Saturday, June 6, 2009

Saturday, June 6, 2009 -- A DAY TO REMEMBER!

Quote of the day: "With courage you will dare to take risks, have the strength to be compassionate, and the wisdom to be humble. Courage is the foundation of integrity." ~ Keshavan Nair

Before I tell you about our amazing day, I want to thank all the osteo families out there reading our blog. Some of you I did not even know about. I appreciate your postings and e-mails and I plan on e-mailing you all directly to learn more about the information and insights you shared with me!

In true Brown Family roller coaster style, today was an extremely good day. Mattie celebrated his birthday officially. Mattie's real birthday is April 4, but because he was hospitalized during that time, he was unable to have the true bug party that he wanted. So thanks to our amazing friends, Mattie had his dream come true today. Peter and I are very humbled, because in the midst of such tragedy, we are surrounded by friends who take our breath away. Peter and I did not plan or pay for anything associated with this party. So today we received an amazing gift of love and generosity that in some way is too hard to describe or believe. If you think altruism no longer exists in our society, I need to introduce you to our friends. A special thank you to the Cooper's who hosted and planned a phenomenal party and of course to Ann who ran many of the activities today! After the party was over I was a little numb. I asked Peter how he felt, and he too said there were times today he felt depressed. Depressed because like I have said in the past, it is hard to see other healthy children, and know this is not part of Mattie's world. Of course we shake these thoughts out of our heads, but it takes a great deal of energy on our part to do this. Despite these moments of sadness, we were filled with great joy and the ultimate gift was that Mattie was TRULY happy! He said this was his BEST birthday party he ever had. Today's blog will be a posting of pictures and descriptions! I hope you enjoy this and feel like you were part of the celebration!

Left: A picture of the birthday boy!

Right: Everyone gathered around for the Reptiles Alive show. This was an incredible show filled with bugs and other creepy crawlers! Pictured in the back row (going left to right): Brian, Garrett, Katie, Ellen, Julie, and Mark. In the middle row (going left to right): Mattie, Campbell, Zachary, Alex, Katie, Sara Catherine and John. In the front row (going left to right): Abigail, Livi, Charlotte, and Kate.

Left: A close up of Livi (whose house the party was held at), Charlotte, and Kate watching the show!

Right: Mattie and Ann! Ann's expression captures it all, some of these snakes and other crawlers were almost too much to watch!

Left: Jennifer (the host from Reptiles Alive), with a Madagascar Snake!

Right: Jennifer with a very large turtle! Mattie's buddy Xander and his mom, Liz (our Mattie March Walk Chair), watched in the background.

Left: Jennifer coaxing "Charlotte" the tarantula to move!

Right: Jennifer holding a very large and intimidating Monitor Lizard.

Left: Jennifer holding an albino python, named "Sunshine." Sunshine is 45 pounds. Lovely!

Right: Mattie's bug cupcake that he designed!

Left: Abigail with her cupcake designs. Abigail is Ann's youngest daughter and Mattie is excited to be having a sleep over at Abigail's house tonight.

Right: Vicki, Mattie, and Lorraine. Lorraine is a good friend of Vicki's. Lorraine hasn't missed any of Mattie's birthday parties, and has been part of Mattie's life since he was born!

Left: Vicki and Mattie discussing his cupcake creation!

Right: Mattie's buddy Campbell! Campbell and Mattie met each other in Kindergarten and have been good buddies ever since. Mattie's party was at Campbell's house today.

Left: Ann got these HUGE fly swatters for the kids. The kids used the swatters to swat at bubbles and other fun objects. You can see Tanja in the background encouraging the kids to swat at the bubbles.

Right: James (Campbell's dad) dressed up as a ROACH, to present Mattie his roach birthday cake. James was a major hit today with the kids!

Left: Mattie checking out his cake! Featured from left to right is Katharina, Vicki, Mattie, Peter, Abigail, Zachary (Mattie's good buddy from preschool. Zachary stayed close to Mattie throughout the entire party!), and James, our favorite "roach"

Right: A close up of the cake. The cake was designed by Specialty Cakes by Design (www.specialtycakesbydesign.com), and we want to thank Jennifer (the cake designer) for contributing a portion of the cake cost to Mattie's fund! The cake was very special and tasty too!

Left: Mattie, Abigail, Katie, and Kate swatting James (the roach).

Right: Mattie and Ann wrapping poor James in paper! He looked like a mummified roach by the time the kids finished with him. James was an amazingly good sport!

Left: Mattie holding his pinata, which was in the shape of a bee. I found it interesting that Mattie did not want to hold a bat and swing at the bee, but I understood. He on some level knows his abilities are different from the other kids. But Ann allowed Mattie to lead the activity by calling up his friends one by one to hit the pinata.

Right: The birthday gang! Front row: Charlotte and Abigail. Middle row: Livi, Sara Catherine, Mattie, Kate, and Zachary. Back row: Michael, John, Katharina, Katie, and Peter.

After the party, we dropped Mattie off at Ann's house for a sleepover. Mattie was excited beyond belief. Peter and I can't thank Ann enough for giving Mattie this special evening, not to mention giving Peter and I an opportunity to restore our mental health. We want to thank Mattie's social worker, Denise, for providing us with a one night stay at a local hotel. The hotel couldn't do enough for us, because they know about Mattie. They gave Peter and I an amazing room overlooking Georgetown (we can actually see the hospital in the distance, funny, no?), wine, and chocolate covered strawberries. So we are getting spoiled and treated very special today. I wish the reason was for something happier than Mattie's illness. None the less, as I am signing off for tonight, but wanted you to know that despite our hardship, are eyes are wide open to all the wonderful people in our lives who have made today possible! THANK YOU!

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Friday was quite overwhelming. Although I am sure it was not as smooth as it read in the blog, I have to say that Mattie has come miles from where he started with regard to scans and tests. I think back to when he had to be sedated for every scan and I am really amazed at how far you have brought him. That said, it is hard to be happy or positive when the tumors are still growing in Mattie's lungs. If Mattie is to have a chance at remission there really isn't any option other than surgery. I saw the two postings (Emma's mom and Keaton's mom) and it appears there may be some chemotherapy that is effective on lung lesions and I know that being the thorough researcher you are that you will chase this down and get as much information as possible to go forward with post surgery. All anyone can say is that you and Pete made and will make the best decisions you can based on what treatment is available, Mattie's condition and your love for your son. What the rest of us can do is support you, your decisions and pray for the best possible outcome."

Friday, June 5, 2009

Friday, June 5, 2009

Quote of the day: "Whatever you do may seem insignificant, but it is most important that you do it." ~ Mahatma Gandhi

We have noticed that Mattie can't seem to settle down at night without receiving Morphine. When I spoke to Dr. Gonzalez today, she felt that Mattie uses Morphine as a sedative, to help quell his anxiety and fear, which seems worse at night. I think this is a very legitimate theory!

We woke Mattie up at 8:30am, so that we could leave the house by 9am to get to the hospital in time to register and be on time for the bone scan appointment. That seems like a reasonable hour unless you go to bed after 1am, which we did. When we were arrived at the hospital, parking was actually easy! We met up with Linda while we were registering. Mattie was beside himself with the registration process. He told me it was boring and asked me why they did not know this information already since we come to the hospital every week. Excellent question! I ask this myself ALL the time. Mattie was shocked to learn that while he is playing with Jenny and Jessie in clinic each week, that I head to admissions to register him into the hospital for each hospital stay. He couldn't get over it. Once we were registered, we headed up to nuclear medicine to receive the injection of dye for the bone scan. A radioactive chemical called an isotope is injected into Mattie's central line. Once this isotope enters the bloodstream it travels to the bones, where it emits Gamma Rays, which are similar to x-rays. These Gamma Rays are detected by a Gamma Camera and analysed by computer to form an image of the bones. Potential problem areas emit more intense rays & appear as bright spots on the scan. Mattie has to sit for two hours in order for this isotope to get absorbed into his system. While we were waiting, we headed back to the clinic. Linda was with me throughout the entire day as was Ann (which was 10am until 5pm!). Linda clearly put a lot of thought into today, since she provided Mattie with a cart load of toys that she knew would engage him. Linda brought Mattie a wonderful fire boat Lego, which he couldn't wait to open up and assemble while in clinic.

I snapped a picture of Mattie in the hallway, waiting for his bone scan. Linda gave Mattie a view finder, and he was having a great time looking inside and sharing the scenes with us. Linda's bag of tricks were invaluable today, as is she. Linda knows how to manage any situation, and it is clear that the hospital staff respects her. She worked hard to make today go as smooth as possible for us! While in clinic, we met up with Ann and Mattie had his blood drawn to monitor his counts. Ann and Linda played with Mattie, and Jenny and Jessie gave me a ceiling tile to paint. A child had started the particular tile they gave me, but it needed to be completed, so I have taken on this project. An interesting project because it is hard to always understand what another artist was trying to capture through the art, but I enjoy this challenge. I am trying to transform this child's colorful abstract wavy stripes into a hot air balloon. May sound strange, but if you could see the colors, you would understand where my thoughts are coming from. Or maybe I just would like to be transported far away from our hospital world. Not sure!

At around 11:45am, we pulled our caravan together in order for Mattie to have a bone scan. While waiting for the bone scan, Ann gave Mattie a gift she brought back for him from Hershey Park. Though Mattie doesn't like chocolate he loves his new Hershey kiss red pillow. It is so inviting you either want to lie down on it or eat it! We even used this pillow today to prop up Mattie's right arm during the bone scan. Mattie handled the scanning quite well today, despite the fact that he was starving! He couldn't eat since the night before. So by 2pm today, I thought he was going to pass out. In addition, several of the positions Mattie had to hold were very uncomfortable for him, and at one point during the bone scan, he was crying. Mattie wasn't moving, or saying a word, so as to not screw up the scanning picture, but he was clearly miserable. At which point I asked the tech how much longer he would need to remain still. Fortunately Mattie's scan was complete within minutes after that point. But Linda, myself, and Ann were trying all sorts of things to get Mattie's mind off of things. The funny part of our day is while we were in the nuclear medicine department, Linda spotted a rolling table that was the perfect size for Mattie. So she asked to borrow it. We literally rolled this table around with us everywhere! You had to see us. I was pushing Mattie, Linda was pushing the toy cart, and Ann was pushing this desk like table. No wonder people know who Mattie is at the hospital! How many seven year old's travel with a caravan?!

After the bone scan, we headed directly to the CT scan. We had to wait a while for this scanner, because Dr. Synder (Mattie's oncologist) ordered a refined 1.5mm cut scanner. It shows much more details slices and pictures of the tumors. I am thrilled Dr. Synder ordered such a scan, and I wish we had such scans in January and March. This may have given us more details about the tumors. I am not saying that our course of action would have been different, but to me knowledge is power. While waiting, we were in the hallway of the CT scan department, and Mattie was playing with his table, a basin of water, some boats Linda gave Mattie, and some pennies Ann gave him. They started playing a hide and seek game with pennies. Mattie would hide the pennies somewhere on the table under the basin, his Legos, etc, and we had to find them. This occupied him for a while, in the mean time, Linda was putting a lot of pressure on the CT scan folks in order for them to honor Mattie's appointment time. Her persistence was greatly appreciated! Mattie did just fine throughout the CT scan, but by the time it was over, he was STARVING and very uncomfortable.

Mattie ate an entire bag of teddy grahams once the scan was over, and I have no doubt watching Linda and I transport Mattie, the toy cart, and the table/desk was a sight. Ann met us back in the clinic and bought lunch for all of us. Literally the stress I was feeling, eating wasn't top on my list, but I appreciate Ann taking care of all of us today. While I was awaiting the scan results, Mattie had a full afternoon in clinic. Robbie, one of our favorite volunteers, came to visit and play with Mattie. Robbie was a great diversion for Mattie because Mattie was beginning to fixate on pain and developing chills. But we all managed to redirect him and the chills went away and he calmed down. Later in the afternoon, Jenny (one of Mattie's art therapists) and Dr. Biel (Mattie's psychiatrist) had a play session with Mattie. They literally acted out an operation at the art table, and Mattie was in control and was the surgeon. Mattie clearly caught on fast and told them he knew why they were doing this since he is going to have lung surgery. Can't fool Mattie! The play session went very well. Jenny hammed things up as the incompetent surgeon and Mattie played the focused, determined, and skilled surgeon.

I snapped a picture of Jenny and Mattie working together. Basically in this scenario, Jenny was a surgeon. A patient (in this case the SKELETON) would come to her and she would try to operate and correct the presenting problem. However, she would always screw things up, such as she would attach an arm where a leg should be and the leg was where the arm should be. Mattie was the brilliant surgeon who would always be called upon in the end to correct all of Jenny's mistakes. He was so popular that he could never go on vacation, because his patients always needed him. Throughout the play session, they talked about bone bugs, bugs in the lungs, and the recovery process. I am very happy that Jenny and Dr. Biel began to process this major surgery with Mattie today. I am also happy that Peter and I started the dialogue last night with Mattie. I felt this news had to come from us first.

In between mock surgeries on the skeleton, Mattie was also coloring flowers. Here is one of his lovely creations now hanging in my kitchen!

Dr. Synder came to visit with me today and delivered the results of the scans to myself and Ann. Ann was the brave soul who came into the room with me. Dr. Synder let me know that the bone scan results appear clear. There are NO new bone tumors. However, she said there is a lesion on his left femur (the good leg!) that they are monitoring. However, Mattie presented with this lesion back in July of 2008, and they suspect it isn't osteosarcoma. She then told me there were NO new tumors present in the lungs, as revealed by the CT scan. However, the four lesions in the lungs that were detected back in December of 2008, have now doubled in size. The tumors are now 8-9 mm in size. So in essence, we now know that the lesions in the lungs are definitely osteosarcoma. We also know that the intensive chemotherapy that Mattie has been on isn't working at combating the bone cancer in his lungs. Sure I am thrilled that NO new tumors presented today. If there were, then I have a feeling we would be talking about palliative care. There wouldn't be any reason to continue treating him aggressively. So I am happy we are not faced with this exact issue. However, today's news hit both Peter and I very hard. Because we are faced with two decisions. One, we can either continue to treat him aggressively and remove the lung tumors through surgery, or two, we can avoid surgery and treat him palliatively through radiation, knowing that this most definitely won't achieve a cure. Dr. Synder said this is a personal decision. I certainly can appreciate why some families would stop the treatment now. Mattie's situation is grave, we know standard chemotherapy doesn't work, and our options are limited. Sure there are trials we could potentially get into if Mattie relapses, but how much are we willing to put Mattie through? I don't know the answer to this yet, but I do know neither Peter and I could live with the fact that we could have done something such as the lung surgery, and did not try to reach a cure. So needless to say, our plan is to still do surgery. When you have a choice between death and a chance for life, seeking out life is the only option. But I can understand why other families may not choose this option, because with it comes more physical and psychological pain, with NO guarantees! If we are not living hell on earth, then I don't know what you call this!

Here is the simple fact. We are thrilled that no new tumors are present, but when this is your child, hearing anything less than completely 100% positive new is devastating. I am no physician, but at this point I might as well be. I know that having tumors not responsive to standard chemotherapy is not a good sign, and I can't help but wonder what microscopic disease is still present in Mattie's body. I think the only thing today that would have truly made me more comforted is to hear that the tumors remained the same in size! This would give me some sort of hope that perhaps we had a handle on this disease. If that is possible with osteosarcoma! I think the next phase of Mattie's treatment will be challenging for Peter and I. Why? Because we have to now reinstill hope in ourselves. We can't buy into the surgery and try to reach for a cure, if we have doubts. This is where both of us are tonight, with heavy hearts, and yet trying to stay strong so that Mattie continues to be happy and focused on fighting the "bone bugs!"

As we head into Saturday, Mattie is having an official birthday party with some of his close buddies who are very familiar with his condition. Mattie is looking forward to this and of course to his sleepover at Ann's house. In a way this form of happiness couldn't have come at a better time.

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I was glad to hear that Mattie managed to get somewhat sorted out now that he is back at home. As usual, you did a great job with the news about the surgery and he took it like the trooper that he is. I think your use of visuals and hands on is truly inspired and speaks volumes for your skills as a therapist. Many of us are therapists and we do pretty well with our clients but fall short when trying to apply those skills in our own families; I have to say that you do an amazing job of combining the two. Dan sounds like he will be a great addition to the "family" of assistants that will help Mattie regain his physical, emotional and mental equilibrium over the summer and fall. You definitely made the right call leaving him and Mattie to bond without your presence; I have to say I admire your courage as I know many parents would be unable to leave their child alone even for the child's benefit in this situation. You know how to push Mattie back toward the independence he both wants and fears. I hope the scans and tests all go well and that the surgery goes as planned and scheduled."

Thursday, June 4, 2009

Thursday, June 4, 2009

Quote of the day: "Endurance is the crowning quality, And patience all the passion of great hearts." ~ James Russell


Wednesday evening was challenging for Mattie. He came home from the hospital and basically needed morphine every four hours. I was so happy when the day was over because it was my hope that Mattie would reset today, which he did. I told Mattie last night that Dan would be coming over to play with him. Ann connected me with Dan, and as you many of you know, Dan is a student at Georgetown University.

I woke Mattie up this morning because despite opening up his curtains and making a ton of noise, he wasn't stirring. Mattie woke up in a good mood and ate his breakfast. When Dan arrived Mattie was shy at first, but as Dan began talking with Mattie, Mattie became animated. I was unsure how Mattie would do today based on his day yesterday, but I am happy to report that Mattie had a very good time with Dan. I explained to Mattie that Dan wants to work with him this entire summer, and Mattie's response was "great!" I think Mattie is craving a male buddy, since this year he has been surrounded by women. Wonderful women, but clearly we play differently. So I am happy that Dan and Mattie are connecting.

While Mattie was with Dan, I decided to leave the house. For two reasons, the first is it is hard for someone to bond with Mattie if I am present. So I knew I had to remove myself from the situation today. The second reason was Ann got a hold of me yesterday and invited me out. Before I met up with Ann today, I went to the grocery store. There is a place I haven't been to in a long time. So much so that the store I used to go to had been totally remodelled. I guess a lot can happen in 10 months! I also had the opportunity to stop for tea and lunch, but instead of eating inside the restaurant, I literally sat in my car. I am sure that sounds totally strange. But it was a glorious feeling not to hear anything, no machines, talking, or any other distractions. Since it was a rainy day, I couldn't think of a better place to escape for silence! While having lunch I received calls from Catherine (our case manager) and Debbi (our sedation nurse angel) about Mattie's scans on Friday. Sure it is their jobs to check in on the process, but it is a comforting feeling to know they are with us during this scary time. One scan is hard enough to contend with, but Mattie has two scheduled for tomorrow, and MORE next week. So it is two weeks of torture and then additional torture with another surgery.

After lunch, I met up with Ann and we went for a pedicure. It was very nice to sit still, have my nails done (which somehow can perk you up when you are feeling not particularly happy with how you feel), and to chat with Ann. When Peter and I reflect on our blessings for this year (which are FEW), Ann is definitely at the top of your list. For several hours today I felt somewhat normal. Maybe because I wasn't in a hospital, dealing with caregiving demands, or playing non-stop. Either case, four hours away spent with a special friend was good medicine for me.

When I returned home, I found Mattie and Dan playing together, and Dan created a new character called "Mr. Hand." Mr. Hand is not unlike Mattie's character, Pinkie, who is destructive. Apparently Mr. Hand (or Dan's hand under a blanket) destroyed Mattie Land and Dan Land was completely wiped out. Mattie was very much into this play scenario, so much so that when Dan left, Mattie and I continued the play. During our play scene, Mattie's tent was a boat, and he was the captain and I was his assistant. We fought off FOUR pirates. I think we were quite successful! I hope you like the names we gave our pirate captains: Pirate Revenge, Pirate Selfish, Pirate Bad Guy, and Pirate Cry Baby! I personally loved playing Pirate Cry Baby! This poor soul cried over just about anything!

As we were playing, Peter arrived home from work and heard me sobbing, while playing Pirate Cry Baby. I am sure Mattie and I looked like quite a pair. As the evening wore on, Peter and I decided to tell Mattie about his surgery. Too many people are talking about the surgery now, and I don't want someone else to address this with Mattie before us. In fact, I had the surgeon's office call today and left a message on our answering machine about Mattie's surgery. I am sure he heard this message! I also know that the social support staff at the hospital want to start working with Mattie to prepare him for the surgery, but they have been waiting for me to make the first step. So I am happy to report that in usual Mattie fashion he took the initial news very well. Peter and I were honest. We started out by commending Mattie for the wonderful job he has done at fighting off the bone bugs. We told him that he was strong and brave and this has helped him get closer at winning the battle. However, somehow because he is so tasty, a few bone bugs escaped and landed up building a new home in his lungs. I told him that we caught this early, because the homes are VERY small, unlike what Dr. Bob had to remove from his arms. We told Mattie that there would be an incision in his chest and then with two balls of clay, I modeled the two lobes of his lungs. I showed him that small bits of clay would be removed from each of the lobes during surgery. Mattie's main concern was that all his lungs would be removed and then he wouldn't be able to breathe by himself. That seemed like an intelligent question and fear. But the clay model helped him to see that only small amounts of lung would be removed, and the rest of the lobes would remain in tact. He accepted that. We continued to talk and told him that he would have tubes coming out of his chest, similar to the tubes Dr. Bob put in his limbs during the previous two surgeries. Mattie had NO recollection of those tubes which means to me that his pain was managed fairly well, and he was knocked out for those initial days when the tubes were in. Peter and I also talked about pain and recovery time. We did not dwell on it, but wanted to get him to understand that he may not feel like himself initially. In all reality his response was a riot. He said that if there were bone bugs there, then they would have to come out. He also said that this meant he wouldn't have to do physical therapy, and he was happy about that! Unbelievable! However, I corrected that myth, and told him once he recovers physical therapy is starting up again, because he is going to walk if that is the last thing I ever accomplish!

I then started to talk about the near future for Mattie. I told him that his main goal is to get better and recover. I told him that would take most of the summer, and that toward the end of the summer and into the fall, we will be doing intensive physical therapy. I explained to him that he most likely won't be going back to school in the fall. He was actually upset by that notion. But between his lack of mobility and his compromised immunity for six months post chemotherapy, it makes no sense to send him to school. I also can't even imagine sending him to school wearing a broviac. I am sure other kids do it, but I just couldn't have a minute's peace if that happened. My goal, God willing, is to send Mattie back to school in January of 2010. So say a prayer that such a goal is even reachable.

This afternoon, we had a visit from my friend Sara. Sara dropped off a lovely dinner for us. Thank you Sara, we loved it, and I appreciate the lavender candle and your very meaningful card. After dinner, Mattie took his vitamins with ice cream and he is back on a Karo Syrup routine to address his constipation. Mattie and Peter set up a huge car track in the living room. It is simply incredible. I just finished cleaning up the living room earlier this week, and put away the huge train track and dinosaurs taking up precious real estate. But now forget it, I am back to being unable to move again in our living space. I took a picture of the two racing buddies tonight! Do you love Mattie's pink socks in the picture? Mattie refuses to wear socks and his feet were so cold today, that I took my socks off, and he did not refuse my socks. I guess because they were prewarmed for him.



As we head into Friday, Mattie and I will have to leave the house early tomorrow, so that we can go through Georgetown Hospital admissions and then check in for a bone scan and CT scans. I am very fortunate to have two people with me throughout the entire process to help both Mattie and I. Linda and Ann will be with us tomorrow, and they both know how stressful such a day is for all of us. I am grateful for their steadfast support, because sitting with someone through a scan and while you wait for the results of a scan is not for a the weak of heart, mind, or spirit.

I appreciated Lauren's (a fellow osteo mom) posting to the blog last night. This response is addressing her posting. I wanted to comment on the fact that Mattie's next surgery will be done at Georgetown University Hospital, where he received his other surgeries and chemo. Though Mattie will not be cared for by the same outstanding HEM/ONC nurses (who I absolutely LOVE!), he will be recovering in the PICU. The PICU is no stranger to us. We know many of the talented PICU nurses (who cared for Mattie through his first two massive limb salvaging surgeries), and they have observed us over the past 10 months in the PICU, for this is where Mattie also received his chemo. So in essence the staff we will be working with and the unit we will be recovering in is the SAME. In addition, the nurse manager for the PICU is also assigning us a HEM/ONC nurse in addition to a PICU nurse post lung surgery. Mainly because the HEM/ONC nurses have become part of our family, and their social and emotional presence will be extremely helpful through this recovery process. Though I hate that Mattie has cancer, I truly feel that Georgetown is making every effort to help us through the next hurdle. Also for any one who has spent a lot of time in a hospital knows, the nursing staff is crucial toward recovery. After 10 months at Georgetown, I would say that we have established a wonderful working relationship with our nurses and I am so happy we do not have to leave Georgetown at this point to learn how to operate in a new hospital system. I neither have the energy or where with all anymore to do this.

I would like to end tonight's posting with three messages I received today. The first one is from my friend, Charlie. Charlie wrote, "No one can imagine what it is going to be like when setting off to treat a child who has cancer. I think it is much like Columbus' voyage to the new world. You set off thinking you have some idea of where and what you will find and how long it will take to get there and then discover that all of your beliefs are wrong. It isn't India, it took much longer than you expected and there were some horrible disasters along the way. That's how it seems to me; you've found some places to rest (thank goodness for friends and support staff) en route to the destination but for the most part, you spend your time on the ocean, unsure if you have the right direction mapped and not at all sure what you will find if and when you get there. This is every parent's nightmare; to put your child through incredibly painful, trying medical procedures without any guarantee of outcome and knowing that you cannot take this on yourself but that your child (much too young) has to find the stamina to face and come through it. I so much admire your steadfastness, determination and unwavering love for Mattie in the face of all this; it takes very special parents to be able to do this. I know that you are brokenhearted about Mattie's issues with the pain medications; however, all you can do right now is put this aside until after recovery from the next surgery and then find the best way to deal with it. This is not a problem that can be attacked right now and you need all your energy and efforts to go toward getting Mattie through all the pre-op tests and the surgery."

The second message is from my friend Susan S. Susan wrote, "I don't think you will ever know how much the 3 of you (or as we call y'all at our house "the holy trinity" { no insult intended religiously speaking}) have impacted so many lives in so many ways. The ripple effect of how you are living (OK existing in) your life, sends out ripples to all of us involved with you in any way. Your thoughts and actions expand outward to effect other's lives, who in turn will add to the "ripple" with their thoughts and actions. You 3 are a powerful and changing force. I don't know if you can find any comfort in this right now seeing as how you are on the brink of exhaustion, physically, mentally and emotionally. But hopefully somewhere down the road may you bask in the blessings you are allowing the rest of us to receive."

The third message if from my friend and colleague, Susan H. Susan wrote, "Just wanted you to know that I appreciated reading your article in the Advocate. After reading the blog daily since its inception, it was nice to once again be able to look at the "big picture," the summary of the past months, that you, Peter and Mattie are living. It's just unimaginable how much daily grief can fall on a family, but I am very glad that the two of you are Mattie's parents (no one could do it better) - you're doing a fantastic job of caring and advocating for Mattie, and of informing "outsiders" what this type of daily living is really like. I will reiterate what I said a few months ago - this is your current form of educating others and you are reaching thousands of "students" in the world instead of dozens in a classroom. Thanks so much for taking the time to blog - it's such valuable information, particularly for us mental health professionals as we work with others who are compromised by severe medical issues in their families."

Wednesday, June 3, 2009

Wednesday, June 3, 2009

Quote of the day: "There are two ways of meeting difficulties: You alter the difficulties or you alter yourself to meet them." ~ Phyllis Bottome

Just when you think things can't get any worse for us, something else occurs, and sends us spinning. The day started out fine. Mattie seemed somewhat hungry and in good spirits. In fact, Mattie even helped me in the kitchen by making homemade waffles. He was on the counter, next to me pouring ingredients together and mixing them. We had a nice time cooking and eating. I snapped a picture of Mattie on the counter, and you can see he was animated and happy!

However, this good time was very short lived. When Mattie learned that we had to head back to the hospital for a meeting, he wasn't happy. Mattie made getting ready today very challenging for me, and by the time we were headed out the door for the hospital he was complaining of all sorts of pains. He developed the chills and a wild headache. He was shaking and had the goosebumps. When I got to the hospital, instead of waiting for the meeting to take place, I went directly to the clinic and met up with Dr. Gonzalez. Dr. Gonzalez was extremely helpful today. She assisted me in getting Mattie a clinic room and she even changed the linens on the bed herself. She observed Mattie for three hours and monitored his blood pressure and temperature. However, the scary part is he did not have a fever or ANY chills the entire time he was in clinic. While he was being observed, Jenny and Jessie stayed with Mattie so that Peter and I could attend the pre-surgical meeting.

When we entered the room, the team was already there. I would say there were about 15 people in the room including Dr. Alfred Chahine (the surgeon), Dr. Kristen Synder (Mattie's oncologist), Nan (the nurse from pain management), Dr. Keisha Bell (an Intensivitis), Toby (the nurse manager of the PICU), Tricia (one of Mattie's HEM/ONC nurses and the Charge of the PICU today), Katie (one of Mattie's HEM/ONC nurses and a HEM/ONC nurse educator), Linda (our Childlife Specialist), Denise (our Social Worker), Catherine (our Case Manager), Anna (Mattie's physical therapist), Jennifer Chaiken (a PICU nurse educator), Meghan (a HEM/ONC resident), and Amy (a HEM/ONC resident). The team had convened an hour before we showed up to work on the logistics of things and present a united plan. After we arrived the team spent about another hour with us answering our questions and talking about pain management for Mattie's surgery. I was very impressed with the team's willingness to work on these details with us and to address and answer all of our concerns. Dr. Chahine is very gracious with his time and understood our emotional concerns for Mattie. I left the meeting with several things floating in my head thought. One of which is what happens if the epidural (which will be placed into Mattie's back during the surgery) doesn't work and doesn't provide relief for Mattie's pain post surgery? Apparently this could happen. We talked about other pain management options that will be used if the epidural doesn't work. But that alone made me nervous, because the other option is IV narcotics (and Mattie has been taking plenty of those lately). The second issue which I brought up was Mattie's current physical condition, which is weak. I remember when Mattie's buddy, Brandon, had surgery after his chemo was done, that it took Brandon a long time to heal and feel better. This has always plagued me, because Mattie has been on chemo for 10 months and has already gone through two major surgeries, so from my perspective Mattie's body is very compromised. So my question today was does Dr. Chahine expect Mattie's recovery to be HARDER because of his compromised immunity and weakened state than if he was performing this surgery on a child who hasn't gone through chemo? His answer was YES. He agreed that Mattie is in a fragile place, and it is also quite possible because of Mattie's osteopenia, that when the surgery is done some bones will break because of the brittle nature of Mattie's bones right now. So though I left the meeting with the feeling that we indeed had a team working on this, I also left the meeting feeling rather helpless. No wonder I am having a hard time breaking the news to Mattie about his surgery! He is going through hell now, and adding another major surgery on top of his current state could just about send all three of us over the edge, and I don't say this lightly.

Mattie's emotional state now is fragile. On top of his fears and anxieties associated with his illness, it was very evident to Peter and I today that Mattie may be developing the chills and other pains as a way of seeking and receiving pain medications. He is savvy and on some level he knows if he acts a certain way, he will be given certain medications such as demerol or morphine to combat the symptoms. While Peter and I were at the meeting, Jenny, Jessie, and Dr. Gonzalez reported that Mattie was calm and engaged in the movie he was watching. As soon as Peter and I walked in the room over an hour later, he became unglued. He showed all the signs of being very anxious. He was clingy and was very upset that we had left him, despite the fact that he knew where we were. From that moment on he started to become very agitated, said no one was helping him with his chills while we were gone, and demanded medication through his central line. In fact he was screaming! Dr. Gonzalez came in and observed this whole scenario. We all tried to reason with him, but Dr. Gonzalez could see there was no turning back and calming him down. So she rationalized with him. She said she would give him IV morphine for his "pain" but that he had to understand that he couldn't get IV morphine at home. At home, I am allowed to give him morphine orally, which is less concentrated. Once Mattie learned he was getting something through his IV, he calmed down and moved on, and continued to watch a movie as if nothing ever transpired. Of course, Peter and I felt like we were hit by a storm. Another storm! We went out in the hallway and spoke to Dr. Gonzalez. She explained to us that she has seen many of her patients develop dependencies to narcotics while being treated for cancer. She felt that this was what we were seeing today. However, there is not much we can do about this right now, since Mattie will be headed to another surgery soon and will be pumped up with MORE pain medications. However, Dr. Synder (Mattie's doctor) and I discussed the possibility of using Methadone (is a rigorously well-tested medication that is safe and efficacious for the treatment of narcotic withdrawal and dependence) to assist Mattie with this problem once his surgery and recovery are completed. I can't tell you how sad we are today. Not only do Peter and I have a son with cancer, but we have a son who now has mental health issues, including drug dependence. It is all a parent's worse nightmare, and it is happening at the young and innocent age of seven. I always tell my students that under just the right circumstances anyone can develop a mental illness. Mattie's story illustrates this perfectly!

After Mattie received the IV morphine, he felt better. We brought him home, but he has been edgy and clingy all evening. He is not giving Peter or I a second. At the moment, Peter removed me from the room Mattie was in, so that I could get a break, but I can hear Mattie through the door and it is unsettling to listen to. So I am not upbeat tonight, but realistically see that things are going to get much worse before they get better. The scary part is to me we have reached the low of the low. It is funny, Dr. Chahine told Peter and I in the meeting today that there would be NO way Mattie will go through the recovery process from lung surgery without being in any pain. He wanted to warn us, and with that I told him that Peter and I live each day witnessing Mattie's pains, believe me we are experts on seeing a child in pain. I don't wish this upon anyone, it is a special kind of torture that wears on us constantly. However, what other choice do we have? If we want to give Mattie a possible chance for a cure, this is what we have to do, but I now see what Sloan Kettering was talking about (since they advised Peter and I in the fall NOT to treat Mattie's case aggressively). Putting your child through such intensive treatments is harrowing, and of course the real killer is you don't know if it will even be effective.

As we head into Thursday, Dan (the young fellow who is a Georgetown student) will be coming over to play with Mattie. I am hoping this is a good interaction for Mattie. In addition, last week Ann wrote to me and said she wanted to have a sleepover for Mattie this weekend, so that Peter and I could get a break. For many months now, either Peter or I have spent the night with Mattie. We are unable to leave him alone since he is on IV hydration at night. Peter and I rarely have a peaceful moment together, and I think Ann wanted to try to make this happen for us this weekend. I am truly touched by her kindness and love for Mattie, but of course in his current state, I worry. The irony is if Mattie were healthy I wouldn't even conceive of a sleepover, since I feel he is too young. But at this point, anything normalizing and being with other children is healthy and I welcome these moments for him. I feel like Ann lives Mattie's treatment with us, which provides a certain level of trust and comfort to me.

We would like to thank the Ferris family for a wonderful and very generous dinner tonight. It was the bright spot of our day! Thank you for your incredible support!

I would like to end tonight's posting with two messages I received today. The first one is from my friend, Charlie. Charlie wrote, "You are a woman of incredible patience. To spend a whole day playing with representations of something you intensely dislike, that is the definition of a dedicated mother. I know how much you hate bugs and to spend the day with hundreds of fake ones, well, that's definitely love! I am glad Pete was able to come up with a suggestion for getting Mattie outside with his bugs at the end of the day. Having to be an all day playmate is tough, having to spend a beautiful day inside the house just makes it harder. I know these next two weeks leading up to the surgery are going to be hectic but try to catch whatever rest you can; I suspect that post surgery will be even more stressful for the first few days at least and so whatever little extra you can do for yourself will pay dividends in the long run."

The second message is from my friend and fellow SSSAS mom, Tanja. Tanja wrote, "Hats off to you and Peter for your stamina and continued understanding for Mattie. I am sure I would have lost it many times if I were in your shoes. You and Peter continue to amaze me. Both of you are sleep deprived to infinity and beyond and you still manage to keep your cool with Mattie and make important medical decisions. He could not have any better parents. You continue to support him and sacrifice your own needs - especially the need to have adult social interaction. I am also in awe of Mattie. Despite all the treatments and the terrible side effects he is still a tower of strength. No adult could tolerate what he does with so much patience and continued stamina. No matter how bad he feels, it does not take him very long to rebound and be a bundle of endless energy. Although it is stressful for you and Peter, I think Mattie is entitled to his times of frustration and anger. Part of that is that he has no other release of his own stress and anxiety but to lash out at others or to withdraw. These are his coping mechanisms and they work for him! An adult in his situation would scream and complain and ask for drugs to be in lala land just to be able to cope. In my mind Mattie is getting only the minimum amount of medicine to help him deal with the side effects of his illness and medicines - thanks to you and Peter. To the outside world Mattie's behaviors seem like major tantrums but once you know Mattie, you understand that that is his way of dealing with his fears and stressors. While these moments are daunting - to say the least- they are only temporary. Once Mattie has recovered from his surgeries and treatments, he will be much more social and outgoing again. So, stick to your guns and continue to do what you know is best for Mattie no matter what others are saying to the contrary!"

Tuesday, June 2, 2009

Tuesday, June 2, 2009

Quote of the day: "Each day of our lives we make deposits in the memory banks of our children." ~ Charles R. Swindoll

Mattie was tired by 9:15pm on Monday. He requested to go to bed. I couldn't believe that he was actually tired at an appropriate hour. So we accommodated him and got him ready and into bed. However, it was too good to be true. He was in bed but he couldn't fall sleep. He finally went to sleep at 2am. Somehow whatever pains Mattie seems more pronounced at night, and he is unable to go to sleep until he receives Morphine. Needless to say I was getting frustrated with Mattie by 2am. That may not make sense to our readers, but picture yourself so exhausted, and yet knowing that you will be awoken throughout the night for bathroom runs, and then have to perform this whole routine the next day and the day after that, indefinitely. This caregiving routine has no end in sight, and that is hard enough, but add in non-stop playing, and I am basically finished.

Mattie slept in this morning, and as he sleeps, I try to take advantage of that. When Mattie woke up, we had a busy day together, despite never leaving our home. The isolation of not leaving our home reminds me of Mattie's newborn days. I remember these times of isolation very well, but now the isolation seems much worse because I am not raising a healthy child and we don't know what the future holds for any of us. Mattie had a hard time figuring out what he wanted to do today, but fortunately my lifetime friend, Karen, sent Mattie a big box of BUGS! All kinds of plastic bugs. Bugs that grow when they get into water, glow in the dark bugs, and even baby bugs. It was the perfect gift for Mattie and it occupied us the ENTIRE day. We washed the bugs, classified the bugs, you name it, because we did it. We even ended the day by allowing the bugs an opportunity to swim in a kiddie swimming pool. The pictures don't do this collection justice, but when I tell you we are surrounded by hundreds of bugs today, I am being literal!

Left: Mattie with all his bugs around him. He really loved the bee, which is perched on the pink basin.

Right: A basin filled with growing bugs!

Left: Mattie, his aliens, and a pool FULL of bugs!

Right: The pile of bugs drying after their swim!

Peter checked in with me periodically today because he knew it was going to be a long day for me without any distractions. Mattie wanted to play and stay home, so we never got outside for fresh air. When Peter arrived home after work, he found me trying to inflate the minipool that Tanja gave Mattie. I am sure I looked like a sight, because I resorted to using a bicycle pump. We dragged the pool outside and this forced Mattie to come outside and get fresh air. He had a ball playing with the water and his bugs, and this gave Peter and I a minute to eat dinner. We want to thank the Katcher family for a lovely dinner. Despite Ann giving me a very clear dinner schedule, I am unable to keep track of the days of the week. So I apologize for thanking the wrong people for certain dinners. Thank you Tanja for dinner on Sunday, and Mirela for dinner on Monday! We appreciate all the continued support!

I was determined to find a way tonight to administer Mattie his calcium/vitamin D and phosphorus supplement. Peter and I have been trying all sorts of things but this vitamin solution tastes just awful. So tonight I mixed it with a small amount of vanilla ice cream, and Mattie ate the entire thing. I hope this is a trend. We are also having much success too with getting Mattie to wear his knee brace. This dynasplint weighs a ton and Mattie doesn't like wearing it, but he will wear it for a couple of hours a day, which is an excellent start!

As we head into Wednesday, we will be attending a pre-surgical meeting at 2pm. I hope this meeting puts my mind at peace, but I have a feeling that won't happen until all of this is behind us. If that can ever be possible. We will keep you posted about the meeting and certainly about the scan results on Friday. Friday's bone scan will enable us to see if there are any other tumors growing in Mattie's bones. I never even thought that was a possibility until this was presented to me, because if a bone tumor is found, then we are advised not to proceed with the lung surgery. Which clearly puts a whole other spin on Mattie's prognosis. So to say I feel a bit stressed out is putting it mildly.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I was ready to write, "it sounds like a typical day for Mattie" and then realized just how that sounds. A typical day, in the hospital, being infused, having a playdate in a hospital playroom with other ill children, having what is now almost a standard reaction to the medication and so on...this is so wrong! Mattie should be outside playing, running, enjoying his friends, going to school and so on. It shakes me to the core that I have come to think of this as a typical Mattie day. Peter, you are an amazing Dad and while one day this month is celebrated as Father's Day, you are an award winner every day as far as I am concerned. Vicki you said you were having difficulty getting back on a normal sleep schedule even though you desperately need to rest. How much harder it has to be for Mattie given that he has so much less of a normal sleep history to depend on? I agree that it will take a lot of time and effort to get everyone back on something approaching a normal schedule once the "acute" phase of treatment is completed. Just try to be patient and kind to yourself until you get to that point."

Monday, June 1, 2009

Monday, June 1, 2009

Quote of the day: "Where the determination is, the way can be found." ~ George S. Clason

We had a full agenda for Mattie last night which included taking his vitamin supplement (which is like eating chalk!), taking a bath, and performing a central line dressing change. Mattie did two out of the three! After taking his vitamins and having a modified bath, Mattie had it. He was exhausted! He wanted to go to bed and it was ONLY 10:15pm. I was shocked. Before Mattie could sleep, he needed Morphine to manage his stomach pain. However, as soon as he received the Morphine and was connected to his IV hydration, he literally fell asleep and we had to wake him at 10am today. We are trying to get Mattie back on a more normal sleeping pattern, but I have a feeling it will take some time to accomplish this, especially since we head back into the PICU within two weeks for surgery. How on earth did it become June 1? Here I am thinking I have so much time to prepare Mattie for this surgery, but before I know it, it will be June 15.

Peter stayed with Mattie last night so I could have another night of sleep. However, Peter and I both find that our sleeping patterns have been affected by living in a PICU. After 11 straight days of sleeping in the hospital, my body naturally wakes up every 90 minutes to two hours (in the hospital you are always on hyper alert, because someone is always coming into the room, and if not, then the IV machine is usually beeping and needs attention). In addition, I can't fall asleep until after 1am. Despite being home, getting much needed sleep doesn't come naturally to us. I know this is not a phenomenon unique to Peter and I. I remember Dr. Shad (the director of the ONC/HEM pediatric practice at Georgetown) telling me that there are well documented consequences to living life in a PICU, and this can be referred to as intensivitis.


Peter helped me this morning with Mattie. Peter woke Mattie up at 10am. Peter helped Mattie with breakfast and administered him his GCSF (a white blood cell growth factor). This was a great assistance to me, because I still had to get Mattie physically ready to go to the clinic and pack up lunches for us. Before heading to the hospital, we dropped Peter off at his office and then we were off. As luck would have it, we actually found a parking space easily at the hospital today. Finding a parking space at Georgetown is almost like winning the lottery. I was thrilled about something which should otherwise be so simple.

When Mattie arrived in clinic, he was greeted by Jenny and Jessie. In addition, two of Mattie's buddies were in clinic, Maya and Jared. Many of you may recall Maya. She is 8, and has worked on many projects with Mattie in the past, such as a train and a rainbow ceiling tile. Today Mattie, Maya, and Jared recreated the solar system using a cardboard box, model magic, and wire. It was very creative and I was SO impressed with how well they were working together. What I observed today in the clinic is what I have wanted for Mattie for many months now. An opportunity for him to work with other kids in a group setting. To interact, socialize, play, and connect.

I snapped some pictures of the finished product and also of the play that Maya and Mattie acted out about space aliens. Maya was the narrator and "evil" alien, and Mattie was the "good" alien. This was a hysterical play or should I say a musical!? They used the melody from Yankee Doodle Dandy, changed the words, and added space themed words, like Mars to the song.

Left: Maya, Mattie, and Jared creating their version of the Solar System.
Right: Maya and Mattie acting out their Solar System play.

Left: You can see how wonderful their solar system is in this picture. In addition, look closely. Mattie is wearing a clear glove on his hand (sitting on top of the box). The glove has two eyes and a mouth, and represents the good alien. Inside the box, you will see a big silver tin foiled object. That is the moon! I also love the red curtains in front of the box. They used the curtains to create a stage like production.

Mattie is NO longer neutropenic. His absolute neutrophil count is over 2000! So Mattie will not need to receive anymore GCSF! Mattie received two things today, one was Pentamidine. Pentamidine is an antimicrobial medication primarily given for prevention and treatment of Pneumocystis pneumonia. The second medication Mattie received was MTP-PE. Within 30 minutes after the administration of MTP was complete, Mattie developed rigors, or intense chills and shaking. Mattie needed to receive Demerol today to combat the negative side affects of MTP. In addition, to the shaking, Mattie also developed a fever! I am getting so used to this routine that I refuse to schedule anything on MTP days. I just know that chances are Mattie will have a reaction. At around 5pm today, Peter met me at the hospital and sat with me until Mattie was stable enough to come home. Having Peter around helped greatly. Before Peter arrived Jenny and Jessie helped me. Jessie made up a bed for Mattie, and Jenny found a movie Mattie really wanted to see, "Milo and Otis." Mattie made it through half of the movie, and then passed out. However, Mattie would periodically wake up complaining of intense stomach pains. So we are now monitoring when the pain occurs. I will be keeping a journal over the next couple of days to try to see if food causes the pain, etc.

This afternoon, Dr. Synder, Mattie's oncologist called me at home to follow up on Mattie's reaction to MTP. She told me in the MTP protocol it says that it is natural to have a reaction to MTP up to 8 hours post infusion. However, if reactions occur after 8 hours (like they did last week for Mattie!), that the symptoms are not due to MTP. Though I appreciate the protocol, I highly disagree with this finding. MTP is still so investigational, and I think it needs to be tested out on more children to make such a definitive statement. Dr. Synder told me if Mattie develops the chills tomorrow, that I will have to bring him back to the hospital and have more blood cultures performed to rule out other possible causes of such a reaction.

We have a busy week. On Wednesday we head back to the hospital, because Peter and I will be attending a pre-surgical interdisciplinary team meeting. It is during this time we will be able to ask questions and seek feedback about Mattie's surgery. My newest concern is that Mattie is osteopenic. If his bones are weak, is a sternotomy still a good surgical match for Mattie? Cracking through the breast bone sounds down right dangerous to me considering the shape of Mattie's bones. I have many concerns about this surgery, and I have got to get a handle on it before I begin talking with Mattie about it. Mattie then heads back to the hospital on Friday for a FULL day of scans: a bone scan and CT scans. Next week doesn't look much better, since we will be at the hospital on Monday, Tuesday, Thursday, and Friday for check ups and more testing. A light week no?! Got to love our time "OFF!"



We would like to thank Katcher family for a wonderful Greek dinner tonight! Thank you so much for these treats and for your continued support! As I write tonight's blog, Peter is playing with Mattie. I admire Peter for his creative ability and energy. I know he is tired, but he never gives up, and is a very devoted Dad. I feel like I need a permanent break from playing. Who knew playing could be so hard!?


I would like to share a message from my friend, Charlie. Charlie wrote, "It is pretty clear that you are at the end of your endurance. When even the small things, like going out to lunch turn into events that need to be "managed" it is much too overwhelming. Sometimes it must just seem as if there are no good choices anymore here. Stay home and try to entertain Mattie while trying to eat or go out and still have a need to entertain and divert him away from home. Either one would be difficult enough but when you have no energy left, it must feel like looking up at Mt Everest from about halfway up. Up or down it takes more energy than you feel you have right now. It doesn't sound like June will give you any recovery time; all these tests leading up to the surgery and then having to deal with the aftereffects of that will take everything you have to give. Unfortunately it sounds like both you and Peter have fuel gauges that are registering empty right now. I am not sure what anyone can do to help but if there is, I would tell you to speak up as you have a support network that is willing and able to assist. Take whatever you are doing down to the bare survival minimum until this is over; anything that doesn't have to be accomplished by you, should be handed off if possible."

I would like to end tonight's posting with a song Charlie sent me today. The title of the song is "Every Day" and it is sung by Rascal Flatts. I dedicate this song to ALL of you who continue to read this blog, contact us, and support us. In many ways, as Rascal Flatts sings about, Every day you save my life!


http://www.youtube.com/watch?v=YQyQst3iBB4

Sunday, May 31, 2009

Sunday, May 31, 2009

Quote of the day: "In spite of the six thousand manuals on child raising in the bookstores, child raising is still a dark continent and no one really knows anything. You just need a lot of love and luck - and, of course, courage." ~Bill Cosby

On Saturday, Mattie had a visit from his buddy, Brandon. Brandon and his mom, Toni, came by the hospital to visit Mattie and delivered a special and very unique gift. It is a preserved baby shark. Mattie is simply fascinated by this new addition, who we call "Sharkey," and I can definitely say that Mattie does not have anything like it. It is actually a wonderful way to learn about sharks and opens up a whole dialogue about these creatures. Brandon knows exactly what captures Mattie's attention, and I am SO pleased it is not a preserved BUG! I am sorry I missed seeing Brandon and Toni yesterday, I shall never forget the connection we have made with them at the hospital and I am happy our friendship continues on.

Left: I introduce you to Sharkey!

I had mixed feelings about bringing Mattie home last night. Clearly I was happy that Mattie's Absolute Neutrophil Count rose to 420 (which is still considered a neutropenic level, just not severely neutropenic ) and could be released from the hospital. However, I had concerns about managing his pain at home, and also from a strictly selfish standpoint, I was looking forward to having another night at home to catch up on sleep. But that wasn't meant to be, and it took me a while to come to peace with that, because it seems there is always something that arises that prevents me from being able to relax.

When we brought Mattie home from the hospital last night, he was actually very hungry. He landed up eating chicken and rice, and then at midnight wanted pizza. He is back to drinking milk, and it appears that his appetite is on the rebound, which is excellent. As I was changing Mattie today into clothes, I couldn't help but see that he is all skin and bones.

Peter tells me that Mattie finally fell asleep at 3am, but not until he received Morphine for his stomach pain. I continue to be concerned by this stomach pain, but we are following the GI physician's advice and flushing out his system. An x-ray showed that Mattie is very constipated, which I suppose would explain the pains. But frankly based on Mattie's output, I really question the validity of this finding.

When we woke up this morning, we decided what we all wanted to do together. Today was the last day my parents would be visiting with us, so Mattie seemed very eager for all of us to go out for lunch together. Before we headed to lunch, my mom and I took Mattie on a wagon ride/walk. You may recall that Linda gave Mattie this beautiful canopied Radio Flyer wagon. Mattie loves it! While walking, I gave Mattie my camera, and the following photos below are pictures Mattie captured from our wagon adventure.

Left: Mattie in his wagon!

Right: Mattie snapped a picture of some beautiful vincas.

Left: Mattie captured these lovely begonias along our journey.

Right: A picture of The Kennedy Center for the Performing Arts from Mattie's viewpoint.

Left: I had no idea Mattie snapped a picture of a motorcycle, but clearly this caught his attention.

After our walk, we convened at our home and then got into the car and drove to the restaurant.

We brought a backpack full of things to engage Mattie at lunch. However, eating with Mattie has always been a challenge, because food is not something that typically interests him. He has always needed constant stimulation to keep him engaged at a meal table. Because Mattie has been so sick lately, we haven't experienced a real meal together in a while. But today was just another illustration of the chaos in our lives. Peter sat next to Mattie and worked very hard at lunch to engage Mattie to eat and remain at the table with us. Under normal circumstances I can handle this, because this is part of the process of training a child about family time, the importance of meals, and the etiquette of being at a table. But I was in no mood for this today. I am too tired for any of this behavior, and instead of eating in peace, I found that I landed regretting going out. Despite how I felt, I know that Mattie did eat well and enjoyed being out, but his happiness continues to come at a cost to us. I guess what I am trying to say is that parenting is a hard, tireless, and never ending job in and of itself. Now in addition to one's parenting responsibilities, we must also factor in our intense caregiving role, living in a hospital, and dealing with a child who has a life threatening illness and it becomes way too much for us to take.

Tonight we have some major tasks in store for us. We have to give Mattie a much overdue bath. Since Mattie's surgeries, he has become afraid of water. Trying to bathe him is near impossible, but for his own health we have rationalized with him that he must take a bath tonight. In addition, to this nightmarish task, we also have to perform a central line dressing change, and get Mattie to take his vitamin supplements (which taste noxious!). So we will be having anything but a relaxing evening. As Monday rolls around, Mattie will head back to the Lombardi Center Clinic at the hospital and receive MTP-PE. Who knows what reactions we will get from this infusion!? The not knowing is so unsettling.

We want to thank the Maho family for a wonderful home cooked meal. You gave Mattie two of his favorite things, shrimp and pasta! Thank you also for the cheesecake! Much thanks for your continued support!

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Pete, I think this fits what you and Vicki both have in great quantity, courage and love (and of course patience). Negotiating with Mattie over the medication or supplements is the only thing that makes sense right now and as long as the prize come after (reward) rather than before (bribe), I think once the situation stabilizes you will be able to resolve much of this. I do have to say I am really impressed by what Mattie built; some of those Lego sets require the mind of an engineer to assemble them. I believe they are a great therapy tool and they are a large part of my play therapy toolkit especially when working with boys so you have it right there as well. Vicki, I know you needed another (actually several dozen) night's uninterrupted sleep but unfortunately that was not to be. I know you are relieved that Mattie's numbers are finally coming back up and that he is beginning to recover from this last round of chemotherapy. Remember you cannot take care of Mattie if you don't give some care to yourself. So let go of anything you can (let the laundry wait) and try to rest when Mattie does. At least at home you don't have the interns and the janitorial staff invading just when you drop off to sleep."