Hayden Bryce Johnson

Beautiful New Beginnings

2010-06-29T18:49:00.002-05:00

Hello all. I'm sorry it has been so long since posting. Some of our Boston friends reminded us that we needed to post more. We have been to Boston for Hayden's post radiation checkup. I am pleased to say that his residual tumor (the parts they couldn't quite get out) has shrunk by 20 to 30%. This is amazing news! We are so thankful for all the prayers that have been spoken on our behalf the last 4 years. I know I mention this a lot but we really couldn't begin to tell you what that has meant. Dr. Liebsch was very pleased. He said that he would have been happy had the tumor stayed the same so for it to shrink and shrink considerably was a huge bonus! We know that we have had some exceptional Drs but God is a beautiful healer! Thank you Jesus for blessing us! We are so thankful.
We will go in a year for another checkup...we don't have to do anything in between except breath! Please continue to pray for Hayden to continue to get stronger on his right side. He is doing well.

Talk to you soon...
Christy

post surgery

2010-05-06T20:51:00.002-05:00

Hello everyone,
Hayden had his surgery today for removal of port in chest and tummy tube removed. The surgeon said he did well and Hayden will be a little sore around tummy tube area because the surgery was a little more extensive than first thought. Hayden is at home resting tonight it has been a long day for the little man. They had to be at Vanderbilt at 10:00 am and they did not take him back till almost 4:00 pm so he is pretty pooped along with Mom and Dad, Mason on the other hand is ready to rock n roll as usual LOL. Please pray all heals well and that nasty infection on his back goes away. The surgeon looked at it today before surgery and said he believed it was some kind of staph infection but should be covered with the antibiotics that Hayden is on right now for the infection. We are thankful for answered prayer for our family. Thanks for being on this journey with us, you will never know how much we appreciate all the prayers and comments. Thanks again.

Thankful beyond words for God's faithfulness,
Mimi

surgery

2010-05-04T09:15:00.002-05:00

Hello All,
On the last post I think I forgot to mention about Hayden having minor surgery to remove the port on his chest and removal of tummy feeding tube which will take place Thurs of this week (5-6-10}. Would appreciate prayers for all to go well. Will try to update after the surgery. I believe he will be glad to get both out and not have to protect them when anyone wants to hug or play. I guess he thinks someone will inadvertently hit them causing pain I'm sure. SO need your help with prayers.Thanks, for being there for us.

Mimi

Update

2010-04-24T10:25:00.004-05:00

Hello family and friends,

Wanted to give an update on progress on Hayden and family. Hayden has been going to school when he is not in a doctors office which seems to be every few days and goes to therapy on fridays. Daddy had to get a cortisone shot in back on Thurs. of this week because of bulging discs one of which is leaking. Jeremy and I went on Wed to babysit boys so Mama could get Daddy to hospital for procedure. Hayden threw up on Thurs AM and was feeling bad with sinus YUK again. Has a place on his back with MRSA infection and Mama and Mimi are feeling really STRESSED!!!! Don't understand why this little fellow is having to endure so much. Now, on two antibiotics one for sinus the other for MRSA.

Went with Hayden to physical therapy and OT on Fri. They really work him a lot which is good because he is showing quite a bit of improvement in using hand and leg on right side which he was not using several months ago,,,PRAISE GOD! While we were in PT on Friday, Dr. Liebtch called from Boston and set up appt for June 16-17 for MRI and 1 yr check up post radiation.

So I have some prayer requests which is normal for me right???

-Please pray that these sinus infections Hayden keeps getting will stop and the flow of liquids from his nose from drinking will stop because that area has healed completely and properly to keep the liquids from going through nose.

-Pray for antibiotics to take care of MRSA infection on back and it will not spread to other areas.

-Pray for upcoming trip to Boston for financial peace and funding and most of all a good report on MRI and over all health of Hayden to be a good.

-Pray for Daddy's back that this injection will do the job w/o surgery.

-Mom, Dad, Mason will stay well and God will continue with giving them the peace they need to get through this journey.

Thank you for all the prayers being lifted in our behalf for our family. We believe God has a big plan for Hayden and are looking to Him for guidance and healing. Thanks again....

Still Praising Him,
Mimi

Praising God!!!!!

2010-03-21T14:43:00.007-05:00

Hello Family and Friends,
Got home late from Christy and Dave's in Lewisburg, last night. I have just gotta say THANK YOU JESUS!!!!!! When we (Terry and I) got there we were so stunned to see Hayden and Mason outside playing ball with Uncle Jeremy. I say this because Hayden has not wanted to play ball or do anything outside in about a year because of his right side being so weak and not working hardly at all. He was using both hands to swing the bat and shooting hoops with the basketball with both hands... Praise God! Hayden was swinging the bat and hitting that ball and having a great time doing it. He was not running but he did not even have his brace on his foot and he was walking still with some weakness but really doing well w/o the brace, not being quite as wobbly as I have seen him. We were so excited for him!!!! and for Mom, Dad and brother.

Now I would like to tell you why we were so late getting home....we had to take Hayden on Saturday to ER because he was up all night long with a cough that sounded like he had some major junk in his lungs and throat and when he coughed he could not get it up or down the junk was so thick. So Momma and Mimi took off to Vanderbilt which was an irritation b/c he had been to PCP office on Wed. and they did X-ray of chest and said it was negative for pneumonia but they did see spot where he had it last year about this same time. He had just finished the antibiotic they sent him home with from surgery. They told her to give him Delsym for cough and if wasn't better bring him back in....well needless to say wasn't any better and he did not get any sleep for that night and neither did Momma, Daddy, Poppa or Mimi. So the Dr. in ER said his palette looked great, tissue looked great healing going well, chest was clear (another xray was done) but he could see a lot of drainage and thought it was allergy related. So put him on benadryl at night and zyrtec during day to dry up the junk. With that being said we need prayers for this medication to take care of drainage and junk so Hayden can continue to get well. He is really working hard at trying to strengthen right side and I am so proud to see him trying because before he did not want to do anything but sit and watch tv and that is not a good thing to do, if you don't use it you lose it. (muscle mass and strength)

Just want to thank you all and to give praise to God for He is the healer and you all are such great prayer warriors for us. We cannot do anything without His strength and we are so proud that we now are seeing some good coming out of all that Hayden has had to endure in his short 6 years on this earth. Thank you for all your prayers, even when you all are so busy with your own lives and you lift us up with a quick prayer you will never know how much that means to our family and how much God uses that to help us get thru some tough days. So please continue to prayer, we have another MRI that will need to be done in Boston because Dr. Liebtch needs to see Hayden for check up and evaluation on progress, this needs to be done late Spring early summer. We want to get a good report from that also. Tumor GONE or unchanged would be great news. We are very greatful for family and friends who are always there to listen, prayer, cry and smile with us.

Much love and Thankfulness,
Mimi

congestion

2010-03-11T16:57:00.002-06:00

Hello family and friends,Just wanted to ask for prayer Hayden is having some problems with congestion and he has not been feeling well for the last couple of days. So would like for all of you prayer warriors out there for some more help. Christy took him to his primary care doctor this afternoon and she said chest sounded clear and put him on some delsym for cough. He is on augmentin antibiotic from hospital (surgery). Also need some prayer for Mom and Dad they are worn out and seem to be short fused, which I can understand. When you have a sick child it's bad enough but add being tired, a 3 yr old little brother who is a pistol and feeling overwhelmed with all......just please pray. First that Hayden will feel better and the antibiotic will knock out this illness and it will not cause any problems with the surgery area and that Mom will be able to get done what she needs to, to feel better. Thanks for all the prayers and concerns for our family.

Leaving it with God,
Mimi

HOME!!!!!

2010-03-07T17:08:00.004-06:00

Dear Family and Friends,
Just a quick update on Hayden and family. All are at home as of now. Released earlier this afternoon and had to stop by Aunt Brooke's to pick up Mason and Titan(puppy boys got from santa). On the way home Titan put his paw around the calf of Hayden's leg and put his head on Hayden's lap. Christy sent me a pic of the incident. Hayden I am sure was lovin it knowing he was going home to sleep in his own bed tonight. Christy said Drs. were pleased with the results of surgery. Hayden will be on antibiotic and pain meds until the healing is a little further along. He is in good spirits and brother is excited to have him back with him again. Mom and Dad are exhausted to say the least, but thankful for everything going well with surgery and Hayden doing well.

Aunt B and Uncle Jeremy did a great job taking care of Mason and Titan. I am finding out they don't need me as much as I thought.....Imagine that>>LOL. And I am thankful for God showing me this tid bit of info now. Maybe I can calm down with the control freak issue...HAHA!!

Would like to give thanks for all who have been praying and also say how much it means to have such a wonderful family and friends who continue to lift us up. Please continue to pray that the tissue continues to heal correctly and that Hayden can get back to being a little boy again..

Thanks again for the prayers and God's faithfulness in our lives as we look to Him for guidance and answered prayers.

Still Praising Him,
Mimi

Post Surgery

2010-03-06T18:23:00.002-06:00

Hello Friends and family,
Just talked to Christy and she said Hayden has not been resting to much at all which means no one rests. He is now running a low grade fever. He is still in Vanderbilt in Nashville. Ok just got update via text message from Christy again nurse just took temp again and it is back to 98. WOOOHOOOO. God is so faithful. So with that said here are some prayer requests:
-Pray for rest for Hayden and Mom and Dad
-Continue to pray that tissue will heal correctly and no set backs
-Pray for brother Mason and Aunt Brooke and Uncle Jeremy because they are the caregivers for Mason. ( Since Mimi has had a little episode with heart issues)

Thank you sweet dear friends and family for continued prayers lifted on our behalf. We truly are experienceing the peace from God.

Also would like to add a special request for much needed prayer for a little boy who is now 5 years old. His name is Isaiah and he was in Vanderbilt 3 yrs ago when Hayden was having his first tumor removal surgery. Isaiah is also back in Vanderbilt now the Drs. think he has suffered a stroke. So please lift this little fellow up and his family for God's healing hand to be upon him.

Thanks again for all your care, concerns, notes of encouragements and especially the prayers.

Still Praising Him,
Mimi

Post surgery report

2010-03-05T12:13:00.002-06:00

HHello Everyone, Just wanted to let you know that Hayden is out of surgery to repair palette. The Doctors were pleased to see that the tissue in the palette area was in good shape after thradiation treatments he had. Hayden tolerated the surgery well and now is resting. He said his throat was hurting but the drs said that will be normal and in 12 hours will be feeling a lot less of the pain. They had to put tubes in the nose to keep the air ways open from the swelling so I am sure that is uncomfortable. But he is such a trooper.

God has been so faithful with all Hayden has been thru, so please continue to lift up the family up and that this tissue will continue to heal properly and he will not have setbacks. Thanks for all the prayers and calls and concerns for our family. We are so greatful for all of you who follow us on our journey. Thanks again......God is Faithful. Will try to update more later after Hayden is awake and able to communicate.

Still Praising Him
Mimi

Update

2010-02-22T14:47:00.002-06:00

Hello Friends and family,
Just wanted to mention some prayer request for the Johnson family. They have all been sick with some kind of virus for about 2 months now. Christy had the stomach virus on Friday of last week and Hayden and Mason and Dave have had sinus and chest congestion and now Mason is running a low grade fever and they have all been on antibiotics. So needless to say patience has been an issue with all involved.

You saw from Christy's last post that Hayden will have his palette surgery on March 5, which is a week from this Friday. He needs to get over congestion and get well, so his body will be able to heal from this surgery. So with that said please pray for:

a: healing from whatever this is that they have and keep passing around to each other.
b: for doctors who will be doing surgery and all who will be taking care of Hayden.
c: surgery will go well with no set backs and palette will heal with no problems from where he had radiation to that area.
d. Mom and Dad's health and brother's health.
e: Mimi and Papa will be able to keep up with Mason, while brother is recovering.

Thank you all for hanging in here with us while we are on this journey. We have felt the prayers and seen a lot of answers. Please continue to lift our little man up. He has been such a little trooper and I know God is faithful. Because He has brought us this far and we will continue to trust Him for the rest. Thanks again for your prayers....Will try to update asap with post surgery info.

Still Praising Him,
Mimi

2010-01-31T10:01:00.002-06:00

Hello from Icy, snowy Lewisburg, Tennessee!

We finally got some good winter weather. Mom and Dad came over and got snowed in. They even got some snow at home!
I hope everyone had a great holiday season. We did. Santa brought the boys a Golden Retriever.
His name is Titan. We are big fans of the Tennessee Titans so hence the name. And..He is going to be a huge dog. He's a little over 3 mos and already weighs right at 30lbs! The boys are having fun with him. He chases Mason around nipping at his little bootie. It reminds me of the old Coppertone Commercial where the girl is running and the dog pulls her swim suit down exposing her bootie. So Cute!!
Hayden is doing well besides a sinus infection right now. He is now going to school full days which is a great accomplishment. We are having surgery on March 5 to repair his palette. We ask that
you please pray for him that everything goes well and his tissue heals nicely. The surgeon feels that it will but there is always a chance because he has had radiation to that area. We are having it done at Vanderbilt by an ENT named Dr. Steven Goudy.(Sp) We are feeling like this is our year for restoration and healing so please pray for that. His right side continues to still be some weak. There are days where I think I see improvements and days not. I have not gotten him back into physical therapy yet. The school is supposed to be doing some of that but when we put him on half days before Christmas they discontinued it until he was there full days. It is very hard at times for me to get everything organized on a day to day basis. I run up and down the road during the week feeling like a taxi service more than anything. Hayden is working his arm a little at times on his own without being told which is good. I hope that being at school and around his friends will cause him to push himself a little harder. Please remember this prayer as well. I feel like a drill sergeant so much of the time and less of a mother. I get some criticizing for not getting everything done which even more frustrates me. I am only one person and with David working in Spring Hill a lot falls on me. So please pray for me because I lose my temper on this matter having to defend all that I am or am not doing.
We are so thankful for the prayers. We should be in the Hospital for the weekend for his surgery so I hope that is all that it is, no complications through the whole process.

Christy

2009-12-19T18:41:00.002-06:00

Good Evening!

As I begin to write about how we've been doing, I am completely overwhelmed with a wonderful
report from Dr. Liebsch. He is in agreement that Hayden's scan looks good and feels that all that
we wanted to accomplish with radiation has done its job thus far. I am soo thankful to all who have continued to pray without ceasing. God has been faithful even when I feel that my life is
spinning out of control with worry, doubt and just plain FEAR! A month or so ago the boys began
compiling their Christmas list. Hayden wanted to know what I wanted for Christmas and I said that all I wanted was my boys to be happy and healthy. I wanted Hayden to just be a little boy
again..no more tumor. He said Mom that's not a good present you must want something?? I said
Hayden, that would be the best gift! I remember those days when wishes were more to do with toys or dolls than an illness. My, how thankful I am that Hayden can still be filled with the wonder of the season than the reality of Cancer. My God has truly brought more blessings than
I deserve! We will probably be doing another scan in late spring or early summer and possibly
go to Boston for that because Dr. Liebsch wants us to come for a year check-up. Please continue to pray for strength for Hayden and his continued therapies.

From our house to yours,have a very Merry Christmas!

Love,
Christy

P.S- I'm also thankful for that little rascal who's name is Mason Parker(as he says). We always had to try to conceive ( the first 2) but then along came this ball of fire named Mason. God gave us great comic relief with him..we are constantly in stitches with the things he does and says!
Today while in Wal-Mart we were walking past the toy section..mistake number one! Anyways, he saw this drum set and would not walk away from it after I stopped to let him play for awhile. I ended up just putting it in the buggy and putting him in as well and he was going to town! (Let me add one more detail he had on a red cowboy hat that he just had to leave the house with!) So..needless to say he performed for every person passing by. It took forever to leave because people stopped to listen to him say that he was in a rock band and watched him play! One cute teenager stopped with her friend and then began to leave and he yelled out hey, where are you going? I'm not done yet!! Thank you God for a wild child named Mason!

Update

2009-12-01T19:14:00.004-06:00

Hello All,
Hope you all had a nice Thanksgiving...We were able to spend time at Christy and Dave's because Dave had to work over the Thanksgiving holiday and could not get out town and the rest of the family had all the junk that's been going around (congestion,coughing, runny noses, fever for weeks). We enjoyed our time there and had lots to eat. We did not however get to all sit down together as a family to eat the traditional Thanksgiving meal because about the time we got it cooked and on the table someone from Dave's work called and he had to go in so we had to eat without him. We missed him celebrating with us but we had plenty so he got to eat when he got home. Before the blessing I ask Mason (3 yr old) what he was thankful for and he just busted out with Fooriends.(that's his friends). Hayden said his brother, Mommy and Daddy and family. I just love asking them questions and hearing their answers. What BLESSINGS!!!!!

Now for the update....Hayden has had numerous ear infections for the last 3 months and the ENT Dr. said it was time for tubes so we were in Vanderbilt on November 30 for that and he did great. He is now at home telling his brother to be quiet he's being too loud.LOL.....Hayden also has an appt. on Wed. -tomorrow for consultation on pallette (SP) repair which still needs to be done. Please pray that Christy and Dave will have a peace as to where to have this done and whether it be Vanderbilt, Boston, or Little Rock and get it done ASAP. The ENT Dr. who did tubes feels it will help him to do much better to be able to get his words out better and he will adjust more socially with his peers, she feels it will help him with his confidence.

Please continue to pray for healing of his right side. He is still having a lot of weakness there and walking is hard along with right hand is not able to work properly because of the weakness.
So even the everyday things such as writing, dressing himself, going up and down stairs, and going to the bathroom (getting pants down) can become problems. Unfortunately as an adult with MS I know how hard that can be....I just cannot stand to see him have to struggle with this issue at age 6. But I know God is in control and he will continue to bring Hayden through and use it for His glory. We still have not heard from radiation oncology Dr. in Boston, need prayer for that also.

Since the holidays are here I pray for a very Merry Christmas and Happy, Healthy, safe New Year. for you and your family. Remember the real reason for this special time of year. No matter what's going on in your life, God is always there to walk you through, good times, bad times, sad times, glad times. He never fails to work all things for His glory in all times. Thanks for being on this journey with our family and God's richest blessings for you all.

Much love,
Hayden and Mason's Mimi

2009-10-20T22:02:00.002-05:00

Hey Everyone,

We are doing OK. We still have not talked with Dr. from Boston yet. He has been out of the country for several weeks. Hayden is I think feeling better but has some anxiety about
going to school. Please pray for us. The mornings are sometimes rough around here
trying to encourage him to go to school and get him there on time. Please also pray
for his strength. He is still fighting about doing exercises with me. I am exhausted
honestly trying to stay positive and keep him there as well.
We are going to do a work up here with Dr's from Vanderbilt regarding his palette
repair. We will then make a decision whether we feel comfortable here or Boston.
Hayden does have fluid behind his left ear which after a hearing test revealed that
Hayden cannot hear well at all in that ear. They may put tubes in, but for now they
will reevaluate in 6 wks. The fluid is clear so hopefully it will drain on its own and not
add on another surgery.
There is alot to pray for, please continue to do so. We greatly appreciate it. We have also
found out that our heat/air unit is beyond repair so we will have to get a new one. This also weighs a great deal on us.

Must close for now. Again Thank you all for lifting us up!

Christy

2009-09-28T20:59:00.004-05:00

Hello Family and Friends,
Wanted to update you all on the where we are with Hayden's health issues. Had the MRI done at Vanderbilt Hospital and Dr. Pearson who did the first surgery looked at the last MRI Hayden had done in Boston and compared to MRI done at Vanderbilt one week ago and he said he did not see any new growth. PRAISE GOD!!!! We wanted to hear that the radiation treatments took care of the rest of the tumor but we did not get that news but God is faithful and we are so thankful that there is no new growth. However Dr. Pearson did see some fluid behind Hayden's ear and they are scheduling an appt. with an ENT Dr. to see what needs to be done regarding that matter. We do not know why this fluid is there or where it has come from and Hayden still has the opening that needs to be repaired in the roof of his mouth from last surgery. The Drs. and Mom and Dad had agreed to wait on that surgery till he recovered from radiation and the last surgery.

The dvd of the most recent MRI was forwarded on to Dr. in Boston and we are awaiting a call from him on what we are to do next and what his opinion is regarding this most recent MRI.

Now onto the news of how Hayden is doing with going to school this year. He is loving it on most days still has a problem with not wanting to eat breakfast but is getting better as long as Mom has donuts (HAHA!! don't know where he gets that from). Hayden is continueing to blossom with school and making friends. He still has little use of right side because of paralysis and weakness but wears a brace on hand at night and leg brace during the day to help stretch and make him use his leg. He has become very good at using his left hand to write and do everything he can so he doesn't have to use the weak side so that has become and issue. Haydens gets physical therapy and OT 2 times a week to help with strengthening those muscles.

Little brother Mason has started preschool on Mon, Wed, Fri, half day so Mom has time to exercise and do chores or have some ME TIME, when she is not trying to do Dr.appt.and scheduling for Hayden. Mason is enjoying preschool and learning lots from all his little friends and teachers. He such a funny little guy, I don't know where he comes up with some of the questions he asks but this is such a great age to be around and I love it even if it wears me out within 3-4 hours with him. These grandbabies, what a BLESSING from God. I cherish my time with them and I pray God will help me to be the grandparent He wants me to be for them.

Okay now for prayer requests:
1.) Direction for future of next step to take for remainder of tumor and fluid behind ear.
2.)Wisdom with scheduling of palette surgery and that it will go smoothly with no set backs and it will be successful.
3.) Hayden will work on strengthening those muscles and using them so they will not atrophy.
4.) The braces will help him and he will not complain about wearing them.
5.)Keep family free of illness and flu and continue to strengthen Hayden.

Dear friends and family thank you all for continueing to lift us up in prayer, give us words of encouragement and phone calls to check on us and family. You'll never know how much each of these mean to us and on some days get us through some down moments. God is still in control and has been faithful thus far and we are continueing to lean on Him.

Still Praising Him,
Donita (aka Mimi)

2009-08-13T16:54:00.003-05:00

Well once again I've let the month go by without posting. I just can't seem to catch up! We have been busy. Hayden got his Make a Wish trip and we went to Disney World! We returned on Aug. 3rd. We had a great time being together just the four of us. I will try to get my computer lady AKA- Jenna to change some of the pictures to our trip instead of the old ones from Christmas.
Hayden is getting ready for school. He will go this Monday until 1pm and then Tues and Wed. until 3pm. Please pray for his stamina to keep up. He is soo excited about going. We have continued therapy for his right side this summer. I feel the more he's up and moving those muscles that the stronger he gets. His gate is still off a little which the therapist said was normal.

So just continue to pray for complete restoration. After much prayer we are going to do the first scan here and have them send the results to Boston. One morning I was praying about guidance and I recalled a conversation between us and the ENT in Boston. He said before you do the repair to his palette make sure he's done with surgeries for a while because of having to intubate. The Dr. said that they could mess up the repair on the palette if he needed that. I felt like that was my answer. Do the scan here and see where we are at and then travel to Boston for the repair of the palette maybe his fall break from school or something. I am so thankful for people who have been praying with and for us on every step of this journey. We have had many prayers answered. Please continue to pray for the scans to be CLEAN and FREE of any type of tumors! Our God can and I believe that this could be the season we have waited for, for 3 years to be healed. I hope we have given people hope through our story. I do believe that's what God revealed in the early days..let His light shine, people will watch how you respond to this! God has been right on time, not always mine but His!

Thanks for the prayers for my Nana. God took her home on August 5. We will miss her but she is healed! Please continue to pray for us in this time and for my Papa John who will learn to be alone after over 60 years with her.

Talk to ya soon!

Christy

2009-07-11T21:58:00.004-05:00

Just a quick note to say that things are well on the homefront. We went to a Nashville Sounds Baseball game last night. The boys really enjoyed it. They had a fireworks display after which is always cool. We got home late last night and the boys actually slept in this morning!! Yes!!! I love to be able to sleep in.
We have not set up MRI/CT scans yet but still praying about where we need to have them done. Please remember to continue to pray for us on this decision and all the others pertaining to future surgery on the palette,financial..all of the above. Also, for Hayden's right side to continue to gain strength. I, as his mom and a drill sergent would like to see more improvement. I guess what I'm saying is faster results. I have never been much of a patient person. You know what they say patience is a virtue! That my dear friends I'm still learning. Also, there are lots of days that Hayden resists me on doing what he needs to. I pray for patience but also tell him he has to want it. He says he does but I guess some days he's tired. I can't blame him. Please pray for me. I have had a lot of anxiety this week and the first part of the week did not sleep well at all. I was talking with a sweet friend this week who said that she could sense something was bothering me and she prayed a beautiful prayer. I felt God in those very moments wrapping His arms around me. I feel so blessed to have people in my life like her. The ironic thing was she said that she had been thinking about us and needed to call and then I called her. I say ironic not really it's a God thing!!!
Well I guess I will close for now.

Update on my Nana (my grandmother). They have confirmed it to be Lung Cancer. It is not in her bones. They are going to do further testing this week. Thanks to all for the prayers. My mom is there with her so also pray for all the caregivers for strength.

Christy

2009-07-01T10:22:00.002-05:00

Hello all!

I'm sorry that it has been a month since posting. Things have been pretty busy around here. We have been trying to catch up on appointments we've missed.( well child, teeth cleanings etc) Hayden is doing well, we are still trying to get his right side stronger. We still do physical therapy once a week. He is getting excited about going to school in August. We are trying to start planning what we need to do regarding his scans. Whether in Boston or here at Vanderbilt. Please continue to pray for us on decisions on this and getting him stronger.We need direction on surgery as well. This surgery would be the repair on his palette. (which would be done in Boston) I would want to go back to Boston because really Vandy had referred us there last year. Financially though we have to figure all this out. We will go to the ends of the earth for him if we have to.

He has gained weight since we have been home so this is WONDERFUL!! He's gained about 5 pounds since leaving Boston. Overall just happy to be home!!

As your praying for us, please add my Nana to the list. They have found a mass by her ribs; it has actually cracked a rib. They are trying to get prepared to do biopsy to find a name for this tumor. I know my whole family would appreciate you remembering her.

I'll post more later, I'll try not to wait so long!!!

Christy

2009-06-01T16:38:00.002-05:00

Hello all,
We have been home for a couple of weeks and trying to get adjusted to life. Unlike Mimi's last posting that things are quiet there, that is certainly NOT the case at this house!!!! Ha! Never a dull moment! Hayden is doing pretty good. We are doing exercises to work on his right side. I believe I see a difference in his hand. He has wanted to keep it pulled in(his fingers) and not stretch them out like when he is just at rest. He is using a sponge like thing that has some stiffness in it for resistance. So please be in prayer. We are stretching his legs as well, his hamstrings are very tight.
We went to the Nashville Sounds ballgame Friday night and the boys loved it, of course. We also went back to our church for the first time on Sunday. We were happy to be back and see some great friends.
Please continue to pray that as we prepare in a couple of months for this first scan out of Proton Therapy that they will not find ANY trace of the tumor. I know some of you have prayed that for a long time! We will give all the praise to God first and secondly for putting us in the right place for top of the line medical care. I have shared many times that I believe God has a huge plan for Hayden's life and I am privileged to call that little trooper my son! God gave me Jeremiah 29:11 "For I know the plans that I have for you"... I don't know the whole plan but what I have seen is a God who is merciful and above all FAITHFUL!!

Love you guys,
Christy

P.S. Mason is loving being home again as well.. we sure missed that little man!!

2009-05-24T17:36:00.003-05:00

Hello Everyone,
Hope you all are having a great Memorial weekend. We (Papa and Mimi) are home alone and it is very quiet around here. Dave, Christy and boys are visiting Dave's Mom in West TN. They (Christy and family) have not seen their Memaw since February and I know she is enjoying having all of her family for the weekend. Just wanted to let everyone in Lewisburg know where they were this morning for church since they did not get to come to First Baptist since they have been back from Boston because of being gone out of town. Hopefully things will settle down a bit and they can get in the routine of staying put for while, I know they are ready for some down time at home.

Hayden is still continueing to play and enjoy his cousins and brother. When I called to check on them at Memaw's Mason was a sleep on the swing and Hayden was riding around in the golf cart with Momma. Memaw has a lot of area to ride the golf cart around in the yard so I'm sure he is having fun. They also got to see the new addition to the Johnson family born while Hayden was in Boston baby Daniel was born to Bryan and Jenna Johnson ( Dave's nephew and wife) and Memaw's great grandson. What a wonderful blessing and gift from God this new little life to the family has been and will continue to be.

Mine and Christy's hearts have been heavy for little Josiah Herring, 4 yr old little boy who we have been praying for lost his battle with a very rare tumor on his (thalamus) in his brain area on May 20. Please pray for his family Josiah lost his battle after only being diagnosed for a little over 50 days with his tumor. I know the family is missing him terribly even though he is with "Jesus his best friend" Josiah would say. Words are inadequate for the pain you feel for the loss of a child and grandchild. Only God can still the pain and provide the peace as loving friends and family gather around you and lift you up in prayer and comfort you in this time of going thru the valley of loss of a child and grandchild. If you would like to send a card parents are Jason and Suzanne Herring at 2321 E. Faunhill Drive, Eagle, ID 83616. The funeral for Josiah was on Sat. May 23 Please lift this family up in your prayers.

Please continue to pray for the previous prayer requests on the last blog post. We again thank you for your faithfulnes to stay on this journey with us and for your prayers for Hayden and family. God CAN move mountains!!!!!!

Praising Him, Mimi

2009-05-19T17:59:00.003-05:00

Hello Everyone,
Just a quick update....Well Christy, Dave, Hayden and Mason are at home and they are so happy to be there with their own beds and all their stuff. Hayden and Mason both said they were glad to be home. We had a little family birthday celebration this past weekend and a yard sale that my entire street participates in since Saturday was the actual birthday for Hayden we needed to celebrate that also. So needless to say it was a busy time around here. Hayden and Mason had a good time seeing all the people coming up the driveway to check out the sale goods and even though it was cloudy we still had a good turn out for the sale.
Well it is Tuesday and very quiet around here at Mimi's and Papa's without our little sidekick. I miss them both so much, but glad they are getting to stay at home for a while. Hayden still has a ways to go physically so please don't let up on your prayers. We are still praying for a clean MRI with no trace of tumor anywhere and continued strenthening on his right side. Thank you all who continue to lift him and our family up in prayer. We are so grateful for such a caring family and friends who continue to hang in there with us through journey but are looking forward to good news in the future. God is our Rock and He continues to hold us up even when we think we cannot keep going. Please also continue to pray for Christy and Dave that they will be able to keep up the daily schedule with Hayden with physical therapy, speech therapy, tube feedings when Hayden does not want to eat by mouth and add a almost 3 year little brother Mason to the mix who also wants attention from Mom and Dad. (Dave is back at work so it will fall mostly on Christy during the day and she is having some swelling in her feet which is a little concerning since she has had a heart attack and is on a lot of meds for that) Well I'm going to close for now, thanks again for continueing on this journey with us.

Praising God for His Love, Mercy and Grace,
Mimi

2009-05-13T09:34:00.002-05:00

Hello Everyone,
Well we are finally at my house and Christy and Dave and family will go to their house today. Hayden had a great celebration at my family's house. When we pulled in to my sister's driveway all my family lined the driveway on both sides and cheered for Hayden shouting he's their hero and he is the man. Which make no mistake about it Hayden totally loved and felt very loved, as we all did, it was such a great homecoming for him and us.

Here are some ongoing prayer request:

1)Hayden's appliance or more surgery to fix palatel leak, parents make the right decision.
2)Safe travel for them home.
3)when MRI is done in about 3 months the tumor is gone.
4)Hayden's right side to strengthen
5)Hayden to gain more weight and more energy.

Thanks to all of you who continue to pray and join us in this journey and we are very thankful for all you do.

Praising Him for His faithfulness,
Mimi

2009-05-07T12:30:00.002-05:00

Hello everyone,
We have 1 more .....Praise God from whom all blessings flow!!!!!!!!!!!!!!!!!!!!!We are so thankful to all who have prayed us thru this am. Hayden is feeling better and we got thru this one and only one to go. Can you tell I am so proud of our little hero. Just wanted to update before we went out.

Must close for now he is hungry and again we must endure The old country buffet. Thanks for all the prayers.

Love yall
Mimi

2009-05-07T07:58:00.002-05:00

Hey everyone,
Just a quick prayer request Hayden is having a rough morning thus far. He has thrown up and is saying his head is hurting. We are down to 2 more days of treatments and we really want to finish this so please pray that his little tummy will settle down and his head will not hurt. He is resting right now and they called earlier this am and said they were running behind with the treatments so that might be a blessing so Hayden has more time to rest and sleep. Thank you for your on going prayers thus far. We are so thankful for all of you who are hanging in there with us so faithfully with your prayers for our precious angel.

Will let you know later today how it's going.........

Praising Him for His continued healing,
Mimi

4 more to go!!!

2009-05-04T20:26:00.003-05:00

Hip,Hip, Hooray!!! We are almost there! We are still on target to finish Friday. Hayden still has done well. However, over the weekend he developed some respiratory issues. I think it's allergies but he does have a lot of congestion. He has had no fever thank goodness. Please pray for him to feel better and not let anything get in our way for his finish. He is so excited!
I will close for now.

Christy

Also, one of the families that I asked for you all to pray for Caleb Gill. His family needs our prayers Caleb lost his battle with Cancer. Caleb is no longer suffering but his family is having a hard time with his death. Caleb was 7 years old.

6 more treatments!!!!!

2009-04-30T19:46:00.002-05:00

Hello everyone! We are on the homeward stretch of this radiation therapy. We are so excited we can hardly stand it. Please pray for Hayden to get through the rest of the time with no sickness or anything to hold us back from finishing. Hayden has done so well with all of this. Again we are so thankful and feel he deserves this with all the problems he has encountered with his surgeries. He has continued to amaze us with his resilience. He is excited to ring that bell on the last day of his treatment. There is a quote above it that reads- "Ring this bell three times well, its toll will clearly say my treatments are done my course has run and now I'm on my way!" How Awesome this will be. I will tear up I'm sure, but that's ok we deserve a little release.
Mason and Mimi,Papa and Jeremy are almost here in Boston to spend the last week with us. We can not wait!
Well, I will close for now...Thank you all for the vigilance you have shown in continuing to pray for us. We could not make it without all of you. A little shout out to Ms Sandra who also has commented on I think every blog to cheer us on! We love you!

Love to all,
Christy

11 treatments to go!!

2009-04-24T06:43:00.003-05:00

Hello all,
We are happy it's Friday and more importantly we are happy it is almost the end to Hayden's radiation therapy. After this mornings treatment the official count will be 10 more!! Yeah!
Hayden has done remarkably well on this stretch of the journey. We could not be more pleased except to find at the time of his next scan they say there are no traces of this nasty tumor! At that point you all may hear me scream from every part of the country that you guys are reading from!! LOL. Seriously though; if they told us that, I would fall on my knees and cry out to God thanking and praising Him for it! We have been blessed to meet some amazing people here, all who have impacted our lives forever. We have some new friends that live here but have family from our neck of the woods in Tennessee. We were actually friends with her brother and never had met her until we have gotten to Boston. We love you Pathak family and feel like it's the beginning of a great new lasting friendship. Also please be in prayer for Lori and Jim's dad as he is battling his own fight with cancer.
Thank you Ms. Florence for the package you sent the boys. They will have many hours of fun with all the goodies. Most importantly thank you from the bottom of our hearts for being one of the biggest prayer warriors we have ever known. (folks she goes to my Aunts church and has never met Hayden) It is so humbling to know how many people have come to know and pray for our little guy! Thanks to all of you out there!

Talk to ya soon!!
Christy

15 treatments to go!!

2009-04-19T17:40:00.002-05:00

Happy Sunday to everyone! We have had a good weekend. We were given Red Sox tickets for Friday's night game. We had a GREAT time, we had awesome seats. We sat right behind home plate, second row!! I know you baseball lovers are very jealous right now!! We feel lucky to have gotten to be that close. Hayden just had a blast. He also got a foul ball from batting practice before the game so he was beaming from ear to ear. Yesterday we just went down to Fanieul Hall and walked around watching the street performers. That's always a lot of fun.
Today our Sunday School (at home) class had a fish fry for Hayden. We appreciate everyone who took part in it! We love ya and we can't wait to be home!!
Please continue to pray for us, God has certainly heard the prayers of His people. Hayden has not had any of the problems with the radiation that they said he could. We are so very happy to see him getting stronger and having energy to get out and just be a little boy. Tuesday will be 6 weeks in so we are on the countdown for him to finish.

Talk to ya later,
Christy

16 treatments to go!!

2009-04-16T13:41:00.003-05:00

We have had another good week. Hayden seems to just be floating through his treatments..God is Good! We saw the ENT on Tuesday. He said that yes we would need a surgery to fix that in Hayden's mouth. He has seen people just have the appliance made and and do fine with that and never have the surgery. We are just trying to get Hayden out if this time of procedures so he can rest. We also have to see how much the insurance will pay. Dr. Hartnick said they are pricey and most insurances do not cover it. We would rather have an appliance made and that be it if Hayden can handle it and not gag to much with it in. So..please be in prayer about this. We want what is best for him. We are getting closer to being done..everyday Hayden is marking it off on the calender. Mom, Dad Mason and Jeremy are coming in a couple of weeks to stay the last week with us. Please pray for their safety.

I must close for now,
Christy

Also there are a couple of familes of children that have brain tumors that need our prayers. Both families are going through tough times. Their names are Caleb Gill and Josiah(I'm not sure of his last name).

19 Treatments to go..

2009-04-13T14:47:00.002-05:00

We had a good weekend, we hope you all did as well. We went to church with a family that their daughter is also having treatment. It was a very nice service, most of it was in Spanish. We wore headphones during the message so we could hear english. They did a dramatic presentation starting with the angel appearing to Mary saying she would be with child. It went on into Jesus as a young boy to healing the sick all the way into the death and resurrection. It was very beautiful to see and especially to hear all in Spanish.. I think Hayden enjoyed himself. Throughout the singing Hayden clapped the whole time even though he could not understand. I think it is beautiful to see people with so much passion for the Lord and uninhibited about it. We should be the same way, although sometimes we let what other people think determine how we act.
Hayden continues to do well. We are so pleased. We, are however getting homesick. We can't wait to see everyone and get back into a routine. We are very tired. It isn't so much physically but emotionally. Hayden having anesthia everyday and worrying about that to wishing we could all be together again. Thanks for all the prayers and your friendships, they mean so much!

Talk to you guys soon!

Christy

Counting Down..Halfway done!

2009-04-09T22:29:00.003-05:00

Hayden has had another good week. He has lost some of the weight that he gained and so they are starting the appetite stimulant back. I knew this would happen..so it is frustrating to go back and forth regarding his weight. The doctor will keep an eye on his mask to make sure that
it doesn't get to tight.
We got to go to a Red Sox game last night and Hayden had a blast! It was a late game and we got home around 11pm last night and he was ready to play baseball on the Wii!! I had to make him go to bed. It was and is really good to see him with so much energy! He pulls us along which is something we have longed for for a long time. God is working among us and our prayers are being answered. Thank you Jesus! Hayden also had an Easter Egg hunt today and after that we
went to watch some sailboats sailing around the Charles River. It was a beautiful day today,finally warmer!

We hope everyone has a great Easter!
Love to all,
Christy

It's a new week and closer to coming home!

2009-04-06T11:17:00.004-05:00

We have started another week in therapy and Hayden has done well. Mondays are somewhat nerve wracking because the port is accessed for the week. Hayden is getting so much better at it every week. He does wake up grumpy so it takes about an hour or hour in a half for him to be back to himself.
We had a great weekend. The Big Apple Circus was a lot of fun. We took pictures and put them on Facebook if any of you are on that. We spent some time with another family on Sunday. Their daughter is also having therapy(Mikaela). She is 3 so Hayden really doesn't play with her to much, which I wished he had some other kids his age. Today was supposed to be opening day for the Red Sox so Hayden was decked out in his jersey and hat. It is crazy here when it comes to baseball but I love it. All the nurses and other people were decked out as well! But...it's raining today so the game was canceled until tomorrow.

Well, I will close for now; Hayden has OT and an appointment with the pedi-oncologist this afternoon.

Christy

THE WEEKEND-YES!

2009-04-03T10:32:00.002-05:00

Hayden is done with treatments for this week. We are looking forward to the weekend. Although, it is raining here. We are going to the Big Apple Circus on Saturday. I'm sure we will have fun.
We are contininuing to be encouraged by how well Hayden is doing!!

Have a great weekend folks!

Christy

3 weeks into treatment!

2009-04-01T16:20:00.006-05:00

We have had a good week this week. Hayden continues to do well with his treatments. We were told today that we would have to stop the appetite stimulant because his mask is getting tight. The mask that I am speaking about is one that they specially make for each individual. It is made of a plastic that is warmed and molded to his face. It is used for stabilization while he is having treatment done. This stinks because we have wanted him to gain weight for so long and now we are being told he can't gain anymore for now. He also woke up yesterday with a bad rash on his arm and now it has spread all over his body. We went to the doctor and they feel it is from a virus of some sort. We did do blood work and a blood culture and that came back OK. The culture has not grown anything either. On Monday we also saw a speech therapist. She performed some tests and feels that Hayden will need surgery. The best way to describe it is that Hayden is like a person with a cleft palette. Most of you know that the last surgery in Little Rock they went through his mouth so the palette is not moving like it should which causes air to leak out of his nose. She did say that we could make a retainer of sorts that would help for the time being but surgery was necessary. Please be in prayer about this, Hayden has been shy about talking because he knows he sounds different. He has expressed that he does not want to be made fun of. We all know that kids can be cruel.

I will close for now..I have not posted everyday because thanfully things are going well with little change. However, we sure miss your comments and aren't sure how many are still following this. It really helps us to hear from you guys.
Also pray for Mason he has asked several times when we were picking him up to take him home. We are missing him terribly!!!

Christy

Hayden's Great!

2009-03-29T09:02:00.002-05:00

We had a visit with the Radiation Oncologist on Friday and he was impressed with how Hayden was doing. We reviewed the treatment plan for the treatments and looks like they have us slated for Hayden to have 43 treatments in all so, 3 more treatments than we thought. We are marking off the days on a calender so Hayden can see where we are and where we have come from. I asked about the mouth sores again because they say that they could happen around 3 to 4 wks in. He said let's not talk about that since he's doing so well so...we are pleased MAYBE they will not come and Hayden can soar through his treatments! We also saw the nutritionist and she was quite surprised at his appetite and he weighed in at a whopping 49 lbs!!! I have never seen him weigh that, whoohoo!!! =) She said that there was really no need to see her again unless things changed.
Enough about medical treatments....yesterday we went to the aquarium and and had a great time. Hayden did a lot of walking and did not really seem to tire! Thank you God! We watched the penguins and they were a lot of fun. We left there and walked to Faneuil Hall where we saw some street performers doing various things like dancing or magic tricks. We also saw Ben Franklin walking around and Hayden took a picture with him. We also ate lunch at a place there called Quincy's Market. This place has everything, lots of different vendors serving everything from pizza to seafood.
Well..I will close for now. Keep praying, they are being answered!

Christy

2009-03-26T18:07:00.002-05:00

Hayden is doing really good. The last few days he seems to be so full of energy and ready to eat!! Our prayers are being answered!!! He keeps us on our toes by saying "let's go, hurry up!" I pray this will only continue..Hayden deserves to have an easier time than he's had in the times past with setbacks. We also had physical therapy yesterday and she was very pleased with the progress in just a weeks time.
Today we went to a place to paint some pottery and we had a great time! After we were done he was ready to move on to the next "fun thing" as he says. We have to reel him back in and say we will have to find something free to do next!! He doesn't think things cost money and he thinks it grows on trees!! But what child doesn't!!
Thanks for continuing to lift us up, we greatly appreciate it!

Oh, by the way, we hear it has been warmer at home. Could you guys send it our way we're still freezing!!!! =)

Talk to ya later,
Christy

31 to go..

2009-03-23T20:12:00.002-05:00

Hayden has had a great couple of days. Today he said that the nurse needed to hurry up and come to get him for treatment so he could be done and go back to the apartment! We cracked up at that and we're very glad he felt this way instead of feeling anxious! Thanks for the prayers on this, they have been answered!! He still continues to be hungry and want to eat, Yeah!!!!
The docs still say that in a couple of weeks he would start to have mouth sores and not want to eat by mouth. We are praying that this will not be the case. We still believe that God can change that. He has gained a pound this week!!! So we hope to not take a step forward and 2 back!!

I will post more later!

Our Address here is 1 Emerson Place
Boston, MA 02114
Apt-2P

Christy

32 to go

2009-03-21T17:52:00.002-05:00

Happy Saturday!
We had a great Friday, Hayden had a good day. It was toy day. I'm not sure I have told you but every Friday they get to pick out a toy. They also get to pick the sibling out something from another closet. So..Mason is getting a toy pile of his own!! Hayden has also wanted to eat more so we are very pleased with the appetite stimulant. We are set for treatment next week at 10 AM except for 10:30 on Thursday.
Please continue to pray for us as he continues his treatment. I pray that we have no setbacks from this, I hope that he doesn't get any mouth sores and change his appetite again.
We have had fun getting to know the other families staying in the same apartment complex as we are. Hayden has met some little friends even though he is the oldest. The bad part is that Anna finished her trx last wed. and John will finish his next week. (which we are very happy they are finishing their time here Hayden just won't have play mates) After that we will not have any kids his age as we know right now. There is a family from Haiti coming but that will pose a language barrier and then a couple of 2 year old so....he won't have any friends to play with.

I hope you guys have a great rest of the weekend and I will post more later.

Christy

33 to go!

2009-03-19T20:50:00.002-05:00

Hayden has had a good last part of the week. Today especially he seemed less anxious! Thank God! He has not complained of his stomach hurting either. The appetite stimulant also seems to be working, he has had more food by mouth and it hasn't been a struggle!! Yeah!! Thanks for all your prayers God has answered them!!! Please continue to pray that he will not have too many side effects from this and will continue to do well.

We have had some fun this week by going to the Boston Public Library and checking out books. Also, the old part of the library is BEAUTIFUL! I will try to post some pics of it this weekend!

Also a special prayer request about a little boy from Fayetteville, TN that I've been praying for. He has a brain tumor (different diagnosis from us). He is not doing well and from his blog it has spread to other spots! I don't know this family personally but feel a connection because we are bound together by an illness. Pray for healing, pray for strength!

Talk to ya soon,
Christy

36 and counting

2009-03-16T22:18:00.002-05:00

Hayden had a good day today. He did not have any nausea or vomiting. Yeah!!! We had a busy day with Proton Therapy this morning then on to see the Ped Oncologist to finally an OT appt. We will have therapy everyday this week at 10:30. Please continue to be in prayer for us.
Also, we have started Hayden on an appetite stimulant so he will hopefully start to feel hungrier and maybe even gain some weight.
I will post again soon! I hope you guys have a good week!

Christy

37 Treatments to go

2009-03-13T13:32:00.002-05:00

Happy Friday to all!

Well today has gone ok but started off a little rocky. We had a pretty decent night last night but this morning he woke up vomiting. He did this several times. We were able to still receive treatment. I'm not sure really what to make of it. It is really early to have the radiation do this to him but I guess it could. We are going to see the oncology doc on Monday after trx. She wants to make sure we do not lose ground with Hayden's nutrition. Please pray for his appetite to increase and less vomiting. Hayden can not afford to lose any weight! I feel some of this may be brought on by nerves which is to be expected. I'm hoping once we get into the groove of things we will have smooth sailing.
We appreciate every prayer and every kind word spoken. This has been a long journey and at times we are so weary that you don't think you can go another step. I am so thankful God knows and is there with open arms to pick us up. I have often asked God why us; but why not us. We have through all of this seen God's hand so many times. His hand of mercy, His hand of love. I believe he sometimes has to break us in order to mold the very being he intended us to be. I have certainly grown through all of this. For those of you who know me well, really well (like family) be patient with me because God isn't finished yet! And...I don't think He's finished performing the miracles in Hayden's life either!!! The best is yet to come when Hayden can just be a little boy again. I truly believe it!
Please be in prayer for our niece and nephew(Brian and Kim) they lost their mom this week. Our hearts are saddened and it is hard because we could not be there with them through this...

Love ya,
Christy

38 Treatments to go

2009-03-12T18:51:00.004-05:00

Day 2 went ok. Hayden was a little scared still today,but he did fine. He does not want to have the sedation. It makes him feel dizzy at first before he goes under and that makes him upset. I feel helpless, I try to comfort and tell him how great he's doing and to not be afraid. But...I'm afraid too. I only hope I'm convincing enough for him to help him feel safe.

Last night after I posted Hayden did get sick and so we called the Dr. to let her know, she told us to try to get some more fluids in for the day. Nutrition would take a back seat to fluids. We got some in and then at midnight he said I'm hungry and wanted McDonalds. So, needless to say David went out and got it. He ate 9 nuggets and some fries. We were very glad he ate even though it was a late night! Hey what's sleep anyways..It's overrated!! Ha!

Well one more treatment for this week and we will be off for the weekend. Yeah! Oh by the way they have brought on board a medication that helps with nausea and vomiting, so we will use this everyday.

Please keep praying for us!

My sister Brooke is flying out tomorrow to stay the week with us. Please pray for her safe journey.

Christy

Treament Today

2009-03-11T17:15:00.005-05:00

Hello all,

Hayden had his first radiation treatment today. He did well, but the rest of the afternoon he has not wanted to eat or really do anything. I hope that this is not a sign of things to come. We have just fed him through his G-tube.
We will continue on starting tomorrow at 11:00 and then 10:30 on Friday. We will find out our schedule for the next week on Friday. This morning Hayden was a little nervous but after he woke up he asked what exactly did they do? I told him they gave him his therapy and he said that it was not too bad..We are very thankful that he feels this way and only hope that he will continue to. We spoke with Dr. regarding the scans that we've had done and he told us that what was left of the tumor are the portions where it originated. He said that there was not reason to do anymore surgery because it would be like "cherry picking"because it is in several areas. So we are thankful that we can begin.
As I got up this morning for my quiet time, of course I was anxious, and I read my devotional so I would like to share it with you.....The first words were "Walk by faith, and not by sight. As you take steps faith, depending on Me, I will show you how much I can do for you. If you live your life to safely. you will never know the thrill of seeing me work through you. When I gave you My Spirit, I empowered you to live beyond your natural ability and strength. That is why it is wrong to measure your energy level against the challenges ahead of you. The issue is not your strength but Mine, which is limitless. By walking close to me, you can accomplish My purposes in My strength." 2 Corinthians 5:7 Wow, what can I say I needed that. Even though it is not easy I will walk by faith because He has not let me down.....

Love to all,
Christy

Happy Saturday

2009-03-07T09:58:00.002-06:00

Good Morning,

I am sorry that I have not posted for a couple of days. We spoke to the nurse with the Proton Center yesterday and we are on target to begin therapy next Wed at 10:30. We have still not spoken directly with Dr. regarding the scans but everything looks like we are on track for beginning. We feel God has answered so many prayers that have gone up not just from our family but so many of you. I feel so good right now(although I still want to hear more information from the Dr.) I feel that we are finally in a place where we are seeing the light at the end of this long tunnel. I have over the last mos have felt more anxiety than I have ever felt in my life. I know that I am weak and only through God I am strong! I have felt attacked by the devil for so long but I know that he delights in trying to steal your faith. I am delighted that God has never left my side even when I try to make it on my own.
We will post more as we know it, but things look great! I pray now that we will go through this radiation and Hayden continues to get stronger and stronger.

Love to you guys,
Christy

MRI went well

2009-03-04T20:37:00.002-06:00

Hi all,

Everything went well with the MRI today and all we know is that Dr. Liebsch said that he thought that pictures went well and there were no surprises. He did not elaborate on that but we are going to trust that that was good news. I know you guys are continuing to pray for us...Thank you! We are missing Mason so much too so please pray for us to be able to start therapy so we can all be together again!

Love you guys,
Christy

MRI Tommorow

2009-03-03T12:25:00.003-06:00

Hey to everyone,
Just a quick update, we will have a MRI tomm. We Have to be there at 1:15 and they will start at 2:15. Please be in prayer for Hayden, around noon tomm we have to put this numbing cream over his Porta-Cath. This is the first time they will access the Porta-cath. So..I hope Hayden does ok and is not to afraid of this. They do have to puncture the skin with the needle but Hayden is a thin child so he just has a small layer of tissue to go through. When they begin radiation therapy they will access this Port on Monday and put a bandage over the needle every day until Friday. At that time they will take it out over the weekend. He will not be able to get this wet through the week so...needless to say bathing will be a challenge.
The rest of the week will be appt on Thursday for a place to stay where they will have other families here for treatment. This will be an apartment so we will have a kitchen to cook in, Yeah!! On Friday we will meet with a Nutritionist and OT for there help.
I will post tomm after we get home from MRI. Hayden is doing well. He does however think that anytime we go somewhere that he needs a toy!! We are having to say NO which is hard.

Praying for healing,
Christy

PS -Yes , we got snow and Hayden was very excited!!

2009-02-27T20:35:00.002-06:00

Hello Everyone,
I talked to Christy and she said that the appt. with Dr. Liebsch went well but they did not get much info from him. He likes to get all the informational facts together before he speaks to anyone about next step in treatment. He wanted to get the MRI so he could compare the two MRI and CT scan. Dr. Liebsch did say he got good pictures so we just need to be patient. Again here we are in limbo playing the waiting game again. And again I hear God say be still and know I am God. Let me handle this.......

So that's all the info I have for you. Hope you all have a great weekend and if anything changes I will let you know. Please keep praying.

Still Praising Him,
Mimi

2009-02-26T21:36:00.003-06:00

Hello Family and Friends,
Here's some news, first let me say I'm sorry for the meltdown on last post. I was feeling a little down because everything seems to move in slow motion. ( That is the control issue I'm still having. Please forgive me) I just want to fix everything as a Mom and a Mimi but God is still on His throne and He doesn't need my help for sure.

Now on for the news...today Hayden had his CT scan and labs and did very well with all. When he finished with all the tests his Daddy had a big old Hershey candy bar waiting for him. Then he went to Old Country Buffet and ate supper because it was about 5:30 PM and he was hungry then after he finished there he had to stop at McDonalds and get nuggets. I was glad to hear he was that hungry. Christy said Dr. Liebsch said he was pleased with all the pictures he got from scans. They will meet with Dr. Liebsch on Friday, he is going to call with a time. So pray for good reports on scans (brain and spine). We are so very thankful for God's protection for Hayden thru all he has been thru this far.

Mason is adjusting to being with Mimi and Papa but he does ask for Mom and Dad and Hayden and when they will be coming here to get him. HOORAH so far we have been without the old PACIFIER for 3 days and 18 hours, please pray we will continue to do well with this issue. He really only asks for it at nap and bedtime at night. I hated to take it away since he is still adjusting to being without his brother and Mom and Dad, but he threw it down and I told him the cat ate it since she was sitting right there ( Lord forgive me for that ) where he threw the pacifier. He said he didn't want Precious(Cat) to eat his paci. LOL. So needless to say we had to go buy a teddy bear to take paci's place. (Great Grandma's idea).

I'm going to close for now, I will try to update with more news on Friday. Please keep praying, we love and appreciate all you for hanging in here with us and lifting us up daily. Thanks again.

Still Praising Him,
Mimi

PS: Christy will be having a birthday on Sunday, March 1

2009-02-25T21:31:00.002-06:00

Hello Everyone,
Just wanted to give an update. Hayden is going for labs on Thurs. at 8:00 AM. Then they meet with case worker after that and then around 1:00 they will do a CT scan. I'm not sure what labs they are doing but I do know he will have to get stuck again because they can't use the port for another day or so for healing purposes for port.

Thank you all for the prayers and words of encouragements. We continue to ask you to lift Hayden and family up for good report regarding tumor and that he will tolerate all that he is having to endure with labs and scans and doing w/o nourishment for all those hours. God continues to bless.

Will write more on Thurs. after all is done.....

Going thru the fire and looking for His light that is always there to get us thru.

Still Praising Him,
Mimi

Update

2009-02-24T10:09:00.002-06:00

Hello everyone,
Quick update, just talked to Christy and shesaid Hayden got his port inserted, and G-tubed changed out and is in the recovery room. She said the surgeon said all went well and Hayden did fine and she will call me when they get back to the hotel. So thanks for praying us through this procedure. Will update more when I get more info. Not sure when MRI will be at this point.

Still Praising Him for His faithfulness,
Mimi

Procedure Tommorow

2009-02-23T08:37:00.002-06:00

Hey all, we just got word that we need to be there in the morning for Hayden to have a Porta-cath in. We have to be there at 7:30 am tomm. This catheter will enable them to access for IVs and not have to stick him daily. They are also going to change his mickey button out at this time as well. (We have kept this in so he could have extra nourishment)Please pray for procedure to go smoothly and that Hayden would start to gain weight. He will tolerate the radiation therapy if he has extra weight on. As with anytime we are very nervous about him having to be sedated.
Please continue praying for us, we are going out today to do some more site seeing.

Thank you to Jenna for changing the blog up for us, it look great!!! Love ya!

Talk to ya soon,
Christy

Hi from Boston Mass!

2009-02-22T17:15:00.002-06:00

Well, we have had a good weekend, we went to the discovery museum today and experienced the subways. Hayden really loved riding the subway! It's raining here,can you believe this?? We came here expecting and wanting to see the snow and it's just north of us. Figures!!!...
When we were riding the subway I kept telling Hayden to not touch to much (trying to keep him well) I said I don't want you to get sick! He said Mom I'm already sick. I said what do you mean? He said I have a tumor, I'm already sick... I had to really fight back the tears, you always wonder how much they understand. It has almost been 3 years since he was diagnosed and there are some things that happen like today that feel like I'm hearing it for the first time! It makes me physically feel sick. I am still praying for complete healing and I believe God has blessed us but I am ready for Hayden to be rid of this tumor and just be free to be a little boy! Please continue to lift us up.
We don't have any plans for this upcoming week so I will keep you posted as soon as I know.

Thanks to all our friends and family for everything, we love ya!! Also the precious people we don't even know that are following this blog, thanks for the sweet comments you've made..

God Bless,
Christy

2009-02-20T20:47:00.002-06:00

Hello everyone,
Just a quick note...Christy, Dave and Hayden met with Dr. Liebsch and oncologist Dr today and they both agreed that Hayden looks good. His weight, gait, weakness in R arm and hand was not a concern for them, they said he is just a tall, lanky, boy. The oncologist Dr. will be his physician if he needs one while he is in Boston because Dr. Liebsch is proton beam Dr. They are working on getting the MRI set up and will call Christy when it is scheduled which they hope will be on Monday but not sure at this point. Once we get the results of that (MRI) we will know more. Hayden will be getting speech, and physical therapy while he is in Boston which will be great, he needs help with both.

Hayden said it snowed a little in Boston this AM and can't wait to make a snow man.

Mason continues to have some separation issues but is doing well considering the circumstances. God is good.....

Please continue to pray for no more surgery and that tumor will be gone or unchanged from last MRI. We are praising and trusting God for more of His amazing love, mercy and grace as we await His answers to us. The unknowing is a killer sometimes we want answers like yesterday and He says to be still and know I am God. ( I am so trying not to be a control freak LOL) Those of you who know me should be laughing about now. Will close for now...Talk to ya later.

Thank you for walking thru this with us and your wonderful prayers.

Praising Him for His grace and loving me anyways,
Mimi

2009-02-19T18:59:00.002-06:00

Hello Family and Friends,
Well it has been a long time on the road for part of the Johnson family but thanks be to God, He has delivered them in Boston to the Hampton Inn and for that we are grateful. They did run into sleet and rain and had a flat tire but other than that the trip was good. When they got to the hotel they were surprised to get into their room to find they actually were put into a suite of double rooms which means two bedrooms, one with king size bed and one with 2 queen beds and two bath rooms which will make getting ready a little easier. Then they received a basket of goodies (snacks) and fridge full of water and they had a Boston Red Socks hat and two baseball jerseys which was very, very nice and thoughtful for Hayden. God is blessing through this journey of uncertainty.

Now onto the day to come schedule: On Friday they have a meeting with Dr. Liebsch and a pediatric oncologist at 10:00 AM. At that time we should find out the rest of the schedule for upcoming days. So I guess prayer requests for today are thanksgiving for safe delivery from their travel to visit my family (Hayden's great grandparents and cousins and aunts and uncles he has not seen in over a year in Virginia) and to the hotel in Boston. Please pray also for calmness and peace for Hayden and Mom and Dad. Direction for Drs. and good report from MRI with no more surgery, that they will be able to get rid of the rest of this tumor with radiation with no set backs.

We continue to see God's hand in all this with how He has worked out all the details in His time. We just need to hang onto His promise that He will continue to complete the work He has started with us and Hayden and some days that is easier said than done.

A footnote about Mason he is having some anxiety moments at bedtime for Momma, Daddy and brother so please pray he will adjust to being w/o his Mommie and Daddy and his favorite brother Hayden as he says and being at Mimi and Papa's house for a while. Other wise he is doing well still a wild, wide open 2 1/2 year old that has a mind of his own sometimes and we have a battle of the wills on some issues. I had forgotten how funny a preschooler can be, he says some of the funniest things. Ok I must close for now, I will try to update every day again with updates as I get them so please keep us in your prayers. Thanks for all the all your words of encouragement and prayers. They continue to be a blessing to us and get us through some tough days.

Still praising Him,
Mimi

Getting Ready for Boston

2009-02-03T15:30:00.002-06:00

Hey everyone, I wanted to give a quick update on our plans. we got the call yesterday from Boston. They want us there on Feb. 17. we will meet with Dr. Liebsch on Wed and Thurs. to do MRI and make other plans for treatment.
Please pray for several things: 1- that we will not have to be told Hayden needs more surgery and we can proceed with the radiation therapy.
2-We will have safe travels since we have decided to drive to Boston.
3- That our little Mason that we are leaving behind with Mimi and Papa will do okay and we will do okay. I'm missing him already just thinking about it.
4- That we will find a place to stay that we can afford. Everything that I've looked at has been very expensive!

I think this is all for now, we will update blog so you can keep up with us as much as possible.

Keep praying please, there have been several people that have said that they think one day when they look for this tumor it will be gone . The Doctors we have been working with are all gifts from God but there is only One Great Physician!!

Waiting....

2009-01-29T09:51:00.002-06:00

Hello all,

I am finally getting a few moments to post. We all are doing very well. Hayden is having for the most part very good days. He has some where he is tired and ill but I'm sure this is expected.
We have not had much interaction with Boston in the last few weeks at all. I have gotten the information that the Dr. wanted me to write down, which was my view in the 7 weeks that we were in Arkansas. So now we wait!! I have never been very good at waiting, just one of the many things God is teaching me. I do know that we have prayed for there to be no more surgery and to hopefully move on to the radiation. When we got the call from Dr. Liebsch from Boston just before Christmas I do feel a different peace about this. I believe that we will go and get this radiation over with and move on to some happier times. I am anxious about the radiation because of Hayden having to be sedated daily. Please pray for this, that he will have no problems with this.
I hope that you will join me in praying that Mason is OK with all the changes that he will also endure while we are gone. He likes being with the grandparents but it is not home and he knows this.. It is also hard as a mom to him trying to balance things for a child that has a sibling that is sick.
Thanks so much for keeping up with us this whole time, we truly are forever grateful! I believe in the truest since of the word that we have seen miracles in Hayden's life and the many lives he has impacted! For this I can only stand in Awe and wait expectantly on what God is revealing all around us.

Regards,
Christy

2009-01-20T19:31:00.002-06:00

Hello Everyone,
Sorry it has been a while since last posting. We have been out of town at a music conference and then to visit my family in Virginia. While we were there Christy had to make a trip to ER for some tests thinking it might be her heart again but thanks be to God it was not her heart. She did go to gastro Dr. on Monday and had a scope done and it revealed that she has an inflamed lining of her esophagous(sp) and stomach. So she has been doubling up on her meds so we need prayer for that issue. Then my Mom is back in the hospital in Virginia with bronchitus (sp) along with other breathing problems but she is on the road to recovery also. Hayden is doing well and loving being at home. We still have not received word from Drs. about going to Boston but since Christy has not been feeling well, I guess it is good that she can get to feeling better before the trip. Here are some prayer requests we would like some help with:

*Christy's health will continue to improve and rest of family will stay well.

*My Mom will improve and be home soon.

*When Hayden has the MRI the tumor will be gone or be unchanged from last MRI. and he will not have to have another operation. They will be able to proceed with radiation.

* Hayden will tolerate the sedation and radiation w/o any set backs.
God will use the radiation to heal Hayden from this tumor.

*Direction about whether Mason and Mimi will go to Boston or stay at Mimi and Papa's house.
Which means he will not see Mom and Dad and brother for 8 weeks and they will not be able to see him.

*Direction for Drs. and nurses for Hayden's care and a place for family to stay for 8 weeks and transportation whether to drive to Boston or fly. If they drive it will take 22 hours to Boston and then after putting Hayden through radiation for 8 weeks another 22 hours home. But if they don't drive they will have to rent car to get them back and forth to hospital which is more expense. So need direction for what to do in that regard.

Thanks for all of you who have continued to call and send cards and most of all for all the prayers for our little man and family as we continue on our journey. We love and appreciate you all. God continues to show us His love, mercy and grace and for this we are truly grateful.

Still praising Him for his goodness,
Mimi

2009-01-03T09:47:00.004-06:00

Hello Everyone,
Happy New Year to all!! Just wanted to update you all about news we received from Lorie at Dr. Al-Mefty's office. She talked with Dr. Al Mefty who is out of the country until Friday of next week and he asked if Christy had gotten all the plans together (flight info, etc) to go to Boston. Christy did not want to do anything until she got some answers to questions she has for Dr. Al-Mefty. She did however get to talk to Dr. Liebsch regarding some questions she/we had on why no surgery, etc. Any ways long story short they will be headed to Boston for another MRI (last one was done in November before leaving Little Rock after surgery and there was still some swelling there) and if all looks like well they will begin radiation therapy on Hayden's tumor. If they see something they can't do with radiation then we will have to return to Little Rock for more surgery then back to Boston for radiation. But at this point they believe they can do radiation to remove rest of tumor. So PRAISE GOD for all He is doing to heal Hayden w/o more surgery and please continue to pray that that will be the case (no more surgery). Without talking to Dr. Al-Mefty and getting questions answered by him we are moving forward with guarded optimism with the above info but also with thankfulness that God is in control and He sees the big picture of what is needed for Hayden. So we would like to send these prayer requests out to you all:

1) Safe trip to Boston. All who are involved in Hayden's behalf (Dr's, nurses, parents) will make the right decisions about what to do next.
2) When the Boston MRI is done they(Dr. Liebsch & Assoc) will be able to see anything they need to to make the right decision about radiation or more surgery and then radiation (we would prefer no surgery but whatever is best for Hayden is what we want to see done)
3) The transition from life at home and life in Boston for 8 weeks will go smoothly(travel arrangements, housing, transportation etc. plus whether Mimi and brother Mason need to go or stay at Mimi's. If Mimi and Mason stay home that Mason will do well with rest of family away from him for 8 weeks and Mommy, Daddy and Hayden will do well being away from Mason.
4) That Hayden will tolerate the radiation well with no problems and the radiation will hit the tumor and totally get rid of the tumor and no other areas of the brain stem will be compromised (nerves to areas of the body for just about everything are located in this delicate area of the stem).
5) Hayden will have to be sedated to have the radiation treatments which will be every day for 15-20 minutes a day for 8 weeks. (Sedation every day which is scary to us) So please pray that he will be able to do well with this also. He gets very, very agitated after he has been sedated and nothing seems to help with this issue.)

This is not pertaining to Hayden's tumor but this lady has been such a prayer warrior for him her name is Ms Florence and she goes to Osborne Bapt. Church in NC and she is having some health issues and not doing well so please include her in your prayer time that God would heal her body.

Well these are the prayers requests for now subject to change with a phone call from a Drs office.
Thank you all for following our journey and being so faithful to pray for our family and watching how God is hearing and answering these prayers. We are so blessed each time we look at the comments from each one of you. You'll never know how much we appreciate getting the words of encouragement, prayers and support to our family.

Must close for now.......

Thanking God for His goodness,
Mimi

2008-12-31T20:32:00.003-06:00

Hello Friends and Family,

First let me apologize for not posting as I had originally said in the previous blog...now let me say to you we had a great time of celebrating Christmas with our family all together but we did miss the Great Grandparents and Aunts and Uncles, cousins etc that all live in Va. We hope you all had a Merry Christmas.

We are about to close out 2008 in approximately 2hrs and 20 minutes and as I look back at the last year and a half I see how God has worked and I stand in awe of His love, mercy and grace and blessings through sorrow and joy. First the death of Dave's Dad, then Christy's heart attack, then Brooke being attacked by someone in her apartment which sent her to hospital for emergency surgery, the death of Dave's brother in May, the trip to Boston and surgery on Hayden at Little Rock. It has certainly been an eventful time in our families lives. I have said all this to say God has been so faithful to us even in the times of travel through the valleys and the unknowing of what the future holds. There is a song by Leona Lewis called footprints on her spirit cd and it really has spoken to our hearts through all this trying time of valley walking. One of the nurses at Little Rock Childrens hospital told us about the song, I do not listen to secular music much and she is a secular music artist but this song is a good one. It talks about how He promises us that He is always there and when your heart is filled with sorrow and despair He will carry us through when you need a friend you'll find His footprints in the sand. Great song!!!

Now let me give you and update on Hayden and some prayer requests: Hayden is doing well with his eating but is having a little problem sometimes when he drinks any liquid it sometimes comes out his nose which is a little disturbing to me but Dr. office at Vanderbilt said this was normal being the surgery he had and where they had to go through the throat area. But anyways pray that this does not cause a problem with chronic sinus infections, etc. and it will heal enough that this will no longer be happening

Now about future surgery: Christy said Dr. Levtch(sp) at hospital in Boston called and said he had talked to Dr. Al Mefty and seen MRI's and for her to please get Hayden registered at Boston for his radiation and to "stay tuned" and I ask what did that mean and she said she would need to talk to Dr. Al Mefty and find out so she has a call in to Al Mefty's office and this being a holiday has not gotten a call back as of yet. So if he is going to Boston we feel like there may not have to be another surgery and that Dr. Al Mefty and Dr. Levtch feel they can get rid of the remainder of tumor with radiation which will be a great answer to prayer. So please pray we will get answers to these questions soon and also that he will be healed without more surgery and radiation will go smoothly. Also please pray Hayden will tolerate the radiation w/o set backs and it will remove the rest of tumor and keep it gone. I will let you all know when we know about what's next.....

Sorry this is such a long post on this blog but that's what I get for not doing this for a while....please forgive me I will try to do better. Thank you all for your prayers, love and support for Hayden and family we are so blessed to have you precious people standing in the gap lifting your prayers up daily for our beautiful family. We pray for you all a very Happy, Safe and Healthy New Year and God's richest blessings for the New Year of 2009.

P.S....Today is Dave's birthday. HAPPY BIRTHDAY !!!!!!!!!!! AND my Mom and Dad's anniversary HAPPY ANNIVERSARY!!! WE LOVE YOU!

Still Praising Him for His love, Mercy, Grace and faithfulness,
Mime

After Turkey Day

2008-12-01T08:39:00.002-06:00

Hello All,
Trust you all had a great Thanksgiving Day and returned to your homes safely and turkey stuffed. We (Johnson and Chitwood family) went to West Tn to Dave's Mom's house and Dave and Jeremy spent the weekend hunting. On Thanksgiving evening Papa, Brooke, Christy, Dave and Mason and Hayden went to see that super dog movie Bolt and the old ladies stayed at home and cooked and had some quiet time while they were gone. (We celebrated our Thanksgiving on Friday evening). We had a very nice time at Memaw's (Dave' Mom) and came home on Saturday. Christy, Dave and boys came home on Sat. eve also and when they came out of Henry Horton park they hit a deer but thank God it only hurt the car and not any injuries to anyone inside. Christy said it could have been a lot worse because it was and embankment on both sides of the road and they could have rolled the car but God sent his angels to take care of them.
I believe Hayden enjoyed his thanksgiving turkey but he missed seeing his cousins because they all have been sick and Kim (Landon, Kinley, and Carley's Mom) did not want to bring any germs for Hayden to catch, and for that we we are thankful. We sent some dough ornaments for them to paint to put on their tree, because we didn't get to do that at Memaw's. Hayden is continueing to get stronger each day and is really enjoying being at home with brother. They are very active boys!!!!!

I have missed my blogging because where Dave's Mom lives is out in the country and there are no towers around we even have trouble using our cell phones they don't pick up inside her house. I must close for now and get my Christmas stuff out and up and work on the Christmas play for church. I will try to keep you updated at least a couple of times a week.

Here are some prayer requests: Hayden will continue to get stronger each day and put some much needed weight on, he is very thin right now. Pray that he will stay well and not catch any kind of flu that is going around right now, because his immune system is weak from surgery.
Pray for healing but if he has to have future surgery that all will go well. Pray for Mom and Dad and Mason that they will get some rest and stay well. Thanks again for all you prayer warriors that lift us up daily.

Still Praising Him for His goodness and blessings,
Mimi

Thanksgiving

2008-11-25T11:52:00.002-06:00

Hello Everyone,
Well turkey day is right around the corner.....It is our prayer that you all have a very Happy, healthy and blessed Thanksgiving. We are so very blessed for our family and friends and God's healing hand on Hayden and we would just like to let you all know how much we appreciate your prayers this year for our family as we traveled on our journey. We see God's hand everytime we look at Hayden and how far he has come in the healing process from the surgery. Hayden is able to enjoy eating by mouth again and that is truly a great blessing. We truly want to give God the glory for all HE has done. We pray that you all have a very nice Thanksgiving and that you feel as blessed as we do to have a loving family. Some here close by to share with, some many miles away that we can only share the holiday with by phone, and some in heaven, and all have helped mold and shape our lives from their witness and make us into what we are today. God bless you all and have a great Thanksgiving!!!!!!

Still Praising Him for His Grace,
Mimi

Praises-Thursday

2008-11-20T20:28:00.002-06:00

Hello Everyone,
Well the week is almost over and we are getting some rest finally. Hayden has had a good week at home. Christy and Dave took him to Vanderbilt today for a check on his incision and Praise God Dr. Netterville said all looked good and cleared Hayden for eating soft foods by mouth. Hooray!!!!!!! He gets to enjoy his turkey dinner next week. After they got the news they had to take him to Golden Corral in Franklin because that is his favorite and Christy said he got Mac and Cheese and mashed potatoes and after he ate some he looked at Christy and said "Mom this is so goooooood". That just makes me want to cry because I know how hard it has been for him not to eat his favorite foods, even when we tried to hide our eating from him. But God is always faithful in His time to complete his work.

We are so very grateful to God for his infinite healing and continued blessings on our family. Will close for now........

Still Praising Him,
Mimi

Monday PM

2008-11-17T15:23:00.002-06:00

Hello everyone,
Well Mimi is at home alone and it is very quiet here. Sometimes we need that so we can listen to what God is telling us to do.

Spoke with Christy today and she said Hayden has had a good day he and brother have been sleeping in on mornings until 9:00 Am which is a rarity in the Johnson house, they are usually up and going around 7:00 AM. So needless to say maybe Mom is getting some rest now I hope. We are so thankful that we are at home and able to sleep in our own beds even for a little while. We are continueing to pray that the next time Hayden goes for MRI the tumor will be gone. We are still waiting to here from Dr. Suen's office about appt to Vanderbilt to check incision this week so please continue to pray that incision is healing well and Hayden will be able to eat by mouth again this week. It will be easier on Mom and Dad because it is hard for them to feed Mason and sit down together as a family to eat their cooked meals in front of Hayden and him not to get anything by mouth, even though they feed Hayden first via G tube.

This partial tour of duty has ended for now and I pray it will not begin again unless it is the radiation part and that Hayden will not have to go thru another surgery but only God has control over that and in His time we will know, and if He chooses to heal through no surgery or with surgery we will be thankful for His healing blessing for our little man we have trusted Him for His healing thus far and will continue to trus Him. Will close for now......

Thanks for all the comments, prayers, support and love for our family, we are so thankful for each one of you that have been on this journey with us and lifting us up before the throne of grace.

Still Praising Him for His Faithfulness,
Mimi

Sat. Morn

2008-11-15T09:44:00.002-06:00

Hello Everyone,
Well guess what? I'm finally HOME!!!!!! Yes and guess everyone is here under one roof for a change Brooke, Jeremy, Dave, Christy and boys, and of course Papa. It was great to sleep in my own bed for a change.

Hayden made the trip well and we will go to my church tonight for a gospel singing. So we will see how that goes. Christy talked to Dr. Suen and he will try to get appt. with ENT in Vanderbilt next week. Pray incision is closing well and that they will release him to eat his favorite foods by mouth also. Will blog later.......

Thanks again for all the prayers.....

Still Praising Him for his Faithfulness,
Mimi

Hallelujah!!!

2008-11-11T09:46:00.002-06:00

Hallelujah!!!!!!!!!!
We are out of here folks......Hayden got a good report today. Dr. Suen said Hayden's incision looks great he did not run the light down his throat but he was pleased with what he could see. He sutured it pretty tight he said. Anyways his trach site looks good, tongue looks good and throat looks good. Yeh!!!!!!!!

We are packing so I must close for now. Thanks for all the prayers.

Still Praising Him for Answered Prayer,
Love Ya,
Mimi

Mon. Eve.

2008-11-10T22:34:00.002-06:00

Hello All,
We are as busy as bees around here getting everything packed up preparing to go to Dave's Mom's for the day on Tues after Dr. Suen sees Hayden at 9:00 AM. Then we will travel to Lewisburg, Tn (home for the Johnsons Hayden,Mason, Christy, Dave) then Mimi will travel home to Ga. ASAP. Please pray that all is healing correctly so we can leave here because it would be a major set back if we cannot get out of here for a while. We are all excited about going home. Hayden has had a pretty good day today and his tongue is still swollen and we are still playing the turtle game and I know that is getting old for him. But if we don't it might not go well on Tues. Dr. Suen might want us to stay until swelling is down.

We will be out of pocket for a few days, I'm not sure my computer will pick up at Dave's Moms because sometimes our cell phones don't work out there. She lives out in the country away from everything so I'm not sure if I can get on to the internet. If not please understand that we are not stopping posting on the blog it will just be a few days. I hope to post one more time on Tues. AM after we find out from Dr. if all is well so I will let you know.

Thanks again for all the prayers.

Still Praising Him for His Blessings,
Mimi

Hoorah!!!!!

2008-11-09T22:20:00.002-06:00

Hello Everyone,
God is good!!!! Well everyone is here at the hotel under one roof for now. Hayden has been pretty fussy today but I believe it is because of anesthesia getting out of system. He has his trach out now and is doing ok w/o. We have appt with Dr. Suen on Tues at 9:00 AM and are praying that incision is healing, tongue is swollen again and is outside of mouth for now but he can pull it back in when he wants too. So we again are playing the turtle game. So please pray for incision and tongue swelling to heal.

The plans for now are to spend one night with Dave's Mom in West Tn and then go to Lewisburg after that if all goes well on Tues. Tues is also Tommy's birthday which is Dave's brother who passed away this summer. So it will be good for Dave to be with his Mom on that day. Then hopefully Mimi will get to go home.....Yeh!!!!!!!!It will be nice to sleep in my bed again, and I'm sure Christy and Dave would like to get back to their routine with their family and not have THE MOTHER/MOTHER IN LAW THERE. Enough is enough already, it's like having Nanny 911 around 24/7 HAHA :) :)

I cannot say enough thank yous to everyone who has continued to comment, pray, send cards, goodies and support for our family during this tour of duty with the tumor. We are so very grateful to all of you who continue to lift us up daily in prayer. I do not know how people function with out the friends, family and a loving church family who are always there for you no matter what the circumstances. God has been faithful and so have you all and for that we are truly blessed. Thanks again.......Will talk on Monday after we see how Hayden's day goes.

Still Praising Him,
Mimi

Hallelujah!!!

2008-11-09T09:36:00.002-06:00

YEH!!!!!!!

And Glory to God in the Highest for all He continues to do!!!!!

Just phoned Christy and Hayden has trach out and walking the halls. Dr. Suen has been in and signed off on him. Dr. Suen's office is closed on Tues. but he is going to come in long enough to see Hayden and then we can get out of Little Rock. YEH!!!!!! The nurse just walked in with dismissal paperwork. SOOOOOO will blog later tonight after I see our little hero!

Please continue to pray for healing of incision so we can spend holidays at home, but most importantly Hayden will soon be able to eat by mouth and no more tumor.

Still Praising Him for HIS love, mercy and Grace!!!!
Mimi

Sat. Eve

2008-11-08T22:21:00.002-06:00

Hello Everyone,
Here's an updated from Sat. surgery. Dr. Suen did surgery with Hayden and his report was that the incision was open where he saw at the appt. and he said there was good blood flow and that tissue looked good with no infection but he did clear off margins and contoured Hayden's tongue meaning he took some excess tissue from center of tongue where Hayden had damaged by biting and also took off areas that were sloughing off anyways. He said there might be some swelling but it should be minimal. Dr. Suen will check Hayden on Sunday and then if all looks good will take out trach at that time. Then if all is well they can come back to hotel on Sunday. Dr. Suen will check Hayden again first part of week and we should be able to come back home Tn and Ga by middle or end of week. As for MRI Dr. El Babba called and said remnant of tumor is still there but is unchanged from surgery so that means we can be signed off by Dr. Al Mefty orders to return for next surgery after holidays. PRAISE GOD!!!!

So as for praises we are sooooo thankful for good report today. As for MRI well we were a little disappointed but at the same time God has been faithful as always and for that we are truly thankful......

Now as for prayers: Please continue to pray for continued healing of incision site and that Hayden will soon get to eat by mouth. Dr. Suen said it would be at least 3 weeks for food but as early as Monday possibly for water by mouth. Another praise!!!!

Well Mason is touching every key he can get his hands on and it is hard to type and have thoughts with the terminator at the keyboard. Must close for now. Thanks again for all the prayers.

Still Praising Him for His Goodness,
Mimi

Friday Eve

2008-11-07T22:42:00.002-06:00

Hello Everyone,
Well Mason is a sleep and Hayden, Christy and Dave are at the hospital. I have a praise Hayden's day went very well so far. He was told about the stay in hospital and what they were going to do and he actually did very well with the info. Meaning not as much of a problem as we expected he would do.(Meltdown) We played and had fun and then Mimi and Mason and Cindy and Ronnie left the hospital. Now comes the hard part, they will put an IV in tonight and as of right now (10:58 PM) it has not been done so he is still a happy camper. But hopefully he will do well. God answered our pray about his being very anxious about going to drs., hospital etc. so I'm going to trust Him with the IV drama. We are on the schedule for 8:00am on Sat. 10/8 and we would very much appreciate your prayers again. For no leakage from previous surgery and that Dr. Suen is able to repair the tissue from the last tumor surgery where it has not healed and tongue and they both will heal correctly and swiftly, so Hayden will be able to eat by mouth again. We also will be getting the trach out after surgery plus another MRI for Dr. AL Mefty to make sure the piece of tumor that is remaining has not changed from post surgery MRI.

Thanks again for all the prayers being lifted for our little man and family. And many thanks to the people from Lewisburg Community and Church family for all the goodies sent via Ronnie and Cindy to us. Cindy and Ronnie have been a God send, and I could not have been able to be with Hayden as much if they had not been here to give us a hand with little Mason (aka terminator) We love you all and appreciate all you do for us.......

Still Praising Him with a grateful heart,
Mimi

Thurs Eve

2008-11-06T19:55:00.002-06:00

Hello everyone,
Update on Thursday visit with Dr. El Babba. We saw the Dr. today after a long wait and He said he talked with Dr. Suen regarding Sat. surgery. Dr. El Babba said he would be available on Sat. also if he was needed in OR in the case of Cerebral leakage, lumbar drain etc. which we hope is not the scenario. Dr. El Babba talked with Dr. Al Mefty in regards to going home and Dr. Al Mefty said he wanted an MRI also on Sat. after surgery while Hayden is still sedated. IF the MRI shows no change in the remaining tumor growth then Dr. Al Mefty will allow us to come home. And we can wait until after the first of 2009 to do next surgery and let us get thru holidays and allow Hayden to heal. So please pray for all to go well on Saturday. Hayden will also get the trach out. After the surgery Dr. Suen said Hayden would then stay overnight at hospital and come back to hotel for few days to allow time to make sure incision is healing properly and then we should be able to come home to Lewisburg and GA.

Hayden was already a basket case today just going to Dr. El Babba's office so having to be put back in the hospital overnight (Friday night) for Sat. surgery is really going to be tough on everyone especially Hayden. So again please pray.......

I guess that is all the news I have for you right now. We are very excited to get the news of a possible jail break from here at least until the first of the year. I must close for now Mason is wanting to play on computer and he is not allowed any where close to the keyboard.

Still Praising Him,
Mimi

Update-Wed eve

2008-11-05T22:57:00.002-06:00

Hello Everyone,
Just wanted to update you on todays happenings. We were able to see Dr. Suen today and he did a light down Hayden's nose and looked at the incision said it is not closing on its own. So that being said Hayden will go in to the hospital on Friday of this week and have surgery on Sat. Morning at 8:00. This will take about 1 and half hours and Dr. Suen will clean up the margins of original closing of tumor removal surgery incision and take a closer look underneath the first layer to make sure there is good blood supply on the lower levels of tissue and make sure that is has healed then he will close the opening with sutures. He will then take off the remaining sloughing of the tongue and clean his tongue off . Hayden will be in hospital overnight and they will take the trach out on Sunday. Hopefully he will get to come out of the hospital then back to the hotel. Then maybe we will get to leave Little Rock and be home (Lewisburg and GA) for the holidays.

Hayden has gone all day with his tongue in his mouth....Ain't God GOOD!!Very little swelling. Dr Suen was very surprised to see Hayden with his tongue in his mouth. He was very pleased.
We were also very pleased to see him keep it in all day w/o having to play the turtle game. We on the otherhand are very weary of another surgery for our little man as we know it is to help him. But it is very hard to explain to a 5 yr old that he has to have another surgery done after he has worked so hard to get his tongue in and keep it there. He will not be able to eat by mouth until this is done because of infection problems with site still open. So here are some prayer requests:

1)Hayden will not be so nervous about going into hospital for another surgery. God will calm his spirit.
2)This surgery will clear up and heal w/o problems or set backs
3)We will be able to get trach out and Hayden will be able to get swallow study done and be able to eat by mouth again.

Needless to say we have had the air let out of our balloons again hearing that the incision is not healed. It seems this tour of duty is never going to end for our little hero. He has been such a trooper thru it all. God continues to show us in baby steps what we are to do next and we are trying to be patient but it seems so hard to watch Hayden have to go thru more surgery when he has worked so hard at getting better. It breaks your heart to know we are going to have to tell him on Friday he will have to go back for more. Please pray that we will be able to reasure him and he will be able to be at peace with going back for another round.

Some dear sweet friends from Lewisburg came to visit us today for a few days and brought us some home cooked meals. Everyone got to enjoy it except Hayden. But they also brought all kinds of prizes for Mason and Hayden. So for Hayden he could care less about eating he was to busy playing. We are so grateful for family and friends who minister to us in such special ways.
God is using you to show us how much He loves us. So thanks for being a blessing to us by allowing God to use you. We love you all.

Still Praising Him,
Mimi

Tues Eve

2008-11-04T22:59:00.002-06:00

Hello everyone,
This day has been quite eventful with the election outcome. Needless to say we did not get to vote.

Hayden continues to progress well with swelling of his tongue. He is keeping it in better today than he has been.We visited the Little Rock Zoo today and everyone enjoyed seeing the animals. Some days I feel I am living in the zoo.....HAHA!!!We did on the other hand hear from Dr. El Baba (who is Dr. Al-Mefty's neuro at Children's) and he is seeing Hayden and Mom and Dad on Thurs at 11:30. He is also setting up appt. with Dr. of ENT who closed incision from brain surgery to check and see if it is healing correctly. Dr. El Baba is also setting up a swallow test. He is trying to it get set up for Wed. or Thurs. so Hayden can eat real food soon we hope if he proves he is swallowing well. We also want to get trach out.So please pray that will go well.Then possibly we will get to leave here and go home for a while real soon. Dr. Al-Mefty will be out of the country for the month of November so we are not planning the surgery for November at least. But who knows until we talk to the Dr. El Baba on Thursday and he talks to Dr. Al-Mefty by phone we will not get decision on future surgery.

For now we would just like to get a good report regarding incision healing correctly and swallowing ok and getting the trach out would be a much answered prayer. We are looking forward to going home for a while.

We are so thankful for God's blessings thus far in the healing process and continue to look to Him for complete healing for Hayden. Thanks again for all the comments, prayers and goodies for Hayden and family.

PS> TO: Allison, Reese and Fuller and Family-- Hayden & Mason loved the video and prizes.....

Still Praising Him for His goodness,
Mimi

Monday moments

2008-11-03T22:27:00.005-06:00

Hello everyone,
Just wanted to let everyone know that we were not able to see the Dr. today. We waited until lunch because they were suppose to call and let us know about appt and when we did not receive a call we called them. The nurse said the Dr. was out today and that she would speak to him on Tues. Am first thing and then let us know about appt., etc. Christy explained that we wanted to get the ball rolling on a swallow study and incision check, etc. The nurse said she would explain that to Dr. so we will see. It is hurry up and wait around here even with a great hospital.

Hayden continues to improve with keeping tongue in his mouth. We have to keep after him by saying turtle, turtle so he pulls his tongue back in and gives us a glare that only he and brother can give. We know he is getting tired of us saying it but we just want him better so we can get out of here. We were so bored we went to Target just to get out of here for a while and that was ok until Mason decided he was going to drive the buggy......BIG MISTAKE......He is so head strong. He has definately hit the terrible two's big time. As if the buggy driving was not enough he decided to climb under the clothes rack while Mom was on the phone and Mimi was trying to look at some PJ's he does some disgusting smelling business in his diaper. People are looking at me and trying to steer clear around me wandering what that smell is because they don't see Mason which was quite embarrasing. So we then get him out from under the clothes rack and go change him and he is not happy with getting out from under the clothes rack. So needless to say it was quite a shopping experience. Oh well......life with a preschooler..(Thought you all might need a good chuckle.)

Well we are all worn out and it is time for bed so I must close for now.I will let you know about Dr. visit on Tues.

Thanks for all the prayers. Also Jenna thanks for making the blog a little more personal and colorful. We love you.

Still Praising Him,
Mimi

Sunday Eve

2008-11-02T21:10:00.004-06:00

Hello Family and Friends,
Well another day at this motel has come and gone and I am posting to keep from eating.HaHa!!
I am so ready to get out of here. Hayden has been the same as myself, he is sooooooo ready also.
Hopefully on Monday we will get some kind of news about future.

Prayer requests as follows:
1) Swelling will continue to subside in tongue
2)Dr office will call early to get them in to see him on Monday early.
3)They will get good news about healing and will be able to get swallow study done asap and everything will be ok with swallowing and get trach tube out and Hayden will again be able to eat regular food w/o problems
4)Make the right decision about future surgery etc.
5)We get to get out of Little Rock until after the holidays if it does not cause any risk factors with Hayden.

Hayden has had a pretty good day again today. He still gets pooped out easily and you can see that he clearly wants to keep going but his little body says I need rest. So needless to say we are all being couch potatoes so that means Mimi and Mason are climbing the walls to get outdoors which we do when it is pretty and warm. Hayden, Daddy and I actually took a walk today and picked up acorns and pretty colored leaves. While Mason and Mommy took their baths.

Hayden's tongue is still swollen but he can a least pull it inside his mouth and we can see his teeth which is great because it was so big he was not able to pull it in his mouth as of end of last week.

God is faithful!!!!We just have to be patient and that in itself is very hard when you want yesterday, but we are learning through this tour of duty.

We miss you all and thank you for all the kind comments, cards and prizes (surprises) for the boys. Again thank you for all the prayers.......

Still Praising Him for His Love, Mercy and Amazing Grace,
Mimi

Saturday Evening Post

2008-11-01T21:12:00.004-05:00

Happy Saturday guys!
It has been a great day here in this Little Rock Hotel. Hayden has felt good all day today. He has had much more energy it seems. The swelling in his tongue has gone down considerably today. He has worked very hard keeping it in. We are playing a little game to keep the turtle in. The turtle being his tongue. We had gotten some guards like football players wear but he has thrown a fit about wearing them so we said he had to pull it in on his own so..hence the game we are playing. This has to be his idea or he's not going to do it. I DO NOT know where he has gotten being so hard headed from!!! HA! I must confess for those of you all that don't know me I am pretty stubborn so he gets it naturally!!

i am ready to come home!!!!!!!!!!!! from hayden

He says he loves you guys!! He's already tired of typing.

We will spend the rest of the weekend relaxing.
Thanks again for all the prayers being lifted up. I have truly seen God's hand in all this and how it has touched so many peoples lives. I will say it has not always been fast enough or easy enough at times. But..like I told Hayden we are a team and ANYTHING worth having takes work and perseverance. God has taken care of us and He who began a good work will be faithful to complete it!!!

Love Ya,
Christy

Friday Eve.

2008-10-31T23:15:00.003-05:00

Hello Friends and Family,
Well another late night of blogging and just wanted to let you all know that Hayden got his stitches out from around his tummy tube and got an adjustment on his headgear for tongue swelling. Although it was a busy day Hayden has had a good one.

Papa is now back in GA and missing his boys and we miss him already, but he is so ready to get back to work. We hope you all enjoyed the pictures we sent of our tour of duty mission site. We hope to send more later. I just wanted to let you all know we still as of this day do not know about future surgery. Will keep you posted. Hayden is suppose to get a call Monday from neuro surgeon's office to let us know when we have an appt. to see him for f/u. Hopefully we will get more insight for future of where we will be. Please pray we and the Drs. make the right decision regarding this surgery since the holidays are upon us.

Thanks again for all the prayers.........

Still Praising Him for His Love, Mercy and Grace,
Mimi

From Hayden and Mimi

2008-10-30T22:56:00.003-05:00

Hello everyone,
This note if from Hayden: I love you all very much. Thank you for praying.

Love,
Hayden

Hello all,
I started posting and Hayden came over and wanted to post something also. He continues to work on pulling his tongue in and keeping it in for small periods of time. When he went to orthodontist today they made a headgear piece of equipment to wear to help pull tongue in and keep it there without him having to work so hard. We are trying to help those muscles gain more strength to keep his tongue inside of mouth.

It is 11:07 pm and here I am posting again late at night it seems there are not enough hours in the day to get it all done. Well Papa has been here for a while and he will be leaving on Friday early so he can get back to work. We appreciate our church family to allow him the time to be with us at this very trying time with our family. God has allowed us to go through this for a reason and we feel we have been blessed by being half way through this tour of duty and Hayden is continueing to improve with his tongue issue. We are very thankful for all He is doing to heal Hayden. God has allowed us to minister to other parents, and nurses and staff while we have been here and many have told us that they have been touched by Hayden's sweet spirit, and I believe God is using this for His glory. Thank you for all ministering to us and lifting us up with your prayers. We are so grateful for our church families and friends who continue to hang in there with us.

Dave's nephew and his wife have come to visit us for the day and it is good to see some familar faces. They are getting ready to go to their room so I will close for now so we can have prayer.
Please pray for safe travel for return home for Jena and Brian their earthly home in Nashville and Terry in Georgia. Until next time.....

We are Still Praising Him,
Mimi and Hayden

Tues-eve

2008-10-28T23:43:00.003-05:00

Hello everyone,
We have enjoyed a day of just not doing anything and still it is late at night to be posting. Everyone is still up and going strong except Mimi and she is fading fast. Mason is like the energizer bunny, he just keeps on going. Hayden is also getting a little tired but he still does not want to go to bed, but it is time.

Hayden and Mom and Dad are going to the Orthodontist on Wed sometime to get some kind of guard to help keep tongue in mouth and protect it from the teeth, which we hope will strengthen up his muscles in the tongue to be able to pull it back in so we can get him to swallowing and eating with us and that trach out. We will see how that goes. So please pray.

We are enjoying all being together for a little while. Will keep in touch on Wed to let you know of any other appts. that will be done this week. Thanks again for all the comments and prayers. We love to receive greetings from home, we are really missing everyone.

Still praising Him for His continued goodness,
Mimi

At Hotel

2008-10-27T21:55:00.003-05:00

Hello Family and Friends,

Yes we are finally at the hotel. Hayden was soooooooo happy to leave the hospital I believe he would have walked if the car was not starting. (we are having some battery problems) Any ways they got to hotel and he and brother have just been loving on each other all day. One would pick on the other and each just grinning and laughing and we could hardly hold back the tears watching them. They love each other so which is as is should be. Well about Hayden, Mom and Dad are doing their trach care, feedings, mouth care and now we are all trying to wind down from a busy day. Hayden has had a good day today and we are looking forward to more days like this one.

Mason is having a melt down and the men are watching the ball game so you know what that means. I must close for now. Thanks again for all your prayers.

Still Praising Him,
Mimi

Yeh!!!!!! Hurray!!!!

2008-10-26T21:52:00.004-05:00

Hello family and friends,
Wanted to let you all know that as of this pm Hayden we hope is going to get to leave hospital on Monday. We are all looking forward to a little time away, but I believe Hayden is the most excited about it coming to the hotel. Even if we can not come to Tn home this will have to do until Dr. Al-Mefty says it will be more surgery or God chooses to heal the rest and when they do another MRI it will all be gone. We continue to see His hand in all that has transpired in the last 5 weeks even though it on some days feels like it is never ending with problems. We know God has a plan and He will reveal it in His time.

Hayden has had a good day today. He seems to get really tired by the middle of the afternoon. That sounds like Mimi these days. I have been over joyed to see him progress with his walking and playing so well and his right side to have good strength in it so far. His tongue is still outside his mouth but hopefully when he gets out of the hospital he will be more relaxed and it will continue to go down and then he will be able to eat, drink and be a little more happy. Mom and Dad will have a great responsibility tending to feedings and trach care and g-tube care. So please pray that all will go well without problems. We all are so ready to be through with our home away from home (hotel), we miss our humble homes in Tn and Ga and most of all our church, families and friends.

We again want to tell you all how much it has meant to us receiving the cards, comments, and support you have shown to us through this journey. It has on many occassions lifted us out of some major down days. We love you and appreciated you all. We do not know what will transpire in the days to come as to when the next surgery will take place but we will let you know via blog. We are still going to post on daily basis hopefully so please continue to send comments. Thanks again.

Still Praising Him for His faithfulness,
Mimi

from Hayden

2008-10-25T14:15:00.005-05:00

. hi everyone,

This is HAyden! !mimi and mama are letting me write. I am feeling better today. I might get to go to the hotel and I am very happy about that good news. Thanks for all prayers for me.

I love all of you,

Hayden

Hello everyone,

Hayden wanted to write on the computer today and let everyone know how much he appreciated all the cards and goodies being sent to him in the mail. As of today we are scheduled to leave here (hospital) and stay at the hotel on Monday. So pray that Mom and Dad will learn all that needs to be learned in regards to trach cpr and care and feedings with the machines and extra nourishment that has to be mixed. I will be talking to ya later today I h0pe.Must close for now Hayden wants to watch sprout on the computer.

Still praising Him,

Mimi

Making Progress

2008-10-24T22:30:00.002-05:00

Good evening everyone.

Hayden had a really good day today. He had some visitors, Memaw, cousin Kim and her husband Allen. His face lit up seeing someone different besides us and 50 million doctors, nurses, PT etc. that come through the door to his room. He's really smart though he will want to go walking to gift shop or play areas just about all the time, I think I've figured him out, he thinks if I'm out of my room they can't find me to do anything else to me. Smart kid thank you very much he is my child. HAHA!!! :) Papa and Daddy are staying with him tonight so I can try to rest. We hope that in a few days they will discharge us to a hotel. WE are BEYOND ready to be home but the hotel will have to do. At least we can all be together. Mason said all day today I miss Hayden! Pray that we will all be together soon. Pray for his tongue to continue to improve. We have a dentist involved and we talked about his tongue being pretty stretched and out of the mouth for so long, so he suggested putting a compression dressing around under his chin and wrap around his head. We will try to put the tongue inside his mouth as much as possible and this dressing on to help his jaw and tongue relax. Pray that this works. Hayden has been a real champ but he is ready for this to be over.

I, as Mom have had better days this week. I'm very thankful. This is in no way about me but Hayden. I love him so much that when your children hurt you hurt. The bad part is I have not been able to fix this. God certainly is teaching me patience and that I'm not in control! I once again just need to let GOD be GOD and as for me just keep on loving and nurturing Hayden. God is certainly in the details but I usually give it up to Him only to quickly take it back. Well....we will keep you guys posted. Thank you does not seem adequate enough for every prayer, card and monetary support that we've had but truly we say thanks!! Keep loving on us, it does get awfully lonely here......

Christy

Update-Thursday night

2008-10-23T23:35:00.002-05:00

Hello Family and Friends,
I know it has been a long day waiting on an update from us but I have just now had the time to give it to you. Here's the scoop......Hayden did well with the surgery today and the ENT dr looked at the site where the brain tumor was removed and it has not changed from last time. Not any better or not any worse those were the words I believed he quoted. So Hayden now has tummy tube for feedings and no more nose tube in and incision has not healed as of yet and still has trach. Tongue is still swollen out side of mouth and is very uncomfortable for him. So please continue to pray for the swelling to go down and incision from tumor removal to heal correctly with no infections.

Dave's Mom came over today with his neice and her husband so that was a great surprise for all of us, and she brought us a home cooked meal which are few and far between here because of schedules and lack of cook ware. But we need to loose a few pounds anyways. HaHa!!!!!

We continue to see God's hand in Hayden's healing and we are looking forward to seeing the light at the end of this tunnel and the end of this tour of duty with this chordoma. We are so thankful for family and friends who lift us up daily for peace and comfort from your prayers on our behalf. Thank you for being there for us.

Still praising Him for His faithfulness,
Mimi

Hello

2008-10-23T09:40:00.002-05:00

Hello Friends and Family,
Just wanted to let you know that the G tube was suppose to be put in on Wed. but was not because Hayden had a lot of secretions and was coughing a lot yesterday. I did not get home from hospital until 11:30 pm last night and I'm sorry but I was to tired to post. But the tube was to be put in at 7:30 am this morning but as of yet because of an emergency surgery has been put off for 2 more hours. Hayden got some rest last night and I believe Mom and Dad did also. Please pray that all goes well this am. I'm here at the motel with Mason, he just woke up and is ill this morning so I will post later and let all know about g=tube surgery and incision update as they are suppose to look at that while he is under sedation to see if it is closing now.

Thanks for all the prayers.

Still Praising Him for His goodness,
Mimi

Hello from Little Rock

2008-10-21T17:24:00.003-05:00

Hello Family and Friends,
Just a short update Hayden had a good night last night and Mom and Dad I think got some much needed rest. Mimi will trade off with Mom tonight and stay at the hospital with Hayden and Dad and Mom and Mason will be at the hotel. We are facing another procedure on Wed. to put G tube in tummy so please pray it will go well and Hayden will be able to tolerate the feedings thru this tube. It is administered a little differently from the nose tummy tube.

Hayden does not want to stay in the hospital room he is so ready to be out of that place. We are expecting to maybe get to get out of hospital for a few days to let swelling of tongue go down and then we will have to be back for the next surgery. Most likely family will have to stay close by because of trach and feeding tube plus the incision not healing so it's doubtful that we will leave Little Rock. But at least it will be a change for Mom and Dad and Hayden from beeping machines and being awakened by nurses and techs for bp's and medication being taken. It will be a little scary coming out with a trach and feeding tube because we've never had to deal with a trach before now. (Cleaning etc. not to mention blockages that can occur) But life is about always learning something new and different.

Papa and Jeremy got back here on Sunday and we were sure glad to have some re-enforcements to help with Mason. He seems to be tired of listening to Mimi all the time. Which means he has been a typical 2 yr. old. Wide open, mouthy, and very strong willed not to mention hard headed. When Papa came to the hospital he brought prizes for Hayden and Mason from Ms. Sandra and I wish you could have seen the smiles he had opening all of the prizes Ms. Sandra sent. He loves getting mail and that always puts smiles on his face. Thanks Ms. Sandra.

Well I must close for now and get back to hospital. Will post later.
God has been so faithful through out this ordeal and we are very thankful for His blessings, for rest and healing. We are so grateful to all who are praying and phone calls, cards, comments and support. Thanks again.

Still praising Him for His goodness,
Mimi

Update-Monday-10-20

2008-10-20T22:21:00.003-05:00

Hello All,
We have completed the surgery on the tongue today about 1:30 PM. Hayden seems to be doing well at this point. Dr. Sun who did the closing of the brain tumor removal also did the surgery today. While he was doing surgery today he looked at the incision from the previous surgery in Hayden's mouth and saw that it still is not healing like it should because of the feeding tube rubbing on the back of throat and also he said Hayden needed more nourishment for healing and he has had to be on steroids for swelling of tongue which is not helping the situation. So we will be having another surgery for a feeding tube on Wed. This one will be put in tummy. So needless to say we are very concerned about now having a trach and g tube for feeding. Hayden has been a superman thru all of this so far but every time the door opens to his room he tenses up big time. I am sending some more prayer requests:

1)Tongue will heal with no problems.
2)Mom and Dad, Hayden will get some rest.
3)Surgery for feeding tube will go well with no problems
4)Direction for future surgery of total removal and stablelization for Drs and Mom and Dad.

Some of you have had problems posting and I hope this will go through so you will know what is going on with us here in Little Rock. I'm sorry for the problem with the site. Hope this will fix problem. Thanks for all the prayers and cards and financial support. Please continue with your comments we love reading them because they make us feel like you're here with us giving special hugs. So thanks again......

Still praising Him,
Mimi

2008-10-18T23:14:00.002-05:00

Technical difficulties with my last post. It's late; will try again later.

2008-10-18T14:36:00.002-05:00

Hey everyone, it's Christy. It's Saturday afternoon and I am back at the hospital watching my precious baby take a nap. I went to the hotel last night with Mason for some much needed rest and some special time with Mason. This is the first night since Hayden has been in the hospital

Sleepless in Little Rock

2008-10-16T17:02:00.002-05:00

Hello All,
Well I finally got to get back to the blog and update you all. I'm sure you all have heard of Sleepless in Seattle well this is called sleepless in Little Rock. Daddy has taken a break with Mason and gone to the hotel to eat and sleep- a nap anyways. Mom and Hayden are a sleep and I figured I would keep watch and let Mom get some much needed rest while I update the blog.

Hayden's tongue continues to be a problem and he grows very frustrated when trying to talk to tell us about what he wants etc. He had PT this am and he did absolutely wonderful. Playing basketball, walking, painting, hockey etc. So we are excited about that, now is we can just get this swelling to go down and be able to see if swallowing is ok so he can get trach out and eat real food. He ask for ice cream earlier and it just broke my heart ( an Moms) to watch Mom have to tell him no. Morale is getting a little low as we are approaching a 1 month stint with this tour of duty with this surgery knowing that we have to return one more time and not sure of what the future holds. I feel God has given me a peace about the outcome.At times when I try to relay to Mom who is really struggleing watching her baby struggle so, I allow satan to get me down to and so I am weak relaying God's faithfulness and His already abundant healing thus far and His promise to complete what He has started.

So here are prayer concerns:
1) Hayden's tongue-no more swelling
2)Rest and peace for Mom and Dad, Hayden and family
3) Give us calmness to try and figure out what Hayden is trying to tell us because of swelling in tongue and clear vision so we will know w/o frustrating him even more because we cannot understand speech.
4)All blood work comes back clear with no problems, no more set backs. (I hate to ask you to pray for this but it has become a problem) Hayden will urinate(peepee) on a regular basis. He seems to be holding this and not wanting to go and there is not infection there so we need water works to happen.
5) Hayden's energy level to come up a little, he seems really tired.
6) Upcoming surgery. Wisdom for parents and Drs.

To our family and friends, thank you again for the many prayers being lifted up on Hayden's behalf. I would however like to add one more prayer request. My Mom (Betty Cart has been in hospital with pneumonia and is now at home) pray for continued healing of her lungs and energy to return.

We love you all,

Still Praising Him for His Faithfulness,
Mime

Endless days.

2008-10-15T20:14:00.002-05:00

Oh how Christy and I and most definitely Hayden long to be out of this place. It just seems never ending and frustrating with all the tongue swelling, needle sticks, suctioning, communication barrier with Hayden, upcoming surgery, and the daily routine that goes on with a patient. There is a little humor, last night Hayden tried so hard not to get a urinary cath that he pointed to some shampoo and wanted me to put it in the jug to make it looked like he did it, unfortunately it didn't work. I'm tired of being here but that is my selfishness coming out, then I look across the room and see a little boy having to go through all the physical pain and that humbles me to no end. I'm so proud of Hayden, he has endured all this pain like a champ, and I know God has a special plan in his life and this journey that we are on. What also humbles me is all the support that we have ,I couldn't imagine going through this alone without God and his people, this I'm forever thankful. All I can say is that God is good all the time.

May God Bless You All,
David

Update 10/14/08

2008-10-14T21:50:00.002-05:00

Hello everyone! I wanted to give an update with the info. that I have thus far. Hayden has had a rough day. He is not producing fluid so they put in another IV. They are also giving him Lasik to produce some fluids. Hayden is definitely having another surgery as early as next week to try to remove the rest of the tumor. He will also have the stabilization surgery at the same time. The dr.'s from Arkansas and Boston have made these decisions feeling it's in Hayden's best interest. They do not feel the proton beam is useful at this point. Our family is being tested yet again. Please pray for Hayden. Also pray that our family can continue to handle the obstacles that we face daily.

Thank you for all the the continued support and prayers!!

Sincerely,
Aunt B

Update-Monday

2008-10-13T09:23:00.003-05:00

Hi Folks,

Just wanted to update you on progress.....Hayden is really doing well over all. Last night Mimi stayed at hospital because Hayden had a big piece of tissue from tongue that was gaging him and we had to call ENT Dr. to come and remove this hunk of tisssue which he did. Hayden is having some major problems with medication withdrawals so I would like to give you some more prayer requests:

1)Pray that the Drs. can get meds regulated so Hayden can rest and not have the highs and lows and major meltdowns from withdrawals.
2)Hayden's tongue is still a problem.. Please pray that the swelling will subside and we will soon be able to get a swallow study done and all will be well and then we can get this trach out..
3)Christy and Dave spoke with Dr. Al-Mefty and he is going to talk with the Boston Dr. and see if they would be able to use the proton beam to get the rest of the tumor out. Which would mean another trip to Boston soon but it would also mean no more surgerys. Dr. Al-Mefty did not think that they needed to do stablelization sugery because he did not compromise any of the bone with the last surgery. But if he has to go back in and remove the rest of tumor he would have to stablelize the neck. So pray that the Drs will have clear vision on next step and we have a peace about the outcome whether it be surgery or proton beam.
4) Pray for rest for all....we are getting very tired of some of these things we are watching our little man go through.

But Praise God we are seeing Hayden in other ways like walking to progress in a positive way. God's always faithful to give us blessings when we feel low and He shows us His goodness when we trust Him with everything that is precious to us. And being the control freak I am God is teaching me that He and only He is in control.

Must close for now our little man is moving around again. Thanks again for all your prayers and word of encouragement and financial support. We love you all for taking time to pray and go on this roller coaster ride of a journey with us supporting us with your love. Thanks again.

Still Praising Him,
Mimi

Oh My Goodness

2008-10-12T00:55:00.003-05:00

I just had to be the first to break the news!!! Hallelujah!!!! Hayden walked!!! He was outside with MiMi and he pointed at his feet. Mom and the nurses finally figured out he wanted to walk. I'm so proud of my Superman!!! He got right out of that chair with support of his Mimi and a nurse. I also got to speak with him on the phone and tell him I love him. Well Mimi was overwhelmed with Hayden so I didn't get much medical update. I'm sure someone will post that later!!

Thanks for the continued support and keep the prayers coming!!!!

Oh Happy Day,
Aunt B

Improving day by day.

2008-10-10T12:09:00.002-05:00

Today is day 10 post surgery and Hayden is improving day by day. We are going to be moved out of the picu to a regular room. Today they changed his trach this is a standard procedure 5 days post the first trach, they do this to keep from forming a pocket around the first trach. We are hoping to hear from Dr. Al-Mefty today to get an idea when he wants to do the next procedure, we are praying all he has to do is fuse his neck. Hayden is getting back to his self we pray that all the adjustments he has to make will not frustrate him. We are going outside today for a little while and Mason will get to see Hayden for the first time since surgery. We are blessed by all the prayers and we are forever thankful.

May God Bless You All,
David

Hospital visit Thurs.

2008-10-09T16:39:00.002-05:00

Hi Folks,
Poppa and Mimi are here at hospital with Hayden and Mom and Dad are resting with Mason we hope. Mason is getting a little tired of being in the motel day in and day out. Apparently Mason threw a fit when he went back with Momma and daddy and did not want to go to nap time so Daddy had to take him to the park. We'll see how that rent later.....I 'm not expecting them back before 9:00 PM tonight.

Now for update on Hayden....he has continued to hold his own w/o vent, but still getting low oxygen. His tongue seems to be a big issue right now because it is still swollen and his teeth keep cutting into it which is causing a problem with swelling. They (nurses)have tried to protect tongue from teeth by using gauge to wrap tongue. They also massage the tongue to help swelling to go down so it will not protrude from his mouth. So keep praying on that issue please. Hayden is still in a zone when you talk to him because of the meds but all in all he is progressing well. The PT came in this AM to get him moving and he kicked the ball with his legs and moved hands over his head. He is still not able to get up out of bed yet. Momma was pitching the ball and she accidently hit his nose and she said he actually had a small grin. So I was excited to hear about that although I'm jealous because I have not seen any emotions from him yet but it will come and I can't wait. God is faithful!!!!!

Poppa will be leaving sometime in the next couple of days and I'm still not sure whether I'm staying or going with him. Wherever I am Mason will be with me. Please pray for travel mercies on that issue. Poppa really needs to get back to work, even though we do not know when Dr. Al-Mefty will do the next surgery.We do however know it will be in the coming weeks .So please pray for Hayden's strength and quick recovery of this one and complete removal of rest of tumor and there will be not set backs with the next and hopefully the last. I will sign off for now. Thanks again for all the prayers.

Still Praising Him,
Mimi

Update-Wednesday

2008-10-08T14:56:00.003-05:00

Hi Folks,

I am here with my main man at the hospital while we send Mom and Dad home with Mason for a little nap and some play time with little brother bear. When Poppa and Mimi left the hotel right before we left Mason threw his pacifier way off somewhere and when it hits it rolls forever. So needless to say we did not find it before we left the hotel. We have several backups but we are trying to get him away from having one anyways. So Mimi told him it was gone because he threw it away himself, so we will see how long that lasts.

Anyways back to my main man....Hayden looks good today. He is off the vent !!!!! Praise God for His blessings. Hayden is however on a little oxygen today to help him with his levels. His tongue swelling has improved greatly, the swelling has subsided enough that it at least is not outside of his mouth. However he still has some swelling and his tongue is sloughing off some dead skin cells and drs. say this is normal, given the trauma the tongue was under during surgery. We are very thankful for some improvements instead of set backs. Here are some prayer requests:

1)tongue will continue to shrink from swelling, and he will be able to swallow correctly.

2) Hayden will tolerate the transition from sedatives to none.(he is now on methodone to help with withdrawals from morphine)

3)He will gain enough strength to be able to walk. They will be getting him up sometime on Sat. or Sunday. His little leg muscles are very tight from laying in this bed and where the tumor was putting pressure on brain stem he was loosing the ability on his right side. Physical therapy has been coming in to work on loosening up those muscles and we are working on that to as we have before surgery.

4)Give Poppa and Mimi direction and peace on leaving here and getting back to GA for a little while so Poppa can work. (Mimi will have Mason where ever she is)

I cannot say enough thank you's for all the cards, comments on this blog, financial support and prayers being lifted on our familys behalf. You all are so loved and you make us feel hugged and loved by your words of encouragement even when you are not able to be here with us watching this journey unfold. Thank you for again for all your prayers .We truly are feeling a peace that can only come from one source and that is what has gotten us through this far and He will be faithful to complete it for His glory. It is our prayer that we be diligent to let people see that this has been a journey that only God could bring us through or anyone else and we want others to see His faithfulness to us.

Still praising Him,
Mimi

Hospital

2008-10-07T14:22:00.003-05:00

Hey Everyone,

This is Poppa sending his first ever blog out. It's Tuesday afternoon and Mimi and Poppa are staying with Hayden while Mom and Dad take the afternoon to rest.
Hayden is currently on a low volume of respirator air and they plan to switch him to full self support this evening. This is a second shot at trying to wean him away from the vent. He is still on a small dose of sedative type medicine which makes him a little sleepy. Thus, he forgets to take deep breaths. It is a trial and error type of effort so it will take a little time. I don't think he has much pain. For that I am very grateful!!
I've had a thought that has rattled around in my head since last Tuesday. Hayden asked Mom if the surgery was going to hurt. That's a tough question to answer!
It made me think about life and so often I ask God...Is it gonna hurt? Sometimes, life hurts...a lot! PAIN MANAGEMENT CAN ONLY BE FOUND IN ONE PLACE! God is our only sorce to carry our hurt. I can safely say that lately I've hurt a lot!! And I can most assuredly tell you that the Great Physician has eased my pain...all of our pain as a family has been so powerfully managed. If anyone ever tells you that doubts and fear won't come, they are only fooling themselves. But as surely as they come, He provides the help!
Thank you for praying for us. You provide a cover for us to keep the wicked one at bay. Keep it up. Your prayers on our behalf are being heard by our Lord and He responds to the prayers of the people!! We love you all so much!

Poppa (Terry)

What Blessings

2008-10-06T10:03:00.003-05:00

Praise the Lord, surgery went well yesterday. Hayden rested for the most part great last night. I finally fell asleep and was up around 1:30 and then at 4:00 I awoke to Hayden trying to get out of the bed. He had pulled his right hand out of his restraint(which is wonderful because that was the weak hand) and was leaning over to the left side of the bed. He is ready to blow this joint! Can you blame him?? I have stayed up since then to make sure he did not do it again. He is doing well with they trach, it feels funny to him so he has pointedto it alot and tried to grab it. The docs thonk this ids temporary please continue to pray for healing. They said that we would not really be able to hear is voice for a while until he learned to manipulate the trach. Well, I heard his voice yesterday it was weak but I heard it just a couple of hours after surgery. This morning He held out his hand and said Momma. How proud my heart was! I told him how proud we are of him and that he can do this.
This again has been some very tough times; but what a friend we have in Jesus that I can cast my cares upon him and he will carry me through!

Christy

Another surgery so soon!

2008-10-05T06:15:00.004-05:00

Good Morning,

Hayden has had a good night they increased his pain med because he was restless yesterday and moving alot. So..no wonder he has been pretty peacful. We will just be waiting for surgery today. Pray for us because I still am very scared of surgery and as a mom it's that helpless feeling. They have had him so sedated at times and then want to pull him out of it so they can do neuro exams only to put him back in deeper sedation again. It just feels like an endless cycle. One that scares and frustrates me. I am ready for him to be able to not be sedated and able to communicate more. Pray that Hayden will not be frustrated when he wakes up with a trach in and not be able to talk much. It will take time before he figures out how to manipulate this new thing. Pray that this is only temporary and we can take it out soon!!!

Thanks again for the prayers and comments. We have been blessed that while we have been here some clergyman from different churches have adopted us and come by to pray with us and offer words of encouragement. We have missed all of you being able to come and visit and wrap your arms around us.

Love and faith in Jesus,
Christy