I clicked over to the link on the side for Brooklyn and Beyond. I don't know this family but their story is amazing and they have an amazing little boy named Ira. Ira has stolen hearts all over the world I am sure. I love to keep up with Ira, anyway I was so blessed tonight when I clicked over and saw that Ira Talks!. It made me a little teary, so very precious. It reminded me of when I posted "Jack Speaks" after he found his voice many weeks after his brain surgery back in 2005. The gift of voice is one that might be overlooked, we can just take it for granted, but thanks to the Ira's and Jack's of this world we are reminded just how special the spoken word really is. Thank you God for Ira and his sweet voice.
November 29, 2007
November 28, 2007
2nd day back at Hyperbaric therapy for Jack. Last night was the Christmas Lights Parade in Downtown Abilene. It was so much fun. For the first time my kids were in the parade, they have had opportunities in the past but it never sounded appealing to them before. Last night they bundled up and were a part of the Abilene Performing Arts Company Float. Jack sat on the float, looking like he was having a tooth pulled the whole time, Sophie walked with the "walkers", and Derek and I walked along side with the other parents. It was so much fun. I was so excited to see all the people waving. I am a waver at parades. If someone is going to be on a float waving at me, I am going to wave back. And the children who were watching the parade were as cute as could be. It was a fun experience - I bought some hand and feet warmers from the hunting section at the store yesterday to keep us all warm. They worked wonderfully and we all stayed toasty.
Back to work for me it is...
November 25, 2007
The day after Thanksgiving we met up with our huge family at McKay's. When my Arizona family comes to town, one of there must-go spots is McKay's. The backroom fit us perfectly, the kids had a little space to wander and we all got to visit and drink coffee, oh and eat alot of pastries. My personal favorite, one I don't generally get very much is the blueberry danish. Caution was sent to the wind this weekend everyone just enjoyed the treats.
The post below of my Arizona Family (there is alot more Arizona family than those who were able to come for Thanksgiving by the way.) with all their pictures at Everman Park at the end of Cypress St. were taken immediately following this bakery expedition. After Rob had cleaned up the backroom once all the days baking was done, one of my nieces asked if they could make a batch of cookies. Rob was so sweet and put aprons on all the kids and they whipped up a batch of sugar cookies. What a sweet husband I have. I know it was a big highlight of the day, something those sweet kiddo's and teenagers wont soon forget. The pictures from the bakery were taken by my sister in law, Cari. Thanks for letting me download your pics and display them here. There is one sweet picture of my brother Rob with our grandfather. We call him Gran. The rest of my cousins call him Bob. He is the most sweet man ever, his character is flawless and love for his family immeasurable. He doesn't really like his picture taken, so most of the time he looks away from the camera, lowers his head, puts his hand up....so this picture with him actually looking up was not easy to come by but we sure appreciate seeing his beautiful eyes.
November 24, 2007
We have had so much fun over the last several days. Loved the many inches of snow that God blessed us with on Thanksgiving, what a special treat that was. I took Christmas pictures of my family yesterday with some snow still on the ground. This is my brother, Rob and his wife Cari, and their 3 girls and 2 dogs. I love being with them so much, today we are making our last breakfast trip to McKay's Bakery then they are off to head back to Arizona. Enjoy these pictures of my brother and his family. I also brought my Nana's fur coat, it would be the girls great-grandmother, for them to wear for some of the pics.
November 19, 2007
At 2pm I called Jack's pediatrician and she still hadn't heard from the radiologist, but she checked the computer and his notes said that Jack's x-ray hadn't changed. So I have just cancelled his surgery. Jack will be able to enjoy this week without all sorts of stingy drops in his eyes and with enough energy to shoot his cousins when we play laser tag.
Then I called the hyperbaric area to let them know that Jack could come in tomorrow because his surgery was cancelled. And they said that Jack shouldn't come in with pneumonia as it could make it worse. So we will have a week or two off of HBO treatments.
Thank you for your prayers and thank God for His provision.
Jack is scheduled to have surgery tomorrow in Dallas. We just spent our morning hospital hopping. He had his HBO treatment at Hendrick, then we went straight to ARMC for a chest x-ray. If there is anything that shows up in his chest then we will reschedule his eye surgery tomorrow. I am just waiting to hear back from the doctor. Jack SO wants this surgery over and done with. He is excited that his eye will be fixed and to have his mediport removed. But he still has a cough, so we will see. I told him that if his surgery was cancelled for tomorrow the bright side is that he will be able to really enjoy all of our family who come in tomorrow night, he can feel good and keep up with everyone. I also told him that he could help me make some Christmas candy today if we stay put - he was all about that. Either way we will be happy, get it over with or postpone. The Lord knows what is best and He will work it out.
I will post when I hear from the doctor.
November 15, 2007
Thanks Jessica for asking about the results on Jack. Jack's pediatrician called today and said that it looks like Jack could have a bit of pneumonia. It is somewhat inconclusive because it could also be a cold that had settled in his chest. After talking with Jack's oncologist Jack is now on the medicine that his pediatrician prescribed yesterday, zithromax, and today they added hydracortizone (spelling?). When we spoke with Jack's oncologist a couple of weeks ago after Jack's MRI he said that Jack's immune system is not functioning due to the amount of steroids he takes every day, so the hydracortizone is taking the place of the natural hydracortizone that his body would make if he wasn't on steroids. And apparently hydrocortizone is what helps your body fight infections.
All this sounds like Jack is not doing well. But for the most part except for the cough he is feeling fine. The hardest thing that Jack is dealing with is sore muscles. Every Tuesday he goes to Rehab Therapy and he works out with his physical therapist. This week she increased the weight on his leg work out, they use the Total Gym System, and Jack is walking like his legs are full of jello. He told me today he barely made it up the little hill outside of school to walk to the car when I was picking him up. Bless his heart. He told me that his PT said if his legs hurt he could stop, but he said that he felt fine until he stopped the workout and then it was a different story.
Jack's surgery is still on for next week, if he doesn't improve or if he worsens then we will reschedule.
He is such a trooper.
The time change and early darkness makes me so sleepy at night. By 7:30 I am ready for my jammies and a cup of tea. One of my new favorite things is loose leaf tea. Several months ago Jack and I were wandering through Whole Foods to pick up our month supply of Z-Bars, a kids organic snack bar, and there was a nice woman handing out samples of loose leaf tea, you could pick hot or cold. I tasted the cold tea and thought it was extra yummy. I bought a can of loose leaf tea because the woman who owned the company was the one offering the samples and I just appreciated that she was working her business that she and another woman from Colorado had created. When I got home I regretted not buying the tea cup. I bought it this last time and another flavor of tea. I LOVE this tea, and I love the tea cup. It makes it super easy to make one cup of fresh steeped tea loose leaf tea. You can check out the website at www.the-teaspot.com. The prices are the same as in the store and there is free shipping if you purchase $30 or more I think. This is my favorite thing and am giving away several tea cups with a can of loose leaf tea for Christmas. First I bought the Red Rock's tea (herbal), then I just bought the Creme Caramel (black tea). The Creme Caramel is dee-lish. If you are looking for something different to give check out this site.
November 14, 2007
Wednesday night. Jack just headed to the shower after a long day. He had hyperbaric therapy this morning, then school, then I picked him up 20 minutes early to head to his pediatrician's office for a visit. He has had a bit of a cough for about 9 days now. No fever or other problems, just a congested cough. With his surgery next week and the holidays coming up I thought it best to go and get him looked at.
I love our pediatrician. She is kind and thoughtful and thorough. So in the thorough category she decided that Jack should have a chest x-ray to be safe as he will be put to sleep in just 6 days for his eye surgery and port removal. So we just got back home and it is 7pm. I just realized put to sleep could sound a bit like a dog's last day but as I am not talking about a dog, you would know that it is just a temporary sleep for surgery.
I am SO excited for next week. We have a ton of family coming to town and spending time together for Thanksgiving. I am preparing this week for next week as Jack's surgery will take up the first part of the week. I have shopped for all the food, bought Christmas gifts for those we celebrate Christmas with the day after Thanksgiving, I have cleaned one of my kids rooms from top to bottom, and hopefully will finish the other room tomorrow, and am feeling good about where I am for preparation. I know that the Lord has seen fit to give me gifts of service in several areas. One of those gifts is not hospitality, preparing large meals, hosting large groups - while I love to do it, does not come naturally to me like others I know. I have made a concerted effort to not freak out or get nervous, anxious or testy in my behavior. I am going to enjoy my sweet family and our extended family.
Thanksgiving here we come.
November 12, 2007
Monday morning. I have woken from a wonderful nights sleeep after spending the weekend with The Coffee Group in New Braunfels, TX at a ladies retreat for Westover Hills Church of Christ from Austin. The weekend was full of God's mercies and grace bestowed on all of His children who are searching to be one step closer to Him each day of our lives. To speak the Word of the Lord to anyone is such a gift in and of itself. But I have yet to ever speak without immense gratitude to Jesus for lifting my eyes from the mud and the myre of my past and to Him, I am grateful for Jesus. I am always grateful for the reminder from the Holy Spirit that it is only through our Lord Jesus Christ that my eyes have been open to my own sin and it is through His love that I keep desiring more and more of Jesus and less of me.
My favorite line from the Coal Miner's Daughter is after Loretta comes off the stage at the Grand Ole Opry and she says to Doo her husband, "Doo, I could die tomorrow cause I ain't never gonna be happier than I am right now."
That is how I feel every time I have told how God's grace lifted me and the power of Jesus healing in my life. There is nothing else on this earth that compares with tesifying to God's love and truth. Thank you Jesus.
Thank you friends and family who faithfully lifted this weekend in prayer, the Lord was Mighty this weekend.
November 09, 2007
Good Friday morning. The weekend is almost upon us and I am amazingly blessed. I have a sweet family inside these walls, I have a sweet family that extends across Abilene to several states and then oversea's.
I had the opportunity to take some pictures last night as a gift to women and children who have had it rough. I have ALWAYS known it is better to give than receive, and I am always thrilled to be on the giving end. Within these family groups there was love. There were hearts that had been broken and lives that needed mending but in it all they were transitioning to a new normal.
I am afraid that many of us walk around not realizing just how blessed we are, myself included. Most of us that have a computer to read this on have clothes to spare, accessories for those clothes, clothes that fit our kids, and I would guess that most of us are safe in our homes. I am grateful to the Lord for allowing me a glimpse into lives that remind me of how much we need the Father's love and that the brokenhearted of this world are plenty and they are blessed by our simple kindness, because maybe kindness has not come plenty to them.
Father forgive me for overlooking the brokenhearted help me to seek them in Your name.
November 08, 2007
Yesterday was Jack's first day of the second six weeks of Hyperbaric treatments. My car is definately in auto drive to the Hospital each morning Monday thru Friday.
I took a much needed 2 day vacation from my job on Tuesday and Wednesday for some intense study time for a retreat that The Coffee Group is speaking at this weekend. It is back to work today.
Yesterday was also flu shot day. Jack is an old pro at shots and sticks, Derek does very well, Sophie is normally the child you can hear 3 blocks down with a shrieking scream like someone has come at her with a pitchfork size needle. My little dainty, tiny, princess turns into a screaming, squirming, thrashing tiny person with superhuman strength when she gets a shot. The line up was set, Jack called first in line, then Sophie, Derek, then Rob. (I got my flu shot at Dallas Children's last week because it was free, and no waiting). So Jack goes, he has already prepared me that he is going to leave the room immediately after his shot, said he needed to use the restroom (this is code for I can't bear to hear my twin sister cry). As soon as Jack is done, Sophie says to Derek, "you go next." Derek hops up on the table gets his shot, then Sophie has Rob go, Rob get's his shot, and no one is left but the screamer. Her eyes are already teary, her face is red, she bravely gets up on the table and is crying silently to herself and before she knows it the shot is over and done with and the bandaid on. AHHH, the sound of silence, it is a first with Sophie getting a shot. Jack walks back into the room and says, what happened? is it over? Yes Jack it is over and your sister was very brave, big smile on Jack's face. Then he says, "I really did have to go to the bathroom." (code for I didn't run away not to hear my sister scream.)
One of the perks of a brother who get's stuck alot with needles is that there is a stash of emla cream that get's used on everyone's arm before they get their flu shots. So the process is quite pain free, except in Derek's case where the shot was given outside the emla creamed area, but he still didn't flinch. Rob and I don't use it because we are too brave or too embarassed to put it on our own arms. Really I should speak for myself, because Rob is brave and tough, I however on the other hand am a larger version of my daughter who has chosen dignity rather than screaming and flailing, but I secretly want to slather emla all over my arm when I get a shot, because all that screaming and flailing is going on in my head.
I do have to say that this years flu shot was the least painful flu shot, don't know why, but I barely felt the injection.
November 06, 2007
Dreams. Do you remember your dreams? In the bible many times God communicated with His people through dreams and visions. I have been blessed to have one major vision through a dream from the Lord. Of all things it had to do with my business, but since I put that dream into action God has blessed my faithfulness and willingness to hear His voice and follow His will, even though it wasn't what I had planned for myself. I had the sweetest dream the morning we were to receive the news about Jack's MRI. It was right before it was time to wake up because I went straight from the dream to looking at Jack in the bed across the room all in one breath. In my dream Jack and I were at the park. He was running around and laughing, and I couldn't keep up with him. I was trying to catch him and called out to him, when he heard his name he turned around at me with a big smile and there wasn't any facial paralysis, everything was healed. He kept on running by the way and I can just remember laughing and being overjoyed because he was running and laughing and feeling well and then my eyes opened and I looked across the room at my sleeping boy. It was at that moment I knew that the Lord would heal Jack completely, in His timing.
November 05, 2007
So...I continue to be amazed at the, "Mrs. Marcelain there is NO more brain tumor," conversation I had just 3 short days ago with Jack's radiologist. What can I say about this? Did I ever think this day would come and I would hear those words? What does the future hold with no brain tumor's involved? I would like to think that my hope has not changed for God had given me His hope,...in joy...God has blessed me with His joy to be delighted at the smallest of delights when the road was rocky. On days that my faith and belief had waivered and there after had been restored after I sought, asked, knocked and devoured His Word and God gave me faith I never even knew possible and I am so grateful and humbled by His love walking by me each step of the way to spur me on to keep searching and He will keep answering.
I have been confronted lately with my comfort in the way I disregard what I don't understand in scripture. And I have enjoyed using the on line bible tools you can find at heartlight.org to break down terms from the original Hebrew and Greek bible. God has brought one person especially into my life who has prayed with us and spent time with us and given us many words from God, led us to scripture God was calling us to read and read and re-read. Most of which have to do with faith and belief. And her very being has opened my eyes to where I have sold the bible short and not really understood the power of Christ that His believers have access to. In the words of Beth Moore - this has been my prayer many times each day, "Today Lord, let just one more scale fall from my eyes, that I might know You and Your Word better." Those scriptures that I have disregarded have become fresh and new and the Holy Spirit indwelled is opening my eyes a little bit more every day to the Amazing and Mighty God we serve and the power of the blood of Jesus Christ.
Yesterday in church our minister had all the lights turned off as we had a prayer of praise and thanksgiving for Jack and asking for His hand to be with other's who are suffering with illnesses. It was a most special moment, one that I will never forget. To be in darkness, standing amongst over a thousand people with my hands lifted to the Almighty was a quiet and humbling moment that I will rest in for all the days I walk on this earth. I thank God for the journey and I thank God for Jack.
November 01, 2007
So here is the long version of what we were told today. Posting on my phone is so nice, but it makes me want to keep it short and sweet.
First doctor we saw was Jack's original neurosurgeon, the one who had her fingers in Jack's brain and removing the bulk of the tumor almost 3 years ago. We went to what was called clinic today, the dr.'s rotate who attends to clinic, so it is not necessarily your doctor you see. So Dr. Price saw us today and it was so nice to see her again. She has such a calming affect on me, she is like a fresh breeze off an ocean coastline, so needless to say, I love talking with her. She said the news looked good. The scan looked great and she saw no new growth. She would talk to Dr. Weprin and Dr. Timmerman about Jack's current steroid dosage and tapering it, and also on how long they want the hyperbaric treatments to continue.
Then Dr. Bower's came in and did an exam on Jack, he reiterated that the scan looked good and he thought Jack looked great. So then we got back home to Abilene with a phone call on the answering machine from Dr. Timmerman, Jack's radiologist, the dr. who performed the Gamma Knife Radiation treatment. He said we were going to SLOWLY decrease Jack's steroid dosage, so we are now giving him meds 3 times a day rather than 4. I am supposed to call Dr. T back in 2 weeks with a progress report on Jack, then he might lower it a bit more. I talked with him for a few more minutes about Jack's side effects from the radiation and then I asked him, how large the tumor looked currently. And he said..."I don't see any tumor anymore, all I see is radio-necrosis." I shook my head, and said, "What did you just say?" He repeated it again, I don't see any tumor, just necrosis. Which he said can be larger than the irradiated tumor. I said, "Really?" So then he said that we need to wait for Jack's brain to heal from the radiation and that it could take years, so there is still healing that needs to take place, but if he is right then the tumor is gone. He said the Hyperbaric Oxygen is obviously helping Jack and he wants to continue for another 30 treatments. Then he said that Jack's brain was in very bad shape just 6 weeks ago and has made significant improvements. Probably good that I didn't know the "bad shape" Jack's brain was in - or atleast not to the extent of it anyway.
But that is neither here nor there except to be thankful and grateful for the good shape he is in now.
So the good news was abundant today. In all things praise God, good or bad, praise God. I have praised Him many times today and I will continue to praise Him.
Jack is due to have his eye surgery on November 20th - please continue to lift Jack up to the Father, and praise Him along with us.