October 29, 2005

Jack is Feeling Great!

Well we have gone 2 weeks with no chemo, only blood draws on Thursdays, and Jack is feeling great. The droop in his eyelid has gone, and it seems like he is a little stronger. We start back on the chemo this Thursday and we will have 11 weeks before our next 2 week break. The protocol is a bit different this time, not as strong.
His counts were at 1800 ANC on Thursday, so his immune system is doing well. One of the mom's of the kids in his class asked me if Jack has been sick with a cold yet, and I was so glad to say that he had not been. His teachers at school do a great job of keeping the kids hands clean, with mandatory handwashing through the day 2 or 3 times, I think that makes a huge difference.
Jack and Derek are taking thai-kwon-do at church and they love it! For Jack it is not only fun, but a mega therapy session, with all sorts of benefits that will help him. I feel very comfortable with Jack there because his instructor is also a doctor. So he can handle anything that might come up. Thank you God for that blessing in my boys lives.
I always love the holidays. I am sure this holiday season will bring many memories. Most people do not like the stores dressing up for the holiday season so early. I love all the colors and lights. I feel no more pressure to shop earlier than I normally do, I just love the Reason for the season and I am ready to break out the eggnog and hot chocolate for special family times.
The final decision for halloween costumes are: Derek - a ninja swordsman, Jack - Darth Vader, Sophie- Belle the princess from Beauty and the beast. As it is only Saturday there could still be fluctuation, but only 2 more days, and Jack has been counting down the days for over a week now, he is just about ready to explode with excitement to go trunk-or-treating up at church.
One of Jack's many personality traits is that he really is not a home body. He likes to go and do, all the time. He has been this way since I could understand his word for "go" at about 1 year old. Tuesday we got back from therapy after school and Jack said I don't want to go home, I want to go to a movie. After homework Rob and I took Jack and Derek to see Dreamer at the movies, with Kurt Russell, Dakota Fanning.... Sophie wanted to spend the evening with her grandma, so she was absent in the movie fest. The boys loved it, as did Rob and I. I highly recommend it, it was a great family movie, and the little girl worked very hard for her dream to come true. Fun night.
God has blessed us with awesome friends, family and a faith that holds on to a hope of eternal fun nights. When my kids and I talk about heaven we think of the most fun things we could do in heaven. Ofcourse we have no idea what heaven will be, but bringing the greatness down to a level that my children or I could even begin to grasp requires us to humanize it a bit. The event that Jack and Sophie talk about alot is cloud-hopping, could be considered a bit of an extreme sport here on earth but in heaven it is quite safe I bet. Derek is all about football right now and so he wants to play football in heaven. What do I want to do in heaven? I think that watching my kids cloud hop and play football will be fun, but I see myself sitting around Jesus and looking into His face, listening to His words, hearing His stories, He will be revealing mysteries that I never could have comprehended, and I will never want to look away. In front of me will be Exalted, Mericiful, Counselor, Yawheh, Alpha and the Omega, all my longing will be fulfilled in one moment a very long moment of eternity. I told my kids that and they just looked at me and thought that the cloud hopping and football seemed much more up there alley, and I say to them, just you wait until you get there and maybe Jesus will be the quarterback, and the most expert cloud hopper, but whatever you do Jesus will be right there in the center of it all. Thank you Jesus for being our Everything.

October 22, 2005

Pumpkin Carving Day

Today was a day that Jack, Sophie and Derek have been looking forward to all month. Pumpkin carving day. We took the kids to the store and let them pick out their pumpkins, which took about 45 minutes as they climbed over the pumpkins on the stacks of hay to find the right one. That was fun to watch! Then on to Bahama Bucks to try out their shaved ice desserts. It just opened up in town this week, also a highlight of the day. Then back home to begin carving the pumpkins, each of the kids designed their own, with a pen then I cut them out. Derek became preoccupied with the Tech and UT football game, so his pumpkin is still awaiting his design, he wants a football player pumpkin, don't have any idea how we are going to put that together. Jack wanted a scary dracula pumpkin and Sophie wanted a bride, so we had fun with that all afternoon. I love the picture of Sophie and Jack and the rabbit ears, 6 year old twins are so much fun (especially as compared to 6 week old twins), they are great friends.

New Hats From Aunt Jan in Missouri

Thank you Aunt Jan for the beautiful hats and scarf you knitted us. We love them. Like you said in your note Jack's head needed some extra cover this winter. 2 out of the 3 are eating which is pretty much normal around here. Jack is having his before bedtime bowl of cereal. Jack is having a great week, on his 2 week break from chemo, just a blood draw each week, his counts were good last Thursday, anc is 1400. More from the Marcelain's soon. Thank you for your continued prayers, Jack is blessed to have so many people pray for him.

October 19, 2005

I Learn to Bow

Jack is having a great week. We go in for a blood draw tomorrow, but he has a 2 week break in the chemo before he starts up the next phase. The next phase includes the same drugs, although not as high a dosage as in the induction phase.
Jack was able to play this week with his best friend from Kindergarten, Aaron. They are in different classes this year, and don't get to see each other at all during the school day. Definately the highlight of Jack's week.
Jack continues with his physical and occupational therapy. The chemo drugs affect his motor skills, so that service helps him.
We have had a quiet week this week. It feels great to just clean house and hang out with family.
I read a great book about a month ago, Walk On, the spiritual journey of U2. I have always like their music, but when I was younger and listened to it alot, I never paid any attention to the lyrics. After reading this book and listening to their music again, I realize most of their songs could play on Christian radio, they are inspirational and convicting. One of the people written about in a song that they wrote was an Irish boy named, Christopher Nolan. Here is a bit of what was said about him...
"Miracle Drug is a song based around the life and disability of Christopher Nolan, a school colleague of the band. After a difficult birth, the motor center of his brain was so damaged that he could not coordinate his limbs. His voice was so distorted that it was unintelligible. When he was eleven, he was given a new miracle drug called Lioresal, which relaxed his muscles so that he could move his neck ever so slightly. He was given a unicorn stick that was strapped to his forehead and allowed him to type. The family was aware that Nolan's mind was probably not as tattered as the rest of his body. They knew he was making an effort to read. However, the tiniest movement of his neck revealed a genius who had been captive in a dysfunctional body for years. He started to write, and poetry started to flow. He was fifteen when his first book Dam-Burst of Dreams was published. ...there were a couple of crucial aspects to his story that caused Nolan to end up in a song. The first was that when he finally got the chance to write, Nolan didn't rage at God but wrote his first poem, "I Learn to Bow." Bono was impressed with the attitude of a frustrated genius unable to communicate who saw being able to move his neck ever so slightly as the greatest blessing of life. Being angry with God seems a more natural response than to bow in worship."

What an awesome story, and what a testament to Christophers mother who read to her son without knowing if he really could understand or not, she read alot to him the book said, and by Christopher's first expression she must have read the Bible to him and passed on a faith that he totally "got". So many of us who have full use of our bodies, minds, that can speak, don't "get" it, like that boy did. We get frustrated at God when things don't work out like we would have hoped. I know that God wants us to be honest with Him about our feelings, struggles, good and bad, but sometimes I wish that my first response would be "I Learn to Bow." not "why God, why?"

October 13, 2005

From one end of the earth to the other.

I have had 2 days to let the good news about Jack's MRI results to sink in (see 2 posts below to get that full story), I think that I was in shock for the first day. We made it home in record time from the hospital and were able to attend church that night. What a celebration. Hugs, tears, rejoicing, prayers, praise, and more tears. When I got into HIP (our Wednesday night praise service) it was so great to praise God for His love and healing. I truly have felt that God has called me to a new level of faithfulness and acceptance to Jack's health. I was ready to hear whatever from the doctor that day and I would have been thankful for whatever I heard because God is in control, because Jesus died on the cross for us, he has won the race for us. We only need to be an extension of that love He has shown us. I was overwhelmed to hear the progress of healing, I thought, "boy, we will be lucky if the tumors have stayed the same". Well God showed me, He wowed me, He freaked me out. I worshiped unabandoned with a spirit of rejoicing, with a spirit of crazy love for Him. I don't ever want to forget what it feels like to be given a gift of life for my child. I am grateful, Jack has a story to share.......

Jack made a new friend at chemo today. His name is Derek, spelled just like our Derek (D.J. to those of you who haven't made the name switchover yet). Jack was watching Scooby Doo and Derek and his mom came in to meet us. Derek sat down with Jack and they became instant friends. Derek has leukemia. He is currently taking many medications, one of which is steroids, that is why he has very cute chipmunk cheeks. Derek is 6 yrs. old and I think is in his first year of diagnosis, he has a total of 3 years on chemo. Derek and Jack were sitting next to each other and after about 10 minutes, Jack slowly lifted his hat to show Derek he was bald, and Derek shouted, "Hey, you're bald, me too!!" He lifted his hat off and showed Jack, then Derek said, "We must be twins because we are both bald." About 2 minutes later Derek noticed that Jack has blue eyes, again, "Hey, we really are twins, we both have blue eyes." I think Derek commented on their twinship about 20 times in the 2 hours they were together. How nice it is for them to sit by each other and feel connected, a kinship. They sat together and laughed at scooby then parted ways. How cool is that!

The joy of the Lord and His church that binds us together is such a blessing. People all over the world keep up with Jack through our family, the blog, many different ways I guess. I love to check the sitecounter on this blogsite and see the people who check on Jack from one end of the earth to the other. Alot of the long distance prayers started through Rob's dad, Robert, who lives overseas. He has many friends and he talks alot about his grandkids. One of my favorite stories about Rob's dad, was that one of his co-workers was surprised that he only had 4 grandchildren at the time (now he has 5), because he had so many pictures of them on his walls at his office. Rob's dad works in Kyrgystan which is in the former Soviet Union. He sent Rob and I a forward of an email that was mailed to him, I don't think that the sender will mind if I include it in today's post.

Elena Z. wrote

Thank you for sending me this update!!!!!!!! This is the EXPECTED ANSWER to my and not only my prayers!!!!!!!!!!!!!!!!!!!!!!!!!! We prayed for Jack together with Yelena K., payroll accountant! God bless her, I thank God for her heart as she keeps on praying for Jack like she knows him very well, like he is in her heart!!!! And you know, God has put the desire into my heart to proclaim (not just to read silently), but to proclaim all verses re healing I have (I have printed them out and they are on the wall in my room here) replacing "you, My people, etc" in verses with Jack Marcelain, actually what I did yesterday, today at lunchtime. I am sure apart from us many and many people pray for Jack! You see, God keeps everything under His control!!!! Thanks Robert, it is really very good news!!! and will be much better!!!

These women from a foreign country pray for Jack, a payroll accountant, Yelena, keeps him in her heart. God bless these women and the men and women all over who pray for Jack. He is in my heart, but I so gladly offer his testimony and updates to people so they will see the journey of a child who is sick, his family, and the Awesome Power of the Lord. All praise and glory I give to the Lord.

A new friend

Jack and Derek (a new chemo friend)

Dallas Trip

This is a picture of Jack holding his freshly made Batbear in front of the Rainforest Cafe, the alligator is in the mist next to him. We always make a point of adding some serious fun to the trip so it is not only about tumors.

October 12, 2005

Not Only Is It Working....

Well, I am humbled, crying, amazed....Jack's tumors have shrunk by more than 50% than where we were just 11 weeks ago. Dr. Bowers said, this is the best case scenario, we could have ever hoped for. What great words!!!! Thank You God. The chemo and mannatech are kicking tumor booty and taking names. I am so grateful, it seems that I can close my eyes and see Jack as a grown man again, for the very first time in a while. Jack will continue on with chemo as scheduled and we will see it through to the end, but it looks as though Jack is on his way to being tumor free. We have about another year left of chemo, but it sure makes it easier to think of that year knowing that it is working and doing its job.
Father God, thank you for the medical opportunities Jack has had, thank you for Your Healing Hand, and all the transformations you have made, physically on Jack, and emotionally and spiritually with all of us that love Jack so.
We will be home later tonight!!!
By His Mercy, Tammy

October 10, 2005

Is it working?

We are going to Dallas today, it is about 7:30 in the morning and Jack is ready to hit the road. We will wait for Rob to get off work and leave after lunch today. We will find out the results as to whether this protocol of chemo is working or not.

Matt 7:24,25
"Therefore everyone who hears these words of Mine and acts on them, may be compared to a wise man who built his house on the rock. And the rain fell, and the floods came, and the winds blew and slammed against that house; and {yet} it did not fall, for it had been founded on the rock."

The confidance that we are assured by these words of Jesus give me that peace that passes all understanding.

Thank you God for the blessings you reign down on me. Blessings of family, 3 beautiful children, my husband, church family, friends, all the people who pray for Jack and keep up with him through this site. I recently read a bit of this book and I wanted to share it with you.
Karen Kingsbury,author
Let Me Hold You Longer, title

Here are some excerpts:

Long ago you came to me, a miracle of firsts:
First smiles and teeth and baby steps, a sunbeam on the burst.
But one day you will move away and leave to me your past,
And I will be left thinking of a lifetime of your lasts. . .
The last time that I held a bottle to your baby lips.
The last time that I lifted you and held you on my hip.
The last night when you woke up crying, needing to be walked.
When last you crawled up with your blanket, wanting to be rocked.
The last time when you ran to me, still small enough to hold.
The last time that you said you'd marry me when you grew old.
Precious, simple moments and bright flashes from your past-
Would I have held on longer if I knew they were your last?
Our last adventure to the park, your final midday nap,
The last time when you wore your favorite faded baseball cap.
Your last few hours of kindergarten, those last days of first grade,
Your last at bat in Little League, last colored picture made.
I never said good-bye to all your yesterdays long passed.
So what about tomorrow- will I recognize your lasts?.....

Before we found out about Jack's tumors I took all these for granted. I don't anymore, the pictures that Sophie colors for me, the hugs that Derek gives me, they are less now that he is older, but that makes them so much more powerful, Jack's kindnesses that he shows me and others. How could I have not relished in everyone of these before April? Don't get me wrong I appreciated them, but I didn't relish them, I wasn't overwhelmed by them, they didn't stir my heart, they didn't bring tears to my eyes, I didn't store them up as treasures in my heart to remember long after they have left my home and gone on to make their own way in life. Like this book says, will I recognize the last time? probably not, so I better appreciate them to the fullest now.

God's peace and blessings to you this week. Take God out of the box you have put Him in and let Him show you the blessings in your life, let Him "wow" you in your own life, find the joy in the middle of a work day, or in the middle of cleaning house. Most of all I pray for you as I do for myself, "Lord show me your glory on earth, I can only imagine the glory you have waiting for us in heaven." In your sweet Son's name, Amen.

We will plan to post on Wednesday about lunchtime what we find out with our meeting with Dr. Bowers.
Love, Tammy

October 05, 2005

Strong Little Man

Jack had a good chemo today/tonight. His chemo appt. was at 2:30 the port access line was put in about 3:00pm and then Nurse Sara tried to draw his blood through the line, and it was giving her trouble. She ran some saline through the line and it was clear, just cantankerous, so she had to draw Jack's blood through a needle stick in his arm. So he got 2 sticks today, bummer. He stayed strong, just a couple of silent tears. What a trooper. I always feel so helpless when he gets stuck, and he just takes it like a strong little man.
His counts were good, 1400 anc. So he is holding up well this week. He must have had some sort of a bug last week because he was sick off and on for 4 days, starting with his chemo day. I never knew if it was from chemo or a stomach virus. He has had 3 good days!!!! Hooray. He has felt good, done well at school, and had energy to play too.
Thursday night Jack, Derek, and Sophie were invited to model some clothes on a runway at the civic center, for a cancer fundraiser. They all seem pretty excited. Each of them were able to pick out their clothes from a designated shop, so that made it even more fun, as they are wearing clothes they really like.
Rob's sister Tamara and her kids will be here next week and she will be staying with Derek and Sophie while we go to Dallas. Jack's mri is Tuesday morning, the clinic visit with Dr. Bowers was rescheduled to Wednesday morning, and that is when we will find out the results. Then onto a visit with Jack's rehab dr. from Baylor. Then home again. Please keep that visit in your prayers. We will stay at the Ronald McDonald House which makes Jack jump for joy.
I am feeling better about Jack's bald head. I looked at a picture of Jack with hair, and it seemed weird. So I guess I am getting used to it. Another side effect of the chemo is his right eye lid is drooping a bit. I checked with Dr. Bowers today about that, and he said that it will go away 2-4 weeks after the chemo is over. It is reversable.
Jack also had a check up with Dr. Moody, his opthamologist, and his eyes are doing great.
That is the rundown on Jack this week. Thanks for keeping up with us.
Love, Tammy

October 03, 2005

He knows people love him.

Hello October -
Jack, Sophie and Derek have already chosen their costumes for trick or treating/church trunk or treat about 3 times, and continue to change their minds on a regular basis. I thought it would be funny for Rob to be Dr. Evil and Jack, Mini Me, although Jack has no clue who either of those characters are, Rob did ask him to put his pinky up to the side of his mouth and laugh. I am sure that if Jack ever saw Austin Powers he would be all over that, but as that is definately not appropriate for his 6 year old mind...I guess we will have to pass on that idea. We will see what their final choices are when they make a final decision about October 26th. My kids have always loved to dress up so whatever they wear on this halloween will be a new costume for them to dress up in for the next year, over and over and over...we always get our moneys worth on costumes. One rule, never anything scary, evil or gross.....

Last week I left out a bit of the head shaving story. After discussing it with Rob he was fine with me posting it..... After Rob and Jack had their heads shaved, all the family went out to load up in the van and I waited at the counter to pay, the hair dresser that cut Rob's hair said the total was $11, I didn't know if she was charging me for one or both of the cuts, because each had a different stylist. So I asked her about the total, and she said, "Well your sons hair was $7, but, um, well, uh, your husband's well, uh, well his was $4 because well, um, he didn't have very much hair to start with." When I told Rob about the charges we both got a good laugh out of it. The benefits of losing your hair...

Last Friday at school I asked the counselor if she knew where I could buy a Wylie hat for Jack, she said she would find out and let me know. After I left school Robin (the counselor) called me back about 20 minutes later and said Jack was just given a Wylie cap. In that short time, Robin asked Donna (the secretary) where I could get a Wylie cap, and then Donna called her husband, Coach Lang, at Wylie High School, told him about Jack losing his hair...and was there an extra cap that Jack could have, Coach Lang, immediately left the high school and drove to the elementary school where he presented Jack with his own Wylie cap in front of his class. When Robin told me what had happened she said Jack was smiling ear to ear.... he is very proud of his Wylie cap and wore it all weekend. There is a whole support team for Jack at his school, people who check on him, smile at him, love him, every day. Jack is one lucky kid. He knows people love him.

"Let no one ever come to you without leaving better and happier"....Mother Teresa