MATTIE MIRACLE VIRTUAL WALK WAS AN $110,000 SUCCESS!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

July 18, 2009

Saturday, July 18, 2009

Saturday, July 18, 2009

Please keep the signatures coming! We thank you for signing Mattie's LIVESTRONG dedication page! http://www.livestrongaction.org/node/20612

Quote of the day: “The smallest act of kindness is worth more than the grandest intention.” ~ Oscar Wilde

Peter stayed with Mattie last night. Peter gives me a break from this 24/7 routine on the weekends. Mattie needs supervision at night as long as he is connected to an IV, which may be a while until we can get his electrolytes stabilized. Peter tells me Mattie had another late night. While Peter was working with Mattie, I was reading a couple of articles and working on a Powerpoint presentation for a conference I am attending in DC next week. I managed to stay up until 2am, but at that point, I couldn't keep my eyes open another minute. Sleep for me though is no longer peaceful, I suppose it is the aftermath of living in a PICU, but by 7am, I was jolted awake. Instead of going back to sleep, I decided to take this quiet moment in the house, when Mattie wasn't up, to continue working on this presentation format.
When Mattie woke up today, he was very focused on completing the Taj Mahal. Having Peter home with him today made Mattie very happy, and when I left the house they were building the Lego structure, and when I returned several hours later, they were still at it. That may sound cute, but if you have ever sat on the floor for hours straight, staring at a Lego instruction booklet, then you know this is actually painful. It is tiring physically and mentally, especially the way Mattie builds. Without breaks! Fortunately Peter is a good sport about all of this! While I was out today, Peter and Mattie completed the construction of a second fountain for me (this is actually a project they started last July before Mattie was diagnosed). So now I have two Mattie fountains, and hearing the sound of water has become very therapeutic for us.
While Peter and Mattie were having a busy day together, I went to visit Ann's parents. I have the opportunity to do this on the weekends thanks to Peter. Before I visited with them, I picked up some things I thought they would like, including three large sunflowers. I don't think it is possible to look at a sunflower without smiling. Or at least that was my hope. Each time I visit Ann's parents I am quickly reminded just how ineffective, incompetent, and insensitive the care is that is offered to our older adults in our Country's assisted living and nursing care facilities (certainly there are quality providers, but they are FEW and far between). I remember having these same feelings of disgust when visiting my Grandmother (who was a stroke survivor), who lived her last year of her life in a nursing care facility. Visiting one of these facilities is like entering the land that time forgot, because it is within these facilities that you rarely see visitors, smiling faces, or basically signs of life. It is almost like these settings are designed to depress and suck the life out of you, as you bide your time until God calls you home. Why must it be this way? The simple fact is it shouldn't be! Filling the halls of these facilities were once vibrant and active individuals, and sometimes when I visit Ann's parents, I stare at the residents and try to imagine what they looked like and were like when they were younger. Each one of them has a story, but again, these stories are not celebrated, instead I believe these facilities inspire and reward dullness, complacency, and in a way deaden the human spirit. With that said, these facilities are a business, and they know that their residents' families need them and their services, and because there is a need (and there will continue to be a need based on our population's demographics), there is absolutely NO incentive to change the status quo. None the less, I can't help but wonder why such care can't be provided in a compassionate and humane way? If you think I am exaggerating, then I would be happy to share some stories and observations with you. But when an older adult feels intimated to make a request from a dining room employee, then you have to wonder should this individual be working and serving people? The answer is a resounding NO!!! There are times I visit Mary and Sully, and I want to shake some of the people working in the facility. Don't they get it? This is their job, and at the end of the day they get to go home. Unlike the residents they work with. These employees are the only connection to the real world that some of these residents ever get. That alone is a sad commentary. Prior to Mattie's illness, my area of clinical and research experience was gerontological counseling, particularly addressing the needs of caregivers of older adults. After this year of caring for Mattie though, I developed insights into caregiving that I would never have imagined from my readings or interacting with clients. When you spend some time in nursing care facilities, you can't help but think about your own mortality, or what the meaning of life is? In so many ways we all need a reality check. We (meaning Americans), work so hard, vacation very little, don't have time to just be, or to eat family meals together and so forth, and what for? In the end we do not know what life has in store for us and we can't assume we will have a lifetime to do all the things we envision. I think the worst thing would be to land up in a nursing facility and feel that you haven't lived your life, that life did not meet your expectations, and instead of enjoying time with others, you spent it misdirected thinking you had the future to catch up on relationships and the simpler aspects of life. Spending large amounts of time in a hospital this year, has really caused me to pause. It has rocked my world and forced me in a way to see things clearer. I don't wish this vision test on any of you, but I am hoping that through my daily experiences you can capture something which I wish I learned years ago.
While visiting Ann's parents, they always ask me about Mattie. They know that my mom had a minor surgery this week, and they are very concerned about her. They wanted to know when my parents were coming back to visit. I told them they would return soon, but keeping up with our pace is not only difficult, but very stressful. They completely understood that, having experienced it with their son. Ann's mother then turned to me and asked me how do I do it? She acknowledged that I must be tired and at times want to quit. Certainly, but as we both know, giving up on your child is not an option.
When I returned home, Mattie was thrilled to show off his Taj Mahal to me. This structure has over 5922 Lego pieces. I included some pictures so you could appreciate its design. Tomorrow we will be searching on-line for information about the Taj Mahal. I want Mattie to know something about the creation he built.

Left: Mattie took a close up picture of one of the minarets!
Right: Mattie and the Taj Mahal.

















Left: The full view of the Taj Mahal! It was a labor of love, but what you need to understand is that my entire living room is turning into a Lego display center!

We want to thank our neighbor, JP, for bringing over Mattie's favorite pasta and pizza tonight. Mattie enjoyed it and of course seeing JJ (our resident Jack Russell Terrier)! Peter and I had a nice dinner outside on our deck tonight, listening to the fountains. I am beginning to cook some things again, which is my attempt at trying to provide some sort of normalcy in our lives on the weekends. Emphasis on attempt!

I would like to end tonight's posting with a message from my friend, Charlie, and then I included an interesting link to a NY Times article that Charlie sent me today. Charlie wrote, "I was glad to see that Friday was a better day. It is interesting that none of the medical personnel thought to tell Mattie how he might feel as the medications wore off. They often do this with adults as well. They are so concerned about the placebo effect, that they overlook the power of normalizing the effects the patient might have. I've found the positive results of the latter far outweigh the occasional imaginings that you get with the former. At any rate, now that you have told Mattie about it and as time passes he should have few if any lingering problems from the pain medications. Going to see Ann's parents was a wonderful thing and a great kindness. As you noted, isolation is a terrible thing and it is possible to be as isolated in a crowd as in a cabin on a hillside. It all depends on the relationship to the people you are surrounded by. Human touch is something we all need and crave and unfortunately most of us don't get enough of it due in large part to our cultural norms here in the US. We are so fearful of "wrong touch" that we don't touch at all. Then we pay $70 an hour for someone to come and massage our tight muscles. How wonderful of you to provide the caring touch by massaging Mary's hands; I am sure the memory of that will stay with her for some time. It was nice to hear that Mattie ate his dinner; hopefully as the time from the surgery and chemotherapy recede, his appetite will begin to return to normal."

I am hoping you find this short article of interest. To me this research isn't earth shattering. I have cited other articles in the past about the curative nature of friendships, but after walking through hell this year, my main conclusion is that if I did not have my Team Mattie supporters, the challenges Peter and I face would be multiplied by 100! Thanks for your friendships and continued support!
NY Times Health article: What are friends for? A longer life.

July 17, 2009

Friday, July 17, 2009

Friday, July 17, 2009

Thank you for signing Mattie's LIVESTRONG dedication page! Please keep the signatures coming, we value your support!http://www.livestrongaction.org/node/20612

Quote of the day: "Every action in our lives touches on some chord that will vibrate in eternity." ~ Edwin Hubbel Chapin

Mattie had a hard time falling asleep last night. In fact, he finally went to bed at 2am. Mattie complained of pain and feeling "strange." You should know that we have eliminated ALL pain medication. So he is no longer on Fentanyl or Roxocodone as of two days ago. If Mattie complains of pain, which he most likely will experience after physical therapy or after exerting his body in ways he hasn't for months, then we can administer him Children's Tylenol. Mattie was very concerned about this "strange" feeling he was having. At first I did not get what he was talking about, but then I put two in two together and figured that his body is working on withdrawing from all these pain medications. So I discussed with him that it was completely natural if he was feeling "strange." I told him he may be feeling edgy, have headaches, and other symptoms or as he describes it feeling jumpy from his head to his toes. I told him this feeling would go away in a couple of days, and that the positive news was he did not need pain medication any more because he is better. The irony is, when he woke up this morning, the first thing he announced to me was that he wasn't feeling "strange" anymore. Excellent, let's hope this is really the case!
Mattie had the opportunity to work with a new helper today, Marissa. Ann told me about Marissa, because Marissa lives in Ann's neighborhood. I quickly learned that Marissa was a former hospital volunteer of Linda's. So Linda and I discussed Marissa and then Linda e-mailed Marissa on our behalf and summarized Mattie's situation and interests to Marissa. Linda also gave Marissa ideas about how to approach Mattie on their initial meeting. As always, I am happy to have Linda's assistance. When Marissa arrived, Mattie was shy and pretty shut off. Not unusual for Mattie. I told Marissa about Mattie's physical limitations as well as the things he likes to do. However, Mattie was deeply engrossed in his Lego set, and I encouraged Marissa to build along side him. I took a picture of the Taj Mahal Lego set, it is not completed yet, but it is definitely a work in progress!
While Marissa and Mattie were busy building together, I left the house and went to visit Ann's parents. Ann and her family are on vacation, and I know how much her parents rely on her each day. So when she is gone, it is like a major hole has been created in their lives. I am not a stranger to the role of a family caregiver or the issues faced by older adults. However, now that I have lived in an institutional setting for 11 straight months with Mattie, I have insights about the profound loneliness, isolation, and feelings of being disconnected from the real world, which I did not completely comprehend before. Though Ann's parents are not in a hospital, there are many similarities to this form of living and living in an assisted living facility. In both places you have no control over your schedule, what you eat, what you are allowed to do, who comes in and out of your room, and who you interact with. Therefore, with Mattie covered today, I felt compelled to visit Mary and Sully (Ann's parents). I brought them all sorts of foods and other things linking them to the outside world, like newspapers. We spent a good chunk of the day together, talked about so many different things (Mattie included), and I even had the opportunity to see their 50th anniversary video that Ann made for them. I could see the video brought them great joy, and it was nice that they wanted to share this with me. I gave Mary a manicure, and I think one of her favorite parts is having lotion put on her hands. There is something very healing about the physical touch, and you can see her relax as I hold her hands. I had the opportunity to help them with dinner too, and had a fun time chatting with Ann's dad. He told me tonight that I am part of their family, and I truly believe he feels this way. Needless to say, I was very touched by his sincerity and care. As I was leaving, Mary asked me if I ever considered being a nurse. At first I thought she was joking, but she was serious. After the year that I have had with Mattie, and experiencing the beauty, compassion, and skills of our HEM/ONC nurses, Mary's comment meant a great deal to me. Mainly because I feel nurses are very special people who are not afraid to walk with their patients and families through some of the most frightening journeys life has to offer.
When I arrived home, Peter was with Mattie. They are quite determined with this Taj Mahal Lego project. While they were working, I served a wonderful home cooked dinner outside on our deck. We want to thank the Cokers! Thank you Carolyn for a fabulous pork tenderloin, fresh corn, and yams. Mattie actually ate dinner! Corn and yams are two of his favorite things. Mattie also loved the gummy worm cupcakes, and how did you ever know I love chocolate covered strawberries? What a special treat. Peter and I thank you for the Champagne and toasting our wedding anniversary! So thoughtful. We haven't shown the Lego gift to Mattie yet, but no doubt he will love it! Thank you for your continued support and your generosity!
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "What a tough day on Thursday. Mattie is clearly angry, frustrated and exhausted. If you put yourself in his position it is pretty overwhelming. He has been in treatment for more than a seventh of his life. It is painful, overwhelming, it makes him different and unable to do what he likes to do. For children, life is now; they live in the present, not the past and not the future, so for Mattie, it all looks like this and that is sometimes too much to bear. Somehow you and the therapists have to help Mattie understand it will not be like this forever; that there will be an end to the treatments (chemicals) and that once he has learned to walk and gotten his skills back, that the physical therapy will also end. Understanding that treatment will be completed is a process but one that I think needs to happen for Mattie to begin to heal emotionally.I love how you wear your educator "hat" no matter what environment you are in. You saw a play that would have left most of us speechless or worse and you said, what is needed is a post play discussion group. You turned it into an educational experience and I now have another good lesson from you-- not to shut down on something outside my comfort zone but to find a way to make it educational for myself and anyone who might be with me. You continue to touch a chord in my life and that of others who read the blog."

July 16, 2009

Thursday, July 16, 2009

Thursday, July 16, 2009

Quote of the day: "Love does not consist of gazing at each other, but in looking together in the same direction." ~ Antoine de Saint-Exupery

Mattie and I had another challenging day together. Mattie went to bed after 1am, was complaining of all sorts of pain, and by 1:30am, I decided to put a heat pack on his knee (thanks Junko for these supplies) to help with the pain. Mattie was up by 9am, and was ready to head downstairs to work on his Taj Mahal Lego structure. He is actually very motivated to try to put this together without much help. I admire his independence on this task.

We got ready to head to the hospital today, and arrived in clinic at 11:45am. We did not get home until 5:30pm. The length of time in clinic wasn't the problem, the problem was Mattie's emotional state. Mattie was originally thrown off when he arrived in clinic because Jenny and Jessie (his art therapists) were both in the PICU working with children. Mattie was looking for either of them, and when he saw volunteers only, he started to shut down. He did not want to even sit at the art table. In fact, he wanted to sit in the corner with me only. He had to get his vitals taken and then Dr. Synder wanted to examine him. It was at that point that all hell broke lose. He did not want to be touched today. He told Dr. Synder, his oncologist, that he "hates" her, that she only makes him sick, and that the only thing she could do for him is leave him alone. He was VERY angry. In addition to his anger, he was hitting his doctor, and then gave he a huge pinch on my arm. At one point he was so hysterical crying, that he demanded I tell Dr. Synder that she was a bad person. He kept saying over and over, "tell her, tell her, I won't stop crying or calm down, until you tell her." There was no way I was going to say that Dr. Synder was a bad person, and I wasn't going to cave into this irrational demand. Like when Mattie was a toddler, I stopped talking, sat by his side, and told him he needed to calm down before I could talk with him. Mind you, while this THIRTY minute debate was happening, Dr. Synder and her medical student were observing me. Well I have gotten so used to being critiqued and judged now, it is almost commonplace for me.

Mattie never calmed down, and instead Dr. Synder had to examine him through the crying. She held a firm ground with him, but I am beginning to think he is just scared and angry, and the firm stance isn't working. After she left the room, Mattie was in a bad place. Instead of him getting hooked up to his IV MTP-PE, I wheeled him outside the hospital to get some fresh air. While outside, he cried in my arms. It was about the most heart wrenching thing you can experience. Mattie wants this all to be over, he doesn't want to come back for more treatments, and he doesn't want to be touched. In particular he just wants to be normal. Who on earth can blame him?! I held him for a while without talking. Then I discussed with him the importance of getting examined and taking scans. I told him that even Brandon has to do this. I told him I don't like it either, but if this is going to help keep him healthy and the bone bugs away, then this is what we must do. I told him he is very special to me, and therefore because he is so special, if there is something we can do to keep him healthy, Peter and I will do it. With that, he said nothing, just listened. After ten minutes, he regrouped and we went back into clinic, but with the blanket over his head. He went back to the art table, but had the blanket over his head and did not want to interact with anyone.

Brandon came to visit Mattie today, but Mattie did not want to play with Brandon, Jenny, or Jessie. That was a direct indication to me that Mattie wasn't in a good place. Instead, Mattie wanted to go into one of the patient rooms in clinic and get into bed and watch TV. He and I watched Meerkat Manor on the animal planet while he received his MTP-PE. At 3pm, Anna (Mattie's PT) came by to visit and do therapy. Poor Anna always gets Mattie when he is at his absolute worst on Thursdays. However, Mattie was actually happy to see Anna. This was the first time during the day that I saw him somewhat animated or at least not disturbed to be in the presence of someone else. Despite Anna's best efforts, Mattie was physically exhausted from MTP and couldn't exercise at all. But Anna was able to get Mattie out of his room. While in clinic, Sarah Marshall came by to visit us. Sarah Marshall is one of our outstanding HEM/ONC nurses from C52. She is also a cancer survivor and a remarkable person and nurse. I will never forget when Mattie had his first bout of anxiety in the hospital, and Tricia (another amazing HEM/ONC nurse) and Sarah Marshall helped me advocate for Mattie's treatment with the doctors. I don't forget that act of kindness and support. Mattie did speak to Sarah Marshall and told her about his Lego set that he is working on. What was abundantly clear to me is Mattie is NOT comfortable in clinic. Even though being in the hospital isn't pleasant, we are both more comfortable on C52 than clinic. Why, because of the fabulous nurses in the PICU, who have become like family to us. They know everything about Mattie, his interests, what set him off, and they really care about his happiness. If I could only bring these fine ladies down to clinic with us, we would be all set. In any case, I need to find a way to make this work! I probably need to discuss this with Jenny, Jessie, and Linda.

As the afternoon continued, Mattie started to have the chills, developed a fever, and had an intense stomachache. He told me he thought his stomach was going to burst. When Dr. Synder came in, Mattie demanded IV kytril for his nausea. Dr. Synder did give Mattie Kytril, but I feel like with ALL his outbursts, I am unable to have a meaningful conversation with Dr. Synder about Mattie's care. I must resort to e-mails, which are clearly not the same as a face to face conversation. We were the last patient in clinic today, and by the time 5pm rolled around, I felt like I went ten rounds, and was losing the battle.

Tonight, Ellen (Charlotte's mom) and Christine (Campbell's mom) were taking me out for an early birthday celebration. They wanted to take me out to dinner and then to a play at the Kennedy Center for the performing arts. At first I wrote to them and told them to go without me. I was in no mood. But then they said they did not care what mood I was in, they wanted me to come. So when I got home, I quickly changed and met them for dinner. I can't thank them enough for a peaceful dinner, and a chance to chat. After dinner we went to see the musical called, Spring Awakenings. Ellen prepared me for the provocative subject matter in the play. It is about the awakening of teen sexuality. I have to tell you that this play was written in the 1800s, but was banned in England for over 100 years. I consider England to be very progressive, so this should give you some idea for the controversial material covered in this musical. This musical was about teens and their inadequate parents. It covered such issues as premarital sex, suicide, death, teenage pregnancy, abortion, homosexuality, incest, and physical abuse. But the musical did not only discuss these topics, in many cases it acted them out in a graphic manner. I question whether we really needed to see a sexual relationship illustrated in front of our eyes on stage, and I also wonder what has happened to live theatre? I believe live theatre will need parental ratings just like at the movies. I am saddened to see what we consider acceptable and okay in the name of artistic license. Putting all this aside, from a mental health standpoint, I was deeply troubled by the fact that issues were thrown out at us, and there were no solutions or avenues of help offered to these teens or those of us observing all these traumas. Almost as if these things happen and we might as well accept them. The underlying theme though was parenting. In the play, parents were only concerned about how their children's actions affected them, not really about the welfare of their children. Problem number one! Second issue, is that parents did not listen, talk, or provide moral direction and support for their children's development. As if these skills just arise on their own within our children. Well clearly they don't and the play did a great job illustrating what can happen when parents don't step up and serve their role.

Ellen and Christine naturally felt the play was depressing, and it was, but I guess I did not see it that way. I live depressing each day, so it is hard to depress me further. But I felt like this play was a missed opportunity to take these tragedies to the next step, or even discuss how such traumas could be prevented. This play almost needs an after play discussion group, because I have to wonder what emotions and reactions it stirred up for members of the audience. These controversial topics push our buttons, I can't imagine they wouldn't considering they hit us at our core. So you leave the play feeling raw, with no closure or outlet provided to make you feel protected or safe. With all that said, you can clearly see that attending this play took my mind off of Mattie for quite a bit of time, which after today, was a great thing! Thanks Ellen and Christine for whisking me away!

While I was out, Peter had full Mattie duty, which after a day like today wasn't easy. Peter and Mattie are working hard on the Taj Mahal Lego set, and I hear Mattie ate well (we want to thank the Griswold's for the wonderful homemade bread!) and even had a visit from our neighbor, JP. I realize Peter had a long day at work, but I always appreciate how he is willing to continue working with Mattie at home, so I have an opportunity for a break.

I would like to end tonight's blog with two messages I received today. The first message was from my friend, Charlie. Charlie wrote, "Well, Wednesday was not exactly the dream way most people would choose for their wedding anniversary. I think it is a wonder that you survived the day with your sanity intact and that you got Mattie to the hospital and his therapy appointment. I realize that the dose of medication that Mattie was on was a small one but he is so lightweight that I think the medication still had more of an impact than anyone realized. I am glad you did not give up and that you and Peter went out to dinner to celebrate your anniversary. I know that this year has put an amazing strain on your marriage and I commend you both for holding tight to each other through it all. As the quote says, you have definitely been looking in the same direction without wavering for this past year; we all know that Mattie would not have made it to this point otherwise. I wish you a Happy Anniversary and may every one that follows this one be a lighter, more joy filled one as I think you have had your more than your share of sorrows."


The second message is from my friend, Grace. Grace wrote, "I have to tell you, your blog has helped us in so many ways. You not only help us put things in perspective and inspire us with your positive attitude, indefatigable energy and dedication, you educate us. (And you thought you sidelined your teaching career for the moment! :-) Because we see how you so wisely interact and maneuver in the medical world, we can't help but pick up a few pointers that end up helping us enormously. I'm certain that Mark and I were more bold with the surgeon in telling him that things just weren't right with Christopher because we saw you lead the way. And earlier this year when Abby was at Children's Hospital for a week with a mystery illness, I used the information I learned from your blog to Abby's benefit. Because I was often in the hospital alone with Abby while Mark was home with the other kids, the only way I could get a meal was to leave Abby. But when I would ask the nurses if they could watch Abby for a few minutes so I could go to the cafeteria to quickly grab some food to bring back to her room, the nurses nonchalantly responded, "Just put the sides of the crib up and leave the door open and we'll listen for her." Perhaps their goal was to shift us to another floor which would handle the head trauma that would result if Abby climbed out of her crib while unattended or got wrapped up in all her IV tubes. Amazing! Thanks to you, I knew about the patient advocate service. You remain a true inspiration; throughout Abby's slew of tests (Cat scan, MRI, sonogram, spinal tap, EEG, chest x-ray, and many blood and other cultures) I just kept thinking to myself; this is nothing--if Vicki and Peter can go through all they are going through with such grace, I can endure a little uncertainty and a few tests. Once again, you're helping to put things in perspective for us all; those little bumps in the road of life just don't take on as much meaning or bring much turmoil anymore. So never fail to remember that although you may not be standing in front of a podium or grading papers, you remain a teacher to far more than a full auditorium. Your insights, which you so generously share with us each night, inspire, move and educate us more than quoting from any text book ever could. And the life lessons you provide will stay with us forever. Lastly, Happy Anniversary to you and Peter. I am forever impressed with how well you two work together; you exemplify "grace under pressure." So many couples would wilt under so much stress, but you not only remain strong, you are stronger."

July 15, 2009

Wednesday, July 15, 2009

Wednesday, July 15, 2009
Thank you for signing Mattie's LIVESTRONG dedication page! Please keep the signatures coming, we value your support. Let's make our Country's leaders know that cancer treatment and research needs to be a top priority! http://www.livestrongaction.org/node/20612

Quote of the day (Thank you Charlie!): “This is my wish for you: Comfort on difficult days, smiles when sadness intrudes, rainbows to follow the clouds, laughter to kiss your lips, sunsets to warm your heart, hugs when spirits sag, beauty for your eyes to see, friendships to brighten your being, faith so that you can believe, confidence for when you doubt, courage to know yourself, patience to accept the truth, Love to complete your life." ~ Unknown

Before I tell you about our day, I want to acknowledge our anniversary. As of today, Peter and I have been married 14 years. That alone is an achievement, but factor in the year that we have had, and the continuous battle we fight to get Mattie well, and you really have to say it is a miracle that we made it to year 14. Marriage is a complicated endeavor even under the best of circumstances, but when a family contends with such profound illness, it not only impacts every person in the family, but it also translates down into the strength and health of one's marital relationship. Fortunately for Peter and I, we were friends for many years prior to getting married. I think this friendship and mutual appreciation for each other has always been the foundation of our relationship, and therefore something we turn to in times of crisis. However, I am the first to admit, that even the best of relationships are tried when dealing with cancer. I so appreciate the lovely e-mails and cards we received today and we thank you for pointing out the great love and respect Peter and I have for each other. That was indeed a lovely anniversary gift and message to receive!

Mattie had a VERY rough night of sleep on Tuesday, and an even more challenging day today. Mattie has been taking anxiety medication for over a month now. However, yesterday was the first night he stopped taking his medication. Mattie's psychiatrist, Dr. Biel, felt that this was an appropriate time to discontinue this medication, especially since Mattie is already on such a low dosage of Klonopin. Dr. Biel prepared me for some of the side effects I could see within the next day or so as Klonopin works its way out of Mattie's system. I can honestly say today was a day of outbursts and emotional reactions. Which really proved to me just how effective Klonopin was for Mattie over the last month. Dr. Biel feels such reactions are very typical, and hopefully I will see an improvement in Mattie's mood within a day or so. None the less, Mattie wore me out today. So much so that I went throughout the day without food. There wasn't a moment to manage eating or doing anything else for that matter.

When Mattie woke up this morning, he had an accident in his bed. So I had to clean him and the bed. He was so wiped out from having such a terrible night of sleep, that he couldn't wake up when he needed to use the bathroom. Mattie said he had one nightmare after the other last night. Funny, because so did I. It was as if we were stuck in the same dream. His dream was about an elevator exploding, and mine was about a hotel that I was staying at, which exploded. Interesting! Mattie woke up edgy, refused to feed himself, and yet wasn't acting like himself. He seemed tired, did not want to play, and yet did not want to be left alone. He was scheduled to participate in a Hyundai event on the Hospital campus today, but Mattie did not want to leave the house. At all! Mattie got it in his mind that he wanted to buy a Lego set instead. In fact, he was fixated on it all day. I couldn't redirect him to anything else, he refused to leave the house, go to physical therapy, and the worst part is I couldn't stop him from crying over something as silly as Legos. He was absolutely hysterical and not rational. This to me was beyond a tantrum, and I felt like it was medication related. How I managed a full day of this is beyond my comprehension, but refusing to go to physical therapy wasn't an option I was going to entertain or tolerate.
By the time Mattie got to the hospital he regrouped. He had a good session with Anna, but he seemed tired. I am now concerned about Mattie's right elbow. To me it looks like a bone is protruding out of his elbow region, and I am pretty sure it did not look like this a day ago. It is my hope that Mattie's oncologist will want to x-ray this tomorrow. Mattie had the good fortunate of seeing Brandon, his big buddy, and Brandon's mom, Toni. Brandon and Toni spent about 20 minutes with Mattie during his PT session. Brandon worked with Anna, and kicked a beach ball back and forth to Mattie. Brandon cheered Mattie on, and after their game together, Mattie walked over to Brandon on the parallel bars and gave him a high five. You can see Mattie's progress in the pictures I took today.

Left: Mattie appeared to walk better today, without putting so much pressure on his good foot. Normally when Mattie walks, he stomps on his left foot to compensate for his weaker right foot. I did not hear as many loud thuds today with the left foot, which was a good sign.
Right: Mattie kicking a beach ball. In fact, today was the first day Mattie actually kicked a ball with his left foot, while putting full pressure on his right foot.























Left: Mattie giving Brandon a high or low five for their beach ball game they played together!
After therapy, we headed home and soon there after, Mattie was visited by Louise. Louise watched Mattie for several hours today while Peter and I went out to dinner. During dinner Mattie called me, and wanted to know when I was going home. I told him we would be home in an hour, and that he should continue playing. I think his main question really was when would he be able to go to the Lego store with us tonight?
It was nice to go out to dinner and spend this time with Peter, but I must admit, I am tired, not very good company, and I was starving from not eating all day. So I wasn't in the best of moods to be celebrating. When I met up with Peter, he handed me a lovely gift bag that his company gave to us today. What an amazing bag of goodies, that contained such things as a certificate to a spa, restaurant gift cards, and wonderful chocolate truffles. I appreciate all the meaningful sentiments that Voxiva, Inc. wrote to us as well. It was a gift that made us feel special.
When Peter and I were walking back from dinner, we looked up at our complex, and waving to us was Mattie with Louise. Clearly, someone was waiting for our return! We want to thank Louise for the wonderful books, sweatshirt, puzzles, cupcakes, and picnic dinner she brought for Mattie tonight! After we said good-bye to Louise, Peter and Mattie headed out to the Lego store. Mattie has taken on a Lego project that contains 5922 pieces. Needless to say, I feel like I am surrounded by Legos and my joke in the house is I am going to get rid of all my furniture and Mattie and Peter can design me furniture out of Legos. That should give you an indication for how many Legos we have! As I type this, Mattie and Peter are busy constructing and are very focused.
As we head into Thursday, Mattie goes back to the clinic for his MTP-PE infusion and physical therapy. Another long day at the the hospital is in store for us!
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Tuesday was a very busy day. As much as you seemed "stuck" in a routine while Mattie was on chemotherapy, it seems a new routine has replaced it. This back and forth to the hospital daily must be exhausting and I am sure you are wondering when (and if) your lives will return to normal. Mattie is doing well in physical therapy and yet it is clear that he has a long road ahead of him. The key is not to lose patience or faith as Mattie is very sensitive and will pick up on your emotions and reflect them in his own behavior. You do such a good job of being both a parent and a cheerleader for Mattie; we could all take lessons from you on balancing love and discipline. I hope today's "load" is lighter than yesterday's with the new chair and that the bumps are a little easier to navigate."

July 14, 2009

Tuesday, July 14, 2009

Tuesday, July 14, 2009

I am thrilled Peter developed this for us. Please consider signing Mattie's LIVESTRONG Dedication Page -- For more information about this page, read the upper left hand side of the blog, or go to: http://www.livestrongaction.org/node/20612

Quote of the day: “The smallest act of kindness is worth more than the grandest intention.” ~ Oscar Wilde

Mattie had a hard time falling asleep on Monday. He finally went to bed at 1:30am. Needless to say at that point, I was not sure if I was coming or going. Despite going to bed so late, Mattie woke up at 9am raring to go. We played for several hours this morning, and then got ready and headed to the hospital for his appointment with Dr. Matt Biel, his psychiatrist. Dr. Biel and Mattie have a very good rapport, and Mattie was instantly engaged. Dr. Biel, Mattie, and I spoke for about ten minutes prior to Mattie's session. Dr. Biel wanted to hear from both of us how things were going at home. He also asked Mattie if there was anything he wanted to talk about today in the session. Mattie's answer was NO! Actually, he found the fact that we were talking simply "BORING" and wanted to know when the playing part of the session was going to happen. Some of the responses Mattie gave the doctor today were absolutely hysterical. For example, Mattie told Dr. Biel that when Peter and I disagree or argue about his medical treatment, that we never solve any problems or create solutions. I simply laughed, because from Mattie's perspective he just sees and hears our conversations, but he doesn't actually understand that these animated conversations are sometimes needed to come up with resolutions. Fortunately Dr. Biel and most of the Georgetown folks know Peter and I quite well. They practically lived with us for 11 months, so I am not as concerned about Mattie's off the wall statements. Before I left the session, Mattie told Dr. Biel that he had a secret. He then looked at me. I had no idea what was going to come out of his mouth at that point. Mattie knows I don't like secrets, and I told him to share it with us. He said to Dr. Biel, "you know I love my mom." So it was ten minutes of absolute laughter for me, to hear what can come out of my son's mouth!
Mattie had a good session with Dr. Biel. I hear that Mattie expressed some anger in the session, and most of it is coming out in aggressive play. Mattie will return for another session next week. While Mattie was in the session for 30 minutes, I had such high hopes to do things. I brought a book I have been trying to read for a year, I brought materials I had to read prior to the conference I am attending next week, and I also had to have lunch. I equate my feeling today to being on a bus tour. The bus stops, and the driver tells you that you have an hour to explore the city, but then tells you to make sure you are back on time, otherwise the bus will leaving. So today, I had to figure out what I wanted to do in this time period, eat, read, or what? I opted to eat, because I was sure Mattie wouldn't give me that opportunity once he was out of his session.
Once the session was over, I offered to buy Mattie ice cream, but he wasn't interested. I am more certain than ever that something is wrong with his stomach. He simply isn't hungry! We had an hour to entertain ourselves at the hospital before physical therapy began. Mattie did not want to go to the Lombardi Clinic, but instead wanted to take a walking tour of the hospital grounds. So in the heat today, I was pushing Mattie's wheelchair up and down ramps and so forth. I got my exercise, but that did not help my back what so ever! I am thrilled to report though that the transport chair arrived today! Thank GOD! So tomorrow, I will be operating with a 14 pound chair, rather than a chair that in my assessment must weigh close to 40 pounds.
Anna is unable to work with Mattie on Tuesdays, so instead her colleague, Cathy did physical therapy with Mattie today. Cathy has sat in on a few sessions with Mattie, so she is a known entity. I snapped some pictures of what Mattie accomplished today. He did tire easily, and I notice every time he exerts energy, he gets the chills and needs to be covered with a blanket.

Left: Mattie on the platform swing. Cathy is trying to get Mattie to stretch out "Steve," Mattie's right leg. Mattie managed to stretch his leg to a 29 degree angle today. Better than yesterday's 33 degree angle. Remember the goal is to get the leg completely straight, a zero degree angle.
Right: Mattie and Cathy worked on pulling these stretchy tubes apart, and then Mattie had to lift them up over his head. He was able to lift the tubes up passed his eyebrows.




















Left: Mattie went back to the parallel bars today, and tried to walk across them. But his arms were tired from the stretching, and as he walks, he drags and stomps on his left leg. In addition, Mattie just doesn't have the back strength right now, and walks hunched over. All things to work towards, but I am just so pleased that Mattie is motivated and a good sport about this. We are using a behavioral chart this week too, and his goal at the end of the week is to win a magnetic toy car.

Mattie and I arrived home at 4:15pm and started working on his Scooby Doo chia pet that Jenny and Jessie gave him yesterday for winning the boat race. Mattie is very excited to see these grass seeds grow. At 5pm, Marisa came over to play with Mattie so I could get out. I could see that Mattie did not want me to leave, but I have to fight this temptation to cave into his demands. So I did leave, and met up with Ann. We had a pedicure together and sat and chatted. Each time I am out in the real world though, I find it very difficult to integrate myself. I see others around me walking around, shopping, and doing the mundane tasks of life. What is mundane to most people, is extraordinary to me. I long for mundane. While out with Ann, Marisa called me and told me that Mattie really needed me to come home. I was further away from home than Peter, so I called Peter and he came home and relieved Marisa. These are the complexities of leaving Mattie, I just never know when I will get the call to come back home. Sometimes I wonder is it even worth leaving? But I know I have to start somewhere, until he becomes more comfortable with his independence.

Tonight, Peter and I had dinner on our deck. Mattie came out to join us, not to eat, but to play in his sandbox. He was really enjoying being in the sand, which was a wonderful sight to see and hear. For just that brief moment, things seemed like they were back to normal, where Mattie could entertain himself for a period of time. We want to thank Dawnee for the wonderful dinner she provided us tonight. Thank you also for the beautiful dessert treats! You spoil us and we so appreciate your support.


After dinner, Mattie opened up a couple of packages he received. My parent's friends in California sent Mattie this fabulous Sponge Bob plaque. He loved it so much, he posed for a picture and gave his best Sponge Bob face. Thanks Phyllis and John. I also love the Wham-It, Anti-Stress device. Thanks for passing it along to me. Your note was really great, and I love how you suggested I picture certain faces on this inflatable character before I hit it to alleviate stress, it made me laugh.
As I write this blog tonight, Peter assembled the new wheelchair and Mattie and Peter already took it out for a spin. Now they are sitting on the floor building a ferris wheel erector set that my parents sent him. As we head into Wednesday, Mattie has been invited to a hospital event in the morning, in which a brand new white Hyundai will be outside the clinic. Kids will be allowed to dip their hands in paint and put hand prints all over the car. Mattie hopes to see Brandon at this event! Of course Mattie has physical therapy in the afternoon, and then Louise (a graduate of SSSAS and a Mattie supporter), will be coming over to watch Mattie so that Peter and I can celebrate our anniversary. Peter and I weren't planning on going out, but Ann and our supporters are really looking out for us. I also think Louise is a remarkable young lady. She just graduated from high school, and yet on top of the other things she is balancing, she wants to help us.

I end tonight's posting with two messages. One if from my friend, Charlie. Charlie wrote, "Monday was a full day with the party and physical therapy. As you said, Brandon and Jocelyn are wonderful role models for Mattie. I know that he watches everything they do and that you will see the results of that at some point. I know the discussion with Dr Snyder was both saddening and frightening for you; I will continue to pray that Mattie has no need of any further chemotherapy and remains cancer free so that decisions about its impact on his system are moot. I think Mattie had a really busy day and perhaps more exercise than anyone realized which might be part of the reason for his meltdown with Peter. I believe that Mattie's emotions ride very close to the surface and when he is tired, you have a breakthrough that he does not know how to manage at this point. You and Peter are doing a great job as parents and as role models; you are also providing good models who are closer to his age so I am confident that Mattie will relearn those psychological skills just as he is relearning his physical ones."

The second message is from my mom. My mom wrote, "As to your odyssey to the hospital and back, it must be punishing for you to perform the same tedious routine on a daily basis but what must add to the stressfulness of your plight is having to keep to a schedule, maintain a semblance of order at home and then rush off to the hospital with Mattie in tow, only to maneuver through an antiquated run down poor excuse of a parking lot in hopes of finding a parking space. If the elevators work, you are in luck but from my experience I know that there are many days when they are out of service making it even more difficult to haul Mattie around in a wheelchair. No doubt the wheelchair feels heavier with each passing day. The body can handle just so much physical abuse before it rebels. As you pass through the hospital doors, you must feel that you have already coped with more than you can handle and yet the important work of the day is getting started. I sit down and contemplate what your routine is like and I am overwhelmed at the thought that you can still function and stay focused on your mission to give Mattie every chance to regain his health and lead a normal life. You have done and continue to do an awesome job. Keep it up but in the process be good to yourself!!"

July 13, 2009

Monday, July 13, 2009

Monday, July 13, 2009

Quote of the day: "One of the deep secrets of life is all that is really worth doing is what we do for others." ~ Lewis Carroll

Mattie attended Brandon's 19th birthday party at the hospital today. Brandon's mom and dad, Toni and Jim, hosted a wonderful ice cream party. Literally it was a chocolate lovers paradise. I had a brownie, chocolate ice cream, M&Ms, and caramel syrup. It was a delicious party, and Mattie was thrilled that there were vanilla cupcakes, vanilla ice cream, and even snow cones for him to enjoy. The wonderful treats made the day memorable, but what will stay clear in my mind always was the connections we made today. Mattie had a wonderful time with Brandon and Jocelyn (some of you may recall that Jocelyn cut Brandon's hair a few weeks ago, and she is a young adult with osteosarcoma). Brandon and Jocelyn are very good role models for Mattie, and I admire them both because they truly care about Mattie, and engage him in the clinic, and enjoy playing with him. Mattie did all sorts of fun projects today. He designed some sharks out of large clothes pins, and then Jocelyn and Mattie, chased Brandon around the clinic with these sharks. Mattie used his shark, to bite off Brandon's fingers, a leg, and an arm. By the time Brandon was finished, he was sitting in a wheelchair. Which led to wheelchair races between Mattie and Brandon. Jocelyn was cheering Mattie on.
We were also lucky enough to see Katie and Kathleen, two of our fabulous nurses from the PICU! They came to celebrate Brandon's birthday. We really miss them. It was so special to see them today, and it brings back all the same wonderful feelings to be in their presence. I will never forget my time with them, and part of me can't seem to visit them in C52 when we come to the hospital now. I am not sure why, but a part of me fears that our interactions wouldn't be the same, which is silly, but I always want to remember them and our connections the way they were. None the less seeing Katie and Kathleen today showed me that our connections transcend C52, which was a great feeling.
Mattie, Brandon, Jocelyn, and Jocelyn's sister, Hannah, also designed boats in clinic and then had boat races. Mattie designed a ferry boat, with a wooden car aboard it. Mattie and Jocelyn teamed up, and Brandon and Hannah teamed up. Jenny, one of Mattie's art therapists, was the judge of the race. Mattie revealed to Jenny that he had issues with racing and competing against his "best friend." His best friend being Brandon. Apparently Mattie brought some tears to his ladies today, because they found his loyalty and commitment to Brandon very heart warming. While Mattie was having this boat race, I was on the phone with Dr. Synder, Mattie's oncologist. Before I tell you about this conversation, I would like to share some photos with you from the clinic visit today.

Left: Vicki, Mattie, Katie (one of our fantastic HEM/ONC nurses), and Jocelyn. Notice that Mattie's hair if finally growing back!
Right: Mattie and Jocelyn attacking Brandon's fingers with their handcrafted sharks. Mattie gave Brandon the king crown today for his birthday.
















Left: Mattie and Jocelyn trapped Brandon in the clinic bathroom. Brandon resorted to sitting in a wheelchair because Mattie's clothes pin shark attacked his fingers, legs, and arms!
Right: You can see Mattie excited about the boat races! Naturally Mattie's boat won the race (thanks Brandon!), and Mattie won a prize, a Scooby Doo chia pet! Thanks Jenny and Jessie for the great gift. We started growing this plant today.




















While the races were underway, I chatted with Dr. Synder. She confirmed with me that she doesn't recommend Mattie receive any more doxorubicin, chemotherapy, based on its toxicity and effects on Mattie's heart. In addition to the decreased function in Mattie's ejection fraction and shortening fraction, I also found out today that Mattie's left ventricle of his heart is dilated, which means that it has expanded a bit and therefore fills more with fluid than it should. In addition, because of the extra fluid, not all of it can get pumped out. So in essence it is expected that Mattie will experience the following symptoms as he becomes more physically active: fatigue, shortness of breath, and dizziness. At the moment, it is hard to assess for these things because he isn't that mobile, but as he starts moving around, these issues may arise, and then we will have to figure out how to treat them, most likely with heart medication. In addition, it isn't clear if Mattie's heart function will continue to decline or whether we have reached a plateau. This is a bit daunting, because we just do not know what the future holds. I also feel as if Mattie would benefit from receiving more chemotherapy, but we are certainly not entertaining this because it would have a major impact on Mattie's heart. Dr. Synder has asked me to daily observe Mattie for shortness of breath and dizziness. I told her that this is another thing to add to my long list of observations. Right now, because I am monitoring so many things, I am keeping a spreadsheet on Mattie's status day to day!
Mattie and I said our good-byes to Brandon and his family, and Jocelyn walked down to the physical therapy clinic with us. Mattie was very proud to show Jocelyn what he is capable of doing, and Jocelyn showed great interest. In fact, Mattie recommended Anna as a PT to Jocelyn. Mattie told Jocelyn today that Anna is "the best!" I concur! I think Anna is working VERY well with Mattie, and I attribute this not only to her skills, but the fact that she developed a solid relationship with Mattie over the past eight months. I snapped some great pictures of Mattie in motion today.
Left: Mattie held a bat today and was whacking a balloon. He was stretching out his arms and really working hard.
Right: Mattie and Anna did some stretching together. Mattie can lift his left arm so it is at an 100 degree angle with his body. The goal is to get it to 180 degrees (ie, straight up over his head), but this is definite progress. In addition, Mattie's right leg is at a 30 degree angle, with the hopes to get it completely straight, or zero degrees.




















Left: Anna introduced Mattie to the parallel bars today. I was not sure how he was going to react to this, but he complied and walked across, bracing himself with his arms.
Right: Mattie crossing the finish line!











Mattie and I headed home and had a quiet afternoon together playing. When Peter came home, he and I had dinner outside, but Mattie refused to join us. Mattie's eating was a little better today, but still not great. We want to thank Eva Katcher for a lovely dinner! Thank you for your continued support! After dinner, I had a professional conference call to participate on. Not sure how I managed that, but I did. When the call was over, I could tell that Mattie and Peter were having a disagreement. So I went downstairs to find out what was going on. Mattie shut down, and was hysterical. Peter tells me that one minute they were playing and the next minute Mattie seemed angry and lost control over his emotions. Some how I am not surprised. Mattie is still in a very fragile place, which makes disciplining him and rationalizing with him like we used to ineffective. As we head into Tuesday, Mattie has an appointment with Dr. Biel, his psychiatrist, and then followed by his physical therapy appointment. Another full day at Georgetown. So though we don't live at Georgetown Hospital anymore, I still feel like I am very immersed in it.
I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "As always, there is a sense of sadness that clearly permeates your lives right now. Throughout the blog there is a sense of longing for the way things were before the cancer that shows even through the positive things that do happen. I was glad to see that Mattie is becoming more comfortable with Independence and that you and Peter are taking advantage of the opportunity to reconnect with each other. I know how much doing for others means to you so I was happy to see that you had the opportunity to check in and spend some time with Ann's parents as well. I hope at some time in the near future, these opportunities become so routine that they are no longer remarkable and are once again a normal part of your lives."

July 12, 2009

Sunday, July 12, 2009

Sunday, July 12, 2009

Quote of the day: "In every walk with nature one receives far more than he seeks." ~ John Muir

Peter stayed with Mattie last night and helped him with bathroom runs throughout the night. For the first time in a week, I actually got a decent night of sleep, which was wonderful, but of course the past two nights came at a price to Peter. Mattie actually ate a full breakfast this morning of oatmeal, followed by homemade waffles. I was thrilled to see Mattie eating, but it is very clear to me that Mattie does still have nausea, and I would like to get a feeling for how long this will last, and for how long he will need anti-emetics.

Mattie was looking forward to seeing Whitney today. Whitney is a former childlife intern of Linda's, and Mattie gets a long very well with her. In fact, when Whitney came to visit, Mattie asked Peter and I to leave. He wanted his time with Whitney without us present. What a wonderful feeling to see him so comfortable with someone else.

When Whitney arrived she brought Peter and I a lovely anniversary card, and baked us a cake. Mattie was very excited to see the cake, all vanilla of course! Thank you Whitney! While Whitney was busy playing, and playing with Mattie, Peter and I went out to lunch. We actually ate outside, and despite being humid and 92 degrees in DC today, we loved it. Well maybe I loved it more than Peter, but Peter appreciated being outside and getting fresh air. We have both been SO trapped this year, that being outside is liberating. After lunch we did some shopping. It is Brandon's birthday tomorrow, and we are excited to be invited to his ice cream party at the hospital. Brandon has become such a special friend in our lives, I just wish we met him and his family under better circumstances. Peter and I picked up some more groceries to inspire Mattie to eat more, and then I went to visit Ann's parents for a little bit. When Ann and her family go on a day trip or out of town, I try, if I physically can, visit her parents in their assisted living facility. This may seem unusual to our readers, why do this in our time off? Two reasons. I did this initially because Ann does so much for us, and if there is a way I can reciprocate her kindness, I will do it. However, as time has lapsed and I have gotten to know Ann's parents, I consider them friends. I relate to them on multiple levels. I know what it is like to have a sick son (since they lost their son to cancer), and I also know what it is like to live in an institutional like facility. Even under the best of circumstances it can be lonely and isolating. So if Ann is gone, and I can spend an hour making her parents happy, then to me I have accomplished something that ultimately brings me happiness.

When Peter and I got home, Mattie was VERY comfortable with Whitney. They were sitting on the couch together and he was lying partly in her lap. I snapped a picture of these good buddies. It has been a good weekend for us, because we had periodic breaks. I appreciate Ann helping me coordinate this and persuading me to take this time away. The breaks are so needed, and it is during these breaks, we see how truly tired we are.

It has been an evening of laundry, playing, and chatting with JP (our neighbor). JP brought JJ (our resident Jack Russell Terrier) for a visit, and JP is encouraging Mattie to adopt one of JJ's future puppies. Mattie apparently is eager to have a dog in his life, but frankly I can bearly handle Mattie and our cat (who has been boarded for 12 months now!). Mattie says he would take care of the dog and walk it, but I know how that goes. I know I would be responsible for the dog, and right now, I can't even be responsible for myself.

Interestingly enough, Peter and I saw Mattie today, stand up and attempt to walk around our living room holding onto things. Mattie still doesn't put full pressure down on his right foot, but I can see he is trying to find ways to move around, and any time I see this I applaud his initiative.


As we head into Monday, we will be attending Brandon's birthday party, and then Mattie has a physical therapy appointment at the hospital in the afternoon. It is another full week of running back and forth to the hospital, and I assure you this is tiring alone. However, on top of this, factor into the equation the last 12 months we have had, the full time playing, and the sleepless nights, and this makes for a very interesting scenario.

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "It seems like Saturday was a pretty good day overall with Mattie enjoying a playdate with friends while you and Peter had some much needed time together. It is sad that it is easy to get out of the habit and ease of "togetherness" where it is difficult to share just because the opportunity is so infrequent. I am glad to see you and Pete rebonding over your nature project. Creating beauty and order out of weeds and disarray is good for the soul as well as a blessing to the eyes. Flowing water is calming and good for healing as well so how wonderful it is that you could clean up and restart this gift from Mattie and Peter. It's been a long hard year and just as gardens can be restarted and come to bloom, so can our lives and I hope this next year brings you many more flowering moments."