Saturday, June 13, 2009

Saturday, June 13, 2009 - 1 Day away from Lung Surgery!

Quote of the day: "You give but little when you give of your possessions. It is when you give of yourself that you truly give." ~ Kahlil Gibran

Mattie's grandparents came over this morning while I was in the shower. When I got finished getting dressed, I found breakfast already made for us. That was a major treat, NOT to worry about food. Barbara, Peter's mom, was feeding and playing with Mattie, and literally all I had to do was take care of myself. What a concept. So Peter and I took our breakfast outside on the patio, and I actually ate in peace, without constant interruptions and crises unfolding around me. Just that alone was a gift beyond proportion.

We then got Mattie dressed and headed over to Tanja's house. Tanja is a friend and fellow SSSAS parent. She invited Mattie over today to play with Katharina (her daughter) and Ann's children. In addition, Tanja's neighborhood was having a picnic and she invited us to this event as well. It was very nice to be included and to be able to participate in activities that were doable for Mattie. Before I continue though, I want to thank many of you who wrote to me this week and invited us to do things with you today. It was VERY special to receive such special invitations, and I know you wanted to make Mattie's last weekend out of the hospital special. This means a great deal to us, and it is my hope that in the future we can take you all up on your thoughtful offers.

When we arrived at Tanja's house, Mattie was introduced to Ginny, Katharina's paraquet. Ginny is a very social and family oriented bird. He instantly gravitated to Peter and spent a good amount of time on his shoulder and hands. However, Mattie was fascinated by Ginny, and really wanted him to sit on his shoulder. When it finally happened we just kept snapping pictures.

Left: Katharina, Mattie, Peter, and of course Ginny (the bird)

Right: Mattie and Ginny!

Mattie also had a fun time in Tanja's backyard. She set up a bubble machine for him, and he used one of the fly swatters from his birthday party last weekend to hit the bubbles. Mattie was then interested on going on a swing. He attempted to on his own, but then quickly got upset and preferred to do this on my lap. It is funny, Mattie always found swings intimidating, but after many wonderful sessions with Kathie, his occupational therapist, he grew to LOVE them. We are back to being fearful of swings again, which in a way is totally understandable, but in my mind is another indication of the set backs we are dealing with. Though in the grand scheme of this year, who really cares if he likes swings or not!?

Left: Mattie swatting at bubbles!

Right: Mattie and Vicki on a swing with Katharina pushing both of us. Katharina was very sensitive and caring about how she pushed us, and I really do have to marvel at the level of concern, sensitivity, and compassion I witnessed in all the children today.

Mattie and Katharina then went upstairs in her house and decided to build a blanket fort. However, this fort took on a life of its own. All the kids got involved, and it became the kids (the good guys) versus the parents (the bad guys). The kids all had flashlights and when they shone the lights on us, it would injure the bad guys in some way. For example, I would melt in a puddle every time they hit me with light. This game went on for over an hour. The kids had a great time attacking Peter, jumping on him, and horsing around. For a moment in time, Peter and I totally forgot about our situation and had a good time. The laughter was contagious and innocent.

Left: Katharina, Mattie, and Michael in the fort brainstorming their strategy of attack on the "bad guys!"

Right: Michael defending the good guys and capturing Peter.

Left: Peter needed to be taken down. He was like the captain of the bad guys today. So after Michael's attack, Abigail jumped on and finished Peter off.

Right: Michael and Katie (Ann's children) in the midst of the attack on the "bad guys."

After the monkeying around, we all headed to the community picnic held at Mattie's upper school campus. The same campus where the walk took place. It was a surreal experience going back to the campus, because all I could picture in my head was the walk, that amazing day and the feeling of incredible love and support. A day I shall never forget! In fact, there were several moms within the community who I DO NOT know, who came up to me today to hug me. Apparently they know about Mattie and read the blog. I was deeply touched. The kids had a good time at the picnic. They socialized, ate, and played around. However, I have two comments. On the way to the picnic (which was walkable from Tanja's house) the kids wanted to ride their scooters to the campus. But because Mattie is unable to do this, they all agreed NOT to do this but to instead walk. I don't know about you but that showed incredible maturity and sensitivity on their part. The second comment is at the picnic, Abigail and Katharina did not leave his side for one minute. Their loyalty leaves me speechless. Sure you could say that their parents influenced them to do this, but my gut tells me NO. This is just who they are, and they give me hope that such young people can think outside of themselves.

While at the picnic, Mattie, Abigail, Katharina, and Tanja went on a treasure hunt (for found objects around the campus). You would be amazed at what they dug up and considered treasure. Like a Starbucks cup for example. They compiled their treasure together and then sat on the field examining it!

Left: Abigail and Mattie hiding from the camera!

Right: Katie, Katharina, Mattie, and Abigail discussing the treasure. In fact, Katie and Katharina then decided to take it upon themselves to try to create a hunt for Mattie and Abigail when they got back to Tanja's house. It was very thoughtful and they truly got into the process.

When we arrived back at Tanja's after the picnic, Mattie, Abigail, Peter, and Barbara decided to check out Ginny. Mattie fed Ginny some treats and just had a wonderful time relating to the bird. In fact, while sitting near Ginny, Mattie stood up, and took ACTUAL steps. He did not even know he was doing it.

The kids then started to settle down and they watched a video together. However, by 9:30pm, they were all hungry again. So as they were sitting down at the table eating and chatting, I decided to snap a picture of Abigail. We have a running joke going. Whenever I want to take a picture of Abigail, she either hides or covers her face. My joke is how can such a beautiful girl not want her picture taken? I told her I will eventually get her when she least expects it, but clearly tonight wasn't one of my better nights!

Before we left Tanja's tonight, Ann and Dr. Bob got back from their trip. It was wonderful to have this homecoming with them. Ann brought back Seagull poop (really jelly beans) for Mattie from Florida. A major hit! My family wants to thank Tanja for opening up her home to us today and including us for an entire day into her life. It meant a great deal to us and provided some normalcy into our lives. What is so saddening is that this is how Mattie's life should be. Today shouldn't be an anomaly, but it is and most likely will be for many weeks to come now.

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "First, many thanks to Linda and Denise who helped so much on such an incredibly stressful day. Waiting for test results is hard at the best of times and the stress in this situation was magnified a thousandfold. This news about the scans makes you feel like a punch drunk fighter with blows coming in from all directions and no way to protect yourself or prevent them from connecting. This is incredibly difficult news made even tougher since there is no way to know for a while what you are really dealing with. Not many things are more stressful than uncertainty. I know we were all praying that the news would finally be good; that this surgery might be the last one Mattie needs to contend with, however it appears that may not be the case. I am sure you are not sleeping well with Monday's surgery on the horizon; please do your best to try to get some rest if you possibly can, you will need all your strength going forward. All I can say right now is that you have everyone's support with the surgery on Monday, all our good thoughts and prayers will be with you and we will all be waiting anxiously for news."

Friday, June 12, 2009

Friday, June 12, 2009 -- When it rains it pours! Or at least it does for us!!

Quote of the day: "I have always believed, and I still believe, that whatever good or bad fortune may come our way we can always give it meaning and transform it into something of value." ~ Hermann Hesse

Today was the kind of day (though I don't know why I am writing this, because more days than not are like this now) where you have to say to yourself, WHAT ON EARTH? Just when you think things have hit rock bottom in Mattie's condition, the floor drops from underneath us so that we reach an all time low. I can barely get a handle on Mattie's lung surgery on Monday, and then to learn more bad news today was enough to send me into a very negative place.

Our day began with a phone call from the hospital. Something was wrong with the echocardiogram machines, and instead of having an appointment at 2pm, they wanted us to come in as soon as possible. So I scrambled to get Mattie ready and I paged Linda. Linda responded quickly and rearranged her schedule to help me with Mattie. Before we left for the hospital, Peter's parents arrived, and we all jumped into the car together.

Mattie had both an EKG and echocardiogram done today. Both went smoothly, Mattie was brave and patient. Before I continue on describing the day, I first MUST stop and THANK LINDA! Linda has gone through every part of this testing process with us in the past and throughout this entire week. Yes in part this is her job, but it is how Linda does her job that deserves recognition. Linda can accomplish anything, and you would be amazed what one individual can do. The work of 10 people literally! I am not sure if Georgetown realizes how lucky they are to have her. Thank you Linda! Linda also found Denise (Mattie's social worker) and she asked Denise to sit with me as Dr. Synder told me the results. That was extremely helpful.

Once the testing was over today, the cardiologist met with me and told me that Mattie's heart looked healthy and great and there were no problems. When I arrived in clinic, 10 minutes later, the receptionist connected me by phone back with the cardiologist, who proceeded to tell me that there are some changes in Mattie's heart. Basically having to do with ejection fractions, which indicates the amount of pressure it takes to pump the heart through the chambers of the heart. Lovely! At first this upset me, but after the next set of news, I quickly put the heart and hearing issues aside, because these are all TREATABLE with medication. I have either come a long way or this is a sad commentary. When Mattie was healthy if you told me he had a hearing loss or issues with his heart, I would have been absolutely devastated by this. However, now, the only thing that truly gets to me is the unknown and the news of other things popping up on Mattie's scans!

After I spoke with the cardiologist, I then met with Dr. Synder (Mattie's oncologist) privately. Before she continued to talk with me, she called Peter at work, and put him on speakerphone so that both of us could hear the information she was sharing. It was a great idea in retrospect, because Peter asked some very intelligent questions. Not that I was paralyzed, but as soon as I could see us focusing on the fact that there was a "variant" in Mattie's left femur, I lost it. I participated in the conversation for quite some time, but as Peter kept talking, I kept getting more and more upset. I spent the next 45 minutes crying and talking with Denise. Dr. Synder and Denise both expressed the fact that it is never over for us, that we can't seem to get a piece of positive news, and that they can only imagine how hard this is for us. They both talked with me about the fact that we always have choices, that we can stop treatment at any time. I actually think this is my biggest fear, that we are going to run out of treatment options. After all, we are living the osteosarcoma nightmare. Mattie has multiple lesions to begin with (which is extremely rare), the cancer has metastasized to the lung, and now we have a potential suspect to watch in the left femur. Needless to say, you might as well have shot me through the heart today, because hearing this news felt that painful. I can assure you that there is a point where information overload takes over, and then the system (or one's brain) begins to shut down. I hit it today.

I asked whether this "variant" could be biopsied, but apparently it is not in an easy location to do this. Dr. Synder has consulted with Dr. Bob on this while he is away on business the last couple of days. In addition, the PET scan results did not show any activity in this left femur variant. Sure this could be a good sign (since tumors tend to uptake the glucose tracer), however, the variant could be too small to uptake enough tracer for it to be seen. Or the other possible theory is that this variant is osteosarcoma, and perhaps the chemotherapy killed the tumor (dead tumor wouldn't uptake glucose either). That sounds good in theory, but we have learned that even with 100% necrosis (where there is no viable tumor), the tumor must come out. The only definitive way to treat osteosarcoma in the bones is to remove the bone with the tumor, even if the tumor is dead. So I sit here and ponder does it make sense to do the wait and see technique, and scan Mattie in two months to see if this variant changes? I don't know! But I do know I HATE OSTEOSARCOMA! I think the military should forget creating toxic agents, and just find a way to develop osteosarcoma as a weapon. I can't think of a better torture.

While I was having this long meeting, Mattie was at the art table having a great time. He was playing with Jenny, Jessie, and his grandparents. By the time I got out of the meeting, Mattie was busy with Barbara (Peter's mom) and she was encouraging him to eat. Peter's parents bought me lunch, and I immediately left the clinic and sat outside for over 30 minutes to pull myself together.

At around 3pm, we left the hospital, and when I got home, I left Mattie with his grandparents for several hours, and went to visit Ann's parents in their assisted living facility. Ann's mom has become my friend, and when Ann is out of town, if I can escape to visit Mary (Ann's mom) I do. Today I use the word ESCAPE literally. Sometimes it is very healing to hear a friend's concerns when you are down yourself. It helps put things into perspective, and I find helping others in turn makes me feel better. I think I get so frustrated because no matter what I do, Mattie is still sick, and so if I can bring a smile into Mary's life, I feel it has been a successful day. I decided to bring some items with me on today's visit. I gave Mary a manicure, and I stopped to buy nail polish, newspapers, and foods that I know they like. Mary was so thrilled to get her nails done, and I bought her special lotion which I massaged into her hands and arms. She said she felt so relaxed and good. It is a gift to hear someone tell that to you! After her manicure, I sat with her as she had her dinner. Tanja came to visit Ann's parents too, so we all convened for a while to talk.

When I got home tonight, Mattie was energized and animated. He has a way of wearing through people easily though. We want to thank my cousin Donna for a lovely dinner, and we also want to thank JP (our neighbor) for bringing over Mattie's favorite foods! So we had an abundance of food tonight. Thank you all for this incredible support.

I would like to share three messages I received today with you. The first one is from my friend, Charlie. Charlie wrote, "Mattie is always full of surprises. Plan for the worst and he gives you his best, coming through like a champ. I know you had very little sleep on Wed night before the scan on Thursday and I am sure even exhausted as you are that you didn't sleep much better Thursday night waiting for the results of the scan today (Fri) so I hope you get the results early and that they are good. Once again, thank goodness for the help of special staff to get you through it all; I just keep wondering why after all this time and multiple admissions, the information can't be reproduced so that it doesn't have to be repeated over and over again. Sounds like a project for a hospital improvement group to take on. Mattie's continuing ability to handle all this speaks volumes about your parenting, keep following your instincts, you're doing the right thing for him!"

The second message is from Karen's (my lifetime friend) mom. Mrs. Fischer wrote: "You are doing the impossible -- all three of you -- bearing up under this impossibly stressful and scary struggle with the unknowable. Each of you has been heroic in your endurance all the while keeping your tender loving selves together. What can I say but that I will be with you in mind and spirit in the coming days. I am trying to figure out how I can wear the Mattie Miracle tee shirt -- we're not allowed to wear tees with printing on them in the office. But I shall find a way."

The third message is from my dear friend, Lorraine. Lorraine wrote, "Goodness. An entire year went by as President of your National Association, and yet the entire year was devoted to Mattie's illness, and now your Presidency is over. Wow, that is some statement about how this year has gone. I suppose you can't even begin to consider what's next for you professionally, until Mattie's situation stabilizes and your life calms down, that this is certainly the furthest thing from your mind right now! But, it still is an amazing statement about the year for you. Your ability to write seems to come from some other compartment -- because how else could you ever be blogging daily with such clarity of thought. There are times in the blogs when you find yourself in moments of deep nostalgia, reflecting on life, when which you write very gently and eloquently. To say you are a woman of many talents is quite an understatement! Not sure if I properly told you HOW many people at Mattie's March from GW talked about your amazing teaching skills and total dedication, how students felt you were the most caring teacher they ever had. Teaching is something you are blessed with and I hope you never give it up. I know from personal experience that you are gifted as a teacher."

Thursday, June 11, 2009

Thursday, June 11, 2009

Quote of the day: "May no gift be too small to give, nor too simple to receive, which is wrapped in thoughtfulness, and tied with love." ~ L.O. Baird

Mattie is very much interested in SpongeBob Square pants these days. Most likely because he knows I don't like it and because this is something I haven't let him watch on TV. Now that he has access to it, this is the hot item of the week. As I told you last night, Mattie took my kitchen sponge and transformed it into SpongeBob, and then gave Bob a washing. I snapped a picture of this process so you could enjoy the fun.

Mattie understood last night that he had a full body PET scan today and that he was going to get sedated for the test. He was very happy to hear that because sitting still in a confined chamber doesn't interest Mattie. I can't say I blame him. However, because he went to bed so late, I was worried and preoccupied all night with the fact that it would be hard to get to the hospital on time today. Normally I have no problem being late for appointments these days, but not scan days. Either you show up when you can get scanned or you miss the appointment. We had no wiggly room today, because we NEEDED the scan results before Monday's surgery. Needless to say all my worrying made me have another bad night of sleep and this did not help my mood at all day.

When I woke Mattie up this morning, he cooperated, got ready, and we headed to the hospital. Getting admitted for a pediatric PET scan is a funny (and I don't mean funny ha ha..) process at the hospital. Mainly because no two people give you the same instructions about how to get admitted for this test. In any case, we started out at the main admissions desk, went through that process, then went through day surgery admission (which is in another location), and finally we landed up in the PET scan department. The only reason we made it to the PET scan department in a timely fashion was because of Linda. Linda met us at Day Surgery and basically as always mobilized forces and helped to expedite the process. Thank God for Linda! I told her today that I know her job is to help normalize the hospitalization and illness experience for children, but she also helps the parents in incredible ways. Going through scans is hard enough, but with Linda, I am never alone, and I need this extra set of capable hands to balance Mattie so that I can answer questions from medical personnel and also have the energy to be strong and hold it together for Mattie.

Mattie had all his buddies helping him today. We had our favorite PET scan tech, Alex, working with us. Alex was one of the first techs we met at the hospital during the pre-sedation days, where scanning Mattie was down right impossible. The second buddy of ours, Debbi (our sedation nurse angel) was on the scene as well. With Debbi present, I just know a scan is going to go smoothly for Mattie. When Mattie is sedated for a scan, he goes on heart and oxygen monitors and wears oxygen cannulas (which delivers oxygen to his body). I guess what I am trying to say is sedating a child is not easy. It requires the presence of a sedation nurse and an intensivist (which is basically an intensive care physician) throughout the entire procedure and thereafter until the child becomes conscious.

Before the scan could take place, Alex has to inject a radioactive glucose tracer. Once this was injected into Mattie's central line, he had to sit very still for an hour, because areas of physical activity also attract the tracer. Lord knows we don't want the tracer to highlight anything other than what it is intended for (a tumor). So Linda and I had the challenge of keeping Mattie STILL for 60 minutes. Fortunately Linda has her bag of tricks with her. She pulled out her laptop, and Mattie watched SpongeBob and Veggie Tales clips. That worked beautifully. As the scan time was approaching, Linda had a special treat set up for Mattie. She played ABBA's Dancing Queen on a CD as the caravan brought Mattie into the scan room. I don't know if it did anything for Mattie, but it certainly made me feel better! Mattie handled the sedation process and the scan beautifully. I was very proud of him. Mattie debated with Debbi and he told her that he has powers to fight the sedation. We all laughed, because 45 seconds after the infusion of Propofol, Mattie was OUT!

While Mattie was under sedation Ann called me. Ann is traveling with Dr. Bob on business, but despite not physically being present, she was present today in spirit. I had three surprises today. The first surprise was that Mattie handled all of this like a CHAMP. The second surprise was that the testing process was only 30 minutes long. For some reason I remember a two long scan, but that is actually for a MRI and not a PET scan. So I was thrilled Mattie did not have to be in the scanner or under sedation for very long. Despite that good feeling, a part of me was praying for a two hour break. I hate to even admit that, because I wouldn't want anything to jeopardize Mattie's health. But the only time I have real down time is when Mattie is sedated. What a commentary.

I met Mattie once the scan was over and myself, Debbi, and Linda wheeled Mattie in a hospital gurney to the Lombardi Cancer Clinic to recover from sedation. To my third surprise, Mattie awoke VERY quickly from sedation. I have never experienced this before. He was disoriented, wanted to get up and was uncertain if he went through the PET scan or surgery. None the less, he pulled out of it quickly and Linda gave him graham crackers in the shape of goldfish because he was starving (he couldn't eat from midnight on until the scan was over). Mattie however, was shaking like a leaf, and I think the temperature in the room helped to contribute to this feeling. When Dr. Synder (Mattie's oncologist) came in to see him, she told Mattie he had to get out of the room. The room was too cold for him. He did not want to comply, but basically did because he was motivated to join the birthday party for Bridget in the clinic.

Bridget is another lovely young adult we have met through our clinic days. In fact, Bridget's dad came up to me today and gave me a hug. He said he admired me and if anyone can get Mattie through this it is me. That meant a great deal to me, and I am very fond of Bridget's parents. I also had the wonderful opportunity to meet Bridget's aunt, cousins, and sister today. So it was a nice celebration with family. It indeed took my mind off of getting PET scan results.

Mattie worked at the art table today and Jessie (one of Mattie's art therapists) kept Mattie busy for several hours. They did water play with a pirate playmobil set that Linda gave Mattie today. You can see Mattie blowing bubbles at the pirates in the picture on the left. I have a feeling everyone is encouraging Mattie to play with bubbles, because he will be doing a lot of bubble playing after lung surgery! After this activity, Mattie started working with clay, and is designing a sequel to the last big clay structure he created (which was a drive in movie screen featuring the character "big head"). While Mattie was playing, I was able to have lunch. I want to thank the Cooper's for bringing me lunch in the hospital today, and supporting me on a hard scan day. It is truly appreciated.

When Mattie and I got home later today, we played for several more hours. I told you the play of choice these days involves SpongeBob. As you can see in the picture on the right, Mattie and I worked on recreating scenes from SpongeBob. The yellow duplos represent SpongeBob's pineapple home, you can see SpongeBob standing in front of his home, and the blue looking creature is the snail character in the show.

When Peter arrived home from work, Mattie surprised him with a drawing that he sealed inside of an envelope. Mattie initiated this project on his own. Basically Mattie tried to draw a baseball stadium, and hand wrote the words, Go RED SOX! on the drawing. What caught my attention was the clarity of Mattie's handwriting, and the fact that he could spell words. This is definitely something I am not purposefully working on with Mattie. Yet it is naturally happening. Well that just caught my attention. Peter was thrilled to receive this special piece of art work.

We want to thank the Bartlett family for a wonderful and generous dinner tonight. We truly appreciate your continued support! After dinner we watched a Veggie Tales movie entitled, "Where's God when I am scared?" It is interesting that Mattie picked out this movie. We watched it last night too. He said he watched this movie at school last year, and when he saw we had it, it caught his attention and wanted to watch it. The moral and spiritual message in the movie was very moving and powerful, because in its own comical and witty way, it discussed and normalized fears. But it also empowered the viewer to understand that God is bigger than these fears, and he is always with us. Not that I have been closed off to God this year, but I do admit having my issues with understanding his plan. Some how watching this movie, which is intended for children was also inspiring for me. I have learned that I have little control over much in my life, and Monday's surgery scares me to death. However, I have to believe that God is with us and will help us through this horrific journey.

This evening Peter called Dr. Synder to find out the PET scan results. However, the results haven't been read yet by the appropriate person, so most likely we will have the results tomorrow. But waiting all day for me almost sent me over the edge. As the hours move on you start thinking the worst. As we head into Friday, Mattie will be heading back to clinic for pre-surgery blood work and then an echocardiogram to determine if there are any chemotherapy side effects on Mattie's heart. Dr. Synder did tell me that Mattie did not have to get hydrated by IV tonight. We are giving Mattie oral supplements now, which seem to help balance his electrolytes. I hope we can find a balance and move away from IV hydration at night at home altogether, because I can assure you it is impossible to get any sleep this way. In addition, Peter's parents are visiting us for the weekend prior to Mattie's surgery, and we will meet up with them tomorrow.

I would like to end tonight's posting with three messages I received today. The first one is from my friend, Charlie. Charlie wrote, "Another busy but good day overall for Mattie on Wednesday. I am so glad for the break from the hospital into a more "normal" routine of Mattie playing with friends and you having the chance to revisit an interest from an earlier time. Even the play that doesn't specifically address the surgery or Mattie's illness is critical both for his development and because every time he "outsmarts" the bad guys in these games, it tells him he can overcome whatever bad things come his way. I am sorry that Mattie feels himself to be different from his friends (but he is) and that he is disturbed by his bald head; I, like you, think he is cute with or without hair, but anything that makes a child different is difficult to cope with. Fortunately his hair will come back when the chemotherapy has ended and perhaps that will help him to see that with time many of his scars will fade. I hope that Mattie eventually sees his scars as I do, as the map of the battles he's fought and won and as medals for his bravery. I hope the scan goes well on Thursday, I know it will be a long difficult day at the hospital for you.

The second message if from my friend and colleague, Nancy. Nancy wrote, "I just finished reading yesterday's blog and I agree with Charlie as to the exhaustion that each of you must experience at the end of a day. I also read your article in the Advocate and applaud you for your courage, truthfulness, and compassion especially with all that the family has gone through this year. In telling your story, you give courage and understanding to so many and some that you will never know. Each time that our Torah is taken out, we say a prayer for all those who are ill. I continue to include Mattie in my prayers and hope that this extra communication with G-d will bring the results that we all want. He, too, is so amazing and has learned so much from Peter, you, and the entire support system. Even with his illness, he has experienced many loving people and learned that illness doesn't happen because one did something wrong. I know that today will be a very fretful day and may the PET scan not provide any surprises unless positive. I shall continue to send positive energy in your direction. My wish is that Peter and you have a special evening, if possible, before Monday. It may help you to sustain the surgery and especially, the waiting. Mattie will be asleep, but, you will be fully aware of the clock. I am grateful for your friendship and support these last years and appreciate your extending yourself throughout this ordeal. May G-d watch over all of you for a very long time."

The third message is from my dear friend, Lorraine. Lorraine wrote, "I know today will be such a long and hard day for Mattie and for you. I send you my prayers and wishes that nothing shows up in the full body scans that is new, questionable, disturbing -- that Mattie and you are spared from any more surprises. How great that your day yesterday was filled with so much activity and friendship for Mattie and you. There is a note of such deep sadness in some of your comments, regarding Mattie's appreciation of his difference and other statements, that break all of our hearts. But there is also a note of great appreciation for the amazing caring and sensitive friends Mattie and you both have. Thought it was great that Pete got a chance to go to a baseball game, miserable rain and all, just to get a tiny break too."

Wednesday, June 10, 2009

Wednesday, June 10, 2009

Quote of the day: "You can discover more about a person in an hour of play than in a year of conversation." ~ Plato

Mattie had another late night, he did not go to bed until after 1am, so waking up this morning was challenging. Today was our ONLY day off this week, since we return to the hospital tomorrow for a whole body PET scan. This scan will take over two hours, and because the machine is confining, Mattie will be sedated for the entire scan. It takes Mattie several hours to come out of sedation as well, and usually wakes up dazed, confused, and very agitated. So I am not looking forward to this, or the potential results I could hear. We have to be at the hospital by 8:30am, so this should be an entertaining morning for Mattie and I.

Mattie was invited over to Ann's house today to play with her children for a couple of hours. This was a wonderful diversion to our day. Ann's aunt Helen is visiting from Massachusetts. I had the opportunity to chat with her, and we want to thank Helen for giving Mattie the book, Captain Underpants. This particular book in the series features the character entitled, Professor Pottypants. Needless to say we read this book cover to cover when we got home this evening. This type of potty humor is right up Mattie's alley! How ever did Helen know? When I got to Ann's house, I got to see Katie's and Abigail's (Ann's daughters) dance costumes for their up coming performance. Katie's costume needed to be altered, so Helen and I took on this challenge, and we had a good time seeing Katie dressed up and chatting about the performance. Abigail's outfit is adorable as well, since she will be dressed up as a cute sailor. Helping Ann get the girls ready for their performance is something I look forward to later this month. These fun events take my mind off of my usual daily occurrences. As some of you know, dance was always an important part of my life growing up, so it is nice to be able to see the love for this art form expressed in the next generation.

Ann snapped a picture of the alteration process while Katie was demonstrating a move, so that we could effectively alter her straps.

It was a fun afternoon for Mattie. Ann brought him ice cream and he was eating that in one breath and playing with his Nintendo DS in the other. Ann's children are trying to show Mattie how to play with this electronic game, because we suspect this may be a good activity for Mattie post-surgery. However, the majority of the afternoon was occupied with pretend play. Mattie and Abigail designed a building out of blocks and within the building they hid toy cars and animals. The moms played the bad guys, trying to attack the building and steal the cars and animals. However, none of us were successful! The kids always out smarted us.

Left: Abigail and Mattie. You can see the buildings made out of blocks behind them and the basket full of characters that we integrated into our play scenes.

Right: Mattie in front of his block creation. As you can see, in this picture, Abigail is missing. She went to her gymnastics class, and Tanja (a friend and SSSAS mom) and I remained to continue playing. Tanja and I really hammed it up. We played the bad guys, however, Tanja's bad guy was slowly being transformed from a boy into a baby. This baby was a riot because he was talking and causing trouble, yet drank a bottle, and needed a diaper change. Mattie loved this because the diaper talk inspired his potty humor. Tanja and I couldn't help but laugh at how much fun Mattie was having.

I appreciated the effort everyone made today to engage Mattie, to play with him, and to make him feel normal. None of this goes unnoticed! It is a remarkable and special feeling to see Mattie's friends including him in their activities, because I know a healthy child's natural instinct is to move around while playing. Which is something Mattie is quite limited to do.

On our drive home, Mattie said he wanted to tell me something. He said that he hated to break this to me, but that he doesn't like how he looks. He feels that he looks and acts funny and others notice it. I thought that was a profound statement since I never heard this before. He particularly doesn't like how he doesn't have hair. I told him that this was only temporary, but none the less, I haven't heard any of this for the past 11 months. It is interesting that it is surfacing now. Once I got out of the car, I jumped into the back seat with Mattie. I told him that he is entitled to feel however he does, but that I think he is adorable and handsome. I also told him that I will miss his cute bald head when his hair grows back. We had a tender moment where he understood that it is okay to be different, and that different is fine and special. None the less, this was a conversation that broke my heart, because my seven year old knows and observes that he is NOT like his friends.

When we arrived home tonight, we found a dozen Dunkin Donuts on our doorstep. JJ (our resident Jack Russell Terrier) delivered them to us. So before we went inside, Mattie wanted to head over to see our neighbor JP and his dog, JJ. JP just got back from his business trip to Spain and Italy, and with him, he brought some special gifts for Mattie. Mattie has a wonderful bull baseball cap from Spain, with horns included! Thanks JP for always thinking of Mattie! Peter met us outside as well and we all chatted. This evening, Peter went to a Nationals baseball game with a friend of his. I am happy Peter got to go out, despite the fact that it is pouring out! Mattie and I have had a quiet night together, reading books, and watching my least favorite show, SpongeBob. In fact, Mattie just transformed my kitchen sponge into SpongeBob. Lovely!

Mattie and I want to thank Pat for a wonderful dinner. Mattie actually ate very well, and really enjoyed the pasta and the broccoli! Thank you for supporting us!

I would like to end tonight's blog with a message from my friend Charlie, and a story about lightning bugs that was sent to me by Lana (one of Mattie's preschool teachers from Resurrection Children's Center). Lana also loves fireflies and I love the story she shared with me, I hope you enjoy it too!

Charlie wrote, "What an exhausting day. I was overwhelmed just reading the blog. So many hours in the hospital with the surgery yet to come. How wonderful that Mattie was able to reconnect with Brandon and Jocelyn at the hospital; having them join his play therapy was definitely to the good. The more times and ways Mattie can play this out, the less frightening it will be and hopefully the better his recovery will go. Although no one can really be prepared for the situation post surgery you and the staff are doing their best to come as close as possible. I was definitely heartened by reading about Mattie's walking over to get his cars and then his returning ability to entertain himself for a while. As always, it speaks volumes about your parenting and ability to nurture every bit of Mattie's returning need for independence. You are an amazing parent and spokesperson and you have taken a leaf from Rabbi Kuchner's book with regard to "what do I do now?" by going forward with courage and determination for the best possible outcome."

The Lightning Bugs Are Back

By Anna Quindlen

The lightning bugs are back. They are small right now, babies really, flying low to the ground as the lawn dissolves from green to black in the dusk. There are constellations of them outside the window: on, off, on, off. At first the little boy cannot see them; then, suddenly, he does. "Mommy, it's magic," he says.

This is why I had children: because of the lightning bugs. Several years ago I was reading a survey in a women's magazine and I tried to answer the questions: Did you decide to have children: A. because of family pressure; B. because it just seemed like the thing to do; C. because of a general liking for children; D. because of religious mandates; E. none of the above.
I looked for the lightning bugs; for the answer that said because sometime in my life I wanted to stand at a window with a child and show him the lightning bugs and have him say, "Mommy, it's magic." And since nothing even resembling that answer was there, I assumed that, as usual, I was a little twisted, that no one else was so reductive, so obsessed with the telling detail, had a reason so seemingly trivial for a decision so enormous. And then the other night, yellow bug stars flickering around us, my husband said, in a rare moment of perfect unanimity: "That's it. That's why I wanted them, too."

The lightning bugs are my Madeleine, my cue for a wave of selective recollection. My God, the sensation the other night when the first lightning bug turned his tail on too soon, competing with daylight during the magic hour between dusk and dark. I felt like the anthropologist I once met, who could take a little chunk of femur or a knucklebone and from it describe age, sex, perhaps even height and weight.

From this tiny piece of bone I can reconstruct a childhood: a hot night under tall trees. Squares of lighted windows up and down the dark street. A wiffle ball game in the middle of the road, with the girls and the littlest boys playing the outfield. The Good-Humor man, in his solid, square truck, the freezer smoky and white when he reaches inside for a Popsicle or a Dixie cup. The dads sitting inside in their Bermuda shorts watching Car 54, Where are You? The moms in the kitchen finishing the dishes. The dull hum of the fans in the bedroom windows. The cheap crack of the wiffle bat. The bells of the ice-cream truck. The lightning bugs trapped in empty peanut-butter jars that have triangular holes in the lids, made with the point of a beer-can opener. The fading smears of phosphorescent yellow-green, where the older, more jaded kids have used their sneaker soles to smear the lights across the gray pavement. "Let them out," our mothers say, "or they will die in there." Finally, perfect sleep. Sweaty sheets. No dreams.
We were careless. We always forgot to open the jars. The lightning bugs would be there in the morning, their yellow tails dim in the white light of the summer sun, their feet pathetic as they lay on their backs, dead as anything. We were always surprised and a bit horrified by what we had done, or had failed to do. As night fell we shook them out and caught more.

This is why I had children: to offer them a perfect dream of childhood that can fill their souls as they grow older, even as they know that it is only one bone from a sometimes troubled body. And to fill my own soul, too, so that I can relive the magic of the yellow light without the bright white of hindsight, to see only the glow and not the dark. Mommy, it's magic, those little flares in the darkness, a distillation of the kind of life we think we had, we wish we had, we want again.

Tuesday, June 9, 2009

Tuesday, June 9, 2009

Quote of the day: "One day at a time--this is enough. Do not look back and grieve over the past for it is gone; and do not be troubled about the future, for it has not yet come. Live in the present, and make it so beautiful it will be worth remembering." ~ Anonymous

I have observed a pattern in Mattie's bedtime routine. Over the course of the last week, Mattie wants to see a video with me before he goes to bed. The bedtime video series he is into now is Veggie Tales. Basically if you haven't seen these videos, it features vegetables that talk and tell meaningful stories with moral values. Sometimes the stories are based upon passages from the Bible. In any case, Mattie is glued to these stories and after we watch the videos we try to apply them to his life. Yes even at midnight! However, like clock work, after the video is over, Mattie lets me know that he "doesn't feel like himself." This is his code word for pain and that he can't shut off. Dr. Gonzalez and I have talked about Mattie's nighttime routine, and I completely agree with her assessment. He needs just a little bit of morphine to shut his system off for the night. Like a tranquilizer. I am pleased to say that Mattie doesn't need morphine at any other point in the day, so I view this as major progress! Since a week or so ago, he was taking morphine every two to four hours!

Typically I have to wake Mattie up in the morning, but this morning after I got out of the shower, I could hear something clicking outside my door. I couldn't place the sound. When I opened the door, and peeked into Mattie's room, he was sitting on his bed and playing with cars. Cars that he clearly retrieved on his own, by somehow standing up and walking for them. I was stunned. I commended him for his efforts and he continued to play by himself while I finished getting ready. That was a major first!

I ran around this morning packing lunches, getting Mattie ready for the clinic, and somehow just trying to get out of the door in one piece is a major feat. The day we say goodbye to this wheelchair, I am throwing a party! After lugging this chair around for the past eight months, I can safely say I have had it! In fact, Peter and I are looking into other alternatives, because I may need physical therapy after all this is over.

Mattie arrived in clinic at 11:45am and to put things into perspective, we did not get home until 7pm. So it was a full day in the Lombardi Clinic. However, for the most part, Mattie had a VERY full and exciting day there. Mattie had the good fortune of playing with Jocelyn (who is a young adult with osteosarcoma). Jocelyn was in clinic today for MTP-PE as well. Jocelyn and Mattie share a disease and an orthopedic surgeon, Dr. Bob. Jocelyn was wonderful with Mattie today, and she talked with him about the difficult times she had with physical therapy and other issues. I am so happy Mattie has the opportunity to build a friendship with Jocelyn. Jocelyn has a positive attitude about her illness, and her concern for Mattie is heartwarming.

In this picture you can see Mattie playing with Jessie (left, one of Mattie's art therapists) and Jocelyn (right). Mattie continued his swimming pool project, and designed snakes out of model magic to inhabit his pool. The red snake he is holding is a cyclopes snake. It had one huge eye and quite a tongue. Mattie was inspired to make snakes today, because he brought in a picture of "Sunshine" (the albino python from his birthday party) into clinic. He creeped all of us out with his snake stories, everyone except for Jey (his hospital big brother), who came to visit Mattie in clinic.


At around lunch time, Mattie challenged Jessie to a race around the clinic. Jessie first did a race on foot, and then decided to jump in a wheelchair herself and have a wheelchair race. Needless to say Mattie won all the races, but it was great to see him move his feet and expend physical energy.

In addition, to having Jessie and Jocelyn in his life today, Mattie also had another special visitor. Brandon! Brandon text messaged me to find out how long we were going to be in clinic today, because he and his mom, Toni, wanted to come up and visit with us before Mattie's surgery on Monday. I was truly touched by their thoughtfulness. Mattie and Brandon PLAYED for hours. In fact, Brandon and Jocelyn even joined in during Mattie's play therapy session with Dr. Matt Biel (Mattie's psychiatrist). I enjoyed talking with Toni and I miss these opportunities that we used to have together when Mattie and Brandon were on similar chemo schedules.

The play therapy session built upon last week's session. Mattie again was the competent and world renowned surgeon. Jocelyn played Mattie's assistant, and Jessie and Dr. Biel, I believe played the patient's parents. Brandon played the patient. They were quite a great team. In the pictures below you will see Mattie performing emergency surgery on a skeleton. He did lung, brain, and even limb salvaging surgery! Throughout the play therapy they discussed the activities Mattie would be able to do post lung surgery. In addition, they talked about breathing exercises he would have to do post surgery as well.

Left: Pictured left to right is Brandon, Dr. Biel, Jocelyn, Mattie, Denise (Mattie's social worker), and Jessie

Right: Dr. Mattie busy at work!

Left: Dr. Mattie performed brain surgery on the skeleton. Mattie came up with a new technique during the surgical process. It is called washing the brains. You can see the model magic brains with feathers on them floating in water. What an imagination.

Right: After the play session, Mattie, Brandon, and Jocelyn continued playing. I can't thank them enough for stimulating Mattie today. They were wonderful. If you look at this picture you will see that they created model magic Sponge Bob characters. The irony is I never allowed Mattie to watch Sponge Bob until last week when he was in clinic and there was a Sponge Bob marathon on TV. He was having a MTP reaction at the time and needed something to take his mind off of it. Apparently Sponge Bob did the trick. So today, Mattie created Sponge Bob, Brandon created Patrick the starfish, and Jocelyn created a pineapple (Sponge Bob's home). In the picture you can see Toni (behind Brandon), Brandon, Mattie, and Jocelyn. You will notice in this picture that Jocelyn took her wig off. I think Mattie really appreciates that she does this, and makes him feel in good company.

During the fun play session, Mattie was receiving MTP-PE. Around 90 minutes post infusion, Mattie started to get the chills and became tired. So I brought him into a clinic room and jumped into bed with him. He developed a fever, and Dr. Gonzalez examined him and assessed that he needed more Tylenol and Morphine. While Mattie was asleep on my shoulder, Dr. Gonzalez came in to talk with me. She told me how other HEM/ONC parents talk to her about me and what Mattie is going through. Apparently Mattie's situation has pulled on their heart strings too. But what truly caught my attention was Dr. Gonzalez said in her own way that she doesn't know how I do what I do. She says it is hard enough for her to watch us go through this as a physician, but being a parent and having to deal with Mattie's situation makes it much more difficult. I appreciated her candor, honesty, and empathy. I appreciate all positive comments about my caregiving abilities, mainly because it is a difficult, challenging, and a depressing role to fulfill most days.

Mattie and I arrived home at 7pm, and Peter came home some time there after. We want to thank the Doane family for a wonderful and generous dinner. Mattie loved the grilled cheese and actually ate it! Thanks for the cheesecakes too! Mary, I also appreciated the humorous story you shared with me today. Humor is indeed good medicine!

Mattie is now back to drinking milk! This is wonderful news. He experimented with these goggles he received as a birthday gift. Peter and I were laughing hysterically, because the milk filled up the glasses, so that we couldn't even see Mattie's eyes!

Tonight, Ann and I chatted about our day, and our conversations can go from seriousness to laughter in minutes. I think one thing has become very clear to me over the course of Mattie's 11 month battle, and that is I am blessed with the best of friends. People who are willing to arrange their lives just to make our days smoother or happier and of course those of you who write daily and always have a positive comment to share. I feel the need though to acknowledge Ann in particular. She is an amazing Team Mattie coordinator. However, through our working together toward Mattie's wellness, I have in turn received the blessing of a beautiful friendship. There are days I am not sure where I would be without Ann, and I am just so fortunate that God brought us together and inspired me to send Mattie to Resurrection Children's Center (where I first met Ann).

I would like to end tonight's posting with two messages I received today. The first one is from my friend, Charlie. Charlie wrote, "This is definitely going to be a challenging week with all the tests Mattie has to have pre-surgery. I do think you are right not to get overly upset about the auditory exam; first, the critical issue is being able to hear and respond to speech which Mattie can clearly do. The second thing is that auditory exams are not entirely objective. They are impacted by the patient's willingness to participate, his focus, extraneous issues and often the relationship with the tester. I am not entirely convinced this was an accurate test of Mattie's hearing. The positive side is that the actual condition tends to be better than what you get on the test especially if the tester or the testee is not in the best frame of mind. Once again your blog is a gift to all of us who read it. Thank you for the reminder to take hold of the present and do the important things like hugging your child, telling someone you love them, reaching out and communicating with someone important that you've let go. The best time for showing love and care is now, even if it doesn't seem like it. Waiting for the "perfect time" is dangerous; it may never arrive."


The second message is from my friend, Mary M. Mary wrote, “When Bad Things Happen to Good People” by Rabbi Harold S. Kushner is a book I read many years ago. Rabbi Harold Kushner is one of my favorite authors and I am Catholic, not Jewish. Dr. Kushner also suffered greatly by the loss of his son Aaron to Progeria, a debilitating disease that doomed him to die as an adolescent. I think this book helps to give comfort to people suffering as you are right now. It is not a book expounding any particular religious persuasion. It’s a book that tries to make sense of the question, “Why is this happening to me?”

These are just a few of the excerpts from the book “When Bad Things Happen to Good People,” that I found thought provoking and comforting. It was hard to decide which excerpts to pick, as there are so many to choose from. If you haven’t read this already, I hope that this book may comfort you. Excerpts from the book:

“I don’t know why one person gets sick and another does not, but I can only assume that some natural laws, which we don’t understand are at work. I cannot believe that God “sends” illness to specific person for a specific reason. I don’t believe in a God that has a weekly quota of malignant tumors to distribute and consults his computer to find out who deserves one most or who can handle it best. “What did I do to deserve this? is an understandable outcry from a sick and suffering person, but it is really the wrong question. Being sick or being healthy is not a matter of what God decides that we deserve. The better question is “if this has happened to me, what do I do now, and who is there to help me do it?”

Mary also wrote, "I've been thinking of you all afternoon, as you sit in the hospital on your "free week," and I'm thinking about "one more thing" that Rabbi Kushner said that was important to tell people who are experiencing what you are going through." He says people need to hear:
"This is really lousy, it shouldn't have happened to you, and you do not deserve this terrible thing that has befallen your family! He says that people need to hear this because when something so tragic happens to them they tend to think they deserve it somehow, for not being "good enough" or that they did something at some point that they are getting paid back for now. It's irrational, but it's the way we think under such stressful circumstances."

Monday, June 8, 2009

Monday, June 8, 2009

Quote of the day: "The greatest gift you can give another is the purity of your attention." ~ Richard Moss

Mattie had a busy Sunday night. Mattie and Peter worked and completed an 1600 piece Lego set. They created a classic 1960 VW bug. It was actually a tricky set to put together, and at one point all three of us were sitting together to try to figure out how the pieces fit together. You can see the final product pictured below. After Peter and Mattie built the car, Mattie and I then played with it. We got out all his other Lego cars, and created a play scenario for the next two hours. By 11pm, he wanted to go to his room, but of course couldn't shut off and sleep. So we watched a video together and finally I resorted to massaging his legs and head and he eventually fell asleep. It is in quiet moments like this, when Mattie's illness normally hits me. Mattie and I have always loved rubbing our cheeks on our faces together, and because Mattie is an active fellow, cuddly moments can sometimes be few and far between. But I savor these moments when they happen, and recently I can't help but ponder how long will I be able to have these times together? Not a question most parents of healthy children reflect upon. Not I question or doubt I wish upon any of you either.

Recently I was reflecting upon the time I met Peter in college and we started dating. We had many hopes and dreams back then, and of course never in our foggiest imagination would we have guessed how our life would have turned out. I guess I am writing this because that is just it. None of us know what life has to offer us.

We are all under the faulty delusion that we control our life and our world, until something traumatic happens to us, and we realize so much is out of our control. So don't wait for the right moment to go on vacation, to make a friend, to hug your child, etc. I have learned the right moment never presents itself, you just need to stop and make it happen. That we do have control over!

I woke Mattie up today at 11am. He was very groggy and did not want to wake up but he had two appointments at the hospital and in order to get him there on time, we had to get the process started. He was less than happy with me that we had to head back to the hospital. In fact, he started playing with his toys and gave me a guilt trip that he did not have time to play with me this morning. I felt very stressed out trying to get him ready, pack up snacks, and get to the hospital in time. Eventually I convinced him to work with me, and the planets aligned and we found a great parking space at the hospital. Mattie had an audiology exam this afternoon, and Linda met us at the office. I was happy to see Linda, and it is always helpful to have her assistance on scan and exam days! I was less than thrilled with the audiologist we were assigned. I almost felt that she disliked people and particularly disliked children. She asked me questions about Mattie's health history, and I explained he had cancer, went through 10 months of chemo and two surgeries, but that he had another surgery coming up on his lungs. She asked why, and I had to explain that the cancer spread from his bones to his lungs. It was the way she asked the question that rubbed me the wrong way, and we had this whole conversation in front of Mattie. I thought that was insensitive of her too, because how did she know that Mattie was completely aware of his medical history and upcoming surgery? She did not, but frankly she did not care. She rushed us through the first portion of the exam, and the second portion where Mattie goes into a sound proof booth, I felt was poorly done (and was a very different exam from his previous tests). She shared the results of the exam with me today, but frankly I question the results because of the poor nature of the exam. In fact, Mattie's results from this audiology department show anything but consistency. For example, in December Mattie's tests revealed a hearing loss. Then in February 2009, the tests revealed no hearing loss that was measurable. Today's results indicated a hearing loss in both ears at the higher frequencies, 4000-6000 Hz (which can typically happen with high dose chemotherapies). At first I was upset with this, but then said to myself, how accurate are these results? Then I rationalized this by saying as long as his ability to hear the spoken word isn't affected, then in the grand scheme of things these are great results!

Once the exam was over, she had me wait for the report, which took her about 15 minutes to generate. Fortunately Linda was with me and could take Mattie back to the Lombardy Clinic to play with Jessie and Jenny. There was no way I could have held him captive in that office another minute. When I met up with Mattie in clinic, he was busy working on a swimming pool project with Jenny. They then told Jenny and Jessie about his birthday party! They both oohed and aahhed over hearing about the creepy crawlers at the party. Mattie also ate turkey and drank a half pint of milk while in clinic. That was fabulous! Of course we head back to clinic tomorrow, and Mattie will be able to continue working on his pool project with Jenny and Jessie.

At 3pm today, Linda took us to the pulmonary department so that Mattie could have a pulmonary function test (PFT). I wish Mattie allowed me to take a picture of him, because the set up was priceless. But to do a PFT, you basically have to sit in a glass booth, that reminds me of a phone booth. It is the same dimensions. Mattie sat on a stool in this booth, and had his nose plugged, and a tube placed in his mouth. Mattie did a GREAT job following the technician's instructions, and he did intense breathing for about 20 minutes. The technician was delightful, and at times it looked like she was directing a choir with her hand movements, as she was trying to signal Mattie what to do with his breath through the glass booth. All his breathing was recorded on a computer, and from my very layman's understanding, his breathing looked good. Dr. Synder wanted to have a baseline breathing level, so that she can compare it post surgery. Makes sense to me!

Once all the testing was over, Linda gave Mattie a wonderful gift, a Noah's Arc play set. Mattie loved it and we spent the rest of the afternoon at home playing with it. However, in true Mattie style, Noah wasn't only saving animals two by two. Mattie got out all his plastic bugs, and was saving them and jamming them into the arc. We played for hours with this arc, and then got out the play snakes and frogs that Michael (Ann's son) gave Mattie over the weekend. Each of the frogs had their own island, along with the snakes on our living room rug. I snapped a picture of Mattie surrounded by Legos, frogs, and snakes!

When Peter arrived home, Mattie was happy to see him. We had dinner together, and we want to thank Honey for a wonderful and very generous dinner! Thank you for the balloons and toy car too! We appreciate all your continued support.

This evening, I decided to do laundry, which is not an easy task at our complex. Because our machines are located on a different floor. In order to get to the machines, I have to literally walk outside. Our weather in DC is back to being hot and humid, which is my FAVORITE time of year. I love heat, and as I was walking outside I saw things lighting up. It was the first time I saw fireflies for the season. Somehow seeing these creatures brought a smile to my face. I rarely go outside these days, since Mattie prefers being inside, so doing chores forces me outside. Fireflies remind me of summer nights when I was a child, and it is funny how certain sights and sounds can take you back in time. When I came back inside, I wanted Mattie to come outside to see and enjoy the light show, but he wasn't interested.

As we head into Tuesday, we are going back to clinic for an infusion of MTP-PE. I can't wait to see what reaction we get this time. No infusion reaction is ever the same. I don't do too well with lack of consistency!

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Wow, what a wonderful Saturday night and Sunday for all of you. I am so glad that the sleepover went well. This was an amazing gift from Ann and definitely reflects Mattie's trust in her, the great job you've done to reestablish his independence and Mattie's own resiliency. I can hear both the happiness and the sadness in the blog, the first because you are happy Mattie got to enjoy this weekend with friends and that things are the way they should be; the sadness as we move forward toward the surgery that will turn things back (hopefully temporarily) and make Mattie once again a patient and very dependent. Every time I read or write "doing normal things" I am saddened that we have to identify what every healthy child gets to do on a regular day as something outside the scope of Mattie's "regular schedule." I hope we get to a place where these outings are no longer "special" but just part of Mattie's everyday life."

Sunday, June 7, 2009

Sunday, June 7, 2009

Quote of the day: "A gift is pure when it is given from the heart to the right person at the right time and at the right place, and when we expect nothing in return." ~ Bhagavad Gita

Peter and I had to adjust to our freedom on Saturday night. It did not come easy to us. Peter and I reflected over dinner at the hotel that this was the first night and day that we have been away from Mattie since he was diagnosed with cancer on July 23, 2008. Throughout this year one of us has always been with Mattie. I know that Ann understood our insecurities, and she text messaged us back and forth throughout the night and even sent us pictures of what Mattie and her children were doing together. Clearly Mattie had a ball, and it is wonderful to see him have a chance to play freely with his friends, be happy, and just be Mattie. Mattie the seven year old, not Mattie the boy with cancer. Also being without Peter and I, it left him to be more independent to some extent and to tell Ann when he needed things. I think Mattie has always liked Ann, but after this weekend experience, it is clear she holds a special place in his heart. As she does for Peter and I. The irony is today Ann sent me an e-mail thanking me for sharing Mattie with her family on Saturday. That was actually very touching to hear, because I am well aware of Mattie's needs for constant activity, periodic wake ups at night, and other demands that Ann is able to put into context. As I tell Ann all the time, she is my angel of HOPE, and giving us this time away this weekend was a gift beyond imagination.

I would like to share several of the wonderful photos Ann took for us of Mattie's first sleepover. I hope you enjoy them as much as I have. These glimpses of normalcy are things that we wish could be etched in our minds in the following weeks to come.

Left: Mattie and Abigail in Michael's (Abigail's brother) room playing with a hot wheels track. One of Mattie's favorite activities!

Right: Mattie and Abigail planting a "fairy" garden. Mattie used to love gardening, and he would help me plant flowers every year. This year when I asked him if he wanted to do this activity with me, he said, "no, that is boring." I know he doesn't find it boring, but more like he doesn't feel like he is capable of helping like he used to.

Left: On Saturday night, Mattie's good buddy, Zachary, came over to Ann's house and played with Mattie for a while. It is so nice that Mattie and Zachary were able to reconnect in this way, because they have a special friendship that transcends Mattie's disability. In the picture is Katharina (Tanja's daughter, who is becoming a friend of Mattie's), Mattie, and Zachary in Abigail's room.

Right: Mattie, Abigail, Zachary, and Katharina getting their hands wet and having fun with a water activity. Another favorite pass time of Mattie's!

Left: Mattie and Michael (Ann's son) playing with a bowl full of plastic fruits and vegetables and lots of water!

Right: Mattie checking out the fruits and vegetables! I LOVE the look of joy on his face!

Left: Well if you can't stir this stew with your hands, why not use your feet? LOTS of feet.

Right: Bedtime stories with Abigail!

Left: Abigail and Mattie sitting outside, getting some fresh air (yeah!), and collecting ANTS. That's right! You read this correctly! Mattie received an ant farm kit yesterday from Michael (Ann's son), and he is VERY excited to set it up. Mattie has always wanted an ant farm. Apparently crawling things are in my future.

Right: Mattie and Abigail performed a puppet show together, in which he played a dinosaur that attacked the animals Abigail was playing.

Left: The puppet show in progress.

Right: Mattie, Abigail, Katharina, and Tanja (Katharina's mom) playing with a farm house. To me this looks like a doll house, but Mattie corrected me several times and said it was a FARM house.

Left: Mattie, Abigail, and Ann playing on the farm!

Right: Mattie tells me the kids did not want their picture taken, and they all put their heads down.

While Mattie was having a great time at Ann's house, Peter and I had brunch at the hotel together, and then decided to head home and unpack Mattie's gifts and our things, so that when we brought Mattie home we wouldn't have to do this. At first I was unhappy we did this, because coming home to me means WORK. In fact, my home is a glorified hospital to me, and in a way a place I feel very trapped in. So I rather have sat outside by the hotel pool, but after we brought Mattie home this evening, I knew Peter made the right decision. Mattie came home and needed both of our attention, and unpacking would have been virtually impossible.

Peter and I went for a walk today, and along our walk we saw a black water snake (apparently I can't get away from creepy crawlers this weekend!) and a Great Blue Heron. Both of which you can see below in the pictures!

When we arrived at Ann's house to pick up Mattie, I wasn't sure if he would be ready to go since I knew he was having a great time. But he understood that all great things do eventually come to an end. We talked about his sleepover in the car trip home and the fun he had with his friends. When he got home though, he was edgy and all the same pains, which we did not hear about all day yesterday, came back. Perhaps Mattie feels the same way about home as I do. Not sure, but after taking Morphine, he calmed down, and he and Peter have been busy working on a Lego together. As we head into Monday, we have a full afternoon at the hospital. Mattie has to take a hearing test and then a pulmonary function test (PFT). Mattie has never done a PFT before, so this always can provide extra stress to an already stressful situation. None the less, in our FREE week, we will be going to the hospital on Monday, Tuesday (for an all day MTP experience), Thursday (for a two hour PET scan which requires that Mattie get sedated), and on Friday (for an echocardiogram). You really have to wonder why some families are put through such life altering experiences? I have no answers, and I know people tell me that God has a plan. But I wish our plan were different.

We want to thank the Peterson family for a wonderful homecooked meal. Thanks Karen for the chicken pie and the wonderful chocolate cake. We also love your butter crunch that you made. Thanks for sharing this treat with us.

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "What a wonderful day for Mattie on Saturday. I am so glad the weather cooperated too. The pictures were wonderful and the cake looked delicious even if it was in the shape of a roach. I know it is hard to watch Mattie and compare him to the other children at this point in his life; that's normal. However, remember that Mattie would not be around to have this wonderful party that he so clearly enjoyed had you not made the decision to go forward with treatment that you did last summer. The spirit and enjoyment of life that will carry Mattie forward is clearly still there. The party was definitely enjoyed by all the children (and adults) and was a wonderful gift to both you and Mattie. I hope that your evening with Peter is as nice and that Mattie's first sleepover goes well too."