April 30, 2005

Saturday Update

Well, poor Jack is hanging in there and slowly getting better, but he still is having quite a bit of trouble with vomiting (please just be patient if I'm spelling that wrong -- I don't know when I've had opportunity to write it so many times!). Again, Rob and Tammy have been told that the tumor had been pressing on a part of his brain that would cause vomiting, so the subsequent swelling of his brain after the surgery will also cause vomiting. Jack has had a LOT of trouble with that today. Tammy says that other indicators are all slowly getting better, but the vomiting has been a big problem today.

DJ and Sophie have been with them today and were scheduled to leave today, but DJ got upset last night and would really like to wait until Jack is all the way better. They will still be leaving tomorrow. Tammy predicted that would probably be hard on DJ. Sophie seems to be doing okay with all of it, but doesn't look at Jack too much or pay much attention to him. Perhaps it's just all too much.

His little tongue is still somewhat swollen, but continues to slowly go down. His eyes are partly open and he's fairly aware of everyone around him. Physical therapy came to see if he could sit up for a while, and he did for almost an hour.

Pray that Jack's body continues to mend and heal appropriately -- that the vomiting can subside, that his tongue swelling will go down, that his digestive system begins to function well.

Pray for the level of care Jack receives; that each nurse will be attentive and loving.

Pray for DJ and Sophie as they come back to Abilene tomorrow to be at peace now that they have seen the gravity of the situation.

Pray that Jack can be moved out of the ICU.

Jack with the bluebonnets Posted by Hello

Jack and Dash  Posted by Hello

Hammin' it up with Sophie Posted by Hello

April 29, 2005

Mail for Jack

I know it's getting late for this, but if you would like to send Jack a card, his mailing address is:

ATTN: Jack Marcelain
Children's Medical Center Dallas
1935 Motor Street
Dallas, TX 75235

Clever tip: Instead of using your own return address, put the Marcelain's address as a return address. That way, if Jack has already gone home by the time your card gets there, when the hospital 'returns' the card, it will go to Jack!!

Marcelain Family
3833 Radcliff Road
Abilene, TX 79602

Ninety-five percent

Tammy writes:
Dr. Price, Jack's neurosurgeon just called and talked with me. She was checking on Jack and also giving me the full low down on the mri.

PRAISE GODThe mri showed that Dr. Price removed over 95% of the tumor. Not the original 85-90% she thought. I love Dr. Price for her kindness and gentle nature because it is so comforting, I love the news she gave me, I love her skilled hands that she has blessed us with, and I love God for giving her a gift of such an awesome nature. Just wanted to share some great news.
4/29/2005 2:38 PM

Bracelets for Jack

We are on a mission here in Arizona to do what we can to make this easier for the Marcelain family. We have ordered silicone bracelets that we will be selling in Jacks honor. They will say THIS LITTLE LIGHT OF MINE, and they will include his name.

Unfortunately they will not arrive until the middle of May. For those of you that would like to pre-order any of these bracelets e-mail me at carigililland@kw.com. They come in 3 sizes and they will be navy blue. I am expecting to sell out very quickly. $5 minimum donation. Of course the proceeds will be sent to the Marcelain family.

Tammy Says

Well they have added some more meds to Jack's menu. Some to sooth his tummy, some more to help him with the pain...He just had an xray to see where the feeding tube is in his stomach, they will move it around to bypass his stomach and go straight down the next area, maybe he can get some nutrition that way. He will have another xray after they move the tube, to check it has gone to the correct spot. A nurse, or attending, or fellow, or practitioner... told me the other day that although the text book recovery is about 3-4 days till they feel better, she has never seen it work that way. She said the kids either bounce back right away, or it takes about 7-10 days. I think we are on the slow route. Although the route is slow, the docs are not worried about his progress. We are looking forward to seeing DJ and Sophie and some more family today.Thank you for your prayers and keep lifting my sweet Jack up to our Father in heaven. I know that each time he hears a prayer for Jack he shoots more power his way. Thanks again.Love to you all.
4/29/2005 10:36 AM

From Rob

We want to thank all of you for your prayers and love. It has been a very humbling, amazing thing to witness how you all have responded to us. We want you to know that your love and prayers have been felt and has carried us through.I am several days behind in my reading of 40 Days, but the part that I am reading is about community and it's amazing to read about what God's ideal of church family is supposed to be, all the while we are experiencing it first hand. You all have been the sermon, and we have heard you loud and clear and love you for it.
4/29/2005 9:49 AM

Friday Morning

Is it Friday? I've lost track as I'm sure many of us have. Donnie Carroll just called me and had spoken with Elaine. Jack has had a hard night. His poor little tongue is still swollen and causing all kinds of trouble with him not able to keep down medicine or food. They have said that because the tongue is a muscle it will take several days for the swelling to go down! :-( Because trying to get any response out of him causes him to be so agitated, they are going to try to just leave him alone to get some rest today.

They have not heard from Dr. Price, but different doctor(s?) came by this morning and were very encouraged by the MRI from yesterday.

Pray that he does get rest and that it is 'mending rest' that mends his little body. Continue to pray for Rob, Tammy, and Elaine as they keep Jack at peace while at his bedside.

April 28, 2005

New from Tammy

Tammy Marcelain writes -Today has not been easy for Jack. He is hurting, and not talking yet. I know that he knows what's going on around him, but that swollen tongue is keeping him from eating, drinking, talking and laughing. I hope that the swelling will decrease soon. He had his mri today, no results yet. He couldn't eat, so they put a line down his nose into his stomach and fed him pediasure, he didn't tolerate it, so they have gone ahead and started giving him iv food again. It has been so hard watching him hurt and not be able to help. I thank God for the last hour we have had, because Elaine and I started singing children's worship songs to him, after we sang one, we didn't know if we were hurting his ears or if he liked it, so we said give us the thumbs up sign if you want another song. His thumbs immediately began wiggling. So we sang, and we sang, and ....when we got to This Little Light Of Mine, he must have liked it, because we got to "all around the neighborhood I am going to let it shine" both of his arms that have splint like things on them with tubes everywhere and wires everywhere, shot up and started circling with the song. Both Elaine and I looked at him, and tears started flowing. It was like his first step. We were so excited. So we sang and sang some more. Every time we were trying to decide what to sing, he would lift his arms and start circling. So we would start this little light again. I think he likes that one best because even though his eyes are closed and he can't move alot, he can move his arms, so he feels like he is participating in the song. Praise God for that glimpse of a light at the end of the tunnel.Donnie Carroll, from church, came today and delivered well over one hundred cards and pictures, toys, and all sorts of fun stuff. We have read him many of the cards, and they have made us laugh and cry. The children have done a great job sending their greetings to Jack. By the way Jack received a stuffed bull dog from Hutton, Tyler, Zack and Joshua, and that was the animal he chose to take to surgery with him yesterday. He really likes it. You all have been so generous to us. We don't have words to express, but our hearts are overflowing with gratitude. And Aaron, Jack asked before surgery when can he go to your house to play again. So he is looking forward to being with you.Love to you all. As Jack says "MAHALO".

From Tammy

Jack woke up today, not feeling great. I was glad to see him get some more morphine. He is in quite alot of pain, and doesn't want to move too much. He is still doing what the Dr's ask. Moving this and that. Trying to open his big beautiful blue eyes as much as he can. Dr. Rubel, the Neurosurgeon who does the morning rounds came by this morning and checked on Jack. He had him do the typical check up at this point, then said goodbye Jack. Jack in all of his sweetness who didn't even have his eyes open and really can't speak, lifted his arm and waved goodbye.

Jack's hurdle today is that because of the gravity during surgery his mouth which was facing down as they were working on the back of his head was open. His tongue hung down, filled with fluid and is swollen. It won't fit inside his mouth and he doesn't like that. He is not real aware of anything, but he definately doesn't like the feeling. Because of his tongue, they will either put a tube down his nose and give him real food today, or keep his iv's as being his main source of nutrition.

To all the wonderful people who are praying, and trying prayer for the first time for our son. Thank You. God loves us so, and I saw a cross in the gift shop yesterday that referred to We are fearfully and wonderfully made, that gave me encouragement because I thought even with this tumor and all that has gone on with Jack and his health, he is wonderfully made. I already knew that, but it made me realize that Jack is God's workmanship, made by him, on loan to this earth and gifted to Rob and I. And God knowsand has known just what Jack was and is and is to come. I thank you all for lifting our son and family to the Master Creator in the sky. Each time I think of all the love sent our way I am reminded of God's perfect love and the people who are Jesus with skin on right now to us. You are amazing. Thank you Sarah for this information highway. I am so grateful for you, the queen of blogging. To our family all over the world, Rob's father in Krgystan, who is having to deal with this so far away, our family in Arizona, from California to New York and all over the world. Thank you. To our family at Southern Hills Church of Christ, I am crying now. I am so grateful for your service to our family, taking care of my sister in law, who is taking care of DJ and Sophie. You are such a blessing to us.
4/28/2005 10:47 AM

April 27, 2005

Doctor Report

Okay -- I just got the info and I will try to relay it as clearly as I understand it, which isn't very well.

First -- surgery was 'uneventful' -- which is always good! Jack came through well. Rob and Tammy had already been able to see him for a minute and get him to respond to some things just a little. He's going to be kept sedated through this evening, then has a follow-up MRI in the morning.

The tumor appears to be non-malignant. Of course, this will have to be verified by the pathology report that will take a little more than a week to be returned. All of Jack's symptoms can be due to the pressure from the tumor. Even the vomitting that he was having on a regular basis last fall. There was a slight disappointment in that there were 4 small pieces of the tumor that Dr. Price was not able to get to because they were attached to the brain stem and "Jack was not tolerating her getting to them". The implications for those 4 pieces can be anything from no further problems and ignore them to needing to treat them as if they were a cancerous tumor. It will all depend on Jack's recovery for weeks and months to come. Jack will be going back to that hospital on a regular basis for a while to be monitored for that.

The next 2 sets of 48 hours are fairly critical for Jack and his punkin' head. The first set of 48 hours his brain will have to settle down and recover from the trauma of the surgery. The next set of 48 hours his brain will be adjusting to the lack of pressure from the tumor being gone.

Jack didn't even have to have his whole head shaved -- his incision is covered with a band-aid on the back of his neck. (I'm feeling a little like Gomer Pyle -- Gaaaahhh-leeee -- have brain surgery and get a band-aid?)

For those of you who have been using this blog as your sole source of Marcelain information, I have failed to mention that Tammy got the stomach virus that is cruising around Abilene and had the throw-ups Tuesday night. Then, spent the night sleeping on the waiting room floor of the ICU. Some things sound perfectly normal if you're a mother but otherwise, a little nutty! She said she woke up Wednesday morning feeling about 85% (we concluded 85% was probably as good as it would get sleeping on the waiting room floor!) I only spoke to her briefly before she heard from the Dr. -- Phil Ware (our preacher and friend) went in with Rob and Tammy to hear the Dr. report and he gave me all of the above information. She sounded good, but tired, when I spoke with her.

Specific prayers:
Pray that the next 96 hours of Jack's brain recovery are uneventful and he tolerates all of the recovery well.

Pray that the long-term implications of the pieces of tumor that are left don't interfere with Jack's ability to have a full and normal life.

Pray that Rob and Tammy can get rest and be able to be well. The Dr. really encouraged them to spend the night at the Ronald McDonald House tonight since Jack would be sedated for the rest of the night. Phil got the impression that they were planning to stay at the hospital. Allow me to editorialize and ask you to pray that they go to the Ronald McDonald House and get some real sleep. Today was only the first leg of this marathon. There is much more to wait on and deal with and decide about and I pray that Rob and Tammy will get decent sleep to be ready to begin the next leg of this Grand Adventure.

More Editorializing (It's good to be the editor! :-) Tammy has not had an opportunity to see the blog at all today, but she wept telling me about how much it blessed her yesterday to see this. This has immensely blessed me also. We are using this blessing of technology to let the church be church -- God's people touching and loving and praying for God's people. I think I only know about 70% of the people who have posted comments and only REALLY know about 50% of those, but I love each of you for lifting up our sweet Jack and Rob and Tammy in prayer.

Keep praying! I'll keep posting!

Hear Ye! Hear Ye!

Jack and Dr. Price are not quite yet out of surgery, but Dr. Price is closing his precious little head up. The nurse reported to Tammy that all seemed to go well. Dr. Price should report to Tammy in another hour or so (I say 'or so' b/c I think Tammy will hear within the hour, but we may not hear for a couple of hours). Jack will stay in recovery for a few hours. They will have him wake up to some degree this evening, but plan to keep him fairly sedated through the night. They will do another MRI in the morning to be sure his head is screwed on right! :-)

Surgical Update

Not much news, but we're all ready to hear SOMETHING! Surgery started at about noon, so they are about 4 hours into it. They spent some time putting in a shunt for drainage, then went to work on the tumor, where they still are. I got no prediction about estimated time of completion -- you'll be the first 500 people to know when I know! :-)

Keep praying, keep posting, keep blessing!
Psalm 73:28 "But as for me, it is good to be near God."

Surgery Day!

Many of us will be checking here frequently waiting for word from Jack (me? I have nowhere to look -- I just wait!) As you check the blog, please post a comment to tell your name, and where you live (city and state -- and I guess, country, if not U.S.!) I think it will be fabulous for Rob and Tammy and Jack to all see where everyone is that is praying for them. If you aren't familiar with posting a comment, click on the comment count at the bottom of this post. That will take you to a page that has a blank spot for you to start typing! More explanation is at the bottom of this page in "Posting a Comment 101".

As soon as I have word, I will post more. 8:00-ish: Surgery has been re-scheduled (again) for 8:30. A child came into the emergency room that needed the first slot, so now he's scheduled for 8:30. 11 a.m. -- Surgery STILL delayed. Jack is restless and hungry. Let's pray for this to get underway!!

Tammy and Rob -- look at the times on the comments for the post from Tammy. We truly have you COVERED in prayer, through all hours of the night!

On a Personal Note. . .

I have tried to be simply a 'relayer of information' here, but now that I know that Rob and Tammy have access to this, allow me a moment to speak directly to them:

Dearest friends -- First, I'm already bawling like a baby reading all of the precious prayers lifted up for Jack. I am so thankful for your faith and the faith and prayers of all of the warriors who are encompassing your family in prayer. I truly mean encompassing -- from New York to California! I know that YOU don't want my cruddy cough and drippy nose in your waiting room with you today, but I am truly grieving that I can't be there with you. (Since we haven't been able to speak on the phone, you don't know how BAD I sound. I told Donnie Carroll on the phone yesterday that you didn't need me around you -- he said, "It doesn't sound like ANYBODY needs to be around you!" Good point. Luv ya, Donnie! :-) I know I am not at all alone to say that you both have been the hands and feet of Jesus to my family on so many occasions, I wanted an opportunity to do that for you. Know that all day today I will be praying for each of you -- the doctors, the nurses, Jack, everyone waiting. I pray that a peace beyond all understanding settles on you. Again, I want so desperately to be there with you, but God wants me here on my knees! I love you both!

And, Tammy, -- this is WAY off the subject and somewhat goes with your scale story. Remember that I wanted to wait until this week to have our pics made b/c I wanted to lose a few pounds first? Well, now I'm just hoping my eyes aren't red and swollen shut and there is nothing dripping out of my nose! God really hates vanity, doesn't he? :-) I miss you so much! Praying lots!

April 26, 2005

Note from Tammy. . .

Don't know if I figured this out but, I just want to say that you bring tears of joy to my eyes in a very emotional day. My God has given me his touch through you all, you are His face to me. Jack is doing well, me, Tammy, am holding my own, Rob and Elaine are keeping a vigil here and we are all in constant prayer for my Jack. His greatest concern is the big round patch on his chest from the mri is going to hurt when it is taken off. He said he thinks he will leave it on until he dies, I said I think it will fall off long before that...He also woke up this morning and said that he was so lucky that his hospital was so wonderful. I have taken pictures of him with the amazing caregivers that are by our sides, and especially his, joking and playing with him. He did tell me that when I talked to the doctor to tell her he was ready to go home and he didn't want surgery. Bless his heart for his sweetness. I love this ball of sunshine and I appreciate your prayers and outpouring of love for my family.Tammy Marcelain
4/26/2005 5:14 PM

Surgery Plan

Dr. Price will be performing the surgery. They will take Jack at 9:30 a.m. Wednesday, April 27, and the surgery will start at 10:30 a.m. It is a 6-8 hour surgery. 8 p.m. -- Minor change in the plan. Jack will now be taken at 6:30 a.m. and the surgery is scheduled to start at 7:30 a.m. So, it will still be a long day, but they could be finished by early to mid-afternoon, instead of late afternoon. Tammy didn't feel this had anything to do with any change in Jack, but probably simply an opening in the schedule. Start praying a little earlier!It appears to be the most common type of brain tumor found in children and also appears to be totally contained. It will take approximately 1 week to get the official results of what type of tumor it is and to determine treatment after surgery, if any. Be praying for Dr. Price and her hands and knowledge, pray for Rob, Tammy, and Elaine as they prepare Jack for this scary time. Pray for any travelers that are headed there.

There has been some confusion about the MRI from this morning -- that was to rule out any tumors on his spine. There is a tumor at the base of his brain stem that he will have removed tomorrow, but there are no additional tumors on his spine. Sorry for the confusion.

Also, since Rob and Tammy are both not working this week AND this will be a huge financial burden, Southern Hills has set up a fund for the family. You may make a check out to Southern Hills Church of Christ and put 'Jack Marcelain Fund' in the memo.

First Prayer Victory!!

Jack's MRI of his back this morning was clear! He had been having pain in his back, also, so there was a concern that there were spinal tumors, as well. There aren't. Still waiting word on a date and time for surgery!
John 16:23 "I tell you the truth, my Father will give you whatever you ask in my name."

Tiny bit more news. . .

Heard from DJ Bulls -- DJ was our worship intern at Southern Hills for several years. He now works with a church in Dallas -- North Davis. Here is an email from DJ:

Just got back from Childrens. Was there from a little after 10 until just now. I waited until Jack got back from the MRI, they should find something out in at least an hour, that they did in three sections. Trying to make sure that there was not growth or adverse effects from the tumor on the spine that has been the cause of his back pain for a year now. He had not gotten anything to eat since yesterday afternoon before the flight from Abilene to Childrens, and when I left his temperament was much improved with a happy meal. They are checking in to staying at the Ronald McDonald house tonight and through however long they will need to be here with him, and the time of his surgery will largely be determined by the results of the MRI!

I am so thankful for the Ronald McDonald House for the Marcelains! So, I guess as they get the results from the MRI we will know more about the surgery. I'll be posting!
Mark 10:27 "All things are possible with God!!" (exclamations mine! :-)

Something little Abilene folks can do

Some precious ladies are trying to see to it that Rob, Tammy, Elaine, and Jack know that we love them dearly. They are gathering things to send over a care package. For Wylie folks, Karen Gililland is collecting -- cards, notes, whatever. For Southern Hills, you can get your things to me, Sarah Stirman (although I am currently so sick you may not see my face for a while) or to Karene Neill. Robyn Wertheim from Highland is also getting some things and Robyn will see to it that it gets there. Something that Robyn mentioned friends from Highland appreciated when they spent a lot of time in a children's hospital: at H-E-B, you can buy a pre-loaded Visa/MasterCard. It doesn't cost any more than you want to put on the card, and you can put any amount on the card. Robyn has offerred to buy a card, if you would like to email her and add to the amount robyn.wertheim@cox.net. Calling cards would also be appreciated and used, I'm sure. You may know more than me what people waiting in hospitals need. Jack may appreciate a book or coloring book, but being in ICU, I can't imagine that he could do much more than that. The first package is going out Thursday morning, so get your things to any of these ladies on Wednesday. And, keep praying!
Matthew 18:10 "(these little ones). For I tell you that their angels in heaven always see the face of my Father in heaven."

Some News, but not much

This is a quick prayer request! Jack will have an MRI this morning at 10 a.m. (and, yes, I'm posting this at 9:30!!) This one is on his back to rule out any spinal tumors. He has been having some pain in his back with activity. Pray that will be clear! He will have surgery on his punkin' head sometime between today and Thursday. I guess as they have it scheduled they will let us know. He is currently in ICU, so only 1 adult may be with him at a time. They are in Dallas Children's Hospital (I've heard 12 different names of where they are -- I'm going to go with this one for now) and say that it is a great experience. Sophie and DJ haven't been told that there is a tumor, nor that there will be surgery. I'm sure that's going to happen soon, so pray for that conversation. I am trying to get the name of the surgeon who will be doing the surgery that we may all be praying for him/her specifically. Again, as I hear more, I will post more.

Isaiah 42:16 "I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them."

Posting a Comment 101

For those of you that are fairly new to BloggerLand -- WELCOME!! If you love to people-watch as much as I do, you could spend all day "surfing blogs" and reading about the lives of perfect strangers. However, that's not why THIS blog was created -- this blog is to keep up with Rob and Tammy and Jack and Sophie and DJ Marcelain and send them our love and prayers. Some of you are unfamiliar with how to post a comment and, after looking at the blog, I realize it's really not very self-explanatory. Each 'set' of information I put up is called a post. At the bottom of the post is a line that says, "Posted by Sarah" (that would be moi'), the time (and this one will be at an unbelievable hour -- I have a cold that is interfering with my sleep), and how many comments have already been posted to that particular post. If there aren't any yet, it will say '0 Comments'. Click on the 'comment count' and it will take you to a page that has a blank spot for you to type in your message. If you aren't a registered 'blogger', (which you're probably not if you need this info! :-) then just click on the 'anonymous' button. However, your heading will say 'anonymous', so be sure and sign your name at the bottom of your message. When you are finished, hit the 'publish' button, and voila'! You have left a cyber-message of love and prayers! If you have any more questions, please feel free to email me at sarahstir79605@yahoo.com

April 25, 2005

April 25, 2005

Leave it to me to start an entire blog when I have virtually nothing to write! I have created this blog to be a place to keep church family updated, as well as allow your comments to Rob, Tammy, Jack, Sophie, and DJ to let them know how much we love them and are praying for them.

All I do know is that last week Tammy was concerned about Jack's eye turning in on occasion. Thursday afternoon, she said, "Yeah, I should call the Dr. about that." Next thing I know, Jack is scheduled for an MRI for Monday morning! The Dr. called Tammy this afternoon and had she and Rob come back to the office, where she (the Dr.) broke down, and said there was a 'fairly large' tumor in Jack's brain, and it looked to be a good possibility that it had been there a while. Dr. Garcia called the neurologist at Children's Medical Center in Dallas and he was going to meet them in the emergency room this evening.

A chartered plane was provided the Marcelains and this afternoon several of us saw them off. We hugged, we cried, and we prayed. Tammy mentioned that about once a week Jack asks, "Mommy, when do I get to ride on an airplane?" The good news is, he was definitely ready to enjoy the ride. He feels well, and only knows that another dr. is going to do more tests (but he doesn't want any more shots!) Rob, Tammy, Elaine (Rob's mom), and Jack(obviously!) were all going.

They finally took off about 6:00 p.m. So, that means they have probably seen a doctor by now. I, personally, am praying that they look at the Dallas results and say, "What tumor?" And, of course, I'm praying for all involved -- Sophie and DJ especially -- to be at peace. Rob's sister, Tamara is in town, staying at the Marcelain's house and keeping up with the kids (although she has a 4 year old and 4 month old of her own!)

As I hear more, I'll post more -- until then, keep the prayers going!

Jack and Sophie, ringing in 2005! Posted by Hello