Wednesday, December 24, 2008

Wednesday, December 24, 2008

Quote of the day:

"Remember, if Christmas isn't found in your heart, you won't find it under a tree." ~ Charlotte Carpenter.

How to describe tuesday night? Well Mattie did not get sick from the chemotherapy. Which continues to shock Peter and I. The first two times he had doxorubicin and cisplatin, Mattie was a mess. Of course, we celebrate this success, but then as a parent you can't help but wonder if this means the drugs are not working effectively and getting the job done. For some reason I have tricked myself in believing the sicker the chemo makes Mattie, the more "bone bugs" are getting killed off. Now I realize there is NO research to substantiate this feeling, it is simply a feeling. Or an irrational worry. But I freely admit I have it! None the less we had a wild night. Because Mattie is on a large quantity of fluids to flush his system post chemo, Mattie literally was waking up every hour to go to the bathroom. When he has to go, he really has to go and you can't dilly dally around because there will be an accident all over the place. Moving quickly with a child who has had such major surgeries is not an easy task either. So Peter and I woke up this morning feeling like the walking wounded.

Today was an absolute whirlwind. Thankfully Peter took the day off of work. So we were hopeful to have the opportunity to sleep past 6am. However, our lovely construction friends at the hospital started their thing at 7am. So we were up! Linda told us that the PICU was going to have a special visitor this morning, Scooby Doo. As you know Mattie is in love with Scooby, so we knew Mattie would want to meet him, but he was arriving at 8:30am. These days Mattie isn't up at that hour. When Mattie did wake up he was upset that he missed Scooby. Fortunately Linda took Scooby around the hospital, and then landed back at Mattie's room later in the morning. So Mattie started his day off on a good note with a visit and gifts from Scooby. We got a picture of the two of them together. Scooby was a very nice fellow and gave out adorable pirate cups and gear.

Mattie met with Dr. Matt Biel (psychiatrist) this morning, right after his Scooby encounter. They are continuing to develop a rapport, which to me is the cornerstone of a good therapeutic experience, especially when working with a child who is suffering from the aftermath of surgeries, living life in a PICU, and not to mention dealing with a life threatening illness. Any one of these things could make someone anxious, but all three of them are a recipe for disaster. I am very pleased with the doctor's proactive stance with Mattie now, and he faithfully saw Mattie three times this week. Mattie couldn't wait to show Matt his remote control tarantula. Matt hammed it up, and they had a good time talking about the tarantula. But the tarantula also became a therapy tool, since it is a perfect opportunity to talk about what frightens and scares us . Coach Dave, did you realize how versatile this tarantula was going to be!? Mattie also had a visit from Anna, his physical therapist. There are some days Mattie is into working and some days Mattie wants to be left alone. Anna could tell the latter was true today but she still came in and talked with Mattie and also wished us a Merry Christmas. I could see that Anna was truly moved by our Christmas gifts to the nurses and staff. Anna said she did not plan on taking her necklace of "hope, faith, and love" off and thought the statement on Mattie's wrist band was very moving.

Mattie was discharged from the hospital this morning because he wasn't vomiting and appeared to be holding his own. I spent the morning cleaning up and packing the room, and Peter helped in between entertaining and playing with Mattie. Mattie loved having Peter around this morning and clung to him tightly. While we were packing Mattie had a visit from his friend Zachary, Zachary's sister, Alexandra, and his mom, Katie. Katie brought us a lovely homemade pumpkin loaf. Which is one of Mattie's favorite things! But what Katie helped us with tremendously was carrying several of our bags down to our cars. That was an enormous help! With the holidays at the hospital, we were innundated with gifts. The hospital itself gives many gifts to the children each day. The kids love it, but in a tight space it is hard to organize all this stuff. While Zachary was visiting us, two Marines came by with Linda and distributed toys to Mattie. They even allowed Zachary to get a toy. Thank you Linda for making this happen. The Marines were delightful, respectful, charming, and couldn't do enough to make Mattie smile. We took a picture with these fine gentlemen and thanked them for their work and sacrifice they make for us each day!

Once we had loaded up the car and said goodbye to Zachary we headed home. Transitioning home is never easy. Because we have to pick up our lives where they left off. We brought as much as we could into our home, so I could sort it and organize it, but I feel sorry for Peter's car. It has become the storage center for toys and hospital things. Mattie eased into being home but felt nauseous for most of today and did not want to smell food. At 5pm today, we had a very special visitor. Well a couple for that matter. Santa came over to visit Mattie at home. This particular Santa was Ann's uncle Ed. Ed and his wife, Helen, are following Mattie's story from Boston. Ed came dressed up beautifully with sleigh bells as well. He spoke with Mattie and delivered him two wonderful presents, legos and sculpting clay. Seems like Santa really understands Mattie's interests! Here is a great picture capturing that moment.

Santa also brought with him Ann's Aunt Helen, Dr. Bob, and Bob's older daughter, Katie. It was quite a Christmas team. They also brought us a wonderful Christmas Eve dinner, and Mattie loved the homemade cookies! Peter and I loved the ham, and of course Ann's spinach dip. But the true gift that was delivered this Christmas was when Bob sat next to Mattie and said to him that he thought Mattie needed access to both of his hands to open Christmas gifts. That immediately caught my attention because I knew where this was going. Bob asked Mattie how he felt about his cast coming off his left arm. Before I knew it, Bob had Mattie's arm unwrapped and we were all joking about the TERRIBLE smell coming from the cast. After all the cast was on Mattie's arm for about five weeks or so. Bob really surprised me because when I spoke to him last week about the cast he was preparing me for it to be on another week or so. So I never imagined it to come off today. The ironic thing is Mattie truly believes this was a gift from Santa. That Santa stopped by the Henshaw's to pick up Bob just so he could bring Bob to Mattie's home to remove the cast. How adorable! I snapped a picture of Bob and Mattie in deep discussion over this cast. Some how the cast being removed is a very symbolic gesture to me that physical healing is beginning. It is my hope with physically healing we can recapture some other aspects of our lives back. But I know we have a long road ahead of us. I know that when I see Mattie struggling to walk or try to use his arms. I realize I can't be pessimistic, but there are times, I wish Mattie had his sweet body back intact.

After Santa left, I tried to get Mattie to eat something, but he wasn't interested in the least. But he did have the energy to open up several gifts that were mailed to him. We want to thank Kazu (Mattie's buddy from SSSAS) for the wonderful snowing santa. It is fabulous and really puts you in the holiday spirit to see snow falling. We also want to thank Jane and Sandy (family friends of ours) for their care package filled with wonderful costumes, lollypops, and silly straws. That was very thoughtful, and Mattie will have fun dressing up! Especially as a doctor! Maybe he can go to the hospital this way and subject some doctors to some of the stuff they are good at dishing out. Thank you Emily W. (Mattie's babysitter) for the lava putty and scooby snacks. The lava putty is right up Mattie's alley. Anything gross and goopy to the touch is perfect. We also want to thank Marianne and Dave (our college friends) for their dino dig gift and the Pixar short films dvd. Dino digs are one of Mattie's favorite things to do and Mattie and Peter sat down together to watch the Pixar films and they enjoyed it especially seeing the evolution of Pixar as a company!

Last, but not least, I want to extend a special, special thank you to Susan H. Susan is a colleague of mine and besides being an outstanding mental health counselor, she also is an artist with the gift of designing quilts. I have seen many of Susan's quilts over the years at conferences, but I never thought we would get one personally designed for us. Today Mattie received a priceless gift, which clearly was a labor of love. The detailing and the stitching were incredible, in parts of the quilt it almost looks like the stitching zig zags like a puzzle piece. Susan wrote me a letter and I want to share a portion of the letter with you. Susan wrote, "When I first started reading your blog, I saw the picture of Mattie in a superman cape and thought how ironic this situation is. If only there was a real superman, I think his name would be Mattie Brown! His situation has most likely altered how people many decades older than he is view their own lives, what's important, what's valuable, etc. This quilt can be used as a signature quilt. I have enclosed some fabric pens for you to use. I thought perhaps Mattie would like friends, family, and hospital staff to sign their name, well wishes, etc. on the red and yellow squares around the edges." If you are interested in learning more about Susan, or seeing some of her other works, please visit her website: http://www.susanhoppenworth.com/. The quilt is spectacular and Mattie couldn't get over it, and the fact that it says, "super Mattie" really caught his attention. Mattie is already putting the quilt to good use tonight. Thank you Susan for this special gift, which we will cherish.

When Mattie arrived at the hospital on monday morning, there was a gift awaiting him in his room. It was a beautiful handmade wreath with snowmen on it. The snowmen can even light up. The gift was designed by Ellen, one of Mattie's very special HEM/ONC nurses. Several weeks ago, Mattie told Ellen that he liked the wreaths she made for the PICU. He told her he wanted on too. Ellen promised to make a wreath for Mattie, and what a wreath she made. It is adorable. I never thought we would be receiving gifts from the nurses. It seems to me they are our gift, and they deserve gifts in return, not the other way around. This wreath is very special to us, and I took a picture of it for you to see.

Today before we left the hospital, I saw Miki, another one of our favorite HEM/ONC nurses. Miki has helped me through some challenging times with Mattie, especially during the time Mattie had a bad reaction to his platelet transfusion. Miki gave me a lovely gift today and card. I would like to share a portion of what Miki wrote to me. She said, "I know things are hard and lots of thoughts are going through your mind every day. But you always keep yourself intact, having a nice smile on your face, and take such good care of Mattie and everybody else around you and your family. It always amazes me. I have great respect for you as a mother, as a wife, as person, and as a woman." Miki's comments meant a great deal to me today, and I will hold them dear and reflect upon them during all our tough times ahead. Miki gave me some wonderful aromatherpy products, that I will certainly enjoy using. I share with you the gifts that Ellen and Miki gave us, because I think this speaks to the caliber of the nursing staff at Georgetown. They are remarkable women! Something I am thankful for this Christmas season.

I also received a very meaningful and thoughtful letter written to me by a SSSAS father. Peter K.'s son was in Mattie's kindergarten class last year, and I am saddened I did not get to know Peter last year. I have had two opportunities since Mattie's illness to meet him and I am deeply moved by his caring, compassion, and support. His letter today is something that I will keep and read from time to time. It is a letter written by a parent who truly feels my pain and can only imagine what it must be like to walk in our shoes each day. Peter's letter made my Peter and I pause tonight. Because if I thought others don't really get it, I am wrong! You get it more than I know. I want to share just a sentence or two from Peter's letter. Peter wrote, "When I see Mattie's smiling face on the blog, I am shamed by my worldly concerns. I am sure many others feel the same way. In this sense, Mattie has already changed lives in a manner great people do but over the course of an entire lifetime. You and Mattie have accomplished this during your season of trial." Peter, I completely agree with you. Mattie is great, and he is certainly educating all of us about the importance, value, and meaning in life. Thank you for your kind letter, it means more to me than you will ever realize.

As I sign off this Christmas Eve, I want to wish all our readers who celebrate Christmas a beautiful, meaningful, and loving Christmas. I would be remiss on this special day, if I did not acknowledge all of Team Mattie and all our Mattie supporters. For all of you, I am forever grateful. We could not accomplish what we do without you. I sincerely mean this. I also want to thank two special members of Team Mattie, Alison and Ann. Alison, thank you for managing our Mattie Fund and for helping us with communications and outreach and Ann, what can I say? There is a special place for you in heaven. As my friend Lorraine says, "Ann=a miracle!" So true! Ann, we are thankful for your energy, your passion, and your hope for Mattie and our family. Thank you for doing an outstanding job coordinating the Team and for keeping the dream of a cure alive. With Team Mattie, I never feel alone.

"This is the message of Christmas: We are never alone." ~ Taylor Caldwell (1900-1985), English novelist.