HURRAY!!!!!

This is Aunt B reporting to all...

Surgery was a success. Hayden's brain stem relaxed and the dr. was able to get what he needed. We are soooooooo happy and thankful for the blessing God has bestowed upon us!!!!! This is not the end of this long journey but God's faithful. What a great birthday present for Mimi/Mom. We will write more after we see him and speak more with the dr's. Thank you for all the support and continued prayer!!!

Love to all,
Aunt B

PS They will try to do an MRI before waking him up tonight. Keep praying; we are hoping for more good news!!

Angels among us

Hey it's Christy sitting here in the waiting room waiting for my angelface to be done with this nasty tumor. We have just gotten an update on him and he is doing fine. they did not start really until about 11:45. I spoke with the neuro-resident and he said that they had a little trouble putting in the arterial line so it took a little longer to place this line so they could start. We have received 2 updates since then and he is doing well.
Thank you for all the prayers. They are surely sustaining us. Continue to lift us up! As David and I were with Hayden in pre-op he was pretty upset, strong but upset. As we were answering questions for Anesthesia he kept trying to get my attention, I bent down to listen and he said Moma is it gonna hurt? You see yesterday I was talking with him about things because My heart as a mother is breaking. I wanted to make sure he understood that putting him through this that we loved him. I have felt so helpless at times trying to protect him and hope that he felt only love and security. We only want to make him feel better! I got my confirmation Hayden knows exactly what's happening. I did pretty good keeping it together, I know that's God carrying us. That same nurse who was there in pre-op has checked on us periodically. She just brought a ballon with angels on it with a verse that reads "For he shall give his angels charge over you to keep you in all your ways" Psalm 91:11 She also saw the Anesthesiologist out in the hall and he said things were going really well!! Thank you Jesus! Thank you for sending your angels!
I hope I have made some sense with this update, I'm pretty tired.

A Fathers Love for his son

I sit here the night before Hayden's surgery praying to God that all goes well. Restless and not able to sleep, I think of all the good times that we havehad over the past five years. I think of the days when he was a baby how I couldn't wait to get home from work to hold him. And to watch him grow up to be little man has been alot of fun as well. I just want to see him to continue to grow without any setbacks. My heart is broken knowing all that he has to endure. I want to step in and endure his pain but I know I can't do that so I pray to God to comfort him during this time. Hayden has touched so many hearts and I know that is God at work, and that is where I'll find my peace.

Love to all
David

This is Daddy sharing his heart with all of you all. We both are up late trying to wake up from this terrible dream. We know you all are praying and Hayden will be at the hospital at 6:30 Am on Tuesday so please pray he will be ok with waking him so early. He's like me mornings are a little rough to get going. Then please pray for surgeons, nurses, any and everyone who will be taking care of Hayden. Pray for God to direct every move they make, and that Hayden will tolerate this surgery and they will be able to get all of tumor so he won't have to have another surgery on Friday.

Again thank you for the many prayers being lifted for our precious little man..God has been faithful and He is faithful to complete all for His glory .

God give us strength

Today we have gone to see Dr. Al-Mefty to talk about what route they will take for surgery. He told us he would approach it through the mouth. This approach would expose the larger portion of the mass.Then if all goes well there would be another approach from the right side in a few days. It has been confirmed that it is a chordoma. This news we didn't want to hear but God has other plans and he will help us deal with it at this time. There is alot of apprehension at this time, knowing all the dangers involved with the surgery, we ask that all lift up prayers for us throughout the day tomorrow.
Surgery is schedule for 8:30 am Tuesday Sept., 30th.

Here we are at The Purple Cow!

Good evening folks,

Today has been a good day. Hayden has felt better and been more like himself playing and irritating his brother:) We believe at this time since we have not heard from the Drs. office even though we have called and left message that we are on schedule for Tuesday for first surgery.

We went to a place called the Purple Cow that is supposed to be the place to go in Little Rock to eat ice cream, so we went because they have purple ice cream and we wanted to check it out. I'm going to try and send some pictures of Mom/Dad & Hayden at the Childrens Hospital of Arkansas that's the train pics and some of brother and purple ice cream. Hayden was not as impressed with ice cream as Mason.

Aunt B (Brooke) and Uncle Jeremy went back to Nashville so she could work on Thurs and Friday. They will be returning sometime either Sunday or Monday.

Here are some prayer request: First that they had enought tissue for staining to check and see if this is a Chordoma or Chondro Sarcoma and that it will turn out to be a Sarcoma even though it is a cancerous tumor. Supposedly it will be easier to treat and once it is gone that's the end of this battle. Second, that Hayden will continue to get stronger and his lungs will be clear. Third, pray for Brooke and Jeremy safe travel on return. Fourth, the surgery.

Thank you all for all the kind words of encouragement, prayers, and phone calls. We will try to continue to keep you posted.

PS. Thanks Bev for working on blog so people will not have to have a google account and password to post comment.

Still Waiting

Hi folks,
Here's an update on progress so far as we know it to be. Spoke with Dr. Al Mefty and this is tenative schedule. When we met with him on Tuesday he said there would more than likely be two-three surgerys . One Mon. or Tues and second to follow on Friday. The first to remove tumor at one angle and second at second angle for more tumor removal and possibly to do a stablelizer. Hayden had his MRI on Wed he had to wait nine hours because they had to work him into the schedule. He is such a strong little man and our hero. Well today is Thurs. PM and we have not heard anything from Dr. today regarding the MRI.We on the other hand have had a restful day doing nothing. Hayden needed that today he was not feeling well this morning. He has been better this eve. Energy level has increased a little. He is standing here beside me as I type this so I told him he could type something so here goes......Thank you for your many prayers. Here is my phone 931 359-6748. love Hayden..

Some of you have asked for address here: Markham House Suites-5120 West Markham, Little Rock, Arkansas Suite 101-phone: 501-666-0161

Will write again on Friday...we have a 2 yr. old having a meltdown, because he does not want to share.

Thanks again for all the prayers being lifted for our family.

Hurry up and wait!!!

Hey everyone,
This is Christy writing under Mimi's name. We are in Little Rock now and have had a full day. Hayden seems to be feeling better from whatever hold this virus has had on his little body. I, on the other hand, feel tired and so weary. We are waiting for Dr's to clear him for any type of surgery and sedation for the MRI. This morning we met with Dr. Al-Mefty and we as a family felt good about him and his bedside manner. They were doing the staining on the pathology slides from Vanderbilt today. We still have no word on what they have found out. We also had blood work done and a chest xray to make sure there is no pneumonia present. Also still waiting on these results. Dr. Al-Mefty has said maybe surgery Tuesday of next week. Anesthesia thinks ideally we should wait 3 weeks from the time of infection to really make sure Hayden is feeling better. So....as you can read we are waiting and quite frankly I am feeling pretty down. I wished I knew what the plan was. I have watched my precious child feel so poorly at times but yet most days he's still smiling! I want so much to make him feel better and have prayed for God to let me go through this pain that he has endured for the last 2 years. I am so proud of him; he is my hero! As we pulled in after the long day today, Hayden asked, "Are we done with the the doctors?" We said, "Yes for today we are." Hayden replied, "Have they made me feel better yet????" That broke my heart! We told him they are working on it. Please pray that God gives Hayden the strength and stamina to get through the days ahead. We are still praying for complete healing, I PRAY without surgery because I know my God is able; I, on the other hand, am feeling pretty weak but only through Him can my strength be renewed.

Thanks again for all the prayers and keep the comments coming!
Christy

In Route to Little Rock

All,
I am posting this for Donita and family. I spoke with them earlier and they are in route to Little Rock. Hayden has had a fever and cold and will not be getting the MRI on Tuesday morning but will see the Dr. in Little Rock. They will then determine MRI and surgery days. On behalf the the family thanks to all for the kind words and support and of course the wonderful prayers....Keep them coming......

I am sure Donita will post us an update when possible.......

Beverly

Vanderbilt visit

Hello all,
As you can see I'm still up 12:24 at night, I guess I will pay for this on Wed. morning:) LOL
Christy, Dave, Hayden and Mason made a trip to Nashville to Vanderbilt today to have a swallow study done because they could not get it scheduled before surgery in Little Rock hospital. So Hayden did ok which is a surprise because he is so picky about what he eats. They of course have to give the usual graham crackers, applesauce mixed with the barrium which tastes yukky to say the least. But praise God the therapist said he was doing great and that his swallowing was great. They will fax a report to Little Rock so Dr. AlMefty will have a baseline for follow up after surgery. We thank you for the prayers being lifted on Hayden and familys behalf.

Mimi's Meltdown

Hi folks,
Just wanted to update you as you follow us on this journey thru the valley I will call " 2nd Tour of Duty" with this thing called chordoma. I really want to call it the 2nd tour of doody
because we just came back from Christy/Dave's house and as I watched Hayden struggle to lift his right hand with his left hand and put it where he wanted it to rest. (He did this because the right side is so weak.) I could just feel my spirit going down the toilet so that is why I want to call it tour of doody:( For those of you who have a loved one who is ill and has trouble with mobility I know you know the feeling.) So as I started to really question God AGAIN, He reminded me that He is still on the throne and still in control and He loves Hayden more than I could ever dream to even though I tell Hayden & Mason I love them to heaven and back that is nothing compared to Gods love. I know God is hearing my prayers, but some days are really hard...As I sat in the choir at church this morning, we sang a song that talks about going through the dark valleys and still trusting and following God no matter the outcome even while the storms rage on. I realized again that no matter what trials there are whether it be the worry of parents with illnesses and not be able to help them physically because you're miles away from where they live, finances, a prodigal child, your own illness and for me watching your adult daughter and her husband who lost their first son watch their second son who is just 5 years old go through this very dark valley of chordoma tumor right now. So as you can see Mimi is having a bit of a meltdown......as she did at church today. I'm not going to apologize because I've always been a cry baby, at least that's what my sisters say:) But through all that they have gone thru God has given a peace to Christy and Dave and our family and He has brought Hayden thru and we feel He will continue to do so. So many of you are on this journey with us as you have been since the diagnosis and we are very thankful for all you have done in your financial support, words of encouragement, cards, gifts for Hayden and most of all prayers.
Here are some specific prayer requests: Pray for Hayden's strength for the trip, his over all health. (No colds, asthma problems, sinus problems,etc) That the surgery will go well with no complications like last time (swallowing problems, reflux, being able to walk, meningitus etc.). That the Dr AlMefty and team of Drs. will be able to clearly see nerves, etc. and they will not be disturbed and cause any paralysis, and have no trouble getting to the tumor and removing all the tumor if possible with no side effects. Pray for Christy and Dave's health and strength, finances, and peace for family. Pray for Mason, Hayden's little brother that he will stay healthly and happy while brother is going through this ordeal and that Mimi will be able to keep up with a two year old again, I was just getting use to keeping up with a 60 year old :) Pray for safe travel to and from hospital. Pray for Gods healing again and we give Him the praise and glory for all He has done in our lives and what He is yet to do.

Update to trip to Little Rock, Ark

Hi folks,
Just got a call from Christy and she said Dr. Al Mefty's office called and said they have changed the MRI to Monday and we will see Dr. Al Mefty on Tuesday and surgery still on Wed. He did receive the tissue slides from Vanderbilt and it looks like they have not been stained so Dr. Al Mefty is going to try and stain them and see if it shows it is a Chondro Sarcoma or not. We are still a little confused about this, it is my understanding that the Chondro Sarcoma is still a type of Chordoma but Dr. Al Mefty told Christy if this is the case it will be easier to treat. Will keep you updated. Thanks for the many prayers being lifted up for our little man and our family, we appreciate every one of them.

Trip to Vanderbilt today

Hello all,
Christy, Dave, Hayden & Mason went to Dr. Pearson's ( he was surgeon that did the last surgery) office today and Dr. Pearson was pleased to see them. He gave Hayden a neurological check up and said everything looked good ( of course little brother wanted to get in on the exam to, exclaiming "Do me, Do me, holding out his arms."). They (Mom & Dad) discussed the next surgery telling Dr. Pearson about Dr. Al Mefty (sp) from Little Rock, Ark. and Dr. Pearson said Dr. AlMefty (sp) is a renowned surgeon in Chordoma tumors and he was very pleased to know that he would be doing the next surgery. He said that he felt very good with Haydens progress to this point and that he can see that there is weakness on Hayden's right side at this time. He also told Mom and Dad that Hayden was going to be in great hands with Dr. Al Mefty so that makes us feel a little more at ease with the Dr. and the surgery. Thank you for your thoughts and prayers and please continue to pray.