved alligator foot with its claws intact (see photo). It is tiny, but fascinating, and Mattie and I are both intrigued by it! Whitney brought Mattie several wooden plane models for him to assemble, one of which she purchased on a Naval base in Florida. The gifts were very thoughtful, and it was special to be thought of even while on vacation

While Mattie was having a good day with Whitney, I spent several hours out of the house. It was a a damp and rainy day in DC. Not my kind of weather, however, despite that, it was still wonderful to have several hours where I was not on the clock. I had several chores to accomplish today, and I could never have done any of them without Whitney's help. I went to the grocery store and pharmacy. Later in the afternoon, I met up with Ann at her house. I had lunch with her and we chatted. We talked about all sorts of subjects, and we also spoke about Mattie's pending surgery. We talked about what would happen if Mattie did not have surgery, but we took the wait and see approach. In which we just kept scanning Mattie, and not removing these suspect lesions in June. Sure that is an option, but as Ann said to me, our philosophy has always been to treat Mattie's cancer aggressively, in order to achieve a cure. That is true, which is why I know in my heart of hearts that Mattie does need a thorocotomy in June. How the surgery is done is something we are still trying to get smart on, but I can not rest knowing anything could potentially be growing in Mattie. In the midst of our discussion, Ann was also baking muffins, so I had the opportunity to have freshly baked muffins too. A delightful fragrance.

As many of you know, Ann, is our Team Mattie coordinator, and does a ton for us each and every day. So when I heard that her car was being fixed today, I was happy that I was around to help her pick up her children from school and to drive her to the car dealership. Clearly I know Ann and I don't have a quid pro quo relationship, because if we did she would be on the short side of the receiving end. However, it made me feel happy to help her in some small way. I have to say it was a strange feeling driving onto Mattie's lower school campus. I haven't been there since the summer, when Mattie was healthy and in camp. I am very aware of my issues since Mattie developed cancer. One of my main issues is I have trouble being around healthy children. It almost pains me, because I so want Mattie to be a part of this world. As I was looking at all these children racing around and headed toward their parent's cars, I could only think how profoundly different our world is right now, and then I began to wonder how is it possible for us to reintegrate back into our former world? Is there really a place for us out there? Though I still live in Washington, DC, and in the United States of America, for all intensive purposes, I feel as if I have been transported to another Country with its own culture. A cancer culture, with its own language, lifestyle, and activities.

Fortunately my train of thinking was disturbed when Ann's children and one of their friends entered my car. To my amazement, the children asked me how Mattie was, and that they missed him. I am not sure why that caught me by surprise, but it did. One of the children even asked if Mattie was going back to tennis camp this summer, because she said she enjoyed seeing Mattie. I may never look at tennis camp the same way EVER! Though part of me is thankful for tennis camp because this brought Mattie's right arm tumor to our immediate attention.

When I got back home, Mattie was having a good time with Whitney and he did not want her to leave. On my shopping journey today I bought Mattie a pair of Scooby Doo crocs (shoes). When I gave them to him, he was THRILLED! Mattie and Whitney then decided to watch part of a video together, as Mattie appeared to be getting tired. While they were doing this I was able to unpack all the shopping. We also had a visit from JJ (our resident Jack Russell Terrier). JJ was dressed in his yellow rain jacket and looked adorable!

We want to thank the McSlarrow family for a very generous dinner tonight from Papa Razzi. It was delicious and Papa Razzi always reminds Peter and I of our days living in Boston. It was one of our favorite restaurants. Mattie was hungry tonight but felt nauseous. Fortunately, we had some Kytril that we gave him through his IV. About 3o minutes later, Mattie ate up a storm!

I am happy to report that Mattie's walk website is almost complete and we will post the link maybe as early as tomorrow. Mattie's osteosarcoma walk will be held on May 9th, at his school, St. Stephen's/St. Agnes School in Alexandria, VA. Peter and I are very grateful to Liz Chiaramonte for chairing this huge endeavor, and for Ann Henshaw and Alison McSlarrow for their tireless efforts to make this walk a success. We know there are a ton of other dedicated people helping to make this a special day, and we hope you know we are indebted to all of you.

I would like to share a message from my friend Charlie. Charlie wrote, "Tuesday seemed to be a day of gifts, of time, of thoughtful items, of caring and of love. While a giant bug might not be most people's idea of an ideal gift, it certainly fit the bill for Mattie. How lovely of Meg to bring this all the way from Georgia for Mattie to brighten his day. Junko brought the gifts of attention, caring and love as well as food (always important) and physical contact. A caring touch can do so much to relax and connect two people; Vicki, this also reflects your ability to connect with and relax Mattie with head and/or back rubbing when he cannot sleep While physical communication is usually pretty clear, verbal communication is often off target. Communication is such a strange thing; often we think we've made ourselves clear only to find that the other person has gotten an entirely wrong idea. This is what we have with Mattie; everyone assumed he understood the goal was to get back what he had--the freedom to walk and run without any equipment (wheelchair, walker, brace) but he somehow did not get that message. Reminds us all how critical it is to keep checking to make sure that the person we are trying to reassure understands what we are saying. Sometimes we want so badly to pass information along that we forget to check and see if the person we are talking to understands and really hears us. A good lesson to keep in mind whether you are talking with friends, family, patients or others."

I end tonight's posting with a story entitled, Clay Balls!

A man was exploring caves by the Seashore. In one of the caves he found a canvas bag with a bunch of hardened clay balls. It was like someone had rolled clay balls and left them out in the sun to bake. They didn't look like much, but they intrigued the man, so he took the bag out of the cave with him. As he strolled along the beach, he would throw the clay balls one at a time out into the ocean as far as he could. He thought little about it, until he dropped one of the clay balls and it cracked open on a rock. Inside was a beautiful, precious stone! Excited, the man started breaking open the remaining clay balls. Each contained a similar treasure. He found thousands of dollars worth of jewels in the 20 or so clay balls he had left. Then it struck him. He had been on the beach a long time. He had thrown maybe 50 or 60 of the clay balls with their hidden treasure into the ocean waves. Instead of thousands of dollars in treasure, he could have taken home tens of thousands, but he had just thrown it away! It's like that with people. We look at someone, maybe even ourselves, and we see the external clay vessel. It doesn't look like much from the outside. It isn't always beautiful or sparkling, so we discount it. We see that person as less important than someone more beautiful or stylish or well known or wealthy. But we have not taken the time to find the treasure hidden inside that person. There is a treasure in each and every one of us. If we take the time to get to know that person, and if we ask God to show us that person the way He sees them, then the clay begins to peel away and the brilliant gem begins to shine forth. May we not come to the end of our lives and find out that we have thrown away a fortune in friendships because the gems were hidden in bits of clay. May we see the people in our world as God sees them. I am so blessed by the gems of friendship I have with you.

Tuesday, April 14, 2009

Tuesday, April 14, 2009

Quotes of the day:

"Mother's love is the fuel that enables a normal human being to do the impossible." ~ Marion C. Garretty, quoted in A Little Spoonful of Chicken Soup for the Mother's Soul

"The mother's heart is the child's school-room." ~ Henry Ward Beecher

Mattie had a hard time falling asleep on Monday night. By 12:30am, I had it! I couldn't play one more minute. I finally shut off the lights, and massaged his head, and he eventually fell asleep! Mattie's nurse came in this morning to let me know that Mattie did not need a blood transfusion because his hemoglobin level jumped up considerably from yesterady. She also let us know that Mattie's Absolute Neutrophil Count dropped a bit today and therefore we wouldn't be released from the hospital. However, Dr. Synder (Mattie's doctor) found this data very suspect, and had Mattie's nurse draw more blood to confirm today's findings. About a hour or so later, Dr. Synder walked in Mattie's room and announced we would be discharged after Mattie received a transfusion. Funny how life can change in 60 minutes. Makes you wonder why two blood tests revealed such different results! But I wasn't about to question this, since it panned out in Mattie's favor. Mattie's Absolute Neutrophil Count was 350 today, a jump from yesterday's count of 160.

Despite going to bed late, Mattie woke up as soon as Meg came to visit him this morning. Meg (one of Linda's interns) went home for the Easter weekend, and did not return to work until today. Mattie missed Meg on Monday a great deal! He was in a funk the WHOLE day, and Meg is very good at perking Mattie up. This provides a challenge to me for many reasons because Meg's last day of her internship is THIS Friday! I have started to talk with Mattie about Meg's departure. At first Mattie wanted to know why Meg did not want to stay. After all he said, "doesn't she like playing with me?" The beauty of being 7, and the world seems to revolve around you. However, I explained to Mattie that Meg's school requirement finished up and she was returning home to look for a job. He got it, but he wanted Meg to know that she did not need to search for a job, because he would give her one. It was very cute, and I am so happy Mattie can connect with his fine ladies at Georgetown.

When Meg visited this morning, Mattie told us he was hungry. But he did not want his usual breakfast. I went through a list of his morning breakfast choices, but he did not want any of the things I presented. I then figured if Meg was there, I could go down to the lobby and purchase Mattie a breakfast pastry if he wanted it. He jumped at this opportunity. I went down and came back with a beautiful apple stuffed croissant. Mattie literally ate half of it, and then unfortunately spilled the other half on the floor as he was showing off to Dr. Synder, who came to visit and examine him!

Meg spent several hours with Mattie today. She brought him back a lovely Easter present from Georgia. A hand sized rubber cockroach! What every bug lover must have. It was impressive, I will have to take a picture of this new addition! It creeps me out, but it gives Mattie great pleasure! Meg spent the first part of the morning building a large Lego pirate ship with Mattie. Meg also participated in Mattie's physical therapy session today with Anna. Mattie wasn't allowed out of his room because he had to receive a four hour long red blood cell transfusion. When Mattie receives a transfusion, his blood pressure and temperature are taken every 15 minutes, which makes leaving the room impossible. So Anna's physical therapy session was concentrated in Mattie's room. At first Mattie did not want to do PT, but as he told me tonight in the car, Anna was very persuasive. So he got out of bed and did it! Anna tells me that Mattie did a great job.

Ironically, while we were driving home from the hospital tonight, Mattie said that it isn't easy walking with a cast. We explained to him why he has to force himself to start exercising and walking. We told him we want to celebrate the end of the wheelchair. Mattie understood that, but then said to me that he will always need the walker. It dawned on me that apparently I haven't made this clear enough for Mattie. He knows that the wheelchair is temporary, but he is under the impression that he will never walk like he used to, and will always need a device to help him walk. So I immediately corrected his faulty thinking, but in doing so, I wanted to inspire him to understand that he has the control over getting the wheelchair and walker out of his life. Which is why I told him when Anna or I encourage him to physically do something he should do it! I could see the wheels turning in his head, but it simply confirms to me how challenging it is for a child to understand the concept of a temporary disability.

While Mattie was working with Meg and Anna, I had a delightful visit from Junko. Junko is a SSSAS mom and friend, and our boys became friends with each other in camp during the summer prior to kindergarten. Junko works full time, but she took today off of work to be with me and assist me at the hospital. Not only did Junko bring me a wonderful shrimp salad for lunch and a fabulous dessert, but she made Mattie three different kinds of pasta! Mattie put in his request for pasta last night, and Junko rose to the occasion. She also brought Mattie watermelon, which he ate a whole bunch of tonight! Junko thank you for the beautiful and special socks, all the heating pads that we use while we are in the hospital, and for the wonderful gifts you gave Mattie. The trick nickel is a keeper! If Junko's presence, lunch, and gifts weren't enough, she gave me a wonderful neck and shoulder massage. While she did this, we had a wonderful time chatting, catching up on life, and learning more about each other. It was a very special time. After the day I had yesterday, today was a special gift. In fact, Debbi (Mattie's sedation nurse angel) came into the parent lounge several times, and was so pleased to see someone taking care of me. Debbi acknowledged Junko several times. What do you say about a friend who takes the day off of work, and then spoils you with a massage? Thank you doesn't seem sufficient enough!

While Junko and I were in the parent lounge, I was observing a dad on the phone and oblivious to his three year old son. In fact, his son left the room and was down the hallway and most likely fell. The little boy was crying. The boy was escorted back to the parent lounge by two hospital staff members who were trying to track down this child's parents. When they found his dad, they explained why it was important for the dad to keep an eye on his son. Throughout this whole conversation with the hospital staff, the father never got off the phone. While the son was crying and looking for a hug, the father kept on talking and never skipped a beat. True I have no idea what this dad was going through, or what brought him to the hospital in the first place. However, what I could observe was a child in desperate need of love and attention. I caught myself shaking my head at the whole situation, which was judgemental on my part, but all I could think of was this dad had a healthy and lively child right by his side and instead of following his son's cues, he was ignoring them. Sure the phone call may have been important, but what does it take to hug your child and acknowledge his fear or pain for a half of a second? I don't know, but what I have learned from Mattie's illness is you never get a second chance to connect with your child and through this connection you have the opportunity to build trust, security, and respect.

I also had the opportunity to see Robbie today. Robbie is a friend of Brandon's (Mattie's hospital big buddy) and is now volunteering in the PICU. Robbie is becoming a good pal of Mattie's. Robbie is another fine fellow, and I am so happy that Mattie has these wonderful male role models at the hospital.

Linda came to find me in the parent lounge today because Mattie wanted me back in the room. Mattie wanted help going to the bathroom, but I think the bigger issue was he was tired. He eventually fell asleep on my lap! Once he was calm enough, I placed him on his bed to take a nap. Meanwhile, Junko helped me finish up packing up the room. We accumulated a lot of things from Easter! Junko's help was invaluable. When Peter arrived from work, Junko literally helped Peter take everything to the car, while I stayed with Mattie. It made it so much easier for both of us, but it made for a very long day for Junko. Mind you this was Junko's day off from work, yet she spent it in the hospital and assisted us in every way possible. For that I am forever grateful!

When we arrived home, I had a TON to unpack! We want to thank the Bower family for a wonderful dinner tonight! Mattie loved the pizza, and I of course loved the cheesecake! Peter and I have been on the phone tonight with Dr. Abu-Ghosh, because Mattie's IV hydration was never delivered today. Mattie needs IV hydration for two reasons. The first is he refuses to drink enough of anything, and he easily becomes dehydrated. The second reason is that the chemo has left Mattie's electrolytes totally imbalanced. This certainly could be managed by oral supplements, but we know how non-compliant Mattie is with oral medication. So the easiest way to manage these issues is through IV hydration. It is EASIER for Mattie, but MUCH harder for Peter and I. Why? Because one of us must always be with Mattie at night. Mattie is up every couple of hours going to the bathroom, and needs great assistance with this especially when hooked up to an IV pole! Also every time you access Mattie's central line, you must be very careful to follow a sterile technique, in order to prevent an infection of the line. Oh how I long for the days of sleeping through the night! Without consistent sleep, I assure you, you land up feeling physically and emotionally drained and depressed.

I end tonight's posting with a message from my friend Charlie. Charlie wrote, "Vicki, you have my unceasing admiration for your patience, endurance and strength. Mattie did his best to acknowledge that by telling you that he loves you even when he is at his most difficult. He is so determined to once again be his own person and rebuild his sense of self that even when he knows he should give in, it is almost impossible for him to do so. I thought his tactic of changing "gears" and getting away from the confrontation spoke well of his emotional stability in this stormy time; many adults lack the ability to do what he did. Clearly he has learned this skill from you and Peter and it serves him well. I am sorry it was a difficult day, but I am glad to hear that his numbers continue to improve and I hope you are on your way home as soon as this round of treatment ends."

Monday, April 13, 2009

Monday, April 13, 2009

Mattie's Quote of the day: "I can be mad at you, and I can also be snappy, but don't forget I always love you!"

Quote of the day: "Giving frees us from the familiar territory of our own needs by opening our mind to the unexplained worlds occupied by the needs of others." ~ Barbara Bush


Mattie had a hard time falling asleep on Sunday night. In fact, I couldn't get him to close his eyes until 1am. Needless to say, I am exhausted today. Mattie slept until noon, and even when he awoke he was groggy and edgy most of the morning. I got up at 6:40am, because I know how it works in the PICU. Someone has to be up and mobilized in the room by 7am, because people start popping in and out of the room at that time. When Mattie is sleeping, I do not want him to be disturbed, so I go through great efforts to serve as the interference when others enter the room.

I saw Dr. Abu-Ghosh today prior to Mattie waking up. She asked me how Mattie's eating was going. I told her his appetite isn't back to normal yet, mainly because he isn't feeling well. She knows how Mattie is as well, and told me she was thinking about the possibility of Total Parenteral Nutrition (TPN). TPN is the practice of feeding a person intravenously, bypassing the usual process of eating and digestion. The person receives nutritional formulas containing salts, glucose, amino acids, lipids, and added vitamins. However, she too recognized that once his counts come back, he most likely will start eating on his own. I told her of my hesitance to start TPN especially since we are so close to the end of Mattie's chemotherapy regimen. So today one of my many goals was to get him to eat something, anything!

Mattie's Absolute Neutrophil Count is continuing to rise, it is 160 today, compared to 80 yesterday. We need a count of 250 or higher to be discharged from the hospital. Mattie no longer has a fever, however, he needs another blood transfusion. His hemoglobin level is low. Because Mattie was scheduled to receive MTP-PE today, the transfusion will be given tomorrow since Dr. Abu-Ghosh did not want one medication to complicate the administration of another.

When Mattie woke up, I gave him oatmeal. But he took a few bites and then stopped eating. Then he wanted applesauce, but that too, did not taste right. After he attempted to eat breakfast I then had to premedicate Mattie for his MTP-PE administration. He wasn't wild about taking Atarax (an antihistamine) and Tylenol, but he did comply. We then watched a video I brought in for Mattie yesterday entitled, "The Easter Bunny is coming to town." It is narrated by Fred Astaire and it is a classic. Mattie loves it. It engaged us for about an hour. After the movie however, things started to go downhill. Mattie could not figure out what he wanted to do today. He is surrounded by a ton of crafts, toys, and fun things, but none of them interested him. I tried providing him with a lot of ideas, and then offered him the opportunity to name something he wanted to do. What he wanted was someone other than myself to play with. However, his usual buddies weren't here today such as Linda, Meg, Jenny, and Jessie.

Mattie was getting very agitated with me and I tried my best to remain calm, always listening, and receptive to his suggestions. But there came a point where he was treating me very meanly. At which point I told him I was unhappy with his behavior, but was willing to talk with him to figure out something to do. Literally we spent two hours in a show down. Toward the end of the show down, he refused to talk with me, and I just remained silent until he was ready. While he was giving me the silent treatment, Katie, his wonderful HEM/ONC nurse was administering MTP-PE. Also Mattie's doctor, Dr. Synder, came to visit us as well. When Dr. Synder left, Mattie began to talk and he said he was hungry. That broke the stand off between us. He wanted his old standby, bread and butter. So as I was preparing a plate for him, he said he wanted to get back into bed and wanted the blankets on him. This signified the formation of a problem. Mattie never wants to go to bed, much less wants to be covered up. So I knew that Mattie was beginning to have a negative reaction to MTP-PE. I alerted Katie. Sure enough as Mattie was eating, he started to shiver and his teeth were chattering. I got Katie, who went to retrieve the Demerol.

Meanwhile, while waiting for the Demerol, I covered Mattie with four blankets and had my arms wrapped around him holding him tightly since he was shaking like a leaf. Katie arrived with the Demerol in minutes and began pushing it through Mattie's central line. We knew it was beginning to work when Mattie asked that I pause his Scooby Doo movie (that I started while he was eating his bread). In the midst of getting his Demerol, Mattie started talking to Katie and I about mother hens. He said that mother hens use their wings to keep their babies warm. He said that my arm was like the wing of a mother hen. But the real kicker was on some level Mattie knew that his two hour showdown with me was taxing and very upsetting. He then said to me very sincerely and totally unsolicited, "I can be mad at you and I also can be snappy, but don't forget I always love you." I gave him a hug and said I already knew that, but it was nice of him to let me know.

Pretty soon after that Mattie fell asleep from the Demerol, and Peter called me to tell me that he was on his way over to the hospital to help me. That was very appreciated. I am sending Peter home tonight too, because I know he will be able to give me night breaks later on in the week. Needless to say, Mattie's afternoon nap gave me a minute to recharge emotionally.

We want to thank the May family for a wonderful dinner! Peter and I love ham, and it was nice to have a homecooked dinner. Mattie loved the watermelon and the bread, and I very much appreciated the chocolate covered strawberries! Mattie looks forward to opening the gift that the May family gave him! We want to thank the May's for their support!

I would like to share two e-mails with you. The first one is from my mom. My mom wrote, "I read the blog and was encouraged by Mattie's resilience and his zest for a normal life as he fought off the horrendous complications of his illness. He doesn't give up on himself and neither will we. No matter what the journey ahead demands, he has the courage and determination to face it and it has steeled my resolve to match his fortitude measure for measure. He sets an example for all of us to follow and it is ironic that we are being taught about how to tackle the challenging events in life by a little boy, just 7 years old, but with the heart and spirit of a wise man. It's truly amazing and Mattie, from his track record, will NOT GIVE UP and NEITHER WILL WE! Easter Monday is a very good day for reflecting that we have already come far in our journey to restore Mattie's health and with GOD's help we will go all the way!!"

The second e-mail is from my friend Charlie. Charlie wrote, "Easter Sunday was not what you hoped it would be but it clearly was a good day for Mattie in spite of his readmission to the hospital. It was full of fun and laughter and attention of caring friends who gave of their time on the holiday to make his day brighter. Many thanks to all of them for making this day really special and memorable for Mattie, Vicki and Peter. It sounds as though Mattie got as many eggs on his various hunts as several children working together might have accomplished. On this Easter Sunday a time of resurrection, reflection and love in Christianity, I offer the lyrics to an old song called, "I believe"..."

(Erwin Drake - Irvin Graham- Jimmy Shirl - Al Stillman)
I believe for every drop of rain that falls
A flower grows
I believe that somewhere in the darkest night
A candle glows
I believe for everyone who goes astray, someone will come
To show the way, I believe, I believe
I believe above a storm the smallest prayer
Can still be heard
I believe that someone in the great somewhere
Hears every word
Every time I hear a new born baby cry,
Or touch a leaf or see the sky
Then I know why, I believe
Every time I hear a new born baby cry,
Or touch a leaf or see the sky
Then I know why, I believe.

Happy Easter!

Sunday, April 12, 2009

HAPPY EASTER!

I would like to start tonight's blog with a message I received from my good friend, Lorraine. Lorraine wrote, "Just read an editorial in the Post, "Easter," that I wanted to share with you on what must be a very challenging Easter Sunday. These words seemed to ring so true for Mattie's situation.

In defining what Easter means: ... "a certain reverence toward life and an understanding that between us we can overcome the worst horrors, find consolation in the help and concern of others, resurrect our hopes, and go on." Later the article says that a Cardinal commented that, "everything can stop in a moment. After that, "All that remains is love."

Today was a busy day for Mattie. Peter reported to me that Mattie's fever spiked last night, but so far today, he has been fever free. In addition, Mattie's platelet level is fine. So no more transfusions today. In addition, Mattie's Absolute Neutrophil Count is 80 today, up from zero. So his counts are starting to rise, seems symbolic for Easter day. Peter and Mattie started the day with an egg hunt right within Mattie's room. Thank you Virginia and Jon Morgan for all the wonderful eggs to surprise Mattie with, he loved the golden egg especially!

I arrived at the hospital around 1pm. Before I got there, Linda came by to visit all the patients in the PICU, and she brought Georgetown Cupcake with her. All the children received lovely cupcakes today, and Linda left Mattie with some art supplies, which were VERY helpful to us tonight!

I sent Peter home at 3pm, since he had work to do, and also needed a break. Mattie and I had a full afternoon of playing together. I brought puzzles from home and several of Mattie's favorite board games. We played several rounds of Funny Bunny, a game that his good friend Charlotte gave him months ago. I took a picture of Mattie getting a kick out of beating me badly! The great part of this afternoon is Mattie was standing for most of the time while he was playing with me!

In addition to board games, we made some wonderful paper animals such as an alligator and a bunny! Mattie also wanted to play the car game we made up the other day. We had all the cars out, and Tanja's rubber frog. The frog is the "bad" guy and attacks the cars and the village. We are getting more elaborate on our forms of protection for the cars.

Mattie had two sets of visitors that made our day very special. It really helped to break up our afternoon, since there are only FIVE patients in the PICU. It is like a ghost town here. All the HEM/ONC full time staff are not at work today, and only travelers are working on Easter.

The Bentsen's visited us in the afternoon. Tamra brought her lovely girls to the hospital to host an Easter egg hunt for Mattie. Louise and Meredith (students at SSSAS' upper school) helped me take Mattie into the hallway, and assisted Mattie find eggs. This Easter Bunny really knew what pleases Mattie. Mattie picked up a full basket of eggs and gifts. His favorite gift was an egg that when opened transformed into a dinosaur. Mattie worked on this egg puzzle several times throughout the afternoon. Mattie also loved the minicars from the Lightning McQueen series. But the real hit was the simple fact that the eggs were stuffed with, not candy, but quarters and even a Sacagawea dollar! Mattie personally held onto the dollar! I snapped a picture of Mattie with Louise and Meredith and his basket full of gifts! Thank you Tamra for visiting today and sharing Louise and Meredith with us. You all brought us great Easter cheer.

Louise, Mattie, and Meredith!

This was a weekend we were supposed to be home, with an attempt at having a normal holiday. Ann and Tanja planned a lovely weekend for us. On Friday we were going to color Easter eggs at Ann's house, Saturday we were invited to Tanja's house for an egg hunt and brunch, and today, we were invited to Ann's house for Easter dinner. Clearly, we couldn't go to Ann's house, so Ann brought Easter dinner to us. Despite having hosted Easter dinner and Ann had company throughout the day, in the evening she and Dr. Bob visited us in the PICU. They took Mattie into the hallway for another egg hunt (which he LOVED!), and they gave me the chance to eat dinner. Mattie loved the attention, and it is wonderful that he has this opportunity to interact with Dr. Bob in this fun sort of way. Mattie received two more beautiful Easter baskets today. One from Tanja (thank you!) and the other from Ann and her family. Mattie loved opening up every present and egg. Ann stuffed the eggs with rubber bugs! These were a hit. In addition, there were some other hits, such as rubbery eye balls, which he is freaking me out with, and a cute pig key chain. Of course what would make this pig hot stuff for a seven year old boy? Well the pig poops out tiny brown pellets. Tonight Mattie made a stew out of his bugs and invited Amanda and Brenna (our nurses) in for "soup." They were all good sports, but this was quite a concoction!

In addition to all the baskets and the Easter egg hunt that Ann and Bob brought us, they also brought us an incredible Easter feast. I felt like I was at their celebration! They introduced me to rice mixed with carrots, which was one of my favorite things, along with butternut squash, sweet potatoes, and string beans. I happen to love vegetables, so I truly enjoyed dinner tonight. It is very hard to be "on" 24 by 7, and to also have the energy to play and not be preoccupied with Mattie's illness. Which is why having visitors on Easter made it feel more like a holiday for us. Thank you Tamra and Ann for coming to the PICU today, it really helped.

I had the lovely surprise of receiving an e-mail today from a former student of mine. Ariel was an undergraduate student of mine at GW, and she wrote to me today to let me know that she reads Mattie's blog daily. In addition, she is inspired by Mattie's story that she is doing her research paper of the impact of illnesses on children and their families. She has asked if I could connect her with Linda, since she knows how vital Childlife has been in my family's life. Ariel wants to interview a qualified Childlife professional, and I can't think of a better person than Linda. I was touched by Ariels' e-mail, and I am so honored that Mattie's story has caused her to pause to learn more, to research the psychological impact of illness, and to explore a field that I wish I learned more about in my studies, Childlife. I wish Mattie did not have cancer, and I wish Peter and I weren't in the position we are in, but if we have to be here, it gives me great satisfaction to know that we are doing our part to enhance osteosarcoma awareness within the community.

I end tonight's posting with a message from my friend Charlie. Charlie wrote, "Today is Easter Sunday, the day of resurrection for Christians and one of the intermediate days of Passover. Both holidays make use of eggs to symbolize the endless cycle of life, rebirth of both Spring and the human spirit. May the spirit of the holiday infuse Mattie with the determination to recover from this disease and you and Pete as his parents and guardian angels, the faith and strength to carry him when he cannot carry himself. I believe that when your strength runs out, the Lord will carry you forward on your journey, so I hope you find that faith in your heart when you most need it."

FOOTPRINTS IN THE SAND ~ Mary Stevenson

(Though I posted this poem on the blog before, in light of today, I thought it was worth reposting!)

One night I dreamed I was walking along the beach with the Lord.

Many scenes from my life flashed across the sky.

In each scene I noticed footprints in the sand.

Sometimes there were two sets of footprints,

other times there were one set of footprints.

This bothered me because I noticed

that during the low periods of my life,

when I was suffering from anguish, sorrow or defeat,

I could see only one set of footprints.

So I said to the Lord,

"You promised me Lord,

that if I followed you,

you would walk with me always.

But I have noticed that during

the most trying periods of my life

there have only been one

set of footprints in the sand.
Why, when I needed you most,

you have not been there for me?"

The Lord replied,

"The times when you have

seen only one set of footprints in the sand,

is when I carried you."