September 29, 2005

"Be not dismayed, for I am your God"....those words bring warmth to my heart.

We just got home from a very long day at chemo. Good news is Jack's anc counts are back up into the 2000 range. So glad about that. He wasn't feeling well this morning so he didn't go to school before his chemo appointment. A long day of doing nothing but sitting in a chair and watching movies made him very tired. He was set on buying his class more donuts today then finishing out the day at school. By the time we left school was out, he is not too happy about that! Next week we have chemo on Wednesday and he will be able to go to school most of the day Wednesday before his appointment. He definately does not like missing school.

He is enjoying his bald head. All the kids were kind to him at school, but he does want them to see the Charlie Brown movie that Dallas Children's gave us about a little girl who loses her hair from chemo. I think he likes to know that the other kids have some information about what he is dealing with. Information for Jack is a good thing. I am glad to be home, and Jack is now taking a much needed nap. His MRI is less than two weeks away, keep that in your prayers.

Some exciting news this week is we received the packet for Jack's Make a Wish Trip. I just need to fill it out. I think Jack has decided on DisneyWorld. Once we explained to him that his ideal vacation didn't have to be at the local hotel, he opened up his horizons a bit. We are looking at maybe next summer or the summer after that. Just depends on how Jack's treatments are going.

I have been a little sad this week since Jack's hair left his head. He just "seems" so much sicker now, not that anything has changed, but you can't help thinking about the tumor more seeing all the scars on his head. I think it will just take a couple more days to get used to it. The receptionist at chemo asked if I was o.k. that I seemed a little down today, and the tears started rolling. Some weeks are easier than others. I think on this scripture alot..

".....for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith of greater worth than gold, which perishes even though refined by fire - may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed. " 1 Peter 1:6

and this one..

"Fear not, for I am with you. Be not dismayed, for I am your God. I will strengthen you. Yes, I will help you. I will uphold you with my righteous right hand." Isaiah 41:10

We will talk again soon.
Love, Tammy

September 27, 2005

A Wonderfully Made Head


Today Jack told the nurse at school he was losing his hair. Nurse Huff and Jack have formed a sweet bond. Jack makes more than a couple of trips to her office a week, and sometimes day. Jack needs a Nurse Huff fix on a regular basis. I don't know if it is the refreshing coolness and quiet peacefullness of her office, the hugs she gives, or the special attention that he gets from her, but he is drawn to her office. Today I spoke with her and she commented that Jack said he was losing his hair. I had noticed quite a bit of thinning in the last 10 days, but didn't think he had noticed it. I asked him about his hair comment to Nurse Huff, and did he think he was really losing his hair? He said, "Yes mom, it falls out all over my papers at school and my clothes too." So I asked him if he wanted to go and get a good trim and then when it fell out he might not notice the hair so much because it would be shorter, and he said, "I want it all cut off, I want to be bald." After talking him through all the options of hair length he was stuck on the "no hair" decision he had made. I am not sure why he felt like it all had to go (I do know that I have read in some of my cancer/chemo books that it says some kids like to have that control over losing their hair rather than watching it fall out), it was looking like most would over the next while anyway, and he wanted it cut tonight. So we all went to the hair shop, and off it went. I wanted to plead with him, let's just keep it a little longer, maybe a little on top to spike up, he is skinny, pale and now bald. I wasn't planning on crying, hair grows back, it is not forever, it will grow out in a couple of weeks, but it tightened my chest, took my breath, and brought tears streaming down my cheeks. I think Jack looks awesome, what a sweet face, smile and lips, and as if his eyes didn't pop out of his head before they sure do now. Rob had his head shaved too, so Jack and his dad are twins. I am glad Rob is willing, able, and right by Jack's side to support him with matching haircuts.
The scar you see on Jack's chest is where the surgeon made the incision for the port where the needle for his chemo to go through.
Holy Father, thank you for Jack and his brave spirit. Thank you that he is such a blessing to me.
I will give thanks to You, for Jack is fearfully and wonderfully made; Wonderful are Your works, And my soul knows it very well. Psalm 139:14
In the name of Jesus, Amen

September 26, 2005

Hammered

I have arrived back in Texas. I left Phoenix and it was 91 degrees, and came home to a 105 degree record breaking day. Glad I got away from the heat and went to Arizona! I am so glad to be home, everybody did well without me. Jack took his mannatech like a trooper, Rob and Elaine said the kids did great, but thank goodness they all missed me. I had a wonderful time with my siblings and enjoyed my sister Becky's wedding immensely. I love weddings and when you feel God's blessings are all over it, it is awesome! Congratulations again to Becky and Dallas.

I have had a thought on my mind lately, struggling with I guess. I am searching for consistence of thankfulness in my life.
In First Thessalonians 5:16 it says

"Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus."

I see this scripture every day atleast 20 times, it is painted on my wall in my kitchen. I have looked at it and read it so many times I don't know how many, but I don't think I have ever let it sink in. My nature is to be thankful and grateful for all the good, but if something doesn't go just right I might not verbalize it, but I can be miffed at the circumstances, wish they were different, pout about it, I most likely will forget about it pretty quickly, I tend to move on rather than sit in the mud, but I am not very often thankful about it before it leaves my brain. I want to take what the Bible says seriously, I want to read the Bible fresh everytime and let the words transcend my soul, and then ask God to change me to be just like what I read! It seems like this verse has been easy for me to read over but not really apply to the reality of my life. God is convicting me of this, he is hammering me over the head with this verse. I want to be thankful for good and bad, I want to be thankful for days that didn't go so well, days that wore me out, days that made me cry. Why do I want to be thankful for all that, because I want to be in the world not of the world, I want my actions to testify for the power and blood of the Lord Jesus Christ. Only the transcending power of the Holy Spirit that dwells in me can make that happen, but I have to die to my nature to let it happen. The word die sounds pretty harsh to some, but it really is the easiest part of the equation, what God does is supernatural. I hope to never be comfortable where I am, but always seeking what God's will is for my faith in Him. The rewards are endless from Him when we focus on the cross in a world filled with so many distractions. Thank you God.

Thank you for your prayers for Jack, chemo this Thursday, and for the weeks following. We go to Dallas October 11, for his MRI and clinic visit with his oncologist Dr. Bowers. The MRI will tell us if the tumors are growing or not. The chemo will continue if the tumors have stayed the same or shrunk at all, if the tumors have grown they will change him to the next protocol of chemotherapy. We are praying for Jack to have a great visit and awesome results. Love to you all.
Tammy

September 22, 2005

Fingerprints

Jack had his chemo this morning, his counts were low, 857 anc, please keep Jack and his wellness in your prayers. Jack had that stomach virus last week and hasn't had much of an appetite to speak of at all. Because nothing sounded good to him, the couple of times I had him take his mannatech he didn't keep it down. One whole week without any extra nutrients in his system, I suspected that his counts would be low. I find it truly amazing that these nutrients make such a difference in his system. Every week it seems his counts are related to how much mannatech he has taken.
Big thanks to Karene Neill who took my place today with Jack. I am in Arizona to attend my sister's wedding on Saturday, and Karene kindly took Jack to chemo for me. I am sure that Jack had a great time with her, and not only is she a friend, she is also a nurse, so who better to take him, thank you Karene! I am glad that we have so many people around our family who support us. I never take for granted just how different our life would be without faith, family and friends.
I can not tell you how hard it is for me to be away from my family, but it is important for me to support my sister and her soon to be new husband, I am gone for 3 days but it will be a gut-wrenching 3 days, especially with Jack's counts low. I remember one time before I was married and I went on a holiday with about 5 girlfriends, and one of my friends was calling home to speak to her children and husband, after she hung up she just cried and cried. I know now how she felt. The bond of motherhood does not just take a break when we step out of the daily grind for even a short time.
I appreciate Rob for being a single parent this weekend, he was happy for me to go, but I know that between work and home he is going to be busy, busy, busy....
Lord, thank you for that man.
Thanks for your continued prayers, once again, pray Jack takes his vitamins, and stays healthy. To plajorize Sarah's blog, I see the fingerprints of God all over our family, in the form of the hands of His people ministering to us. Thank you for that ministry. I praise God for you.
Love, Tammy

September 16, 2005

My Nana -the Hayride and Fishing



Cowboy Jack


Nice Outfit!
Swim Trunks
Bibleman Shirt
Cowboy hat and boots

Donut Boy Brings Hoots, Hollers, and Cheers

Jack's chemo went well yesterday, his counts were at 1400, so he is keeping them up. He had a bit of a stomach virus this week, so I was glad to see that all was fine with his blood counts. Jack also had an appointment with the oncologist, Dr. Bowman, from Cook's Children's in Ft. Worth, he comes to Abilene once a month to check all the kids under his care for chemo. Dr. Bowman was happy that Jack seemed to be tolerating his treatments well. The only notable side effects besides the nausea were that Jack is definately losing some control of the muscles in his hands and feet, but mostly his hands. He has a hard time holding onto stuff without dropping it. Note to me, have Jack carry in the paper towels not the eggs from the grocery store. Jack doesn't notice his "clumsiness" at all, he just picks up whatever he has dropped and can do this 3 or 4 times in a row and doesn't even seem to notice that this is not normal. The area which affects schooling most is his handwriting, Dr. Bowman asked Jack how his penmanship was and Jack said, "great". Love that positive response! Between you and me his teacher had it o.k.'d to give Jack his spelling tests orally because many times his written words look as though he lives in China. Bless him.

Yesterday morning I was returning Jack to school after his appt. with Dr. Bowman and Jack had asked if we could stop by
AM Donuts and bring his class a treat. I am always happy to help Jack be excited about entering the classroom so I quickly said "Yes, great idea!" We walked in to his quiet classroom. The kids were focusing on the teacher at the front of the room, and they they turn their eyes to Jack and he says, "I've got donuts, for you (he points at his classmates) I brought plain glazed and for you and you (points at his two teachers) I brought maple". Then he sits down at his desk with a huge smile on his face. That smile was worth the $9 spent on 2 dozen donuts. The quiet obedient classroom became a room full of hoots, hollers, and cheers, hands in the air, it was like looking up at the fans from the sidelines of a football game. It was hilarious, although Jack did say the class had a hard time settling down after that, sorry Mrs. Ake and Ms. Isbell. When I picked Jack up from his class later that day to take him to chemo his friends were still grateful for the donuts and many of them thanked him again. What sweet kids.

We were blessed by having Rob's dad with us this week. We all love when he comes to Abilene, we had a great time and can't wait to see him again. This last weekend we went to Pirtle Pines Ranch in Milano, Tx for a family gathering. We had a great time, it was beautiful. Pirtle Pines is a deer lodge, but it is more of a real fancy home with a ton of rooms in it, like a bed and breakfast. It was a sweet time to be around family, my grandparents, aunt, uncle, cousins their families and Rob's mom Elaine went. There were about 25 or so, one of my favorite things was, my 86 yr, old grandmother whom we call Nana went on a hayride with us, she smiled so big I am sure her muscles were tired. I sat right across from her and got to see how she loved the ride. My Nana used to be very active, she was the best fisherwoman I have ever known. It wouldn't be unusual for her to be neck high in lake water trying to get her cast to the right spot. She could fix a meal for 20 people in less than 30 minutes and it might be the best meal they had ever eaten, she never stopped or slowed down. Her health has slowed her down and now she has been forced to watch others be busy around her while she wishes that she could be busy again too. She has parkinsons and diabetes, but the mind of a 20 yr. old. Very sharp. So to see her be lifted in her wheelchair onto the trailer for the hayride was a joy I will never forget. She smiled from start to finish. Thank you God for that. Many great times for everyone this weekend, horse rides, hay rides, jeep rides, Sunday morning worship, and ofcourse some serious fishing going on. We also saw some beautiful dear with large antlers, exquisite animals. Sunday morning we all gathered in the living area of the main house and worshipped God through songs of praise, old and new, took communion, and awesome prayers. Tears always flow for me during times of family worship. My heart is always so touched by the togetherness of my family who love God so. I am blessed to be in a heritage of lovers of the Lord. My grandfather's favorite song is How Great Thou Art, and we never gather together for worship without singing that. I love those old hymns, their is something very special about them, and they always bring tears. Tears of joy, longing, humility, gratefullness, and love for God. God blessed us all this weekend. Thank you Abba Father.
I will follow this post with some pictures of this weekend. Thank you for your prayers.
love, Tammy

September 14, 2005

Smile at Jesus

There is a blog that I read, Diary of a Transplant Patient. Amanda, a christian woman who writes it asked for comments on another blog post. The other blog she referred to was filled with a man's thoughts on how an all powerful God could watch while bad things happen on earth. When Jack was diagnosed and after we were home I thought long and hard trying to reconcile this very thought attached to my son whom I love so. I read Why Bad Things Happen to Good People after someone had recommended it, I know it has been a helpful book for many to read, but it deeply disturbed me. I did not know alot about the man who wrote it, only that he was a Rabbi. The gist of the book was that God created the world and has left us to ourselves to work it all out, he does not believe in Jesus who came down and triumphed over evil, he does not believe that Jesus is anxiously awaiting our prayers so he can interceed on our behalf to God, it was a book with no hope. He said that God was unable to help us, that he was there by our sides to be with us as we walk through life and death, but could do nothing but be our spiritual hand holder. This was my comment to Amanda's blog....

I can remember feeling like this (how can God not interceed to help all the bad stuff on earth) at an early part in my "searching for God, and trying to figure it all out stage." Trying to understand all the bad in this world and making sense of it, at some point I realized, through reading scripture that I can never understand the way things play out on earth, I was not created to understand God. At a workshop this year Rick Atchley spoke on the healing power of God. It was three days long, but the statement I remember the most (not directly quoted) is that we are completely healed when we leave this earth and take that expressway to heaven. Why God heals some and not others is uncomprehendable to me, and that is where I say to myself...let God be God and quit trying to understand the why's and why nots of this world. One of my friends asked me last night how I was doing with my son Jack who is in chemo for his brain tumor, and the subject moved to what if he dies from this, and all I could think was that when we get to heaven and see glory all around us we will have wished we had gotten there sooner. A man was giving me counsel on the subject of the brain tumor his son had, when I asked him if he ever felt "why did this happen to my child?" He said you have to say "why not my child." Because we are christians does not mean that God gives us a life of no trouble just for following Him, if he did everyone would jump on that bandwagon, your true faith and trust in God, is refined by that fire when you are struggling, it is easy to believe and proclaim when things go our way, but when things aren't we start blaming God for his lack of love and concern, or worse if you ask me, by belittling God and His power on earth. It goes back to that quote I posted earlier from Mother Teresa that I love so much
...." And it is true, Jesus can be very demanding also, and it is at those times when he is so demanding that to give him a big smile is very beautiful...."
I choose to smile at God even when he is demanding alot from me in my faith. It is a decision we all must make.

September 08, 2005

YIPPEE Jack's Counts Have Risen



We just came home from Jack's chemotherapy today and his counts are back in the 2000's. I have been working hard to get him to take the mannatech this week, and he has done a pretty good job of taking it, your prayers are evident in this. I got to where I would make his shake or give him his chewable tablets and he would make one whiney noise, I would walk off pretending I didn't hear him, then come back to check on him a few minutes later and many times the tablets were in his belly and half of his shake was gone. Thank you for praying.

Chemo was short today, just over an hour. He only received one drug today, it is part of the scheduled regimen, they call it a road map of protocol. When the nurse stepped out of the room, Jack said, "Mom she poked me with the needle, then she did some stuff, then she took the needle out already, is that o.k." The funny thing about that is that I told him probably 3 times today we were just going to chemo for a short time and he wouldn't get the iv drip medicine only the poke into his port and nurse Sara would be quick today, there are times as a mom I think I could talk directly to a wall and get more of a retention of memory. It makes me laugh.

This week in the Marcelain household we introduced Napolean Dynamite to our kids. Rob and I had seen it when it first came out on video, we rented it this week, and got our moneys worth out of it. Jack is now referring to the lochness monster on one of his Scooby video's as Nessie, and he has a craving for steak. We don't eat steak at home, mainly because Rob nor I are great at grilling. Rob and Jack went to Sonic for dinner one night when the other 2 kids and I were at Shepherding Group, (we kept Jack away from crowds with his counts low), Rob asked Jack what he wanted for dinner and Jack said, "You know that brown meat on a plate that the uncle was eating in Napolean Dynamite, that's what I want." Rob said, "Do you mean steak, I don't think they have that at Sonic, how about a corndog?" Jack said, "o.k.", but he wants some of that brown meat soon. He told me the next day he wants some brown meat, so I think we will be heading for Joe Allens to get some brown meat pretty soon. Jack is a connosieur of slap stick so Napolean Dynamite was a great addition to his laugh out loud movies.
Keep lifting prayers to the Father for my sweet Jack. He is such a joy. May God be with you and ever present as you go on your way this week.
Love, Tammy

September 02, 2005

One Month Mark

Jack and I just returned home from his 4th chemotherapy treatment. His ANC numbers are not too good today. 937. He started in the upper 2000's then went to the 3000's back to the 2000's now down to 937. Anything under 1000 means that if he contracts an infection his body does not have the necessary means to fight it. He is not in a dire stage, but a careful stage. I have not been fighting the fight to get him to take his mannatech nutrients this week. We both needed a break, me from hounding him and him from being hounded. Obviously I am back in the hounding mood, and now that he is on somewhat of a restricted social life, maybe he is ready to be hounded. The nutrients are all immune system builders and they have made a difference thus far. This is an area that I really would appreciate you praying for.

Jack has also made the switch as of today to an eye patch instead of the chemical patch. He was covering his dialated eye all the time to see, which made his writing in class next almost completely illegible. So he asked me if there was something we could use to cover his eye, the benefit of the chemical patch (dialating the strong eye) is so he doesn't have to deal with an eye patch, so now we can just leave off the dialation and he will use the eye patch.
Being that he is 6 years old, he kind of thinks of himself as a full fledged pirate with the eye patch, even my 8yr. old son Derek wanted one, so I bought him one also. Living with 2 pirates is very fun. Sometimes being a sick kid isn't fun, but the toys you play with to fix your problem are. The eye patch for instance, and when we were in rehab, the wheelchair. Derek loved to be in Jack's wheelchair. He was in it so often, that when people saw him and asked what happened his pat answer was, "I broke both my legs."

That has been the nature of this illness, there are always good things we can pull out of each day, substantially good things. The people we have met, the nurses and doctors, and the kindness of friends and strangers. Deciding what is most important and not sweating the rest. I love my life. Does that sound weird or what with a kid in chemo? When I was a kid I used to think that a day that involved no craziness was a good day, I just wanted normal. Then when I grew up into college age, I was determined to be anything but normal, finding my way to a place that I could call my own. That place I found was not pretty, mainly because my choices were not good, they lacked direction, they lacked the Cornerstone. I was a floating leaf flying whichever way the wind took me. Thanks to Jesus' prompting in my life I started to come back down to earth, living a life of substance, not floating anymore, looking to fill a void that had left me empty. I ofcourse found the Answer. I know what it is to live life without Jesus, I have been there and I don't ever want to go back. Here I am in a life that some would think would be rocking my world, and thanks to God's grace, I have the steadfastness to stand tall and love my life in the midst of crazy. Am I crazy sometimes, absolutely, do I get overwhelmed with what is happening to Jack, yes, but I can know that God is in control, and no matter what happens I am blessed to be a part of it. Thank you God for your tender mercy.

Keep praying for sweet Jack and pray he takes those vitamins. Thank you for being a part of this with us.
Love, Tammy