Sunday, October 19, 2008

Sunday, October 19, 2008

Thank you Susan S. for tonight's quote. Thank you for the Guideposts and Daily Unity prayer requests too!

"Miracles tumble out of the sky and fall into the laps of those who expect them." Sally Huss

Mattie slept until 10:30am. A major record! Mattie was excited today to be able to spend the day at Campbell and Livi's house. Campbell is a good buddy of Mattie's from SSSAS. Mattie was motivated to get up and dressed! Mattie was excited to play today and jumped right into it as soon as he got to Campbell's house. Thank you Christine for watching Mattie, while we went out to lunch (thanks Mommy and Daddy for taking us to lunch) and then walked a nature trail. We won't be doing this for a while, and it was so nice to be able to enjoy today's sunshine. Thank you Christine for this wonderful gift of time, and a peaceful moment for part of the day. It may be our last peaceful moment for a while. Christine let me know that Mattie ate up a storm and she tried to accomodate him with all his food demands. Mattie had a great time playing outside and simply enjoys his time with Campbell and Livi (Campbell's sister). Christine, it is moments like today, where I must say I miss aspects of my former life. I always enjoy getting together with you and seeing the boys play together in their creative manner. Thank you for a great day, I know Mattie had a wonderful time and did not want to leave. Below you will see some fun pictures from Mattie's playdate.

Mattie, Livi, and Campbell climbing on their pretend fort!

Mattie loved pulling Livi and Campbell in their red wagon. They were pretending it was a taxi!

When Mattie got home later this afternoon, he was greeted by JJ. You can see Mattie and JJ playing together in this picture. Thanks for the good wishes tonight JJ!

At around 6pm, Mattie and I did a dressing change of his central line and then we packed up for the hospital. When we arrived at the hospital, we met Kathleen (one of Mattie's excellent nurses) and Angella (one of Mattie's lovely nurse techs) in the parking lot. We had a lovely visit with them, and it speaks to the connections we have been making with folks at Georgetown. On our way into the building, we ran into Tricia (one our favorite nurses). It was quite a greeting tonight. So we are checked in tonight and Mattie is beginning hydration for tomorrow. Mattie's surgery is at 7:30am, and they will most likely come up at 6:30am on monday to bring him to the OR and we will be with him until he is sedated. We have been told that the surgery will be a minimum of 6 hours, with two hours afterwards in the PACU (post anesthesis care unit). We will try to keep you updated throughout the day, since someone from the hospital staff will report to us periodically.

I would like to share three e-mails with you tonight. One is from Maria H. (a parent of an osteosarcoma survivor, and a major supporter of our family), the second if from Naomi Fischer (the mom for my lifelong friend, Karen, in NY), and the third one is from Grace (our good friend from RCC). Maria H. wrote, "Just a short note to wish Mattie, you and Peter good luck tomorrow. You know, "luck" is God's nickname, so I am really wishing you that God will be with you, and I know He will. You and Peter have done everything right to prepare Mattie for surgery. I think he is ready and so should you both be. Now, take a deep breath and put all of your faith in God. Before Teresa's surgery, I prayed and told God: "We've done everything that we've could, now it's YOUR turn to do your part. Help us, please." I know you are a believer and I wanted to share with you how much peace this simple prayer brought to my mind, to just let go of all my humanly worries and realize that there is, in fact a Higher Power that watches over us. Remember that verse in the Gospel? 'A hair does not fall off your head without God knowing of it' was all I focused on. I knew He'd be watching over Teresa and us, and He indeed, did. And I can tell you now, the whole ordeal -not just the surgery, but all the months we spent in the hospital- developed in a fashion nothing short of a miracle. So believe that He will be there to help you out, to comfort you in your pain. Our mass and our communion today will be offered for Mattie's successful surgery and speedy recovery, and we will continue to pray for him at dinnertime. God bless you all. Be strong!"

Naomi wrote, "I want you to know I read your blog every single day. It is a document of love, courage, insights, inspiring and inspirational actions by you, your friends and family. I hope doctors and other health practitioners read it, because it illustrates the enormous gulf between what medicine can do and what other needs the patient and his/her family -- both emotional and physical -- have to be considered as part of treatment. You, Peter, and Mattie himself astonish me in what reserves of love, spirit, creativity, sensitivity, fight and intelligence you can call upon every day. You are all so remarkable. And because your blog has drawn me closer to you all, I want to tell you that my thoughts and prayers are always with you, and that tonight and tomorrow my heart is with you."

Grace wrote, "You and your family are always on my mind and in my thoughts and prayers, but even more so this weekend. I'm thinking of you constantly as this huge event looms. It's no wonder that you're too preoccupied to notice a flower and Peter is frustrated about not being to watch a baseball game--one simple pleasure that he is so entitled to and should be so easy to do; your world is full of complications, and a baseball game shouldn't be one of them!

But during this tense time, I again must redirect your attention to the fact that you have have been so wildly successful in making Mattie one very happy little boy; he does notice the flowers, and wakes up with energy wanting mom's homemade breakfast to fuel the day that he is so looking forward to. The fact that he is having such a wonderful time with his friends this weekend shows that, once again, you have done a beautiful job in preparing Mattie for what is in store tomorrow and in the coming weeks; he's busy being a happy boy, not overshadowed with worry. And he is so prepared because you and Peter are wise beyond your years. You don't simply take the advice that is given to you; you weigh it against your own research and combine it with your great gut instincts and knowledge of your son. On the eve of Mattie's surgery, I imagine you must be filled with thoughts of "I hope we're doing the right thing." Well, squash those thoughts. Just remember you and Peter have not made a wrong move yet. You both work so hard to be well informed in every respect that you have become masters at this. And that wonderful blog of yours will someday help countless parents down the line do the same. As we read your blog, you're changing so many of our lives for the better, but most importantly, it reinforces that you're doing the best thing possible for Mattie. "

On the electronic front, we want to thank Kim, Karen, Susan, Emily W., Lorraine, and Margaret for your wonderful e-cards and Brian Boru, Ms. Pollak (Thank you for explaining why Native Americans hold feathers while they pray... birds fly high in the sky, it is believed that the birds carry prayers to God in heaven.), Coach Dave, Bob N. (for his prayers), and Hunter and Jackson M. for your great e-mails. We also want to thank Father Carlos for the prayers he is saying on Mattie's behalf in Bolivia.

I leave you tonight with an inspirational story which was posted on the Guideposts website. Thank you Susan S. for sharing this with me. It is a very sensitive story, and speaks to powers well beyond our human comprehension. Thank you all tonight for your e-mails. They mean a great deal to us. Please keep Mattie in your prayers and thoughts tomorrow. Mattie is in God's hands tomorrow, and of course Dr. Bob Henshaw's. I pray that God gives them both strength.

A Mother’s Hope (a story of faith from the Guideposts website)
Were the doctors wrong or was my son’s cancer really untreatable?
By Tiffini Dingman-Grover Sterling, Virginia

Something was wrong with my son David. He was a big kid, eight years old, 150 pounds, but he had lost his appetite. He’d stopped telling jokes, too, stopped being his usual happy-go-lucky self. His jaw hurt for no discernible reason. He began throwing up. We thought David was suffering side effects from his medication for attention-deficit disorder. Then he threw up in the car on the way to his favorite restaurant, and the pediatrician told us to get him to a hospital immediately.
The emergency-room doctor was young, a resident. He checked David over, shined a light down his throat. He was so shocked by what he saw, he uttered something I can’t repeat in polite company. The doctor apologized and said, “We need an MRI immediately.”
I noticed the nurse crying. What did she know that I didn’t? Hours later, at 2:00 a.m., I found out. The diagnosis was still imprecise, but David was being admitted. To the oncology ward. “A massive growth is pushing into your son’s throat,” the doctor said.
“Mommy, what’s wrong with me?” David asked.
“You’re going to be okay, sweetheart.”
“You’ll make it go away, right, Mommy?”
“Of course I will.”
They gave David pain medication and he soon fell asleep. My husband, Bryn, and I lay on the floor. The room had a recliner chair, but neither of us could figure out how to work it. My mother-in-law had already taken our two older boys, Matthew and Keith, home. In the dark I tried to pray. But all that came at first were memories.
David was our youngest child, our baby. I loved him more than I knew it was possible to love anyone. We had a goodnight ritual we went through no matter what kind of day it had been. I would say, “You.” He would say, “Me.” And together we would say, “Forever. Sleep with the angels, roses on the pillow, sleep with Jesus.”
You, me, forever. Lying on that cold hospital floor, I felt fear and anger build. Twice before David I had gotten pregnant only to lose the baby. God, you didn’t give me David just to take him away, did you? A piece of medical equipment beeped. Can you at least give me some kind of answer? Some reassurance? Silence. I waited in that silence a long time. No answer came. Fine, I finally decided. I’ll do it myself. David was going to live. No power on earth would take my boy from me.
David did have cancer, in one of the worst places possible, at the base of his skull. His particular cancer was called rhabdomyosarcoma, an aggressive tumor spreading across much of the left side of his face and pressing on his carotid artery and optical nerve. It was why his jaw had hurt and he had felt so sick. It also explained his mood swings.
The tumor was right next to his brain. So close, in fact, that surgery was out of the question. David’s only chance was intensive chemotherapy and radiation. Even then, only half of kids diagnosed with his kind of cancer survived five years.
Those odds didn’t daunt me. I was determined to will David back to health. Bryn and I both worked for a computer software company—I handled finances, Bryn managed the warehouse—and our bosses generously allowed us to take time off and work odd shifts to spend as many days and nights with David as possible.
We became his nurses, his coaches, his constant companions. He had an IV line inserted in his chest. We learned how to clean it and check for infection. His eyes developed nystagmus from the pressure on the optical nerve. We made certain his patch stayed in place. When he had trouble breathing, we held the oxygen mask to his mouth.
As David’s treatment advanced, doctors told Bryn and me that his chances were even worse than most kids’. The cancer was too deeply entrenched. I refused to be discouraged. Although the chemotherapy left David skinny and weak, I urged him out of bed every day to walk down the hall.
We reached our insurance company’s one-million-dollar coverage cap in 11 months. After that, we faced bills up to fourteen hundred dollars a week. Not going to stop us, I thought. I began selling off clothes and other things around the house.
Much later, when we learned that only an expensive experimental surgery had a chance of saving David, I even went on eBay and put up for auction one of the “Frank Must Die” bumper stickers Bryn had made—“Frank” was our family nickname for David’s cancer, short for Frankenstein. I told potential bidders I was trying to raise money for my son’s cancer care. Amazingly, we got some media coverage—a reporter at our small hometown paper happened to know someone at the Washington Post—and money came in. The support was wonderful. Still, David wasn’t getting any better.
One night in the hospital he sat up in bed and said, “Mom, the angels came to talk to me. It’s time for me to go.”
I peered at him through the dimness, fighting to stay calm. Was he dreaming? “You saw angels, David?”
“They’re here with me now, Mom. It’s time to go. I’m tired.”
I struggled to control my voice. “Sweetheart, I know you’re tired. But you’re not ready to go. Fight. Stay with me. Just stay with me a little while longer.”
I rushed out of the room and told the nurses, then called Bryn and asked him to gather everyone. I was about to start praying when a nurse came up to me. “Tiffini, I’m sorry. David’s vital signs are very low. This could be the end. We’ve done everything we can for him. His little body is worn out.”
I went back to David’s room and sat in a chair in the dark. Again, my fear surged and I felt it form into words. I started to pray, then stopped. Something pressed on me, some resistance. God? Or just my own exhaustion? I was deeply tired. Tired of fighting. Tired of fruitless hope. Why, God? Why? He’s mine. You can’t take him!
Again the pressure, the resistance. Only this time it had a shape, almost like a blanket settling over me. A calmness, a sense of release. I heard words: David is a gift. Love him. Don’t own him.
The calmness deepened and I found myself repeating that word, “gift.” I had been trying so hard, throwing every ounce of strength into David’s life. What if that life wasn’t mine to have, to direct according to my will? What if the best thing I could do for David was give him to God? Lord, David’s life is a gift from you, not me. Let your will be done.
I looked up. Our entire family was there. They kissed David and said goodbye. When they left, Bryn and I sat together in the room, holding each other, crying and praying. We didn’t stop until 7:00 A.M., when David suddenly sat up. We looked at the monitors. His vital signs were normal.
“What are you guys doing?” he asked.
“David? Are you all right?” I asked.
“Um, yeah.”
“Can you remember anything at all about last night?”
David cocked his head. “You mean about Jesus? Sure. He told me I could stay awhile longer. There’s more for me to do.”
“You...talked to Jesus? Did you actually see him?”
David made a face. “Mom, come on. He was too bright. I could only see the angels. They were gold.”
“But you feel okay?” I asked.
“Yes, I feel fine.”
Today David is a challenging 13-year-old. The road has not been easy. Radiation and chemotherapy did not rid him of cancer. We ended up taking him to Los Angeles for an experimental surgery that removed nearly all of his tumor.
Sometimes I think of the anger I felt that awful first night in the emergency room, my fist-shaking on the cold hospital floor. I don’t blame myself for it. I’m a mother, after all. And I suppose I needed to pass through that anger to learn the lesson of my son’s illness. As is common with kids who survive cancer, David lives with side effects from radiation and surgery. He has good days and bad days. Yet he and I both know that each and every day is a gift. And that it is a blessing to say each night, “You, me, forever.”