Wednesday, December 17, 2008

Wednesday, December 17, 2008

Quote of the day (Thanks Charlie!):
"Do not anticipate trouble or worry about what may never happen. Keep in the sunlight."~ Benjamin Franklin
Charlie wrote, "Easy to say (or write) but not easy to do. If prayers can make an outcome improve, Mattie has many well wishers working for him. We pray you will get a break before the next round of chemo and that the scan will be good news!"

Last night we were assigned a non-HEM/ONC nurse. Now you are probably saying to yourself so what, what on earth is the difference? Well let me tell you! The difference is huge. So huge, that you can basically tell right away whether a nurse is HEM/ONC or not. The HEM/ONC nurses tend to be patient, they listen, they are warm, compassionate, and understanding. They know what cancer families are up against, and therefore try to make the process as humane as possible. When our nurse walked in last night, Peter and I did not recognize her. We knew that wasn't a good sign, but we also know that there are some new traveling HEM/ONC nurses on the floor, so we made the assumption she was one of them. But as she was interacting with us and particularly with Mattie, we quickly realized she wasn't familiar with working with cancer patients at all. Poor Mattie. She grabbed his arms and legs to take his blood pressure and pulse, and I thought Mattie was going to jump out of the bed in pain. She did not seem taken a back either by the fact that he wasn't happy with her, or that she potentially hurt him. This morning, I went to talk to Jeff Turner, our nurse manager on the floor. Jeff has been fabulous. He really looks out for his HEM/ONC families and said that he agreed, Mattie needs consistency, and that such an oversight (of receiving a non HEM/ONC nurse) wouldn't happen again. In fact, he feels that Mattie shouldn't even be assigned a traveling nurse. I personally agree, since Mattie really needs to feel safe, and actually right now, his personality is so difficult that I notice most of the doctors and nurses don't want to deal with him. Clearly not the same kid that walked into this hospital in August. The nurses who have known Mattie since August see the change, understand the change, and it is nice that they remember the sweet boy that hides somewhere inside of Mattie.

Today was what I would call a difficult day. Mattie was feeling fine, that wasn't the issue. But the heightened anxiety Mattie is experiencing is overwhelming at time. He refused to give me time outside the room. He wanted to play non stop the entire day, and needs my undivided attention. I think any parent can do this for a day or two, but try months. Mattie and I played with Lesley today using biopaints. Basically you mix the paint with water, and it turns into this gloppy/gak like substance. Mattie loves this kind of tactile stuff, and got his hands and part of his arms in this stuff. It was a royal mess, and he even covered me in it. I do not share in Mattie's love for this kind of stuff, so I couldn't wait to get it off of me. The things we do for our children. I snapped a picture of Mattie, Lesley, and Whitney. I wanted to capture this moment of them with him. We will miss them next week!

Mattie had to take some more x-rays today. This time Theresa, the x-ray tech that Mattie knows, was back. Theresa worked with Mattie to find a way to comfortably take the x-rays of his wrist and arm. Linda accompanied us and as usual had her bag of tricks to distract and engage Mattie. She even put Christmas lights on his wheelchair and brought her plantetarium machine down to the x-ray room. Mattie did a very good job taking the x-rays and we were very proud of him. When we got back to his room, Mattie met up with Lenny. Lenny is a volunteer who plays the guitar and sings. He sang several songs for Mattie and Mattie was listening and playing with me at the same time. Pretty soon there after, Deborah, the bead lady, came and she, Linda, and Anna helped Mattie to design a Christmas bracelet. It is lovely. While Mattie was working on the bracelet, Anna was trying to talk with Mattie about PT.

Mattie's reaction to PT really saddens me. Mattie told Anna again today that he did not need her
but what caught me off guard was that he told her he doesn't want to walk, and wants to stay in his wheelchair. We told him that his wheelchair was meant to be a temporary thing, not permanent. I then told him that the sooner he starts to walk the more he will be able to do with his friends. That only made things worse. He said he did not care and did not want to play with his friends. Now I realize he on the deepest level doesn't mean this, but I have to tell you, this comment bothered me. It further emphasizes the isolation I feel each day. An isolation that is only growing. We are all human, and one of the things we need to be healthy is social connections. The fact that Mattie is closing himself off clues me into a problem that unless worked out will only get more complicated. So my level of stress was just building up throughout the day. When you don't get a break and you play non stop you there is no time to gain perspective and to recharge. Also Mattie's play isn't always fun. Because to play effectively with him, you have to really meet him where he is, this takes a lot of energy on all levels.

Later on today, Mattie had a visit from Mary Dressendorfer. Mary is Mattie's SSSAS technology teacher. Mary is an absolutely beautiful person inside and out. Her mother dealt with multiple forms of cancer, and she gets the disease and all its impacts. She came to visit Mattie and brought him several things to open. She brought Mattie a big, long cardboard box with little boxes inside of it. We helped Mattie transform the box into a building with a pully elevator. But Mattie was getting frustrated throughout the entire play. Mary even brought Mattie walkie talkies to try out. I think the idea was great, she gave me one and the other to Mattie. I attempted to get out of the room with one, and I figured if he needed to touch base with me he could, but this did not suffice for him, he really wanted me back in the room with him. Mary also made Mattie some wonderful holiday ornaments and decorations to hang up in his room. We will definitely do this next week! We really appreciate Mary bringing us some bubbles from her wedding. We feel special to be included in this memorable occasion. Mattie also received a very special gift from Bob Weiman (SSSAS lower head of school). Bob found a collector's item on e-bay. The bionic man doll. It is simply fabulous. I remember watching the bionic man growing up and was fascinated by Lee Majors and his capabilities. Who knew I was going to be raising the bionic boy when I grew up. What a fabulous gift, and Mattie totally related to this action figure. He was checking out his bionic parts, and really this is the action figure version of Mattie. It was great seeing Mattie put this together. What an absolutely clever gift! Thank you also for the cute scooby doo keychain and musical card!

We want to thank the Cooper family for a wonderful lunch. Mattie ate ALL his chicken nuggets and most of his french fries today. Mattie is looking forward to cracking open the dino egg as well. We also want to thank the Gehrs family for an amazingly generous dinner. I am sitting here eating a chocolate cheesecake while typing this. This is my form of therapy (writing and chocolate!).


At 5:30pm, I thought I was going to lose my mind. I couldn't take another demand, another minute of play, anymore whinning, etc. So I told Mattie he needed to be quiet for 10 minutes, he had to entertain himself, and I spent that time regrouping myself and cleaning up the room, which looked like a bomb blew off in it. Within that time, Mattie reset himself. He decided to watch a Scooby Doo video after 10 minutes, and is now sitting and playing with playdoh and his cars that Brandon gave him. Thank goodness, because I am worn out on so many levels.

As I finish tonight's blog, I have a night full of packing ahead of me. Mattie's blood count was 300 today. They plan on discharging Mattie from the hospital tomorrow, after I take him for a hearing test. But now that my parents aren't here, I need major help and coordination with discharge. So tonight I plan on packing up Mattie's room, and having Peter take all the boxes and things down to his car. So that I don't have to deal with this tomorrow. Then tomorrow, I will just have to worry about Mattie and maybe one valise. I want to thank my friend Jane for her willingness to come to the hospital tomorrow, and for transporting Mattie and I home since I won't have a car here at the hospital. I am not sure where I would be if Mattie never attended RCC or SSSAS. Fortunately I don't need to find out. But I must say after a long day, the last thing I want to deal with is packing. Going home isn't easy either, and now not only will I have to administer him this white blood cell growth factor through his central line, but Mattie will need IV fluids every night while home. The fluids will contain the electrolytes he needs which have been depleted in his system from the new chemo. I am not sure how I have the strength to wake up each day to face another day like I had the day before. I am trapped and at times there seems no way out of this.

I received another wonderful Christmas story e-mail today, which I would like to use to end tonight's posting. Thanks Charlie for sending this to me today! It is kind of funny how we spend all this money and time shopping for gifts during Christmas, when in all reality this is not what Christmas is about. It is a holiday that has been commercialized, and the meaning of the holiday no one talks about any more. I too have been guilty of this over the years, but I think Mattie's illness has allowed me to see that all these tangible gifts don't matter, they don't make Christmas or produce lasting happiness. What makes Christmas is far more meaningful, something that can't be bought or put under a tree. It is meaningful social and emotional connections with others, it is the love and respect of a child, and the appreciation of one's good fortune for health, happiness, and life. Okay, enough pontificating, but I have been shaken up this year, and it is my hope you all can gain something from what my family is going through, because I certainly wouldn't wish the circumstances of how I obtained this wisdom on any of you.

Night Before Christmas for Mommies
'Twas The Night Before Christmas...Mom Style 'Twas the night before Christmas, when all through the abode Only one creature was stirring & she was cleaning the commode. The children were finally sleeping, all snug in their beds, while visions of X-Box & Barbie flipped through their heads. Yes, and dad was snoring in front of the TV, with a half constructed bicycle propped on his knee. So only the mom heard the reindeer hooves clatter, which made her sigh, "Now what is the matter?" With toilet bowl brush still clutched in her hand, She descended the stairs, and saw the old man. He was covered with ashes & soot, which fell with a shrug, "Oh great," muttered the mom, "Now I have to clean the rug." "Ho Ho Ho!" cried Santa, I'm glad you're awake." "your gift was especially difficult to make." "Thanks, Santa, but all I want is time alone." "Exactly!" he chuckled, "So, I've made you a clone." "A clone?" she muttered, "What good is that?" "Run along, Santa, I've no time for chit chat." Then out walked the clone - The mother's twin, Same hair, same eyes, same double chin. "She'll cook, she'll dust, she'll mop every mess. You'll relax, take it easy, watch TV and rest. "Fantastic!" the mom cheered. "My dream has come true!" "I'll shop, I'll read, I'll sleep a night through!" From the room a bove, the youngest did fret. "Mommy?! Come quickly, I'm scared and I'm wet." The clone replied, "I'm coming, sweetheart." "Hey," the mom smiled, "She sure knows her part." The clone changed the child and hummed her a tune, as she bundled the small one in a blanket cocoon. "You're the best mommy ever. I really love you." The clone smiled and sighed, "And I love you too." The mom frowned and said, "Sorry, Santa, no deal. That's my child's LOVE she is going to steal." Smiling wisely, Santa said: "To me it is clear, Only one loving mother is needed here." The mom kissed her child and tucked her in bed. "Thank You, Santa, for clearing my head. Sometimes I forget, it won't be very long, before they'll be too old for my cradle and song." The clock on the mantle began to chime. Santa whispered to the clone, "It works every time." With the clone by his side, Santa said: "Goodnight. Merry Christmas, dear Mom, you'll be all right." Sometimes we need reminding of what life is all about. Especially at times when the Holiday season shouts, and all we do is clean, bake, and procure. You get the picture -- I'm sure. So stop for a moment and hug that little one so dear, whether he/she is 2 or 22, or even older this year. For they are the gift that God gave us from Heaven above, and what a special gift to be treasured, with endless LOVE! May The Real Meaning Of Christmas Be With You All Year There are no miracles for those... that have no faith in them... Have faith in the Miracle of Christmas !!! The Lord is my strength and my song.