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Updates on Chance


July 29, 2007
A Good Trip to the Beach!

             Just wanted to drop everyone a note and let you know how things are going.  We just got back from the beach yesterday.  Jason Dalton, Carrie, and the girls wanted us to come down for a few days so we went down on Wednesday.  We had a lot of fun, the last vacation we went on with them was last year and Chance was doing fine then.  We did a lot of things, Travis and Laura came down as well and we spent one day with them.  Travis, Jason, Donnie Sutphin, and I played golf, while the kids played together at the pool.  We had some tough times while down there, by the memories of things that we had done with Chance.  It is just so hard to believe how your life can change in no time.  Last year at the beach we had everything, but within in a short amount of time our life was changed forever.  We just really miss him bad, nothing else just that.  We hurt for Destiny as well because she talks about him a lot and we don’t know what she understands.  She wants him here to play, but there is nothing we can do about it.

            We are trying to get back to doing the normal things of life; this has been a very slow process.  On Tuesday we went over to the church where our preacher was having revival.  The young kids that we loved to hear sing were playing that night and also Mike wanted us to speak a little bit.  I am just so thankful for what God has done for us.  The next several weeks are pretty booked up doing things.  We have a couple of trips planned, and Desirae is trying to get ready for the Arts and Craft Show in October.  She is trying to get back into making her jewelry, she really enjoys this and she does a good job.  Basketball is getting closer; school starting is just around the corner.  I will probably give the kids off most of August and then start back in September with open gyms till November, then season starts.  We have some neat stuff planned over the next several months, please keep supporting and enjoying these fund raisers.  They won’t be supporting our family, but we can help other kids out that will need support. We will keep the Angel Fund and we are working on something else that I will let you know about soon that we think will be pretty cool.  These fund raisers are a great reunion and a lot of fun, please continue to come up with ideas on how to help and keep supporting them, you never know when something might happen in Floyd or outside of Floyd. 

            I want you to keep a little girl name Hazel in you prayers; she has ATRT and has just been sent home on hospice.  Her website is www.carepages.com with the name of Hazelcamille.  Hope all is well and we will write again soon.

            Love,

            Brian, Desirae, Destiny, and Angel Chance


July 21, 2007
A great night!
          After last night I had to write a update.  Last night we had the Relay For Life at the high school here in Floyd and let me tell you what a blessing and a great fellowship it was.  We had never been before, up till about 8 months ago this was just soemthing that affected other people, not us, but then 8 months later we are sitting there just thankful that there were that many people supporting the research for a cure.  We had alot of fun, there were some good times, some sad times, and some rejoicing times.  The group Statement played, which is the young group of kids that I had coached, I really enjoyed hearing them, they are so good.  We stayed till about 11:00, and we walked several laps.  One lap was with A.J. (Travis's and Laura's boy) and Destiny in a red wagon with pictures of their brothers on them.  The turnout was just great.  We still miss Chance really bad, I just think of so much we used to do, but I am thankful that we got to do that.  God has blessed us in more ways than you can ever imagine.  I want to Thank everyone for what they have done in previous years with this research, and I am sorry that I wasn't there to support as well, but that won't happen again.  I could still see how Chance, Joshua, and Kassidy had touched and are still touching peoples lives everyday.  Carry that on, don't stop now, if there is someone that you know that is not right with Christ talk to them, time is getting close.  You put yourself in anyone of our families, last year at this time, we were wide opened enjoying life, then put yourself in our shoes.  Think how much your life would change in you got the news tomorrow that you have cancer, don't waste a day, enjoy every day!  Praise God and get more people closer to him, don't wait till something bad happens, he is blessing you right now.  We were in a hospital alot over the last 8  months and he blessed us everyday.  Please keep the light burning, don't forget what these kids did for your life or someone around you.  Like I said before, the Relay for Life was a great; great time, vacations are a great time, holidays are a great time, but they are not even a start to how great Heaven is going to be, don't miss out on the great celebration.  Just look at yourself and make sure you will be there if something happened today, if not get to church because we wan't the celebration to include everyone.  Well I better get to work, please keep us in your prayers, and thank you for everything you have done, we love each and everyone of you! Praise God keep your light shining!
    Love,
     Brian, Desirae, Destiny, Angel Chance
P.S.  Please keep the Moody family in your prayers she is the little girl that her grandmom is from Floyd.  Her website is www.caringbridge.com with Cali as the webname.

July 19, 2007
Trying to get back to normal!

          Just wanted to drop a note, it had been awhile since we had wrote.  Things have been going pretty good, we have been staying pretty busy with a lot of different things.  You know how it is around the house, when you are there all the time you still get behind, but we have been gone for eight months, we may never get caught up and the good thing is that it is OK.  We have visited the cemetery several times and released balloons.  At times it is still so hard to believe.  We have been having the toughest time over the last 10 days.  The first 10 days we still could feel and see how bad Chance was really hurting and how sick he really was, but now we have memories of all the good things and the fun times we had and it has made it harder.  Destiny has been a life saver though; she is so much fun and we thank God so much for her.  Desirae has been working with her flowers and trying to do a lot of things outside.  I have been going back to work trying to get caught up.  Louie Dalton, Jason Dalton, Travis Cantrell, and Brian Swortzel took me out to the golf course on Tuesday and we had a lot of fun.  I went this morning and played again.  I have also started back working with the guys on the basketball team.  We are trying to get back to normal.  I am so thankful for what we have; God has blessed us so much.  We have several trips lined up over the next couple of months, so we are looking forward to them.  Some are with friends, some are with family, and some are just Desirae and I, so we are going to try to get away and enjoy each and every one of them.  I want to thank you for all of the cards, calls, and every other way you have made contact and what you have done for us.  I will keep updating every so often, please keep the Foster’s in your prayers over the next few days as they go through their services.  We love each and every one of you and if you see us out come up and speak to us.  Thank you for all of the support.

            Love,

            Brian, Desirae, Destiny, Angel Chance


July 12, 2007
Another Day!

         Well here I am again, trying to think of something to do and it just draws me back to the computer.  We had a good day; we went over and let some balloons go with messages on them to Chance.  We really miss him a lot, but we are pushing on.  Life will never be the same again, but we are going to turn it into a positive situation and we are going to live our life like Chance would want to.  We really enjoy going over and spending time with him at the cemetery; it is a really nice place where he is.  Destiny still misses a lot and talks about him a lot.  We went out to Mabery Mill this morning to eat with my Aunt Susan and Uncle George, my mom, and Grandma Margaret, that was a good time.  They talked about the time when they took Chance out there, and the ducks would stick their tails straight up in the air, he thought that was the funniest thing.  Well tomorrow I am going to try to work a little bit, and then maybe going out to eat for my birthday.   Thank everyone for keeping up with us.

            Love,

            Brian, Desirae, Destiny, and Angel Chance


July 11, 2007
A Blessed Day, even if it did rain, I am sure Chance was laughing at us out in the rain. PRAISE GOD FOR A PROMISE!

We want to thank you for everything that you have done over the last 6 months, especially over the last 3 days.  We have been so touched by how our son has made an impact on your life.  We heard so many stories of how you were getting back in church, or that you had been saved, or even how you spend more time with your kids.  We are so happy that our story has been able to touch your life.  We don’t know what our next step is, but we will start tomorrow.  Today was really special; we got to say just a little bit of how important and special our son was to us and the special things that will always be in our heart.  The service went really well, it was a big turn out and the signing was awesome.  Pastor Mike did a super job and thanks to everyone that got up and spoke about Chance too.  Also, thanks for all of the vistors that came long distances to spend this special day with us.  We picked out a very special and pretty place to bury Chance; it is at the church we go to, about 1 mile from us.  We think that in the winter time, when all of the leaves are gone, we might even be able to see his spot.  We are hoping that maybe God will knock down a couple of the trees, or maybe we may just have to sneak over there sometime to take care of them so that we can see him year round.  We went back over tonight and the sunset was so beautiful, but we know that he will see that every afternoon now in Heaven.  He is at the top of the hill, no other place he would rather be.  It is an emptiness that I can never explain to you, but it is such a celebration to know that he is not suffering anymore and he is playing hard.  We know that there will be tough days ahead, but God will provide comfort.  If you did not get a chance to share your story with us over the last few days, we would still love to hear how Chance touched your life, and this really means a lot to us, just write or call, we would love to hear from you.  Like I said before, I don’t know what the next step is, we have been praying that some way maybe Chance and God can work through us to maybe speak a little about what God has done in our life.  We hope that you will continue to grow faith and spiritual wise in the hopes of seeing Chance again one day, but there is only one way and that is through God.  It is very easy, all you have to do is accept and believe.  Everyone keeps asking what they can do for us, live your life right and get to church, take a friend, don’t let anyone miss out on getting to Heaven.  Chance wants to see all of you again.  Again I can not thank you enough for what you have done for us, the support has been great.  Once again if you see us out come up and speak, we would still love to meet you guys if we haven’t already.  I am not sure when the next update will be, I may continue everyday and I may not we will just have to see what the Lord has in store for me.  We love you and thank you for a great journey.  Till next time.

            Love,

            Brian, Desirae, Destiny, Angel Chance


July 11, 2007
THANK YOU!

            I would have never thought 4 years and 9 months ago that we would be sitting where we are right now.  I am so thankful for everyone that has come by to share how Chance touched their life.  From the stories of how that the parents look at their kids different, to they just enjoy life more, and even now I am going to church.  I just don’t understand why God gave this precious miracle to us, but I just give him all of the praise.  The last couple of days have had there good moments and crying moments, never bad moments.  When we cry is when we think back to all of the crazy little things that he used to do to make us laugh.  That will go on for years and years to come.  Don't get me wrong, Desirae and I have an emptiness in our heart, but God is filling it up love.  I just really want to thank every last one of you that stood in the lines for a long time just to get a minute to share your story, because that makes us so proud of what he has accomplished in his short time on earth.  I never could figure out why he was so special when he was born, besides that he was my son, but now I know; he was God’s son, warrior, and soldier and he did what ever he could to let everyone know that.  Just please if you are on the border line or if you are not sure where you are in life now, get in church, get your life saved, Chance is waiting to meet each and everyone of you personally.  Thank you for all of the prayers, we still feel them each and every day.  We still praise God, because there is no one any better, and the promise he gives us that we can see Chance again one day is what we hold close to our hearts.

            Love,

            Brian, Desirae, Destiny, and Angel Chance


July 9, 2007
A great visitation, thanks for all of the kind words! Chance would be really proud he had the opportunity to touch you.

          It was a good night at the visitation.  I want to thank everyone for coming by, we hope to see a lot more of our supporters tomorrow.  Chance would be so proud of all the good things that have been said about him, and we are so proud that he could touch your lives the way he has.  We had a good night and look forward to another one tomorrow.  We saw a lot of people we didn’t know and a lot of people that we did, just know that each and everyone of you made a difference tonight and the past 7 months of our life.  It gives us so much peace that he touched so many lives.  Thank you for all of the support, we love each and every one of you.

            Love,

            Brian, Desirae, Destiny, and Angel Chance


July 9, 2007
Spending time with alot of family and friends.

          Today has been another good day with a lot of family and friends. We got an opportunity to go down and see Chance and he looked so good.  We ask for your prayers over the next several days because we know that even though it is going to be a celebration there will also be a lot of tough times as well.  We ask that everyone come so that we can have an opportunity to meet everyone that Chance has touched.  Please pray for travel too, because we know that there may be some families traveling some distances to be with us during this time.  Once again we are so thankful that Chance is in Heaven having a blast, we just can’t wait to get there.  We still give God all of the praise for all that he has done for our family.   This may be a first, I may not update for a couple of days depending on what time we get home tomorrow night.

            Love,

            Brian, Desirae, Destiny, Angel Chance


July 8, 2007
Thanks for all the support, we appreciate it so much!

Today was a pretty good day.  We have had a lot of support from people stopping by to so much food.  We went up earlier today and made arrangements that you can view from the front of the web site.  We are still so thankful that Chance is not suffering anymore.  We are handling it good, Chance is having so much more fun right now being able to be himself and play.  God is giving us unreal strength in this time.  Tomorrow we are very excited about going to Sunday school and to church, something we have not been able to do in a very long time.  We really encourage you to take time over the three days of Chance’s celebration of healing to come and see Chance and also that we can meet the people that got us through this journey.  We would love to talk to each and every one of you.  Once again thank you for everything you have done, there is no way that we could ever repay you in what you have done. 

            Love,

            Brian, Desirae, Destiny, and Angel Chance 


July 6, 2007
CHANCE HAS GONE ON TO BE WITH GOD, HE IS COMPLETLY HEALED! NO MORE SUFFERING!
          Chance has told us for months on months that God is healing him and recently he kept telling us that God had healed him.  Well, today God has completely healed Chance; he went on to be with the Lord today at 12:00.  Prayers have been answered, Chance is not suffering anymore.  He fought to the very last minute; I am just so thankful that he was our son.  Chance has won; he is a winner, now we all have to praise God, live life right to see Chance again one day.  Please keep all of our family in your prayers over the next period of time.  There are still a lot of kids out here that are fighting for their life, remember them.  Don’t forget, Chance is healed, he is shooting ball, playing golf, or fishing right now.  Can’t wait to get there.

July 5, 2007
We are coming home. Pray for peace and comfort. Thank God for giving us 4 1/2 great years, especially a great 6 months!

          Well guys this is an update that I don’t want to write, but I need to let all of our friends know our situation.  Last night Chance rolled and turned all night long, we just couldn’t figure out what was going on.  This has been going on now for about two weeks.  The morning wasn’t that bad, but it still wasn’t Chance.  The doctors came by and said they wanted to do a chest x-ray to make sure that he didn’t have pneumonia, it came back fine.  Desirae and I prayed all day that Chance would get some relief from this situation that he was in and that God would show us a sign of what was next or what to do.  Then about 5 minutes till 12:00 the nurse came in and told us that they were going to take him down for a MRI.  We had no idea why or who had scheduled it, but later on we figured out that our prayers had been answered again.  We took him down and it took about 1 hour to do the MRI, he wasn’t in a real good mood, very fussy and acting like he was in pain.   We could tell this from his heart rate and his high blood pressure.  This was all real scary to us, but we knew that this MRI would show where Chance’s future set in this fight.  We went back up to the room after the MRI and waited for the results.  One doctor came by to draw some spinal fluid to make sure it wasn’t an infection in the fluid, but after telling him that we had not had a fever he decided not to draw it.  He showed me the results from the MRI, but I couldn’t tell that much difference.  Later this afternoon, our favorite person of the whole journey and the first person we met when we got to Duke came in.  He is Chance’s surgeon Dr. Grant, he is a super person.  We started talking and he felt that he could see a lot of change from the other MRI about 2 weeks ago in that the coating was getting worse.  He said this is very painful, so that would explain why Chance has been very uncomfortable over the last 2 weeks.  Chance’s salt level is down as well which is a sign of tumor progression as well.  Our goal right now is to get his salt back up to where it needs to be and as bad as I hate to say it, bring him home.  His body is giving out and he is very weak.  I never knew how strong a 4 year old boy could be, but this one is unreal, not because he is my son, but because he fought through all of this and he is still going to win.  Like Chance told me the other day, God has healed his boo boo.  We have a few more decisions to make; the TPN is one of them.  If we take him off of it, he won’t last as long because he won’t be getting the food or liquid intake that he needs.  I think we are going to leave him on it, just because I don’t want him feeling hungry and can’t eat.  We are not going to head home if hospice can’t be there when we get there; I am not going to put Chance through anymore pain.  Please pray for these things to work out like they need to.  Just because Chance didn’t get healed here on Earth, he will be healed; don’t think that your prayers didn’t get answered.  We prayed for no suffering, this journey has been full of signs from God, all the way till today, and he is the reason why we are here today.  Keep believing in God, because if you lose the faith now, or until the day you die, you won’t be able to see Chance again or spend eternity in a great place.  God has made the promise all we have to do is follow it.  I don’t know if Chance is down to minutes, hours, days, or weeks, but he is ready and God is waiting on a great soldier.   We know this is going to be tough, but we have seen a lot of strong families go through this on these websites, and even in our community, please keep praying for us, we love you and can’t wait to see you again. 

            Love,

            Brian, Desirae, Chance, and Destiny

P.S.      I will keep updating as much as possible, hopefully every night, but this is all new too us so we will take it one day at a time.

P.S.S.  Please pray that we can explain this to Destiny or that she will understand.  We did a little tonight, she would say Brub Brub sky, Brub Brub sky Jesus, Brub Brub sick, and this is hard.


July 4, 2007
Praise God, we have been out, Chance has eaten, and we hope to see some fireworks!

        Today has been the same roller coaster as before.  When we got back to the room Chance was in a pretty good mood.  They still are not real sure what is causing the seizures, so they want to take him off the other med and put him on another.  To do this they give him a huge amount at one time and then like right now he is totally out of it.  This is getting really hard to watch, he can’t control this because we are trying to give him medicine that will help him, but the more we give him the same he stays, no better.  We took him out three times today, one time all the way outside and just sat there and watched real life going on.  He wanted to go back up to the room, but we didn’t give in, when we took him back up to the room he went right to sleep.  His body is give out, no other way to describe it, he is physically give out and I don’t know if he can rebound from this.  Once again it isn’t going to be from his lack of trying or our motivation.  Everyone keeps wondering when we going here or when we going there, we are on an hour by hour, I couldn’t tell you what the plan is.  Chance has eaten some today and drank some, I believe it is because he has been off his TPN, but they will be starting that back tonight.  Like I said before it is just so hard to see him like this after how active he used to be.  Desirae and I went out to eat tonight; out to the bench in front of the hospital.  The grandparents stayed up with Chance while he was sleeping.  We really enjoyed this; we don’t get much time out like that.  Some of the doctors recommended that we take turns and rotate staying with him, maybe we should, but we haven’t since day one and we are not going to start now.  He is starting to get in a pretty good mood now, I hope we can take him down the hall and watch the fireworks, but you just don’t know.  We are still in that gray area, is he going to get better or going to get worse, who know, but we are going to keep pushing and let God be God and control the situations.  God is still in control, just like Danny Foster told me, you go until you can’t then God will take over.  I think God definitely knows that we are at that point.  Once again we are so thankful for our situation and what God has blessed us with.  This is not the way we wanted to spend this Fourth of July, but I would still pull our problems out instead of a lot other people’s situation.  Keep praying for us; because the sun is going to shine again, we are thankful for each day.  Once again thank you so much for the mail he has been opening it today.  Thank you for the encouraging words in your well wishes and email, we look very forward to those each day.  Everyone keeps saying that we motivate them, but it is from you guys that we get this strength.  Please pray for the Moody girl she got put back into the PICU because of meningitis infection.  Chance is eating real well right now, so I am going to go and enjoy the moment, thank you for checking in on us, it means a lot to us; you will never know.  We Are Thankful For What God is Doing In Our Life, He Is So Good, PRAISE GOD FOR ANOTHER DAY!

            Love,

            Brian, Desirae, Chance, and Destiny

P.S.      We got to meet another one of Chance’s followers tonight, Frankie, he works here at Duke it was good to talk to him and he was so supportive of us.  Thanks Frankie for the kind words.


July 4, 2007
We are not going to lose because of not being motivated, been tough, but we are going to improve!

        We have just arrived to 5300 once again.  We got out last night for about 2 hours, back to the ER and then back up here.  Chance is doing better; it was kind of a long night in the ER.  The CT scan was normal and the X-Ray was normal, and all of the blood work was fine.  We are not really sure what is causing these seizures; it is also confusing the doctors.  One of the doctors came by today and said they were going to send some from neurology to see what they think.  Like Desirae said maybe we needed to get out of here for this evaluation to be done to see what we need to do.  We are thinking that the shunt and the emmya may be causing the seizures.  So they may take him off the seizure medicine, because it wouldn’t help if the seizures were from those two things.  Chance has eaten some and drank some for lunch, which hadn’t happened in a long time.  He is in a pretty good mood, before he was depressed.  We are now in a different outlook and we all have a different attitude.  Chance has been very depressed and wanting to lay in bed, we don’t know if he is going to make it through this, but I can promise you it won’t be because we haven’t worked our tail and his tail off.  We are going to motivate him and he is going to get his body back in shape.  He isn’t going to lose this battle because of lying in the bed.  We have been giving into him and letting him just lay there, no more.  He has been fussy lying in bed, then he can be fussy being pulled around in a wagon or trying to walk.  He says he is tired, we know that, but he is going to work himself everyday.  We have come too far to give in now, it is not going to happen, and we promise you that!  God is Great and he can heal him anytime, we have to get our focus back on our goal and not on the sadness of the progression of his disease or that maybe he is down to days, only God knows that and nobody else.   We are going to enjoy, motivate, laugh, and celebrate each day from here on out.  Even though we went through a tough night, we are back on top of that mountain, we have had a good day and we are going to enjoy it, I will update again tonight after we take him over to the window in the hall to see the fireworks.  Be careful tonight and enjoy the afternoon and the fireworks, and don’t forget to PRAISE GOD!!!!

            Love,

            Brian, Desirae, Chance, Destiny


July 3, 2007
Please Pray, We are Not Sure What Is Going On!

          Today has been very hard.  We did get out of the hospital and back to the apartment which was a good thing I hope.  Chance is very weak right now and his muscles are very weak.  We didn’t realize this until we took him out last night and when we got ready to leave today.  He has been in the hospital laying in the bed for 10 days.  This has been the hardest thing I have ever done in my life.  I have been able to motivate some before, but this is a huge challenge.  He just doesn’t realize what he needs to do.  The other thing is we are all give out and having a tough time right now just motivating our self.  I have been talking about the last 6 months being a roller coaster, but it doesn’t even compare to the last ten days, or even last 24 hours.  Let me tell you about it.  Yesterday Chance woke up in a great mood and was pretty good all day.  He didn’t take a nap all day and even got up the first time in days to look out the window.  So last night we thought since he hadn’t slept all day that he would lay down about 9:00 and sleep all night and we would even get some sleep.  After rolling around for about 2 ½ hours and not going to sleep we decided to take him out on the wagon.  This was about midnight, but if he wanted to get out we were going to take him out.  He was so weak that Desirae had to hold him up so that he could ride and be secure in the wagon.  We went outside and back up to the room, he did pretty good to be out for the first time in over a week.  After getting back he acted really tired so this was good, he would probably go to sleep, wrong.  After about every hour or every other hour he wouldn’t go to sleep, he finally got to sleep about 4:15 in the morning and then on of the doctors came in about 5:00, needless to say he woke up again so it was a very long night.  He woke up pretty fussy, I wonder why.  The doctors told us that we would be going home today so we felt pretty comfortable about this.  Then they gave him his seizure med and they drew his blood to see the level of this drug to make sure we had enough in him, they realized he was pretty low so they gave him a huge amount right after this.  This caused him to react very sedated and it was hard to arouse him, this causing us to get real concerned and page the doctors.  They didn’t have a clue what was causing it, but we thought this was the reason.  Then the had taken his blood and his sugar came back high, but she took it while the TPN was running so that through that off, so they had to stick him.  Now we are figuring on staying more days and hoping he will start to improve.  About 2 hours after that he started showing signs of improvement and then he woke up some and ate the best he has in several days.  Then the doctors decided to let us go home if we felt comfortable, which I guess we do because here we are.  He has been pretty fussy tonight, I just don’t know, this is very difficult.  Right now we just can’t get a break or an improvement and it is wearing on all of us pretty hard.  We still have all of our faith in God and that is who is carrying us right now.  Please pray for Chance to improve, sometimes we are asking our self what to we pray for or what do we hope for, GOD’S WILL is the answer to all of those questions.  Tonight Chance will hopefully sleep so everyone else will too, I hope tomorrow is a good day.  Our next appointment is Friday to check his seizure med level again and I don’t know we may try to come home sometime.  We have to be back down here on Tuesday to get the stitches out and to see what our next direction is.  God has gotten us to this point and he won’t stop now, I am praying he can keep me motivated and pushing ahead.  We love all of you and just remember we appreciate everything you have done for us.  I am not going to lie, we are struggling, and at times all we can do is laugh about things, because it is either laugh or cry.  Keep praying for us and the things we deal with every hour, we really do feel them and appreciate them.  Chance has been starting on his mail and thank you for that. 

            Love,

            Brian, Desirae, Chance, and Destiny

P.S.      We all hope that you have a good fourth, Chance wanted to go up to Roger Hollandsworth’s and watch the fireworks, but maybe next year.  Be careful and enjoy the day with family and friends.

 

******--We are in the ER, Chance had another seizure as I was updating, he is out of it now, they have done a CT and a X-Ray of the shunt.  We don’t know why this is happening, we are very scared, but just please pray hard for Chance, I don’t want to see him suffer.  I will write more when I get more news.


July 2, 2007
Today was a sunny day, Chance is improving, Praise God!!

             Today was a better day.  Chance slept pretty good last night and woke up in a pretty good mood.  He was like this most of the day.  The really weird thing is that he didn’t take a nap all day long, that hasn’t happened in probably 3 months so I don’t know what was up with that.  He wanted to get up and go look out the window which he hadn’t wanted to do either and he walked some tonight as well.  It has definitely been a step forward in the right direction.  Our favorite doctor came back today and was answering some of our questions, Dr. Grant is just super.  He didn’t know where the seizure came from, he was real positive.  I am not sure when we will try to get out of here.  We are still not in too big of a hurry.  Chance heart rate is still up at times, but I think it is where his body needs the steroid and we are trying to get him off of it.  It is almost like a caffeine fit and he can’t control it.  He did get sick twice today, but what he has gone through that is not a surprise.  Right now the only appointment we have is next Tuesday and that is with Dr. Grant and Dr G to see what the next step is.  Hopefully we will keep doing better until then and NY will be the next step.  I may ask Dr. G to call St. Jude’s and see what their doctor would recommend.  I went down and met the other family with ATRT and it was so sad, he is only 10 months old.  Just think a normal 10 month old and how hard is for them to tell you what is wrong, throw in a brain tumor, surgery, and then aggressive treatment and try to understand them then, please pray for that family.  Also keep the Moody family in your prayers, they find out some pathology and CT scan readings tomorrow.  We had a couple of visitors today in Mitch and Jody Reed, it was good to see them and spend some time with them.  My Aunt Susan and Uncle George have been down here through the weekend helping with Destiny and spending time with us, you just don’t understand how much family means and how much you care and love them till you go through something like this.  I think they will be heading back home tomorrow.  I want to thank you again for all of the well wishes, emails, and especially the mail, the mail man don’t even take it to the box, he brings it right to the door because it is so much.  If we get out in the next couple of days I think we will just stay close here in Durham just in case something happens.  I want to give God all of the praise not just for another day, but another great day.  Right when he knows we are ready to break here comes the top of the mountain and the sun is shining, how long will it shine, I don’t know, but I do know it shined today and nobody can take that away.  Know that we love you and miss all of you, keep praying, the journey is still going and this game is not over yet.

            Love,

            Brian, Desirae, Chance, and Destiny 

P.S.  Add a little bit to the update.  It is 12:05 in the morning and we couldn't get Chance to sleep so we took him out in the wagon and let him get outside to see if that would wear him down and get him to sleep.  It was good to get him out, it had been about 10 days for all of us, just to get outside.  As soon as we got back to the room he was lights out, once again a huge blessing from God.


July 1, 2007
Out of PICU and back to a regular room. Praising GOD for another day!!

       Today has been OK, I would say that it is not a lot better, but it definitely isn’t any worse.  We did get back to a room on the floor today, which is really good for all of us.  Chance has talked to us, he is still at times talking out of his head and seems to still act sedated.  They doctors don’t know exactly why that is.  All of his tests have come back good which is a good sign.  He didn’t have meningitis, they did say the only thing that they can figure is that it may be the tumor growing, but who knows.  We are on a very rough roller coaster right now, we have accepted whatever is going to happen will happen and God is in control.  We have tried to figure it out so many times, that we have driven ourselves crazy.  We are pushing on; if we have hours or years we will take whatever.  It is God’s will and we are happy for that.  We keep praying for no seizures, that was really scary the other day.  We don’t know when we will get out of here, but right now we are not in any hurry.  His heart rate is still 130 at night and 160-170 during the day and that is a little high, we wished it would get more normal, but once again there is nothing that we can do about it.  We had a lot of support through the weekend, and I know everyone that wasn’t here wanted to be here giving us hugs and supporting us.  I want to thank Travis, Melissa, and Kelly for stopping by to see us, that meant a lot and I know it was tough for them.  I would like for you to keep another family in your prayers, the mom just wrote me, I will try to get you a name tomorrow, but her 10 month old, 5 doors down has just been diagnosed with ATRT too.  Well hopefully tomorrow we will have improvements, but we are enjoying every minute like it may be our last.  Thank God for another day!

            Love,

            Brian, Desirae, Chance, and Destiny

P.S. Thanks Wayne, I needed that.   




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