May 31, 2005

7am Tuesday Morning

We are just about ready to go. A couple more hours before they sign us out of here. Jack is anxious to get going, the weekend pass was fun, but it has wet his whistle to leave the hospital. We did go to the Dallas World Aquarium and Joe's Crab Shack, then on to walk around the West End in Dallas. It was a fun day. We are looking forward to seeing our dog, being in our home, being back at church, and especially Jack's Welcome Home party tonight. Thank you all for your prayers that have blessed us through this part of our journey. Jack will continue with outpatient therapy when we get home, so for those of you not in Abilene I will keep up the blog another couple of weeks, then probably get email addresses to whom would like a weekly report there after. God bless you all for faithfullness to our family.
Love, Tammy

5/31/2005 7:11 AM

May 29, 2005

Sunday Evening

Tammy called last night. Just to fill you in on very few little details -- Jack's pass from the hospital was postponed until today. Rob got in late yesterday afternoon and the weather was yukky, so they waited until today, AND it ended up being a 6 hour pass! As of last night, the plan was to go to the Dallas Aquarium and eat at Joe's Crab Shack -- all of which sound like an excellent idea to me! I haven't spoken with them today, but I assume that's what they did. And, I may not have the chance to talk to them before they LEAVE!! Very exciting! Rob took Tuesday off, so he and DJ and Sophie are going to wait until Tuesday, when the 5 Marcelains will pack up the ol' van and wave good-bye and God Bless to the Baylor House!

Tammy, it's 11 p.m. Sunday night. I'm thinkin' you have 36 more hours there. Can you believe we're talking HOURS now -- not weeks or days? Hurry up, Tuesday, hurry up!!

May 27, 2005

Tammy says Friday afternoon -

Jack and I just returned from Children's Hospital and the cat scan went well. No hydrosephelus, which is just what we needed to find out. The headaches that Jack are having, really more brain pressure than headaches, are something to watch out for and keep an eye on but as of right now things look great!!!!
I was very glad we didn't have to wait till Tuesday to get the scan done. Keep your prayers coming!
Tammy

5/27/2005 4:22 PM

Tammy says on Thursday Night -

Jack had a busy day today! We had all his therapies, had an end of school year pizza party with all the kids, and went on a field trip to the Dallas Science Museum and saw a movie on the imax screen. We are anxiously awaiting Tuesday, we will have a cat scan Tuesday morning to check on some headaches that Jack is having and then we are homeward bound. I think the headaches are more worrisome to me than anything else. The docs and nurses say the headaches we need to worry about are the all over pain kind, not the come and go pressure kind Jack is having. So I do not anticipate any problems, but I would like to be safe than sorry.
Jack said today when we were playing Candyland in the playroom that for a long time he thought he was just dreaming about all this, then he realized today that it was true and we were really here. I thought that was funny because sometimes I feel like that too, when I told him that, he got a big grin on his face.
We are wearing the Jack bracelets today as we just received ours in the mail today. Jack is so proud to be wearing a bracelet with his name on it.
I am glad family comes tomorrow and Saturday, I will enjoy them and ofcourse Jack will too! We have a 4 hour pass on Saturday afternoon to take Jack out of the hospital, don't know where yet we will go to, any suggestions? Somewhere not too hot, don't want him to get over tired...but fun and close to the arts district in Dallas.
Well I am counting down the days, 5 more to be exact to being home.
Love, Tammy

5/26/2005 8:35 PM

May 25, 2005

It's Party Time!

As things stand now, Jack's party is planned for Tuesday evening in the fellowship hall at Southern Hills Church of Christ. It is come-and-go from 6:30-8:00. Hope everyone can make it and hug Jack, Tammy, Rob, Sophie, and DJ and tell each of them what a precious light of Christ they each have been -- and that we are SOOOOO glad they are all home!

May 24, 2005

Date of Departure

---- Next Tuesday
Hooray!!!
Tammy

5/24/2005 3:49 PM

Tuesday Afternoon from Tammy-

Jack is at "snack attack" group time with 2 other kids his age right now. They are making orange julius's and having a great time I am sure.
I talked to Dr. "Mack" this morning and he was going to talk with the other therapists today and see about moving up Jack's date of departure. Haven't heard from him, and I might not until rounds tomorrow morning.
Jack has been officially released from speech therapy all together.
Patti said there is nothing left to work on, his swallow is perfect and he has his voice back. I am amazed at that. Jack has enjoyed all of his meals today, and best of all the feeding tube was removed. God has blessed the people in this facility through Jack's smile and kind nature. Everyone seems to be drawn to him. Teenagers are dropping by in their wheelchairs to our room, just to tell Jack hello, and all the little kids his age enjoy playing alongside him.
Jack's roomate Sahan, 3 yr. old boy, is doing better also. He was officially removed from coma status, and is able to talk and sing a little. He is responsive at times. There is a long way to go on his therapy, after the car accident that he and his mother were in he had a stroke that affected his left side. But after seeing all the work that is done here to help children heal, I am sure that he will be up and around in time. Please pray for Sahan and his mom, his father and grandmother have asked us to ask to pray for him.
Moe is Sahan's father, and a muslim, and he said to me today, that Jesus has healed Jack. I pray for Jesus to shine His glory all over this family and for them to see just where that Glory is coming from.
As always love, Tammy

5/24/2005 2:44 PM

May 23, 2005

Monday Evening

Hi Everyone -
Jack's swallow study went great today, he passed with flying colors. For Jack's first real meal since his surgery he chose a happy meal, cheeseburger, fries and a sprite (coincidentally this was his last meal he chose before surgery, I think I see a pattern). Then he decided he wanted a bowl of cereal for dessert. He has already got breakfast planned, pancakes, eggs, sausage, and cereal if he is still hungry. The speech therapist, Patti, told Jack she has never seen a child heal so quickly and get their swallow back who has come to this facility. She said Jack is the vitastim poster child. Jack is excited to get his feeding tube out of his nose tomorrow, and I am hoping from the dr. for an estimated departure date. I am hoping to return soon, but I don't know what the dr. will say. I do know that Jack has done exceptionally well, and I would want to have him in the best place for where his needs are.
Jack is still talking about the bus that picked us up from the rehab and took us to "Big Baylor" today for the swallow study. He has had a great day.
We are currently looking into a dr. in Abilene for Jack's vision, as that is one of the areas that has changed from the surgery. The dr.'s here at baylor recommended Dr. Wadley in Abilene, and there is a pediatric opthomologist that comes to Abilene once a month, named Dr. Moody, we are waiting to hear from Dr. Wadley about his recommendations. We will be coming back to Dallas frequently for a long time so if we needed to have an eye dr. here, we could, but it would be nice to have them in Abilene if we could.
Jack's right eye is turned in at this point and we might need to wait that out, or he might need some special help with that also. I guess the eye doc would tell us what to do about that.
Looking forward to giving an estimated date of departure soon.
Tammy

5/23/2005 6:53 PM

May 22, 2005

Did you order a bracelet?

Don't forget to pay for it!! If they aren't already in, they will be soon and SOME slackers (especially Sarah Stirman) have not paid for the bracelet(s) they ordered!! Checks can be mailed to:

Jack Bracelet
2964 S. Woodruff Cir.
Mesa, Az 85212

May 21, 2005

Saturday Morning from Tammy -

I am excited to say, that the plan from Thursday to wait till next week for Jack to eat was moved up. Jack went into speech therapy yesterday and came out with an empty bowl of chocolate pudding and a huge smile on his face. Apparently there was no more delay in his swallow reflex and the therapist felt it was safe for him to eat. He was so excited and I was too! The new plan is for Monday to go to the hospital for the swallow study and then by Tuesday Jack could be eating real food at will. It will take about 3 or 4 days in my estimation to get his nutrition intake all from food, and for his tube to come out, then we are home bound. Everyday he surprises the therapists with his progress!!! Thank you God. Love to you all.
Tammy

5/21/2005 7:06 AM

May 20, 2005

Friday Morning From Tammy -

I had said in my previous email Jack was mainly using one or two words at a time, well last night we called his best friend, Aaron, and Jack and Aaron talked continuiously for over 30 minutes. There were no incomplete sentences, Jack was talking just like he would have talked a month ago. I guess he just needed his best friend to bring it out in him. I told Jack that when we go home to Abilene that I would give him a welcome home Jack party, so he and Aaron planned the menu and decorations, cakes, all the fun stuff last night. Jack said after he got off the phone, "Mom, do you think I could have 2 cakes?", and I said ofcourse you can have 2 cakes, then he said "do you think I could have some candy at my party?", and I said ofcourse, what is a party without candy? and he said do you think I might be allowed to eat a piece of candy? I told him hopefully before we go home he will be eating candy, and he got a great big smile on his face. Anybody in driving distance to Abilene get ready for a welcome home Jack party shortly after we return.
We love ya'll.
Tammy

5/20/2005 8:18 AM

May 19, 2005

Thursday from Jack

Jack says -
Thank you for praying for me. I feel good today. I have talked, read a book, played a game, colored with chalk, played a little basketball, walked some stairs, and practiced my swallowing today.

Thursday from Tammy

Tammy says-
Jack is talkiing well today. He uses mostly one word at a time sometimes two. He did read a book with Sahan's father, Moe, who has a great way with motivating everyone around him. Jack gave Sahan a squeeze toy for him to play with. I asked the speech therapist about when she would give Jack some food to try, like pudding, and she said maybe next week. He will practice his swallowing and continue on the vitastim therapy then go to the hospital for a swallow study. After she sees everything is going to the correct places then he can try eating. I also asked her about an estimate for time here and she said that she could not really tell, but if Jack continues to proceed at such a great speed it could be as little as 2 weeks more. Keep praying for Jack, he is doing so well and in good spirits. He likes to go to the child life room, and play with the volunteers and new friends he has made.
Thanks for your continued prayers.
Tammy

5/19/2005 4:32 PM

May 18, 2005

JACK'S BACK!!!!

Jack is talking, Jack is swallowing, Jack is happy and smiling!
His therapy went great, he was swallowing saliva on his own. I was so excited we called daddy to tell him, and Jack started talking to Daddy on the phone!
Then we called Mommer (grandma) and when Elaine answered the phone Jack said, "Hi Mommmer this is Jack!" Jack just told me he has to go to the bathroom so we have to log off!!! talk again soon to you, I am talking to my sweet boy now.
Tammy

5/18/2005 4:43 PM

Wednesday Afternoon

Tammy says -
Thanks for all your enteries in the blog. They continue to give me encouragement and a burst of energy whenever I read your posts.
I have just come from Jack's care conference and Dr. McDonald, (Dr. Mack as he is known around here) is very encouraged and feels great about Jack's recovery. He again said that Jack is leaps and bounds (thank you Father) ahead of where most are at this point. Normally we would be here for atleast 6 weeks, and he didn't change the paperwork to make that a shorter time as of yet, but that he feels that it wont be that long. He said that their are 2 things that need to be taken care of before we can go home, safety - making sure Jack can walk strongly so he doesn't have any falls, he is just about there already and secondly that he can take in his own nutrition, and swallow properly. The speech is going to come within all that I think, but it is not a reason for us to stay here any extra time, we can do outpatient therapy in Abilene for continued help in that area. So praise God, I think unofficially he was expecting about 4 weeks longer here, but we could change that at anytime that Jack would master above mentioned. Thanks for your prayers because they are working! God has given us a recovery full of miracles.
Tammy

5/18/2005 12:29 PM

Wednesday morning -

Today is a new day!
Yesterday was hard for Jack I think that he was just real tired so his therapies were not very productive.
We also have our care conference today where all the therapists and the facilities dr.s come together and talk about Jack and his progress and future goals. I will look forward to going to that.
Jack seems to be in a good humor today and is happy right now. Pray for continued happiness and for endurance during his therapies so he can continue to progress at this awesome rate.
Speech is our last therapy of the day, and the therapy he needs the most work with, he is pretty tired by 3pm so I am hoping that next week they might be able to get us into a morning slot. Don't know if it is possible, but let's pray for God to make that happen.
Love, Tammy and Jack

5/18/2005 9:45 AM

May 17, 2005

Tuesday Morning

Jack had a good day Monday. He had a good speech therapy. He didn't like the electrode therapy too much, it doesn't hurt, just feels weird on his throat. The therapist distracted him and he was able to think about the blueberry sucker he had rather than the sensations on his neck. He had many good swallows with the vitastim on. He even said "yea" and "doo" as in scooby. The therapist said that the words were part of his healing not from the use of the vitastim. He had a bit of a meltdown in occupational therapy, didn't like the activity. It was stretching his neck muscles by having him on all fours throwing some stuffed toys into a basketball hoop looking thing. He had to lift his head for this. It still hurts quite a bit and is uncomfortable for him to move his neck because of the surgery. Physical therapy went well, throwing a ball, kicking a ball, and walking stairwells.
He is also laughing alot (not during therapies) now. His sense of humor is still with him. He is full of little jokes.
Hope to email soon with the newest progress.
Love, Tammy

5/17/2005 2:52 AM


I have also forgotten to add that Jack's diagnosis right now is called Posterior Fossa Syndrome. You can log into google and punch in those words and it will tell you a little about what he is going through. Not all kids that have a tumor removed move on to this after surgery, but some do. Atleast we know a little about it from this information and feel reassured that with time all this will work itself out. I love having information, and not just guessing about why certain things are happening with him. Thought some of you might be interested in that.
Tammy

5/17/2005 3:00 AM

May 15, 2005

Sunday Evening

Tammy Says -
What's new today?
Jack is smiling at will, laughing when he wants, pointing to where he wants to go, and most helpful nodding his head up and down for yes and no. No more guessing as to what he wants!!!!
This week Jack will start a therapy called vitastim, they will put little patches on his throat that will stimulate his throat and muscles around there to swallow. He has 5 one hour therapy's this week, one a day. The therapist said he will be eating a little stuff each day during this therapy. Jack is ready to eat mentally, so I hope this works well, so he can eat with us. We have been eating outside his room, because it makes him sad to not eat when others do. It didn't seem to bother him seeing me eat a powerbar or soup in a can, but when it comes to real food it is a different story. Keep his swallowing in your prayers. Oh to be tube free!
Love, Tammy

5/15/2005 5:27 PM

May 14, 2005

Tammy says -

Saturday afternoon here at Our Children's House. We have had a fun day with family in. Rob, Tom and Elaine, DJ and Sophie, and visits from some great old friends and great new friends.
I am glad to say that Jack poked his tongue out at me, another first. I don't think he was being mean, just figured out he could make it work for the first time today. Jack has enjoyed DJ and Sophie. They have both doted on him all day, when not taking turns riding in his wheelchair. DJ has become a pro at navigating himself in it.
We are grateful for all your prayers. Keep praying, we are seeing great improvement everyday.
Love to you all.
Tammy

5/14/2005 5:33 PM

May 13, 2005

Jack Speaks!

Tammy says -
Jack said "mom" today!!!!
He was waking up so he wasn't really thinking about it when he said it. Just said mom real loud. The speech therapist says that the most common words he knows will be what he can say first, and when he is not thinking about how to talk, they might just slip out.

I got a great quote from the chaplin here. I have so much admiration for Mother Teresa, and always have enjoyed reading her words, and about her actions. I have continually been thankful for the blessings in this situation, but there is a part of me that is a little miffed with this situation also, God can do anything, so why is this being allowed to happen to Jack? I go back and forth in my prayers with thankfulness and then lament.

But this quote has calmed my spirit a little...

Some people came to Calcutta, and before leaving, they begged me: "Tell us something that will help us to live our lives better." And I said: "Smile at each other; smile at your wife, smile at your husband, smile at your children, smile at each other - it doesn't matter who it is- and that will help you to grow up in greater love for each other.: And then one of them asked me: "Are you married?" and I said; "Yes, and I find it difficult sometimes to smile at Jesus." 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.

From A Gift for God by Mother Teresa.

These times are hard for me to smile, but when I am thankful to God for the good and that the bad isn't worse, I feel a blessing in my heart from Him.
Have a good weekend.
Tammy

5/13/2005 2:30 PM

Jack's Current Contact Info

Our Children's House at Baylor
3301 Swiss Ave. #209
Dallas Texas, 75204

May 12, 2005

Thursday afternoon. . .

Tammy Says-
Three therapies today. Speech/swallowing, occupational therapy, physical therapy.
Jack swallowed when he had to in speech therapy, he got a cherry sucker, which helps him want to swallow , then she works with all that goes on, moving the sucker from side to side in his mouth with his tongue, swallowing, ....
He did good for his first day. The therapist was great.
The ot and pt were good for Jack also. He drags his feet a little (sometimes literally, mostly just figuratively), but today he crawled through a tunnel, played ball, walked stairs, 2 flights, walked in a courtyard and navigated a obstacle couse of objects stepping over them.
He seems to get a little frustrated but as the day and therapies went on he seemed to fair a little better. Not as emotional.
I had a great visit from Connie Womble and Jenny Oglesby today, and Frosty and Daryl Sumner stopped by today. It was a great day to see faces of friends.
The nurse that tended to Jack today, her name is Donna, was giving Jack his meds this morning and asked where we were from, I told her Abilene, and she put all the connections together, she has a friend in common with us and has been praying for Jack. What a blessing to have someone who has lifted my son up to the Father, giving him his care today. She was a true blessing.
Hope ya'll have a great night.
We hope to also.
Love, Tammy and Jack

5/12/2005 4:45 PM

May 11, 2005

From Rob. . .

Fogive this rookie's mistakes. I can't beileve that I forgot to mention Jack's smile. I sat down to write and in an effort to relay information I forgot to write the two most important things. One being that Jack did smile. And it wasn't just that he smiled, he smiled because he thought he was playing a joke on us. Tammy was telling him that she couldn't wait to see his lips again (he usually keeps them pursed in) and one way to get Jack to do anything is to tell him to do the opposite. This usually has success when he is frowning and we want him to smile. So I told him,"Jack, whatever you do, don't stick out your bottom lip." Boy, he shot that thing out there. Then Tammy brought that up latter as we were drying him off of his shower and we heard this strange sound. I asked Tammy if he was coughing or laughing and she said laughing, so we looked at him and just the right side of his mouth curled up into a little smile. He did it for us one other time that night and Tammy said he smiled again Tuesday.

I'll call her here in a little bit and then probably post after church tonight.

Love,
Rob.

5/11/2005 4:19 PM

May 10, 2005

Rob reports. . .

Hello everyone!
It is with very mixed emotions that I can say that I am back in Abilene as of 4:30 or so this afternoon. Leaving was one of the hardest things I've ever had to do, but I guess it is back to the real world sooner or later. It was very good to see Sophie since she was unable to make the trip this weekend because of her being sick.

We got moved over to Baylor this morning, so I can report on a few things. It seemed like a very nice place, very different than what we have been used to however. One of the ways God has been taking care of us is that the patient load at the hospital was very low the entire time we were there so we never felt like Jack was being neglected. This place is FULL. Not that I think Jack is going to be neglected, but a very different atmosphere and energy when there is SO much going on.

Also these are semi-private rooms so Tammy and Jack are sharing it with another patient and his grandmother. There again was another lesson in how blessed we have been in all this. The boy in there looked to be about 5 years old or so and was in a car accident. He is going to have a long road ahead of him. A little later we meet the father and he tells us that his wife was also involved in the accident and she is over at Parkland Hospital. He just spends his days driving back and forth between the two places between his wife and son. He had to quit his job because that is all he does. The boys name was Sarhan I think if you would like to pray for him and his family.

The doctors there seemed pleased with all that Jack was able to do. They asked him to point with left and right fingers, bend and straighten his legs, they were real impressed that he is already walking even if it supported.

When I called Tammy after getting home she said that none of Jack's therapy will start until Thursday so they have a fun day of absolutley nothing to look forward to tommorrow. But we are glad to be there and I think we will see some rapid improvements in Jack.

I wasn't home 20 minutes when Wayne and Leon pull up to mow my lawn again. Trust me, my lawn has never had it so good. Thank you guys for your act of love.

Thanks to everyone, you all have carried us through this, we wouldn't have made it without your love and strength.

Please continue(I know you will) to pray for them.

Looking forward to seeing many of you tommorrow night.

God bless all of you.

Rob

5/10/2005 10:08 PM

(from Sarah) And allow me to interject here (you knew I couldn't just be quiet!) that Rob mentioned to me that Jack smiled yesterday! (Rob, I know it's hard to remember everything when you sit down to type!) That was the absolute best news to me and something I have been praying for for days! Rob, thank you for sharing some of the toughest days of your family's life with us so that we may share in the pain and prayer, as well as the victories and smiles!

May 09, 2005

Monday Morning from Tammy

Monday morning Report from Tammy
We had a long weekend, not bad long, just long, without the library and the wonderful blessings of reading the blog, and most of everything closes down at the hospital on the weekends, it was like a ghost town here. Jack went to 4 or 5 therapies on Friday to none on Saturday, (except our therapy of getting him up and walking and coloring, stickering), and one therapy on Sunday. So we are glad to see Monday roll around and the hustle and bustle of the hospital again. We are planning on moving tomorrow to Baylor. They were waiting to discharge some patients today for a bed to open up for us. Looks like that happened and Jack and I will be transported by ambulance tomorrow. The facility is called Our Children's House at Baylor. I meant to bring address and phone number with me to the library but forgot, I will post it before Rob goes home today. (see post below -- s.s.)


Jack had another cat scan Sunday morning, it looked good. The ventricles were still enlarged but no build up of fluid, so looks like that is working well. The cat scan showed a pocket of air behind his heart and maybe some in his neck area. Nothing to worry about as long as it doesn't grow, it will eventually dissolve back in to the body, might take a couple of weeks to happen. They will monitor that by xray. He had been coughing pretty badly over the last 5 days so they xrayed his chest and found the beginnings of pneumonia. He started on antibiotics last night. The respitory therapist will be in twice a day to work that area with her patting tool. I got pretty upset yesterday with all that news, I guess I just want him to get better with no more complications. I have been assured by all the doctors that come in that it is nothing to worry about, we will still move on to Baylor, I think that they record everything, even mom's tears in Jack's chart, so they are all reassuring me when they visit Jack. Jack's chart is about 3 1/2 inches thick from the last 2 weeks.

Great things that Jack has done over the weekend:
His eyes are just about normally opened now. Focusing on stuff is not easy still, but he is working on it.
He cried last night with his mouth open, sounded like almost back to normal. He normally has held his mouth shut with lips pursed in all of his cries.
He is walking stronger every day.
He loves his shower, he is liking to hold the shower head in his hand and just let the warm water fall on him for a while. When it comes time to dry off, he likes to dry his belly and back and face, we help him with the rest. I am so glad that this child of mine who was born independant is struggling to gain that independance back. He is determined to not let people take care of him any more than he needs to. Therapy is another story, he doesn't like it, and wont really work with the therapist well. But we work with him and he is making strides with us.
We have taken a walk to the candy machine for him to buy DJ, Sophie and Cousin Lauren candy. He likes to give people things and that is a great way for him to practice his walking. We ofcourse break it up into individual purchase trips. So he has to go back each time and walk more.

I am assured by all the changes this weekend that I wont have to wait too long to see his smile again.
God bless you all. We love reading your encouraging posts.
Tammy

5/9/2005 11:10 AM
<
Good news for Jack and me...Rob will stay one more night and get us settled into the rehab. I am so glad of this, I will feel more comfortable with all the goings on knowing that Rob and I are in the goings ons together.
Tammy

5/9/2005 2:57 PM

Monday Morning from Rob

We sure do miss hearing from every one over the weekends. The address where Tammy and Jack will be moving to is:
Our Children's House at
Baylor
3301 Swiss Ave.
Dallas Texas, 75204

I'm not looking forward to leaving today, but I guess it's back to the real world sooner or later. Please keep the prayers going up for them.

I am looking forward to seeing every one Wensday night.

Love, Rob.

5/9/2005 11:28 AM

May 07, 2005

Not much more. . .

Tammy checked in with another friend. Not much is new from all of my earlier assumptions -- Elaine is returning to Abilene Sunday, Rob is returning Monday when Jack and Tammy move into rehab. Tammy is encouraged by Jack's willingness to be taking care of himself -- showering and washing his hair, etc. The therapy that Jack has been doing has made him TIRED (as anyone who has been through therapy can attest), but that also means he has been sleeping really well and been peaceful. They just sounded good and continuing to chug along on this Grand Adventure the Lord has placed before them!

Saturday

I forgot until this afternoon that Tammy has told me she can't get to the computer in the hospital over the weekends and the computer at the Ronald McDonald house is on a timer and shuts down before she and Rob ever get back there. SO, we won't be getting any word from them, so you'll just have to settle for my uninformed ramblings.

I haven't heard from them directly, but through other people I've heard that it's been more of what we've read about -- therapy and plans to move to rehab on Monday. It just made me realize how far Jack has come this week. Last Saturday Tammy called me. It had been an awful day, with Jack throwing up more than a dozen times and less than efficient nursing care. This week -- just in the 4 days since I was there! -- Jack has gotten all of his tubes removed (and his 'brain drain' or 'head straw' removed!) He has taken some steps. He's not as angry as he was. He quit throwing up! He's moved out of ICU. He's seen the trains -- he's seen the SUNSHINE!

Mary Sue had a precious reminder to us all that God spends nine months forming those beautiful children in their mother's womb -- it may take longer than a week for his brain to heal from such trauma and the constant, intrusive companion the tumor has been for more than a year.

Tammy, on this Mother's Day weekend I pray that God blesses you with meaningful glimpses into the healing He is providing for Jack. I pray a fountain of blessings on you that you may find a renewed spirit. And Tamara, as your Mother's Day finds you separated from part of your family, as well, I pray that God bless you with rest and renewal and blesses you many times over for caring for your family. And sweet Elaine, I pray that God also bless you with overflowing love in the same way your love for all of your family has flowed from you.

Love to all of you!

May 06, 2005

Friday from Tammy

Sarah I am sorry for your computer. What a headache. I hear you are keeping some of the kids for Tamara today to take Sophie to the Dr. All the cogs that are turning to make things work at home are amazing.
We will look forward to seeing Sophie when she is better, and can't wait to see DJ today.
Jack is deep in the middle of therapy after therapy. We just returned from occupational therapy and music therapy will be there soon. (He likes that one) then this afternoon physical therapy. We will see speech therapy soon this morning also, the swallowing thing is not working too good yet. He didn't have the study yesterday because he wasn't swallowing water or jello that was offered in small amounts. He has made good friends with the suction tube and likes to hold onto it and suck out his saliva himself. Good for motor skills, not so good for swallowing practice.
We will have one last cat scan on Sunday before we go to Baylor on Monday to make sure that his head is still looking good.
He is holding his head alot, he had an assessment last night because of it, Teenie, the nurse practitioner for neurology said he is looking good neurologically. Could be sinus' or allergies so they started him on an allergy med. last night.
I was glad to see tears working for the first time yesterday. Never glad to see him cry, but glad that one more function is making its way back.
He has not lost any of his love to cuddle. He loves to lay his head on yours and just make a soft humming noise.
We were so glad to see the Allen's and the Ware's yesterday. Thanks for making a trip to see us and a trip to target. Jack likes his new jammies.
Well I am glad to be looking at another sunny day as I am sitting next to the window. Jack has enjoyed going for wagon rides outside in the walking areas. Today will be warm and sunny for him to enjoy.
He is walking better each day. Still with someone one each side, but he is more sure footed each day. Thanks for all your prayers and cards, warm wishes, and tears. We all love Jack and the wonderful personality he has, can't wait till we are all together again.
Tammy

5/6/2005 10:49 AM

Technology's Great -- when it works

Well, dear blogger friends, the unthinkable has happened in this blessing of Jack updates. My computer has crashed. I have re-installed my operating system but am waiting on a replacement disk to re-install my internet provider's software. More info than you need, I know. I say all that to say -- I am currently sitting in the Abilene Public Library to update the blog. Updates will be a little less frequent than in the past. However, when I get an update from Rob or Tammy, it is simply from a 'comments' post that I re-post so that it is front and center. They will still be here -- just perhaps a little harder to find.

I do know that Sophie woke up with more than 101* fever today, so won't be travelling (traveling is like vomiting -- it doesn't look right either way) to Dallas to see Jack this weekend, but Tammy has figured out a way for Sophie to get her own special trip to Dallas when she is well! Tamara is not feeling well and could use our prayers for sustenance as well.

Rob and Tammy, my apologies to you for my technology failure. We're all still praying!

May 05, 2005

Thursday evening

I haven't heard from Dallas today, but I've heard from the Marcelain house -- and poor Sophie is sick! She has a Dr. appt. tomorrow to determine whether or not she should go to see Jack this weekend. Pray not only for her, but for all of the kids at the house. Tamara and her servant spirit brought her 2 small children into the house to care for kids while Rob and Tammy are away. Pray that she does not end up with a house full of sick children.

Thursday A.M. from Tammy

The council has spoken:
No Chemo No Radiation, Let's Watch it Carefully!!!!!! Praise God.
The tumor was reported as being a benign tumor, but there are 3 reasons to watch it: 1. The tumor had invaded the brain stem and some still resides there. 2. The tumor is measured by how quickly it divides. This tumor has a number of division 4.6 that is a little high for the type of tumor this is. 3. There was some other change in the cerebellum that the doctors had seen initially and they will keep watch on that.
But what that means to us is that we have many opportunities for God to shut all that down and leave Jack treatment free.
She named it for us, but I will have a nurse write it down later and then I might be able to copy a 26 letter word that I have no idea how to spell or say.
Jack is still making progress daily, he wouldn't open his mouth for us unless we just forced a sponge in to keep his mouth clean, but today he is much more freely opening his mouth and biting a tool that speech therapy gave him. He seems to have control of his pearly whites, ....
The speech therapist will give him a bit of sterile water in about 15 minutes and observe how he swallows it, then if she is satisfied with that we will go down to radiation for the swallow study, and then maybe introduce some soft food or juices today.
Jack slept hard last night. First night to sleep all the way through. He is on tylenol with codeine at night and regular tylenol during the day to help with the aches and pains. We also put him in a big red wagon last night and he enjoys being pulled around for a while. I think he likes that better than the wheelchair.
Well..hopefully we will give more great news tonight. Jack could be eating mcdonalds before we know it.
We are still on the schedule to go to Baylor Monday for therapy.
Love to you all.
Tammy

5/5/2005 9:52 AM

May 04, 2005

Tomorrow, tomorrow

Dearest blog buddies -- it's late, and many of you have probably already 'checked in' for the night. I just now have SOME things to report, but not much. This comes via the mom of a Marcelain friend who visited today.

Tomorrow (Thurs., the 5th -- Cinco de Mayo!) is due to be a big day. The swallowing test didn't happen today and will happen tomorrow. All of Jack's doctors have a meeting scheduled for 7 a.m. to discuss his progress and come up with a plan. AND -- what we all want to know about -- the pathology report on the tumor is due back tomorrow.

I'm too tired to pinpoint each of the prayer needs in the above paragraph -- but I hope they're self-explanatory. I leave you with encouragements from the posts today:

DeLynda Gray quotes Deuteronomy 31:8 - "The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged."

And Frances Green reminds us: As we lift up prayers for Jack's recovery I am reminded of what God said to Abraham, "Is anything too hard for the Lord?" Thanks to God for the healing he has brought and for what he will continue to do in Jack. Nothing is too hard for our God!

And our song in HIP tonight -- He is MORE than able. . . yes, Lord!

Wednesday morning from Tammy -

Jack has since seen the trains 3 more times since the last entry from me. One time happened to be at 3:30am this morning. He couldn't get comfy and was just having a hard time. So Rob and Jack and I, and all the equipment that travels along went to see the trains on a midnight stroll. The hospital was quiet and the trains were turned off for the night, but Jack still enjoyed getting out.
Today I think we are going to be scheduled for a swallow study. Jack will drink some funky red drink then the radiology people track that and see where and how his swallower is working. After that I think they will have a better idea about his capabilities to swallow.
pt will come today and hopefully we can be given the green light to let Jack practice walking officially. He is doing great, (unofficially). He likes to stand for a short time and take a couple steps, we are holding on to him at all times to steady him and keep him safe.
Last night I had cried out to God in my heart to give me direction and I got my Bible to seek His Word for an answer. The first page I randomly opened to was Psalm 19. In the first paragraph, I was assured that he had heard my plea. I wont try and quote it here because I don't want to mess up God's words, and misquote, but if you are curious look it up and see the answer God showed me.
Living in His Grace and Mercy.
Tammy

5/4/2005 9:48 AM

Psalm 19:1-4 "The heavens declare the glory of God; the skies proclaim the work of his hands. Day after day they pour forth speech; night after night they display knowledge. There is no speech or language where their voice is not heard. Their voice goes out into all the earth, their words to the ends of the world."

May 03, 2005

Tuesday evening (from Rob)

Dear Family,
I'm not sure there will ever be enough words or time to thank you all for all that you have done. In the lowest of times we only have to come here and feel your love. Know that it has carried us through many times.

To be a part of such love is so amazing it really opens your eyes to the big picture of what God wants for His children. You have given us a glimpse of heaven and I will never forget it, why more people wouldn't want to be a part ot this is beyond me.

We just gave Jack his first shower and I think the water may have woken him up a bit. He tried taking several steps. They were wobly, uneasy steps but they were steps and we were thrilled. Now we would like to see that smile back.

Now that we are no longer in ICU we are able to put cards up on the wall so we spent some time doing that this morning. We got tired before they were all put up. That is yet another display of all the love we have recieved.

We have heard wonderful things reports on We are the Sermon. I'm not surprised. You've been pracitcing all week.

Much love,
Rob Marcelain.

5/3/2005 7:36 PM

Tuesday afternoon (from Tammy)

The brain tube is out. We just took Jack for his first wheelchair ride to the front lobby which has a huge train display. He had just been in the treatment room, getting the drain out of his sweet little head. We had 30 minutes before the nurse said he needed to be hooked back up to the feeding tube, so the neuro nurse practitioner, one of Jack's favorite people here, said get this boy off this floor and take him to see the trains. So bloody hair and all we took him down to the lobby. He liked the wheelchair ride, a bit groggy from the morphine due to the procedure, but he liked it we could tell. He will enjoy going back tomorrow. Now that he is not being monitored for brain pressure we can move him around a bit more, and tomorrow the pt will come and help us get him walking.
The neuro nurse practitioner also said that the rep. from the children's rehab facility here in Dallas would be by to speak to us tomorrow. They will evaluate Jack and decide if he can do outpatient therapy for speech or if inpatient therapy would be best. The hospital will keep us here only until Jack's feeding tube can be taken out, when he can eat. Could be another day or two, then we would either come home, or Rob and Elaine would take Jack and I to the rehab where we would live for up to 6 weeks.
This was not easy news for me to hear. As I would love to come home and hug my kids necks, and pick them up from school when they are sick, and help them shop for teacher appreciation gifts...I ofcourse want what is the very best for Jack so it could be a while until we get home. Keep your posts coming.
p.s. The neuro nurse practitioner, kathleen, said she had never seen a child be so still for the procedure that Jack just had. Rob held him and was able to comfort him. They had the music therapist in their with him singing, the child life specialist in talking Jack through it all and the medical team. Boy, Jack is such a blessing to us.

5/3/2005 4:03 PM

Tuesday a.m.

Today is Tuesday, Jack just had another cat scan. Don't know any results on it yet. He still has great readings on all of his statistics..heart, O2, Brain, breathing...We are encouraged. This morning the music therapy rep. named Shea stopped by to help Jack work out some frustration. He loved it. He didn't want to play an instrument today, but he had his own band, all of us in the room. The music therapist had a beautiful voice and played her guitar and sang a couple of songs. It soothed him, and he has been sleeping ever since.
Thanks for all of your comments and prayers. It is therapy for Rob, Elaine, and I, to read what you are saying. Feelings of isolation when you are living in a hospital are common a nurse told us, but we haven't felt that at all because we can read words from all of you Jack fans out there.
Love, Tammy

5/3/2005 10:59 AM

May 02, 2005

From Tammy

We were moved from the icu today to the 9th floor. They are known as the brain floor, they wear fleece jackets that say "brain team" on them. There is a picture of the brain on the back, and the brain has 2 dangly eyes hanging from it.

Jack is still working through some stuff, the docs say this can last 3-4 days or 6-8 weeks, but it appears at this time Jack does not have control over alot of his face. He keeps his eyes almost closed (I miss his eyes) and can't speak at this time. He was able to get that pesky old tongue in his mouth to stay last night. Swelling has gone down completely. Speech therapy was in today and he gets pretty mad when ever he sees a new face walk in the door to poke, prod, ... but the therapist was able to start assessing his capabilities at this time. The part that is Jack in his brain is working great. The part that helps him get that out, by speaking or motioning or moving around is not working. Everyone says that he will regain all of that, but it will take an undetermined amount of time.

My prayer for Jack today are that: His brain gets back to normal sooner than later. They will try and feed him real food in the next 48 hours I think. So that will be something to look forward to.
I also pray that he is comforted, because he can not talk, he is so frustrated. He gets real angry. I don't blame him a bit. I would be the same way.
Pray that Jack finds his voice.
The tube that drains the spinal fluid from his brain has been closed for about 36 hours as of now, they did a cat scan, and decided not to remove the tube from his head just yet. Some of the spaces that were storing the extra spinal fluid on the top of his brain, have not done yet what they need to do. I am not disappointed about this, because his numbers have been great on the brain pressure, and I hope that in the next 3 or 4 days things should work themselves out.One of the nurse practitioners said that this blog was a great way for me to chart Jack's progress. Just when I think that there is so much in front of us, I can look back and see how far we have come.
I pray for continued perspective like that, because it is overwhelming at times for us all. I am in constant prayer for Jack, I take comfort that so many others are to. I am continually grateful for the love and praying that you all are doing. Jack has alot of friends, he has never met a stranger, and he has a kindness for everyone. May God bless him with all that and immeasurably more.
IN HIM,Tammy
p.s. Last but not least, thank you Sarah, Karene, Denise and Jana for making the trek to Dallas today. It blessed us all so.
5/2/2005 7:29 PM

Room 414, We're Outta here!!

I am thankful to Tammy who has post a comment that I will put 'front and center' in just a moment, but I would like to offer my perspective (editor's privileges, don't you know). Tammy's comments let you know that Jack has come a long way, yet still does have a ways to go. Let me tell you about what I witnessed first-hand:

My friend Tammy is the consumate mother -- caring for and loving her child is as natural as breathing to her. Sure, she's getting tired, and more than anything she longs to catch glimpses of 'her Jack' that has been too long away, but since her Jack is, indeed, in Children's Hospital -- there's no place she would rather be. I'm not surprised by this at all -- it was just so precious to witness it.

Rob is not only a precious and loving father, he longs to ease his wife's burden and be any help at all to her. He's still very much the Rob I know -- concerned for all of his family and a servant- leader to them.

Elaine -- I really only know Elaine as the woman that the Marcelain children run to for hugs and love at church. What a blessing to her family she is. Hurting with all of them and loving all of them. We told her today and I will say it again: how precious for the family that she is able to be there to help. She is an extra dose of energy and love.

I don't say all of this to add any pressure to these 3 to be perfect for us -- it is simply to illuminate what you already are. It is what you cannot help being -- it is God's Spirit shining out of you.

And Jack -- well, we all know Jack and that's why we're here. Jack is full of life, sweet and thoughtful, and will do anything to make us laugh. He's still in there, and is on his way out as soon as his precious brain remembers all of those wiring connections.

I fear writing something like this because I know that the Godly people you are don't want the glory or attention, and the humans you are want to be sure we are aware that you are infallible. Well, no kidding. But in times of crises, your sponge is squeezed, and what's been in you all along comes out. Why are we not surprised it's the Spirit of the Lord?

May 01, 2005

Allow me to clarify. . .

Okay -- I haven't received an 'official briefing from the war room' yet today, but I've spoken VERY briefly with some folks that have been over there. There seems to be a lot of confusion about where Jack is vs. where Jack should be in his recovery. I keep referring back to something Tammy wrote a few days ago:

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.

Jack does, indeed, seem to be on the 'slow route', but the health care professionals are not concerned with how he is doing. It's just painfully slow going and difficult to watch for Rob and Tammy and Elaine.

Jack is alert, and today he was quite agitated and irritated with all of it. He is weary of the nurses messing with him. He's still not talking b/c of his tongue and the feeding tube, and I'm sure that adds to his frustration. Because his tongue is so swollen, and the pain Jack can be in will cause him (as it would you and me) to grit his teeth, his tongue is now quite cut up. (If you've seen Million Dollar Baby -- well, ewww.) So, it just seems like insult on top of the injury.

They're still in ICU, and probably will be until his vomiting can slow down.

I am going to see all of them tomorrow with a few friends. We will give you the 'real deal' lowdown tomorrow. Keep praying!