June 26, 2007

E Stim Started Today

Tuesday night. Well we are home from SBA (Summer Bible Adventure). 3 nights down one more to go. We are having a great time. The kids all had friends come tonight as visitors so they had a blast with their buddies. Derek has been the only boy in a group of girls this week, so he was glad for a friend to be there with him. I asked him if he liked the group he was put with and he said yes. Then I asked him if he was having a good time, and again a yes. Then I asked him if the girls were giving him a hard time at all, and his response was, "They don't talk to me, and I don't talk to them." I am loving that he is not girl crazy...yet.
We made it to the pool today, then Jack had physical and occupational therapy, then SBA so Jack was ready for bed tonight. His physical therapist started E-Stim on Jack's face today. Little sticky electrodes are put on his face, then the electrodes send signals to the muscles, and basically makes them involuntarily flex. It reminds the muscles how to work. Jack had this same type of therapy on the outside of his throat 2 years ago when he couldn't swallow after his brain surgery. What he is going through now, is a lesser case of what happened to him after his surgery.
Several people commented today that they see a difference in Jack's face. His right side corner of his lip is not as droopy as it was last week, and I noticed that although his right eye is still not blinking like normal, when he purposefully closes it, it is closing farther than it did a week ago. It is hard for me to notice the changes as I am with him all the time. So I am very excited to hear from others they are noticing a difference.
Please continue to remember Jack in your prayers. They make a difference and every time the Lord hears Jack's name I know that Jack is blessed.

June 25, 2007

Keep those prayers coming.

Monday night. Our church is in the middle of our SBA (Summer Bible Adventure) formerly known as VBS. The kids are all loving it. Rob is working with the drama part and I am a co-crew leader. We are all enjoying Avalanche Ranch SBA. Jack is doing pretty well. His emotions are in tact and he seems to be settling into all of his meds pretty well. He seems very tired. He told me that since he got back from the hospital he doesn't really like to run or walk very much. I told him that I don't think he has to run, but it is good for his body to walk. Then he told me that after taking 5 steps he is already tired. I think that is due mainly to the steroids, but am not sure. He is still quite withdrawn so please pray for God's mighty hand to reach down and heal Jack. Sometimes I want to stomp my feet and say Now, Now, Now,...but I know all in God's timing and when the timing is right God will have worked everything out to His glory. In those times I just take a deep breath, and remember our blessings, and what I am grateful for and just move on down the line.
Jack got a card in the mail from Tammy and Jordan today, some friends we haven't met in blogland today. Thank you for taking the time to send Jack a card, he loved it.

I am finishing up a book series on the women in Jesus lineage, by Francine Rivers. I have checked them out from the library, our favorite place to go besides the pool in the summertime. There are 5 books in the series, they are "novella's" which means they are about 100-150 pages long each. The books are based on Tamar, Rahab, Ruth, Bathsheba and Mary. I am still reading Mary, but the other 4 were great to read. The author takes all the factual info from the Bible and I imagine some other historical books, then fills in the story with her twist on the women and the lives that surrounded them. I would imagine many of her assumptions play somewhat true, because in the bible times the women were very limited as to options, and tradition pretty much ruled their world. So to know how a woman would be treated as a widow, or adulteress... would have been pretty standard.

I don't often read stories about bible characters, just because I don't want to confuse myself with what is real and what is fiction, but I really enjoyed these stories and it certainly helped me put some names and family groups together. Like...did you know that Rahab, the prostitute, was Boaz's mom, who later in life married Ruth. O.k. you might have known that, and I am sure I have read it myself in the lineage of Jesus, but for some reason the lineage and who is who, to who, doesn't stick real well in my brain. So along with a good story, I got some learnin' from the books.

Once I finish Mary, then I will start on Anne Lamott's Grace Eventually. I have enjoyed her books, although they are not for the faint of heart. It is a 7 dayer from the library, so I will try and read it in a week....good luck to me, it is not a novella.

The pool is just waiting for us, the weather is wet and rainy so I am not sure when we will get to be poolside anytime soon. This is a crazy West Texas Summer.

June 22, 2007

The Monster Called Steroids

The steroids have taken over!!!! Wowza! I have never been on steroids to know first hand but I can tell you from being the mother of a child who is now on a high dose 4 times a day, they wreak havoc with your emotions and your appetite. Jack could eat from morning till night and it just wouldn't be enough. I fixed a big lunch of fish, vegetables and bread today, thinking that a dinner sized meal would tie him over for an hour or so, but he got up from the dinner table, walked straight to the cupboard and said, "What's to eat, I am hungry?"
He is testy and quite demanding which is not like him at all. The time before when Jack was on steroids right after his brain surgery I couldn't believe that his personality change could be so dramatic, and 2 years later I had forgotten what it was like. I was talking to my friend today who was on steroids and she said she wanted to yell at people and eat all day. But those steroids are keeping him from any more damage from the swelling in his brain, so I am not complaining in even the least bit.
And...I am still worn out. I don't think I could make it in the good old days. I am trying to keep up with all the normal food demands of a family, and I am trying to keep us in healthy food which is alot of work. When someone gets hungry I actually am cooking, cutting or mixing something, ...so unlike me...I am becoming more like my mother every day. She would be proud of the high grain, nutritious, organic eating that is going on in this house. I am sure if she were still alive she would just move right in and be our nutrition supervisor. She taught me well, so all that nutrition stuff she hounded me with my whole life is coming in very handy.

We so appreciate everyone's prayers, keep on praying.

June 21, 2007

Status Quo

Thursday night. We are back in town. The trip was great. Rob had to work so Elaine took off work and went with me and all the kids. We got in at the Ronald McDonald House, which is always a blessing. The kids feel like home there, and it is such a blessing financially to not have to stay at a hotel and go out for all of our meals.

Jack did extremely well in his MRI. He never even twitched or moved a muscle. He always does good, but today he was in his MRI groove! Dr. W., his neurosurgeon talked to us after looking at Jack's MRI results and said that everything looked basically the same as the previous week. He was glad to see there was no noticeable necrosis on Jack's brain stem. Necrosis is where the stem or surrounding wires are actually being eaten away by the radiation. At this point he see's that there is damage from the swelling but no dead stems in the brain stem. That is good news. Necrosis would be permanent and could never be healed medically. All that said he told us that Jack's MRI looked status quo. We are going back in two weeks for another MRI, and another look see inside the precious head of my sweet son.

Dr. W. told Jack he was the absolute best patient he has. He wished all his patients could be so attentive and patient. Jack is a dream patient.

Dr. W. also told us that part of the tumor looks like it is dying. Just a little part, but that still sounds great to me. This is just purely his observation and not verified by anyone else or any other tests...but that along with the 1 millimeter of shrinkage measured by Dr. Timmerman last week is music to my ears.

I appreciate everyone's prayers and continued support for Jack. We are continually calling on God for strength to make it through one more day, but that is all the strength we need right. Just for today. God's mercies are new every morning.

Father God thank you for your strength. Thank you for the most wonderful children and husband I could ever ask for. Each time I look into their eyes I see that it is a moment to be cherished. We know not what tomorrow brings, but we do know you are with us every moment. Thank you for Jack and his kind spirit, his love for his family, his cuddly hands and those little crooked kisses on my cheek, that his little crooked lips so softly give. I am truly blessed.

June 19, 2007

We are all smiling.

Tuesday night. We had a good day. We started our day at the Farmer's Market, as there was no melon's yet, my boys were quite disappointed. When I instructed them to use the cash I had put in their hands for the Farmer's market to buy vegetables, both responded, we don't have to eat this do we? I thought that they might take ownership over the veggies if they were the ones to pick them out and pay for them, but unfortunately we were limited to squash, onions, green beans and more onions. So that was not as big of a success as I had hoped. But Sophie and I thoroughly enjoyed a squash, onion and bell pepper salad tonight with our meal. Those boys don't know what they are missing.
The change of nutrition this week is quite an adjustment to my family. Jack is pining for sugar. He is used to several sweet snacks a day, and now he can have 2 sweet treats (with no nutritional redeeming value) a week. I am making healthy sweets, but it is just not the same as a swiss cake roll I guess. We shall overcome!
Jack has another MRI on Thursday in Dallas. We will meet with Jack's neurosurgeon afterwards and he will give us the lowdown on the swelling in Jack's brain.
Jack has perked up a bit today, he is talking more anyway. We are blessed by our sweet Father in heaven. He has given us His strength and we have found our smiles again. Thank you for your prayers and to our church family the many ways you have walked us through the last 2 years, how you have blessed us.

June 18, 2007

A couple of pics.




Here are some pics from the last week. The first is Jack and his two best friends who came to see him off from the hospital in Abilene. Then a pic of Jack being wheeled into the ambulance that took him to Dallas Children's Hospital in Abilene. The final pic I took yesterday, a big cheesy grin on Father's day.

We have had a good day today. The boys swam with friends this morning and I got my house de-cluttered after our time away and arrival back home from the hospital. It feels good to be de-cluttered!!!!

We are grateful for the prayers, know they are being lifted, because I feel the love.

June 16, 2007

Glad to be home.

It is Saturday night and we are all home. Jack was released from the hospital today about noon thirty. We got back to Abilene late afternoon and went to pick up prescriptions and unload from the hospital. Rob and the boys went to see that new movie with the silver surfer, why can't I remember the name? Sophie and I went and saw Nancy Drew. She is much braver than I, let's just get that straight right now. I covered my eyes several times, closed my eyes even more than that just so I didn't look like a real scardy cat, and even the woman behind me yelped and jumped out of her seat, but not my Sophie. She loved every minute of it and wasn't scared even the smallest bit. All that said, that is why it has taken me so long to post after our arrival home.

I am worn out. Jack is worn out. I think our whole family is worn out.
I posted we went to the ER on Tuesday night, then Jack was ambulanced to Children's Hospital Wednesday at lunch time. Jack had a stomach virus Tuesday that apparently weakened his system enough that it gave into the swelling and pressure of the radiated tumor. 2 major issues came about because of that. 1. He has right side facial paralysis. Which means he looks like he had a stroke on the right side of his face. His resting face looks pretty normal, but when he talks or opens his mouth you can see only the left side works. 2. His right side vision is impaired. He can see straight ahead and to the left but not to the right at all. His eyes wont go past middle on the right side.

Will these problems heal? The answer is that the doctors don't know. It could take up to a year if they do. The facial paralysis has a better chance because the location inside his brain, it is not as close as the hub of what controls that right side vision, which was in the danger zone. These side effects of the radiation were known by us when we signed off on the gamma knife procedure. I think the doc said 1 out of every 10 kids would be affected by this type of facial paralysis temporary or long term.

We still feel like the radiation was Jack's only viable option, and truthfully, nothing else even comes close to the percentages of killing the tumor as the radiation. All that said, we are heartbroken. I guess I worry about Jack's self esteem and how he will be treated by his peers. I pray that he is strong within himself and doesn't get upset by people looking at him. When he had no hair from the chemo, he certainly noticed people staring, but for whatever reason because I knew it would grow back, or he could put a hat on his head I thought it would work itself out and it did. This I am praying will too. He has seemed depressed this week. He has just wanted to stay in his bed, I had to talk him into getting out of the room. He said to me today that he wished we could just have a day where he could stay in bed and not have to get dressed to go anywhere. That is not like Jack at all. He was looking forward to a birthday party that was earlier today, and that could have been why he was upset, because he knew he probably wouldn't make it. But it seemed to me as though his little spirit is broken. Please pray for him to find his smile, as crooked as though it might be.

He is back on different meds 4 times a day. Eye drops and cream to keep his eyes moist, the right eye wont completely close any more, and dexamethasone (sp?) a steroid to shrink the swelling in his brain and xantac to lesson the stomach upset from the steroid. The steroids are going to make him gain weight. He will be on all these meds indefinately.

O.k. enough tears.

The bright side is, he can still swallow. That was a concern and the fact that he has retained the ability to eat for himself and not in a tube is a huge deal. All those areas are right together. The radiologist said that if Jack has optimum nutrition that will facilitate the regeneration of the wiring in his brain and could make a huge difference in his recovery. So today I threw out every ounce of sugar and processed snacks in my house, bought a bread maker to make uber nutritional whole grain, nutrient enriched bread and a juicer. Optimum nutrition will be good for all of us. It is going to be a big adjustment, but sugar and refined foods have become enemy number one in our house. And then maybe the best news of all, as of the reading of the MRI 2 weeks ago, Jack's tumor has shrunk 1 millimeter since the gamma knife. Considering the aggressiveness of the tumor this is a big deal, and reason for encouragement and hope.

It has been a long week and I have been very strong for Jack. On the way home today tears silently flowed down the sides of my cheeks most of the way. It will take me a couple of days to work through the new transition and not be so emotional about it, but with God's help and your prayers I know that is more than possible. Please pray for Jack to heal, for our family to be strong, for his friends to be kind, and for God's glory to shine bright.

Yours most truly. Tammy.

June 14, 2007

Friday News

Friends, Tammy is unable to update her blog from the hospital, so she sent me an email asking me to do it for her. Not much to report, except that Jack is feeling better and hopes to be released from the hospital by late Friday or sometime Saturday. He will still have some recovering to do from the facial paralysis, but we are all hoping that it isn't permanent. Tammy will give you more details on her return!

Sarah

June 13, 2007

Jack in the Hospital

I need to make this short and sweet. I took Jack to the ER last night at Abilene Regional because he has lost the ability to move the left side of his face. He had been sick and nauseated all day, don't know if that was tumor related or a virus. Last night about 9pm Rob and I noticed that Jack's face wasn't working properly. After calling several doctors to find out what they wanted us to do, we took him to the ER. I was afraid to drive him to Dallas with him being so sick to his stomach.
He had an MRI and CAT scan last night at ARMC. All of this is probably due to the pressure on his brain stem from the cerebral swelling from the Gamma Knife Radiation.
The ambulance will transport him from Abilene to Dallas Children's and we will be there for several days where he will be on high doses of steroids to shrink the swelling in his brain. There is a computer at the hospital so I will try and update daily to let you know what is going on.
Please pray for a safe trip to Dallas today and for Jack to be mended quickly. Thanks ahead of time for remembering Jack and our family in your daily prayers.
Love, Tammy

June 09, 2007

We Love Hanner Chevrolet in Baird

Saturday morning. The kids and I met family at the Dixie Pig to celebrate my cousin, David's daughter's birthday...Keelie. She turned five this week. They live in Ft. Worth, TX. Of all the places in Abilene Keelie wanted a party at the Dixie Pig. So they decorated for her theme of butterflies and it was great. I am not sure that the Dixie Pig gets too many requests for 5 year old birthday parties, but they were super sweet and even gave her a biscuit with candles on top, then a gift bag with some pig paraphinalia inside. Keelie told her daddy that he could have the big pig keychain to put his keys on, I can't wait to see that.

I am going to take my camera along the next time I walk the path at ACU and post some pics of the route. It is so beautifully set up I think I just need to share some pictures with you.

Rob and I went to see Ocean's 13 last night. Somehow we have missed the first 2 in theatres. When we rented them they didn't hold my interest, but I really enjoyed 13 last night. I went in with low expectations, I think that is the key. We met our friends Denise and Jim there. Denise is a bit of a talker in the movies, she is the color-commentary from beginning to end, although last night she only had a few choice comments to make. My favorite movie to have ever seen with her is Taladega Nights with Will Ferrell, she was funnier than the movie. She is also a singer, and told a group of us girls that we should buy the soundtrack to Hairspray and learn all the words to the songs before we go. Then we could sing along. I am sure all the other movie goers would LOVE that. I think she is on her own.

Rob and I are driving out to the Hanner Dealership today to pick up our new van. We are very excited. The Hanner's have blessed us in SO many ways for all the years we have known them. I was thinking just the other day how I took a huge bag of silk flowers to Jana's house and she helped me make my wedding bouquet, that was almost 12 years ago. Silk was in my budget by the way and it was the mid-nineties. ( My disclaimer for silk flowers) Anyway their family means alot to us, and Hunter has gone above and beyond to find us a good used vehicle and we are eternally grateful. They are a kind and trustworthy group out at the Hanner Dealership in Baird, you can't go wrong with them, and Jana is a great flower arranger.

Well there ya go. That is what is going down in the Marcelain house.

June 08, 2007

2 Miles

Friday morning. Ashley and Riley are here visiting with us this morning. We head out to the pool in about 45 minutes. We got a bit of rain last night and it is a bit chilly, but I am sure it will be sweltering by 10:30am. I am sooooo tired. It is completely my fault. There is a new camera bag that went on the market last night and me and a thousand other photographers were dying to be the first to buy it online so we can get it shipped immediately and not wait for the next shipment to be completed. Once I wake up it is next to impossible to fall back asleep, so I knew I was risking my whole nights sleep by setting my alarm clock for midnight, when I didn't go to sleep until 11pm. The site went live at about 2:45 and by 3:00 I was the proud owner of a new camera bag. I am too tired to link but you can go to see my new bag at shootsac.com.
The people who sit in front of walmart to buy the newest video games, I feel your pain.

Rob and I have been walking around the campus of ACU on Thursday nights when we drop the kids off at thai kwon do. We have a great time walking around such a beautiful path. It is 2 miles, and it goes by in a flash. I like to walk, but I like to walk somewhere, not in a circle around a track 8 times. On a track, every time my walk leads me by the parking lot, the pull of my car is magnetic, it is calling to me saying, aren't you bored, you have walked enough, come on let's go. But on the walking path at ACU you park and don't see your car again for 2 miles, so there is NO temptation to quit half way. Even if it is muggy and hot like last night, I can guarantee that I never would have gone 8 times around a track in the yucky humidity and heat last night.

Enjoy your weekend!

June 06, 2007

Just a Hello

Wednesday, where does time go? We had a fun day yesterday, we went to the library to check out books. Jack and Sophie both applied for their very own library cards. Very exciting. We sat in the library and read for our daily dose of 60 minutes of all noses required to be in a book. I definately gave the kids a good week of no educational requirements to kick off summer with. But now, the playstation, television and gameboys need a rest too when we are home. So the book reading and math sheets of summer has begun.
Today the kids and I will figure out a reward chart for their efforts, because after all it is summer, and you can't have learning without rewards of some sort.
We have church tonight and Jack has a port flush tomorrow, and that about sums up the next two days.
Father's Day is coming up quickly, any one have some ideas to celebrate dad in a special way?

June 04, 2007

Hi Jesus, my name is Tammy.

Good Monday morning. We are definately into the swing of summer, bed times have laxed, no alarm clocks to be heard for mom and kids. The summer routine has officially taken hold.
Last week I grabbed a book from our book shelf to take to Dallas to pass the time in the hospital for Jack's MRI. I grabbed "Facing Your Giants" by Max Lucado. I had bought it for Rob for Christmas or birthday last year. It has been a good read. Max Lucado's books are always enjoyable. "Come Thirsty" is still my favorite of his.

Jack has been feeling back to normal for the most part. He hasn't felt sick in a week, so that is good news, and he is enjoying summer to the fullest.

I was reading a blog post that was forwarded to me from a friend, I couldn't make the link work. The post was written by a mom who had left her pursuit of faith behind years ago, and now she has a child, who has never gone to church or been around a community of faith, and she was feeling guilty. My friend said that it was a reading that had stuck with her, and it has with me also.

I believe that there are people all around us that feel this way. They are searching for a relationship with Jesus, but they walk into a church building and they are taught the rules, the traditions, joined into programs, pot luck luncheons, signed up for committee's and a host of other focuses. But where is Jesus? Where does their searching lead them? To a group of good people, doing good things, trying to help each other along. But I say again, where is Jesus? In that situation Jesus is in the details, He is in the heart of His believers. But for me I could not find Jesus in someone else's actions, I did not find Him from the words spoken from the pulpit, as inspirational as they are, I could not find a personal relationship with my Savior through anyone else but through my own seeking of Him. He was waiting for me all along, He was right by my side through the ugly and not so ugly, but when did my heart connect to Jesus? It was only when I realized that I was not the god of my life, and that finding Jesus was not on my terms but His.

There came a point in my journey that I realized God is not someone who is only part of my life for two hours on a Sunday morning. As American's we are taught about pride, rights, look out for number one, pull yourself up by your boot straps and I really lived each of those. I learned well. There came a time that I decided I wanted God, but I really did not know how to find Him. I looked for Him, I sang worship songs, but the words were empty, after all, I wasn't going to submit my life to anyone, I was in charge of me. I took communion to remember the crucifixion and resurrection, but Jesus died a long time ago, and the current sin I was in, really didn't matter, after all how does someone have fun if they don't party? For some strange reason I never found that connection on my part. Through the years I opened my eyes to the shiny surface of my life, that was completely empty below. My heart ached. Where was that connection made? On the floor of my bedroom down on my knee's pleading for God to be my God and to help me find Him. I would seek Him every day of my life, I would read His word and try to live a life that glorified Him and not me. And that was when my heart met His.

A year later I went back home to Arizona because a friend of mine was getting married. I was staying at a friends home, and one of their roomates questioned me about my new found Christianity. Their biggest problem with Christianity is that there are so many rules that it seemed impossible to even try. As a relatively new Christian at the time I didn't have the best answer, but I think I responded that it felt right, when nothing else did. And the rules...for me if I am trying to follow a dot to dot, or a color by numbers Christianity then there is something empty in that just like my life before. There is nothing to earn, for His grace fills in where I fall short.

When I turned my heart to God, the rest just fell into place. The sins one by one dropped off, because what felt right before, didn't feel right anymore. I grew alot through church and the fellowship of believers, but when I met Christ for the first time it was just me and Him, alone in my room, no pride left, only humility and a seeking heart. God tells us in scripture, seek Me with all of your heart and you will find Me. He would not settle for my left overs, he wanted all of me. Just as my husband wont settle for my leftovers, God wants my whole heart.

I feel blessed that I have a relationship with Jesus, but the seeking never ends, He calls me to pursue Him every day, and when I do I have the peace of heart that I could never even imagine 20 years ago. The story above is from when I was in my early twenties, now I am knocking on the door of my forties. But the moments are still vivid in my memory.

I had a basic understanding of Christianity because my family went to church while I was growing up. I was baptized for the forgiveness of sins and received the most precious gift of the Holy Spirit when I was about 13 years old. So basically I went home to what was at the bottom of my heart, which was put aside for a while.

God never stops calling us to Him, whether we just communed with Him, or if he was a long lost friend whom we haven't spoken to in years. Lift your eyes and behold His glory.