Skyler's Page

August 31st:

Last day of the month. Wow, the year has flown by. We had a good week and weekend. It seems like we stay busy. The kids have something going on every night it seems like. Oh well, we have a good time. We were able to relax a little this weekend. We will be Memphis bound here in a few hours. Skyler has appts tomorrow and Wednesday. His MRI is scheduled for Wednesday. Please pray for him to do great and we are praying for positive results. He is feeling good and we expect good results. We do have a few questions for the Drs this trip. We want to address this swine flu thing. We don't know if Skyler should get the vaccine or not. It doesn't seem like people know enough about it. We don't want it to harm him either, so we are at a crossroads and we will just have to see what they say. Just looking for some guidance. We are also going to address some emotional issues Skyler is having. He gets worked up every once in awhile so we need to see whats going on with that. Is is tumor related or radiation related? He doesn't have break downs very often any more. It's better than it was. But like I said, he is feeling great and I expect good results. Pray for us as we travel. We should be back late Wednesday night. Thank you for all you do. I will update with results as soon as we have them.

September 4th:

Well we made it back home safely. We had a great trip to Memphis. The Dr gave us a report of "solid stable." This is great news! They were very pleased with how he is looking and doing. We got there around 8 Monday night, so no time to do a whole lot. Tuesday was filled with blood work, therapies, EKG and Dr appts. It was a busy day, but Skyler was a champ. He did excellent during his blood work. He made friends with the nurse really quickly. He had never had her before, but I think he used his charm on her. You know how he can work you with his charming ways. No Corky's this time though. An Italian place catered in some food to the Grizzly house so we that and then went out for ice cream afterwards. We'll have to hit up our favorite place next time. Wednesday was a very long day of waiting. The MRI didn't even begin until 12:30. So, Skyler was not able to eat until after he was finished. The night before he made feel kind of small though. I was telling him that Wednesday could be tough because he wouldn't be able to eat for quite a while. He said, "that's no big deal, I get it. I can handle it no problem." I wasn't sure I could handle it, but my 7 year old had no problem with it. And you know what, he did not mention food or that he was hungry one time until he was done. Now when he was done, he ate like a horse. Something that I thought was an issue, he didn't think was an issue at all. So all went wel with all his appts and MRI. The therapists thought he was doing better and stronger than last time also. He is a hard working little boy. We did find out that Skyler and Brogan have been on this dose of chemo for the longest. There are other kids that have been on the chemo longer, but they are taking a lower dose. They have been on it for around 2 years. So, that's good news. They thought the swine flu thing was ok. They did not seemed to concerned. His counts and everything came back great. And this chemo doesn't really affect his counts or immune system. As far as the emotional problems go, they have noticed that in a couple other patients. Could be a side-effect of the chemo. Again, they did not seem real concerned. They were happy that he is doing so well. Now for the Mcy stories. She made the trip again with us. She is a handful. She is just a busy body that always has to be doing something into something. All in all she was pretty good for where we were at and waht we were doing. Like I said, there was a lot of waiting. She kept us entertained though. While Skyler was doing his MRI, we went and grabbed some lunch. I'm not sure about any other families, but when we eat, we all eat off each others plate. We just kind of share everybodys food. Macy is probably the worst about eating other peoples food. After we were done, we piled all of our leftovers and trash onto the tray and Macy insisted to take the tray to the area that they are suppoed to go. Well she took off across the cafeteria with this large tray. Melissa and I stayed back in case she dropped it. Then we wouldn't have to claim it. No, that's not why. Really she took off before we were ready. But right before she put the tray on the belt, she started coming back our direction. She then stopped at the first table she came to, set the tray down and finished off the rest of Melissa's turkey sandwich. Then after a few bites she continued on with what she started out to do. That was one of many stories with Macy. That girl is something else. Thank you for all your prayers and words of encouragement. It really helps during this time. Our prayers have been answered. But the work is not yet done. This is an amazing little boy with more work to do. He's going to have an amazing story. Continue to pray for all the other St Jude childeren. It's an eye opening experience every time you walk in the doors. Thanks again!

September 16th:

Hello,

Sorry for all the gaps in our updates. Our schedules are so crazy! Skyler is doing so well in school. He has received 100% on all his spelling tests. Ryan started something with Sky, telling him he could have something special if he got a 100%. So, for the last few weeks we have been making a special trip to Andy's Frozen Custard for a kid's scoop of ice cream. This is becoming bad for my weight size. Sky really has done great going all day to school. He has not had any trouble with fatigue. He has also been doing PT at school. He also goes to Springfield one day a week for therapy too. I am proud of that little boy! Macy also has been doing great. She goes to Preschool during the week and is looking forward to going to the same school as her Bubba next year. We do not have our next schedule for St. Judes. Please pray for good health for everyone this winter with all the different sicknesses going around. I am looking forward to the Fall and Winter Holidays. We have so much to be Thankful for this year. Please never stop praying for Skyler. This battle is not yet finished, but as Sky always says," Sanders never give up!"

Love,

Melissa

September 22nd:

All is well around the Sanders household. Skyler is doing great in school and having a good time. His grades are excellent. He is a smart little guy. He told me yesterday that he did not like Daily Language though. That's where they have an incorrect sentence and they have to show what's wrong with it and correct it. I went on to tell him I wasn't to crazy about it or very good at it either. Without missing a beat he responded by saying, "Oh no, I'm good at it, I just don't like it." Of course he is, how dare I question his ability. But his good grades are starting to cost me a little bit. If he gets 100% on his tests on Friday we had been getting some ice cream. This past Friday it was Olive Garden. I wonder what this Friday will be like? I do know where we will be eating on Monday, Septemebr 28th. We will be eating at Chili's. This is their St Jude day where all profits go to St Jude. I encourage all of you to take a night off of cooking or eating anywhere else and go to Chili's. With this money they are able to help so many children and give them the care that they need to save their lives in many cases. By donors like many of you, that family will not have to worry about how they will give their child the best possible care. They will be able to focus on their child's needs at a very emotional and critical time. Our family will be at the local Chili's and we hope to see you there as well. If you see us there, come up and say hey. We would love to share with others about our feelings for St Jude. Continue to pray for Skyler and the many other families going through these trials.

September 28th:

Tonight is the night that you need to go to Chili's to eat. All profits will go to St Jude Children's Research Hospital. They are a huge supporter of St Jude and they will raise a ton of money nationwide for this amazing hospital. At St Judethey have a Chili's building. This is where Skyler gets his MRI's and where we had radiation each and every day. It is an amazing building. Please go out to your local Chili's and enjoy a great meal knowing your money is going for a freat cause. We will be there this evening, so if you see us, stop by and say hello. All is well around our house. We are really enjoying this weather. The kids are having a good time playing outside. Thank you again for all your prayers and continued support. Please keep the other St Jude children in your prayers. There are many kids going through very difficult trials right now.

October 2nd:

Thank you to everybody that came out to show support at Chili's. There were a lot of people that came out to eat. We really appreciate it. This has been a good week for Skyler. He only had to go to school 3 days. He has been off the past couple of days. Yesterday he spent the day with Grammy. I think they watched a movie. Today he is helping me sell insurance. Actually he has his own room in my office with a tv and toys. That keeps him entertained for a couple of hours. He is doing great though. Macy was the one that had a rough week. She woke up sick on Tuesday. I had to take her in with me to work for a little while. She had som kind of stomach bug that caused her to throw up several times. I took her to the dr and it was a viral thing that had to run its course. She never ran a fever though. She slept most of the afternoon that day. And since she was sick she needed to stay home from school one more day, so again she had to go with me. She felt much better on Wednesday and was full of energy. Skyler had to get his blood drawn and a chest x-ray Wednesday also, so I got brave and took both kids with me to the hospital to get this taken care of. They were very good and we had no problems. I have to admit though, I was a little nervous. Sometimes they feed off each other and you never know what to expect. But we survived. Skyler's blood work came back good and so did his x-ray. Then yesterday he had his regular dr appt and that went well also. We went ahead and gave him his flu shot as well. Hopefully he doesn't get anything that has been going around. That's about all that has been going on in our little corner of the world. As you can see we stay busy and there is never a dull moment around our house. We have a pretty quiet and relaxing weekend ahead. Thank you for your continued prayers.

Thank you for your continued prayers. Please continue to pray. We are dealing with a few things right now and trying to get them under control. Skyler stayed home from school yesterday and today. He has/ is been complaining about an upset stomach and slight dizziness/double vision. He had his blood drawn yesterday and that all came back fine. St Jude also wanted us to go ahead and get a ct so he also did that yesterday afternoon. After looking at it, all of that looks ok too. But, they don't really have anything to compare it to. So we will be over nighting the scans to St Jude for them to review. His symptoms could be from a number of different things. We just have to take every precaution at this point. Since he has had some slight growth that could be causing some issues. We are talking about a small space, so any movement could cause some issues. There could be some swelling, so an option might be to put him on some steroids to take care of that. At this point we don't know what to do. Like I said, we are just taking every precaution and continuing to lean on the Lord to lead and guide us. Melissa's devotional talked about "hope" this morning. It talked about Noah being on the ark sending out the dove after sending it out before and sending out the raven that never returned. He was losing his hope when one day the dove returned with an olive leaf. This was more than a leaf, it was a promise. We cannot lose sight of that or give up. I thought that was an appropriate email she received this morning. We are working closely with the Drs here in Branson and at St Jude. They are doing a great job answering our questions and fulfilling our needs. Please pray for this to be a simple fix and all will be well. We have an awesome little boy that will be using his story to touch the lives of many people like he already has. As a family, I can guarantee you that we will be staying positive and will not be giving up! The Sanders Family never gives up! I will keep you posted.

I wanted to give everybody a quick update. First off, thank you for all your prayers and kind words. We had a good weekend. Skyler did not have any issues Saturday or Sunday. Both days he felt pretty good. He actually went deer hunting with me on Saturday. Although we didn't see anything, we had fun and Skyler did great. So, really the only issue we are dealing with right now is his left foot. We are pushing to get a brace this week. He would be a lot more stable if we could get that under control. All in all it was a good weekend. Skyler is back in school today. You might say a little prayer for that to go well. Again, Thank You for the comments. We really do appreciate them and they do help.

We have a had a pretty good week this week. Skyler has went to school all week and has not had any symptoms that he was having last week. We were able to talk to St Jude about the scans and they said they looked fine. They saw no difference. Our prayers were answered. Skyler's foot brace should be coming in any time. His foot is still causing him a little trouble. We will be starting our 21 day fast tomorrow. This will put us at our time when we will be in CA. If you would like to join us in this fast, we think that woud be great. I did take Skyler out of school a little early on Wednesday to go sit in the "deerhouse." We saw 2 does but that was it. We were waiting for something with horns, but it never showed up. As we were watching the does, Skyler was becoming a little impatient. He was a little cold and ready to leave. He said, "will you just shoot that deer so we can leave?" I think he had a great time! He did a great job. So, no deer yet so we will see what this weekend will bring. Continue to pray for Skylers healing. Also, pray about fasting with us. I hope everybody has a great weekend.

December 7th:

Skyler and I went to St Jude on Thursday. What a day! Our plane left at 11:30. As we were leaving, St jude tried to call my cell phone, but since I was fixing to go down the runway I was not able to answer. Once we landed, I called Melissa to see what was going on. She informed me that the brace that we flew to Memphis for had not come in. This made my day. Melissa and I were just so happy. So, upon arriving to St Jude, Skyler and I had an appt with the director of rehab to figure out what happened and what was going to happen. They admitted there was an error in communication and that they screwed up. The company that made the brace told them one thing and did another, but the rehab dept failed to check with that company once it did not come in on Wednesday. This was a little frustrating to say the least. Skyler told the lady that he bet his mom was not happy with them. They all agreed and thought that might have been an understatement. They did get us a temporary brace until the new one does come in, which should be here this week. But we will be on vacation. The temp brace has helped out after making some adjustments. His ankle was so tight by Thursday that it was difficult to even get his foot in it. He is able to do that now after some stretching. After dealing with the brace, we were supposed to go ahead with blood work and a Dr appt. The blood work also did not go very well. They stuck him twice with no luck, so I had to make them stop. Skyler was pretty upset. I wasn't real sure what we were going to do. We went on to the Dr appt and met his Dr and Lizzy. They evaluated him and talked him into letting another person come in and try to get his blood. Thank God they were able to get it. Skyler also had to get his 2nd round of H1n1 vaccine. We had failed to mention that to him. He wasn't to happy with me. That shot didn't feel to good either. Rough day for the little guy. The Drs did have some concern with some of the symptoms he was having. But, he's not acting like kids typically act when symptoms return. Skyler is upbeat and energetic. I asked them what they would think when we came back in January and the scans came back clear. They said that would be awesome! We had planned on grabbing something to eat with our good friends, the Rupperts. They were there for their scans. We ran short on time, but they were able to give us a ride back to the airport. It was good to see them. We ended up getting back hom about 10:30 that night. That was the end to a very long day. This weekend was spent Christmas shopping, a birthday, church and we ended it last night with the Brason Christmas parade. We had a great weekend. We are trying to tie up all of our loose ends today because we are leaving for vacation tomorrow. We are headed to Redding, CA. We are going to spend a few days sight seeing and having fun. The main item on our agenda is to take Skyler to Bethel Church. They are doing some amazing things there and we can't wait to get there. Pray the weather cooperates. We will try to take a computer so we can update while there, but if not we will update when we get back on the 14th. Please continue to pray specifically for Skyler's strength, left arm and left leg. Thank you for your continued prayers.

December 10th:

We have made it to California. We had a long day of traveling on Tuesday. The kids did excellent. We finally made it here and got settled in around 1:00 am. We left our house around 9:30 Monday morning. So it was a very long day for all of us. We stayed in Sacramento for the night. Yesterday we drove to Fairfield and toured the Jelly Belly factory. The kids really enjoyed this. We all ended up with some jelly beans and some other candy. From there we decided to drive on over to San Francisco. We spent the rest of the day there walking aorund Fishermans Wharf. We also drove over the Golden Gate Bridge not once, but twice because I appearantly didn't know where I was going or where I wanted to go. We had some other things in mind to do yesterday but they were either closed due to winter hours or it was to cold to do them. The weather out here is cold for them. The high yesterday was probably in the lower-mid 40's. After that we made our way to Redding, which was a little drive, but the kids slept the whole way. Our plans for today include going to the Redwoods. We are looking forward to that. Tomorrow morning (Friday) is when we will attend the healing service. Then Saturday we will attend a worship service. These 2 days will be spent close by due to time. Sunday we will start traveling back home. Please pray for us while we are out here. We feel like this is a very important trip for us. Thank you for your continued support and prayers.

December 11th:

Well, we had our times and days confused. Worship service is actually tonight at 7pm. The healing ministry is tomorrow at 9 am. We are 2 hours behind here so that would be 9pm and 11am at home. Nothing like waking up really early to go to Church to find out that you are 12 hours early. Good times. Yesterday we attempted to go to the Redwoods. What we didn't realize is that it was a 4.5 - 5 hour drive one way. Mileage wise it wasn't to bad, but the roads that we had to drive were not one bit straight. We did make a 3 hour drive to Eureka on the coast where we enjoyed a good lunch. We then took the kids to the boardwalk and let them shop around town. We found a chocolate factory that was really neat. The kids loved it! We let them pick out some chocolate. Skyler was really happy when he found out they had organic chocolate. We are still not sure what today will hold. We might go ahead and make the trip to Mount Shasta. Or we will do that tomorrow. Right now we are relaxing while it rains. We did find an indoor go kart track that we will probably go to later. Please continue to pray for Skyler's healing.

December 16th:

Sorry for the delay in updates. Ever since we returned home, things have been a little wild. I will start with telling you that the church service and the healing ministry was amazing. Their worship service was very uplifting and awesome. They prayed over Skyler at the end of the service. The healing ministry was Saturday morning and several people attended this. We witnessed some pretty amazing healings. Skyler had at least 4 people praying over him at one time. We were there about 2 hours. The words they spoke were so powerful. The amazing thing is that each one of them had the same type of thing to say about Skyler. They told us that this healing will be in god's timing and to get ready for it because it is going to be big. It was emotional time for us and for the people praying for Skyler. Skyler said it was the best day ever because he had been healed. Melissa will fill you in a little more about the services. We really enjoyed our trip and it was great to get recharged. The last evening, it was still raining so we took the kids to Chuck E Cheese and let them run wild for a couple of hours. They had a ball. The flight home was a little interesting. We left Sacramento Sunday afternoon about 6 central time. We had to make a stop in Denver and then be back in Kansas City by about 10:30pm . If this would have only happened. We made it to Denver alright, but then we had a 30 minute delay which wasn't too bad. We finally got boarded and took off. About 30-45 minutes into the 1 1/2 hour flight, the ride got pretty rough to where they made sure everybody was buckled up and was holding on. Our plane had some cabin pressure issues or something. Macy ears were about to pop and everybody on the plane became very anxious as they told us to prepare to land. And it could be rough. I told Melissa that we weren't close enough to land. We dropped elevation several thousand feet very quickly. At this point Macy was crying because of her ears, Melissa and I were both a little freaked out and Skyler, well Skyler had the emergency manual out looking at all the pictures figuring out what to do when the plane crashed. He was the only calm one on the plane I think. They had to turn us around and take us back to Denver . When we landed there were several ambulances and fire trucks on the runway waiting for our plane. They said it was precautionary measures. I wasn't so sure. Once we landed and got off the plane, Skyler said he knew we were going to be ok because he asked God to take care of us and he knew he would. The faith of a child is amazing! We got on a different plane and made it to KC around 1. We decided to drive back home after that, so we ended up back in Hollister around 5:30 AM . I was never so glad to see my bed. What a long day. Now we are back in the swing of things getting ready for Christmas. Skyler's braces were here when we arrived. We may have to make some adjustments to them as they rub his ankle a little bit. That's about all for right now. We want to thank everybody for praying for us while we were gone. This was a very important trip for us and we are so glad we took it and was able to go. Thank you for all you do and feel free to leave Skyler a note. I will have Melissa do an update soon.

December 23rd:

Hi, I know I don't update very often. I feel like I am on an emotional roller coaster. The trip to California was great. I loved Bethel church. It was a church very much on fire. They are a church who's mission is revival. I could really feel God's presence in that church. I am sitting here typing this wondering what all I should tell you. My sweet, sweet boy has a MRI coming up Jan 12. Ryan is taking him tommorrow to get something figured out for his Left foot. The braces that were originally made are not going to work. Those braces are going to be sent back to the company. The therapist will take some measurements tommorrow to make a brace/boot that will make it easier for him to walk and get around more safely and comfortably. Skyler's foot is very tight, so he is having trouble pulling up his toes to walk. He is also having trouble with his Left arm/hand. We are doing several exercises to make sure it dosen't get weaker. I am sitting here typing this with a heavy heart due to the conversation Skyler just had with Ryan and I. Skyler said that things have changed in the last few weeks. He said his hearing is sometimes better than others. I am not sure what that is all about. Skyler also told us all that he wants for Christmas is to be able to hop on his Left foot and be healed. Ryan and I told him that if he asks this and prays about it, it will be his. I can tell you as a parent, this is a helpless feeling. I feel horrible and helpless. I have been in contact very often with Skyler's doctors with symptoms and at this point they just want us to watch him. If he develops worsening symptoms or trouble swallowing, they will put him on steriods. He is doing well right now other than his foot/arm problems. He does occassionally have dizziness. This little boy is a trooper, he works soooo hard doing exercises and stretchs and never once complains. I love him so much, and every prayer I say starts off by me telling God how thankful I am for him entrusting me with Skyler and Macy. I feel like the luckiest mom in the world. We are anxiously awaiting Skyler's healing and holding onto God's word and promises. I am attaching a song that has gotton me through several tough days.

http://www.youtube.com/watch?v=7elxC8LXfzE

Psalms 34:18- The Lord is close to the brokenhearted and saves those are crushed in spirit.

Psalms 34:4- I sought the Lord, and he answered me; he delivered me from all my fears.

Love,

Melissa

December 28th:

I hope everybody had a good Christmas. We did have a very good Christmas and spent a lot of time together with our families. We stayed pretty busy but enjoyed every minute of it. Skyler has been having a few more issues with the double vision/dizziness. After a couple days of running around he was very tired on Saturday and did not even get out of his pj's. His speech was also slurred as well. Melissa and I decided to make contact with our nurse practioner at St Jude and we decided to put Skyler back on a steroid to help with some of these symptoms. At this point he is on 6mg/day. Yesterday after taking the pills, he seemed to be doing better. His energy level was up as well. We don't like steroids, but he needs them right now. We will be stocking our shelves because he'll probably try to eat us out of house and home. So far he has done really well with them. Please continue to pray for his complete healing. Other than the symptoms, his spirits are good and he is happy and enjoying all his Christmas gifts. He will go later this week to get his casting for his left foot. This will be a walking cast that he will use to help his foot regain its mobility. This will be an ongoing deal for the next several weeks. The goal is to get his foot back to where it was. We will heading to Memphis on January 11th for appts on the 12th and 13th. Please continue to keep Skyler in your prayers. We will keep you updated. Have a Happy New Year!

December 31, 2009

The last day of 2009 is here. Wow, where did the year go? 2009 has been a pretty good year for the Sanders family. We have done a lot as a family and made memories that will last a lifetime. There have been ups as well as downs throughout the year. We try to focus on the positive and move forward into 2010. We are ready to see what the new year has in store for this family. Skyler contines to do about the same. He is still taking the same dosage of steroids. They do seem to be helping a little bit. He is not having the double vision issues as much. He still does have episodes throughout the day though. I just pray that it goes away. I can tell that it bothers him, but he never complains. He does his best and I honestly don't think he tells us everything because he doesn't want us to worry. That's what kind of boy he is. He is an amazing little guy and I have been blessed to be his dad. Melissa and I are so proud of both of our children. We think they are pretty special. Skyler is getting his cast today for his foot. This will hopefully help him in the coming weeks to be able to walk better. Hopefully he likes it and it doesn't bother him. He will wear it for 10 days or right before his MRI on the 11th. He will then have another one placed after we get back from Memphis. Our Memphis trip is coming up. Honestly, I do not want to go. This is such a helpless position we are in. I would do anything to have my son healed. I do believe that he will be healed and I understand God has a plan for his life, but it is so hard to watch him not be able to do the things he used to be able to do. And there is nothing I can do about it. Like I said, we will march into 2010 and focus on the positives and look to the Lord for strength and guidance. As Skyler always says, "The Sanders family never gives up." I hope you all have a safe and blessed new year. We will probably lay low for the night. Thank you to all of our friends, family and everybody else that has helped to make 2009 a great year for our family. There is no way to thank everybody, but just know that we appreciate all you have done for us. Until next year......

January 9th:

Hello Everyone,

Hope everyone has been staying warm. It is so cold here!!!! The kids have been stuck inside for several days. Skyler asked me yesterday if he was ever going back to school. Skyler has done great in the cast for his foot. The goal was to gain 5 degrees a week. Skyler gained 10 degrees in week 1, so that is a blessing. Skyler got a new cast put on Wednesday and it will be changed this coming Wednesday. We are continuing to press on the best we can. Skyler is doing well. We were able to decrease his steriods to 5mg without any problems. St. Judes has given us the ok to start decreasing to 4mg today. We will pray that we can continue to decrease and get him off the steriods. Skyler of course has a big, big appetite these days. He is beginning to eat us out of house and home. We are packing today to leave for Memphis tomorrow. Skyler is bringing Nano on this trip. He wants to take her to all his favorite restaurants while we are there. Skyler will have all his check-ups, tests and blood work on Monday. Tuesday will be MRI day. Please pray that Skyler's miracle shows on this scan. If I start getting anxious about it I just remember that, "God is the Great Physican."

When I say that to myself I am covered with great peace. Thank you to everyone who has came up to me or Ryan or let us know that they are praying. We feel so blessed to have such a great support system. We LOVE you all!

LOVE,

Melissa

January 13, 2010

We made it home from Memphis late yesterday evening. It has been a long trip. We got to Memphis Sunday evening in time to eat at Corkey’s. For some reason they sang Happy Birthday to Skyler. He said that was alright because he got a free dessert out of the deal. It was pretty neat. The whole restaurant sang to him. Monday was blood work, pt, echo/ekg and a Dr visit. That all went well. Everything came back good. His pt therapist was pleased with his strength even with the challenges he has had the past few weeks. Skyler worked really hard as he always does. The dr appt was just a check up before letting him go to MRI. Tuesday morning he had his MRI. He made it through that with flying colors. The dr appt followed that later in the day. The dr appt didn’t really go as we wanted. It was a tough appt. They confirmed that there are some major changes within the tumor. That is the reason he is having some issues. With these changes, they have taken him off the chemo. It is no longer working. We are open to try other things. We will keep him on the steroids and pray that we can keep it at the dosage we are on. We do have the ok to take him up as needed but will probably not be able to wean him down. The max amount of steroid he could take with effectiveness would be 16mg/day. We were at that point at one time when this journey began. We have also been advised to seek hospice care. Now, we do not need it at this time, but they thought that it would be a good idea to get in contact with somebody to let them get familiar with Skyler and our family in case we do need them. So, St Jude is helping us try to find somebody. St Jude is willing to do whatever we need them to. They are not kicking us out the door. They are still behind us. We knew with this protocol, that if there were any changes that he would have to come off. But, this does not mean that we are giving up. Skyler is a fighter and I’m sure he is going to have some questions that are going to be very, very difficult to answer. We have met with our family last night to discuss what was going on and to let them know that this is going to take all of us. We have been blessed to have such an awesome support system. Not only our family, but with our community and people across this nation. Honestly, we are all still little in shock and numb. We are not sure what our next step will be. The next few days we will try to figure out what we are going to do to see if there is anything else available. St Jude does have another clinical trial that Skyler could be eligible for, but if an opening becomes available we will have to weigh out a lot of decisions. Part of that will be quality of life. Do we want to put him through the side effects of another chemo? Are there other supplements that we could take? These are a couple of many questions we will have to sort though. These are also questions that no parent should have to answer. We haven’t really discussed any of this with Skyler. He hasn’t noticed that he missed his chemo yet. Skyler is a very smart little boy and more than likely already knows or feels some changes within his body. We will tackle his questions as they come. Right now, we just need everyone to pray for our family. Pray for strength, guidance and for his healing. We still believe that all things are possible.

January 18th

Hi, I just wanted to update everyone on how things are going. Skyler is doing good. He went to school on Thursday and Friday without problems. He also got a new cast put on Wednesday. Skyler gained another 10 degrees this week on his foot, so that is great. He will get one more cast next Wednesday. This will be the last cast, then he should be able to get into a brace easily. We meet with Hospice on Friday. We are using the St. Judes affilate from St. John's in Springfield. I really liked the nurse. She was a really sweet, christian lady. She told me that, "Miracles happen every day." She also gave me a amazing book by Charles Capps. It was very hard to have to even think about some of the things she brought up, I just told her I wasn't ready to discuss it. She didn't push at all. She will come every 2 weeks, unless we need her more. I can tell you that I have went through several emotions this week. We are not giving up, I am talking to Skyler's nutritionist and coming up with a game plan to clean all the heavy metals out of Skyler's body. We are praying and believing that this little boy will be healed.

Philippians 4:4-7 Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything by prayer and petition, with Thanksgiving, present your requests to God. And the peace of God, which transcends all undertstanding, will guard your hearts and your minds in Christ Jesus.

We are so thankful for all your prayers and support. Thank you for all your calls, texts and facebook comments. Please know that we read each and every one even though we are not always able to respond. This is a very hard time for us. Please continue to pray and lift up this amazing child.

Believing for a miracle,

Melissa

January 25th:

Hello Everyone,

Just wanted to give you an update. Skyler is doing good, no new issues. He went to school all week expect Friday. Friday we went and got blood work for the nutritionist, went out to eat lunch, and went and saw "The Tooth Fairy." Skyler did great getting blood work, so we celebrated with a date. Skyler chose Red Lobster for lunch. He has good taste. Skyler is supposed to get his cast off Wednesday and get put into a brace, but this will depend on if his brace comes in. If his brace doesn't come in they will put him back into a cast until it comes in, because he needs to not go without. Skyler seems to be feeling fine and is full of energy. We did put him on an antibotic because he has a deep chest cough and we don't want it to turn into pneumonia. Macy is doing really good and has been extra sweet to her brother. She loves him sooo much. Ryan and I have been busy trying to come up with our next move. The nutritionist will review his labs and let us know what homeopathic meds and/or supplements we need to add. I have been praying constantly and this is the verse that keeps running through my head.

James 1:12 Blessed is the man who perseveres under trial, because when he stood the test, he will receive the crown of life that God has promised to those who love him.

It is so hard to live this everyday. Skyler is fighting so hard and I want so badly to make everything ok for him. Isn't that what moms are suppose to do? If your child hurts, you make it better. I HATE CANCER!!

Praying and Believing,

Melissa

January 30th:

Hi Everyone,

We have been snowed in today. I have enjoyed spending a day at home without having appointments to go to. I took off Skyler's cast on Tuesday night and he got his new brace Wednesday. He said it fits good and doesn't hurt. Skyler's brace not hurting is a blessing because the last one hurt him all the time. Skyler has been doing pretty well. Today however he has been a little off. Please pray that it is nothing and that he acts better tomorrow. He is so tough, it is hard to know. I am going to modify my work schedule some so I be more available for his appointments. It is so hard to do these updates because sometimes I just don't know what to write. This situation is so difficult. I am researching some alternative medicine, but it is so hard to know where to go from here.

Matthew 18:19-20

Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. 20-For where two or three come together in my name, there am I with them.

So, Thank you all for your prayers because he will be healed. It is just so hard to wait for God's timing. It is hard to watch him struggle with things that are suppose to be easy, but are not for him. It is hard to make him take tons of pills a day. It is hard to answer questions that there are not really any answers to. The thing I can tell him however is that God will never leave him, and that he is holding his hand, and that he WILL HEAL HIM! The amazing thing about this precious child is that he never doubts that for 1 second.

In Hope,

Melissa

February 7th:

Hello Everyone,

Hope everyone had a good week. Skyler is wanting more snow tonight, so he doesn't have to go to school. Skyler has had a pretty good week. We have had some issues with new brace, so we have been going to Springfield a lot to try and get that figured out. Skyler's therapist have been amazing and keep trying different things to make it more comfortable for him. My wonderful employer has also made this a lot easier by doing some modifications to my schedule. I am so lucky to work for such amazing people. Skyler does not have anything new to report. Skyler is still on 4mg of steroids, but it is a blessing we have not had to increase that dose. We had a splint made for his left hand to make it easier for him to keep it open. We are starting some alternative medicine this week and several new supplements to help with inflammation. These treatments should not have any side-effects, so I am comfortable with them. We are continuing to take it day by day, but this situation is overwhelming. There are days that I feel so stressed and scared, but it doesn't last long before I give it to God and remember who is in control. I can tell you that it is extremely difficult, because Skyler has questions I don't know how to answer. There are times I get so angry I want to throw something when I see him struggle to do something that should be so easy for him. Please pray and remember that "God is the Great Physican!" We also ate at Chilis in Branson on Thursday night. The awesome people there wanted to throw Skyler a Valentine's party. They made this is an amazing night for Skyler. We had cake and candy and he even came home with a few gifts. We were surrounded by family and friends and had a great night. Thanks to Chilis for this night.

Matthew 19:26- Jesus looked at them and said, "With man this is impossible, but with God all things are possible."

Love,

Melissa

February 15th:

Hi Everyone,

Hope everyone had a good week. Our week was very busy. We did lots of running around. We have spent a lot of time in Springfield trying to get Skyler's foot brace just right. Skyler has been having trouble with skin break down on his foot. We have amazing therapists that have been working really hard to help. Skyler has been pretty well, he has been getting alittle tired in the evening, but is still doing all the things he wants to do. I am hopeful that with this new nutritional protocol and supplements we might be able to decrease the steroids some. The steroids are starting to take a toll on him. He has some swelling, trouble sleeping and is having some trouble with a cold/cough. We however have been blessed that we have not had to increase steroids. There is just 1 word that describes this little boy, "AMAZING." He never complains!!! He is about as sweet as they get. We are scheduled to go back to St. Judes next month for a scan as long as he feels up to traveling. Skyler's main problems presently are Left arm weakness. He is not wanting to use his arm/hand at all. Skyler will use it if he is asked, but it is hard for him. He also has Left foot/leg weakness. Skyler is able to get around just fine with his foot brace that helps hold his foot into a shoe and keep his toes pulled up. I can tell you he is fighting as hard as possible and will not give up. He will try his hardest. He made me a card for Valentines that said I was his HERO, but truth be told he is my HERO. He is the strongest, bravest, sweetest, and most faithful person I know!!! We are still awaiting his miracle!

The Lord is a refuge for the oppressed, a stronghold in times of trouble. (Psalm 9:9-10)

LOVE,

Melissa

February 19th:

I just want to give everybody a quick update this morning. Skyler continues to do the same. No new changes with him. We are looking for prayer this morning as another door has been opened this week and we need to Trust that this be the right direction for us to go with the treatment for Skyler. I know many of you have given us different things to look into or try and we have. We have researched everything into great detail and asked our Drs about these things as well. We appreciate everything you all have done. There are many times during this journey that you do not know what to do. You don't know what the right decision is. We just have to completely trust in the Lord to lead and guide us through this journey. This tumor is a different beast and you have to weigh out all your options. St Jude has contacted us with a chemo combination that they feel would be his best option at this point. They are looking to combine the chemo Etoposide with Cyclophosphamide. These are not new drugs, but they are new to DIPG patients. These drugs are used in other tumor patients. At this point we do not have a lot of information about it. We are scheduled to have a phone conference this afternoon with Dr Gajjar regarding this treatment plan. It would be in a pill form taken daily. There could be some side effects to deal with. We will have to weigh all of this out. We want to be able to make this desicion knowing that it is the right decision. We honestly feel like we have made all the right moves up to this point. Please pray for wisdom and guidance as we try to process all of this information that has been given to us in the past few weeks. Pray that we make the right moves and Pray that Skyler is healed. We know that you are already. This is a daily battle for us and we know that each day is a blessing. We will update again once we have had the opportunity to talk to the Dr.

February 25th:

Sorry we are just now letting everybody know what decision we have made. This week seems to be as crazy as every other week. We had the opportunity to talk to the Dr and ask as many questions as we wanted. We have decided to use the chemo. He will take it everyday for 3 weeks and then 1 week off. We are timing this to where he will have his week off when we go back to St Jude on March 18-19. That is when we are scheduled for the next MRI. Skyler started the new chemo a couple days ago and has handled it well so far. He said it tastes really bad though. He's not real crazy about taking it. He does seem to be a little more tired at night. He wants to spend his evenings at home and not go anywhere unless it is out to eat of course. If food is involved he will travel. But usually by 8-8:30 he is ready for bed. He is still having some issues with his foot. The therapist and orthotic specialists are not real sure what to do next. We have made some more adjutments and hopefully this will do the trick. He has some sores on his ankles from the brace rubbing. We have to be really careful with this because they can be difficult to heal since he is on steroids. We did have a good day Saturday. It was a nice day here and the kids were able to go outside and play. Skyler decided that he was going to ride his bike and that's exactly what he did. He had a fear that he would never be able to ride it again. This made our day. Tomorrow we will be going to the radio station to tell our story for the St Jude radiothon on KTTS. This is a 2 day event where they bring in different families from around the ozarks to share their story and experience from St Jude. They are trying to raise money for this amazing hospital. We are scheduled to be on at 1pm. I'm sure we have more going on, but I think Melissa and I are both mentally and physically tired. That's all for now. Thank you for your continued prayers.

March 8th:

"Hello Everyone, so sorry about the gap in our updates. It has been really busy. I hope I can remember to tell you everything that has been going on. We have been trying to treat Skyler's foot sores. We have seen wound care, but they haven't gotten any better. I think we will need an appt this week to have it looked at again. The sores are a major problem because it makes it so hard to get him in a brace. Skyler's wonderful orthotics people have been working so hard to get him into something he can wear to get around better, so it doesn't cause as many pressure sores. We went to healing school at Faith Life Church yesterday. It was amazing, Kenneth and Gloria Copeland were leading it. We could feel God's presence there. Kenneth Copeland was praying at the end, and he said something along the lines of "There is someone, I feel like it is a child, here today with something wrong with there brainstem. That person is healed." We know that he was talking to us. Ryan and I both were in tears. Skyler told us afterwards, that he is healed and has no doubts about that. This is a very important week for Skyler. Skyler's birthday is March 11th and he is sooo excited. Ryan and I are taking pizza and cookies to his school on Thursday. He is also having a birthday party this weekend. Skyler is doing well on his chemo, no side-effects currently. Thanks everyone for your continued support and prayers. This is a extremely hard situation and illness to live daily, but with your prayers, support, and most importantly God, it is bearable. It also dosen't hurt to have such an amazing and sweet little boy. Macy continues to try and help her brother with anything possible, she is such a blessing as well. We are going back to St. Judes on March 18-19 for scans, please pray that this scan shows our miracle. WE WILL NEVER GIVE UP HOPE!! GOD IS BIGGER THAN ANY TUMOR OR SICKNESS!"

March 15th:

Hello, we have had a great week. Our beautiful son turned 8. This is a miracle in itself because the doctors told us 2 years ago he would only probably make it 9-12 months. That goes to show you who is really in control! He had so much fun. On his birthday Thursday, Ryan was a watch dog at school, so he spent all day with him. The Grandparents and I arrived for his school party with pizza and cookies. Skyler was so happy and really enjoyed himself. Skyler then had his birthday dinner at Nano's house. She made his favorite, Enchiladas!! YUM! Skyler then had his BIG party yesterday at Incredible Pizza in Springfield. Thanks to all our friends and family that came and made his day sooo special. He had had a blast! He was there for several hours playing games and riding go-carts. He crashed when we got home after his awesome day. We had an extremely busy weekend. Today, we surprised Nano, my mom, with a suprise b-day party. She had no idea!!! Skyler really had trouble not telling her this week, but was proud of himself for keeping the secret. We head to Memphis Wednesday for Skyler's check-ups and MRI. Skyler is excited to bring his Oppa Dean on this trip with him, he wants to show him all his favorite places to eat. His MRI is on Friday morning. We have been praying faithfully and without ceasing. Thanks to everyone for your continued prayers. We believe this will be the time that God's healing will show up on his scan. We are still trying to get his pressure sores healed and hand and arm moving better. He continues to fight with all his might. He is a happy little boy with smile on his face at all times.

Never giving up,

Melissa

March 17th:

I just wanted to give everybody a quick update. We are leaving for Memphis this afternoon. Skyler will have appts tomorrow and his scan will be friday morning. Please pray for safe travels and for Skyler's healing! Thank you for all you do.

March 21st:

I know everybody is looking for an update in regards to our St Jude trip. We made it home last night. Thursday Skyler had his Dr and therapy appts. Those went well. We were able to see all of his Drs and nurses that he has came to love. Nurse Paula even made Skyler some carrot cake cupcakes for his ride home. The scan was Friday morning as you know. The reason we have not updated until now is because the news was not what we wanted. The scans showed that the tumor has grown and is starting to become more aggressive. The pons are a small area and the body can only handle so much. Right now Skyler feels pretty good. He might have occassional double vision and dizziness, but he never complains about it. We are the ones that have to notice it for him to admit it. They sent us home yesterday preparing us for what could happen. They tell us that he dosen't have much time left, at most months. We are not giving up on this, it's just the odds are stacked against us more heavily than they ever have been. We had some difficult discussions with the Drs and nurses. They are going to stay involved and are going to work closely with our hospice nurse. We met with Dr Baker yesterday and he deals with brainstem glioma patients at St Jude. We will be keeping in contant contact with him and Lizzie. They have also advised for Melissa to go ahead and go on family medical leave. So she has made arrangements to do that. Its very difficult typing this. We were stunned and honestly mad. I would have really liked to have thrown that computer screen of his scan against the wall. It's so hard because Skyler has done everything we have asked him to do to get better. He has a pretty good idea of what's going on as well. Melissa, me and him had a difficult conversation this morning. We were all three crying and have decided to continue to live a day at a time and not give up. At this point Skyler is again off the chemo and will probably continue taking his vitamins and supplements. One thing that Skyler did not want to happen on this new chemo was to lose his hair. In the past three days almost all of his hair has came out. He buzzed it this morning. He wants me to do the same thing. He tells me though that his will come back and mine won't. He still has his sense of humor. He still looks good though. We will continue to pray for his miracle. Please join us in prayer as I know many of you have. Thank you from the bottom of our hearts for your support. We will update as needed if anything changes. Looking at him you can't tell he is sick. We were eating dinner in Memphis Thursday night and the waitress asked him if he just finished playing a baseball game. We only wish that were the case. She had no idea what he was/is going through. Again, thank you for all you do. We will keep you posted.

March 26th:

It has been a roller coaster of a week. A lot of ups and downs. We take advantage of everyday and consider each day a blessing. I want to start off saying a big Thank You for all the prayers and encouraging words. We have an amazing support group. I don’t know what we would do without you. Skyler has been in school all week. We have decided that it would be best if he went in a little later. He loves art class and by the time it rolled around he would be too tired. So now he is able to go to art class. Melissa has also started 2nd grade again. She has been going with Skyler each day this week and will continue to go. I think she enjoys it and she also gets to participate. She came home yesterday showing off her art project that she completed. I told her that she could hang it on the refrigerator. We were all very proud of her. Skyler really enjoys her coming to school with him. Most of the time this week it seems Skyler has felt decent. He complained of blurriness for a few days. We had to increase his steroids to 6mg/day. He was on 4. This seems to have helped. He hasn’t complained of it anymore, but he seldom complains anyways. He does seem to be a little more tired. Another reason we are starting school later is to let him rest a little more in the mornings. He was eating dinner and would be ready for bed by 6:30-7:00 every night. We are hoping to extend that out a little bit and keep him awake a little longer. Another challenge that we are trying to overcome is trying to figure out his medicines. Right now we are taking precautionary measures in case we have to deal with some serious issues later down the road. A lot of symptoms that Skyler could have should be able to be controlled. The one that we are having an issue with is his pain medication. They normally control the pain with morphine, but Skyler is allergic to morphine. I don’t think they have ever run into this before. So we are going to be using dilaudid. We had to test it out yesterday even though he had no pain, but we had to make sure he wouldn’t have any reaction to it. It just made him tired. Hopefully, we will never have to use it. Today we are going to St Louis to watch the NCAA tournament games tonight. First Community Bank gave their tickets to Skyler and our family to go enjoy the games. We are all excited. Skyler I think is more excited about what kind of food they will have. Thank You to First Community Bank! That’s about all we have for now. As we tell everybody, we are not giving up or giving in. We are just living a day at a time and will tackle each day as it comes. Thanks again for your support and continue to pray for Skyler’s miracle.

March 31st:

Hi, I thought it was time to give you an update on Skyler. Skyler woke up on Monday morning at 4 am with pain in both knees. We are trying to figure out what is causing the pain. It has been very difficult. We tried a ton of different combinations of medications to try and get him relief. The more pain medication that we gave him the more he started having other issues. He finally got relief from the pain about 10:00 pm Monday night. Skyler woke up yesterday morning feeling better. He really had a good day yesterday until 2 am this morning, when he woke up with pain in his knees again. The doctors are not sure if steroids are causing the joint discomfort or if it is something else. It must be pretty severe pain because he said he would take a shot in his leg if it would take the pain away and he never complains. I feel extremely helpless. I spoke to Skyler's nurse this morning and she is getting with Skyler's doctor to see what we can do to help him get some rest. He told me last night that he has been through so much already and doesn't know why everything has to be so hard. I really didn't have an answer to that because I asked myself the same thing. I just want him to be happy and enjoy his LIFE. Thank you to everyone that has been praying for him and us. This is an extremely difficult time and am trying my best to handle it and stay positive for Skyler and the rest of my family. It is so difficult to live this 24 hours a day. Skyler really dosen't want to get out much, he is much more comfortable at home, snuggling on the couch. I will never give up hope on his miracle, I just pray that it is soon, so he can do all the things that he wants to again. He always says he just wants to be a "normal" little boy. I always tell him he could never be normal because God made him so special. I will give you more of an update later after speaking to his St. Jude's doctor. I love you all and am so thankful for such amazing friends and the support that you provide.

Believing and Praying,

Melissa

April 9, 2010

Hello, this has been a much, much better week. Skyler he has felt a lot better since we have stopped all his medication except steriods, but we were able to decrease them. Skyler has been pain-free all week and even been to school some. He does have double vision sometimes, but never complains about it. We went to the Branson Belle on Tuesday and both the kids really enjoyed the talking dogs. I spoke to Skyler's doctor today from St. Jude and they said we could try and decrease the steriods further. Skyler would love to decrease steriods more. The kids are excited for a fun weekend. Grandma and Grandpa Mitchell are coming for a visit from Arkanasas. We are also going to go to Dixie Stampede. FUN FUN!!! Thanks to everyone for your encouraging words and prayers. We will not give up or give in! Skyler is believing every day for his Miracle. I have been recently been reading from 2 Chronicles 20- and it talks about Jehoshaphat and how he trusted God. I love vs 20- Have faith in the Lord your God and you will be upheld; have faith in his prophets and you will be successful. VS 21-Give thanks to the Lord, for his love endures forever. The Word keeps us strong in our faith when symptoms and fear try and pull us down.

God never fails,

Melissa

April 21, 2010:

Hello, it has been pretty busy around here lately. We have been having as much fun as possible. We had a blast at Dixie Stampede last Saturday. The food was great as well. Skyler has been feeling pretty good. We have dropped him down to 3mg of steriods/day. This is amazing because just a few weeks ago we were at 6mg. We went to Silver Dollar City on Sunday and it was great. Skyler made it for 5 hours!!! That is great for him. He rode in his chair up and down hills and walked some as well. He told me his favorite thing was his funnel cake. He has been going to school more and more each day. He really enjoys going and interacting with the other kids. Skyler continues to struggle with his left arm. He has lost almost full use of it. This is very frustrating for him and us as well. He also is having the same problems with his left leg. He does say that his eye sight seems better. He says that the blurry vision and double vision is better also. He seems happy and always has that smile on his face. We continue to stay positive and our thankful for each blessing and every day we have. I feel so blessed to get to spend every day with my little sweetheart. Macy had Kindergarten round-up last night. It is hard to believe she will go to school this fall. She is very excited. She got to ride the bus and eat a cookie. That made her day. She is ready to start tomorrow. Ride the Ducks contacted us last week and wanted to have benefit for Skyler. They have been generous enough to lower the prices to ride the ducks all day on Saturday the 24th with proceeds going to Skyler. From 11-2 they are going to have special activities for kids. We plan to be there during this time. This community has again blown us away with the love and support they have shown us. It is unreal. Skyler is a trooper and continues to march forward each and everyday. Thank you for your continued prayers. We hope to see everyone at Ride the Ducks on Saturday.

Believing for our MIRACLE,

Melissa

April 28, 2010:

We had a great weekend. The Ride the Ducks event went great even though the rain tried to ruin it. We want to give a huge Thank You to everybody at Ride the Ducks and eveybody else that made this day great. That includes Branson Bank, Lightspeed Electrical, Sadies Sideboard, the balloon clown, TCAD, Branson Fire Dept and Branson Police. Skyler had an awesome time and even drove a duck. We had a good turnout even with the rain. Skyler did great all day long. He was still going at 10:00 that night. That is unreal. Sunday was a day to rest though and as the day before caught up with him. More good news is that we have lowered the steroids again. We are now down to 2mg/day. This is again amazing. No new issues either. This week is another busy week. Monday we had to take Skyler to a therapy appt. Macy went along with us and joined in. Today KSPR 33 wants to shoot a commercial about Skyler. They will be coming to our house this afternoon for this. This is an extension to the St Jude Dream House Giveaway commercial that airs now. Thursday Skyler will go to Springfield for therapy And then we will get to end our week Friday evening at the Springfield Cardinals game thanks to Gordon Weathers with ServiceMaster Restoration. We are excited about this. It should be a fun night. Skyler has also been going to school for a few hours each day. Thank you again for all your continued prayers. Matthew 19:26 says "With God all things are possible" We are living and believing this.

May 6, 2010:

Hey Everyone! Skyler has been having more issues starting on Sunday. Skyler was increased his steriods back to 4mg, due to more issues with dizziness, blurry vision, and double-vision. We had an emotional talk with Skyler yesterday morning. He said he needed to have more steroids because his dizziness was getting worse, but didn't want to because he would gain more weight. He was very upset. It was heart-wrenching! Skyler is having a lot more trouble walking and getting around. He has been going to school all week. He does take his chair now, so this eliminates the walking. He has a tough time walking long distances. Being in the chair, although we don't like it, it allows him to go to school and have fun hanging out with the other kids. It is so hard to watch all these things getting harder and harder for him. He is so awesome! He deals with this on a daily basis and 99% of the time he dosen't let it get him down. Skyler has been saying Mark 11:22-"Have Faith in God". Skyler has been doing some work with St. Jude for the St. Jude dream home giveaway this year. You can purchase tickets for $100 to win this $380,000 house. All proceeds go to St Jude. It's an amazing house. We have only seen pictures, but tonight we get to take a vip tour. Can't wait to see it. They are doing a story on KSPR 33 tonight on the 10:00 news. They were at our house last week doing the interview. We are starting to see some commercials for it on ABC. It looks like it will be a good story. Please continue to pray for Skyler and our family. It is hard to deal with this day in and day out. But he is an amazing little boy that keeps us going each and everyday. Thank you for all you do.

May 10, 2010

ATTENTION ALL PRAYER WARRIORS,

Skyler needs you now more than ever! Skyler has been having a harder time with dizziness, double-vision, blurry vision, and headaches. Skyler has been having an extremely hard time walking because he is so dizzy he is afraid he will fall. I talked to the doctor on Friday and he told me to give Skyler a "burst" of steriods on Saturday. I gave him 6mg at 1 time and 2mg more, all on the same day. It was still not enough, because on Sunday it had gotten so bad, that he asked me to call the doctor and see what could be done. Skyler didn't even tell me how bad it was until Sunday evening because he didn't want to mess up Mother's Day. He is always worried about others over himself. The Doctor told me to do another burst of steriods today and go up tomorrow to 6mg daily. The doctor also said there is still some room to go up on steriods, but there is a point where you can't go up anymore and where they stop helping. He also said there is a patch that we could try to help for dizziness, but didn't want to use unless we had to because he is so sensitive to medication and the patch could cause side effects as well. The school is going to set up home bound school, so Traci his wonderful Para can come and be with him every day. He is really happy about it. I know before I have said I have felt helpless, but this tops the charts for HARD. I have been an emotional wreck. I sometimes think I am going to lose my mind. I can't express enough what your prayers and kind words mean to me. I have been singing the song, "Healer," to myself a lot. The words, I believe your my healer, I believe your all I need, I believe your my portion, I believe your more than enough for me, Jesus your all I need. This helps a lot when I start feeling overwelmed, scared, worried, stressed, and pretty much feel like my heart is going to burst! I will post a link for this song because it is so good. Thank you for your love and support!

LINK for the song-

Love, Melissa

http://www.facebook.com/l/6b00c;www.youtube.com/watch?v=RvIEJ_PmqJ8&feature=related