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Friday, August 28, 2009 6:13 AM CDT Well we are offically back in school. The boys went back on the 12th I believe and we have got into our routine again. Devan is in 4th this year and his teacher is Mrs. Callahan, which is who he wanted. He is doing excellent as usual and after testing his reading, he reads at a 7.4 which is 7th grade, 4th month level!
Gabe is in 5th this year and he actually has a male teacher named Mr. Hartsfield along with his VI teacher Mrs. Cessna. He has never before had a male teacher and seems to really be liking it. So far I think he really wants to help Gabe to succeed. The boys have been doing great.
Yesterday Carlton and I took a line dancing class together. It was at a local church and it was pretty fun. The boys went too, but they watched a movie while we danced. Carlton actually did better than I expected and he said he will keep trying. Both of us got our feet crossed from time to time or lost where we were, but we'll keep trying... We have never done anything like this before, so its exciting, and a bit of a workout too.
Today I am doing a bird release for Carlton since he couldnt do it. I am a little nervous as this will be my first one ever. Its at a place about an hour and half away and they want two birds. I just pray the birds cooperate with me.
Tomorrow will be Saturday and on Monday night Gabe started asking me what we would do on the weekend! Weekends are more important to them since they are back in school. Last weekend we had Alex and we went all over to thrift stores, and yard sales then out to lunch. It was really fun and I think all the kids enjoyed it. This weekend they wanted to go bowling, as Alex and Devan got bowling balls for their bdays and want to use them. Gabe is now requesting a golden bowling ball for his bday in November. Nanny gets them the bowling balls...
Anyway it should be fun!
Well I will close, just wanted to give a brief update on whats up with us.
A kiss to Bradley who is with Jesus and a big thanks to Jesus for the hope of life eternal with Bradley again!!
Love you all
Monday, July 20, 2009 7:37 PM CDT Hello all.
I have updated a few photos. The opening page photo is a picture of all of our sons in healthy days. Bradley is holding Devan who is only 8 months old at the time and Gabe is next to him about 2 years old. I miss those days, I wish to walk back into the picture and make everything happy once again!
That said, I must live with what is. So when you all see the photos on the other pages with our sons enjoying Florida know that while we had a great time, we have endured terrible times as all you other ald families are enduring, and know that we are looking forward to one thing and that is a heavenly reunion with our son Bradley so that we can be a WHOLE family once again.
I havent updated in several weeks. We went to Florida and had a great time resting, enjoying the pool, beach and sunshine. We found lots of beautiful shells and threw most back as they had living creatures in them. The boys tried their hand at fishing there, but didnt catch nothing but Devan's "rock fish"..ha ha. We ate lots of seafood and found a great ice cream place that makes homemade ice cream and sorbet.
On one of our trips to Florida years ago with Bradley we let him buy some hermit crabs and bring them back home. He named them Sunny, Sammy, and Sandy! We enjoyed them alot. Gabriel remembered this and wanted to purchase his own hermit crabs to have. We tried and tried to find a place that sold them there in that area, but no one did. We ended up with two little turtles instead. They are very small and cute. This is the new addition to our family and the combining of an old/new memory. Gabe finally chose names for them and decided upon his dad's advice of two of the four ninja turtles names : Raphel and Donetello, or Ralph and Don for short! Dont think they know their names yet. Anyway we headed back home with two new turtles and after 16 1/2 hours of driving made it to In.
Upon arrival Gabe was running a fever and said his ears hurt badly. We stopped at immediate care where he was diagnosed with swimmers ear in both ears, and an infection. It was quite painful for him.
In addition when monday came, my car broke down on the way to work, our a/c went out in the house, we had to replace our toilet and my hours got cut at work! All in a few days of our return. Talk about not wanting to return from a vacation! But, we have the car taken care of , the a/c is working now, Gabe is doing fine, and we have a new toilet! ha. We are praying and thanking the Lord for our jobs and all the blessings he has given to us.
In just three weeks Gabe will start 5th grade and Devan 4th. I thought all summer I would help Gabe learn his multiplication tables and work on his brailler, but we havent done nothing but enjoy our summer and rest. Ugh. I guess we will try to start for a little while tomorrow.
Well I guess that's the update for now. Thanks for checking on us and enjoy the pics. Love to all of you. God bless and help all ALD families and kids.
Christie
Thursday, July 2, 2009 6:10 PM CDT Hello everyone-
We have had a nice week here in IN. The weather is mild compared to 98+ humidity of last week. Its been low 80's with no humidity. That is getting ready to change for our family as we travel south to FL for vacation. The kids are excited and we are too. The beach, sand, sun, ocean. The boys are planning on fishing this year. They wanted to take all their fishing gear that they catch bluegill,bass on, but Carlton explained that the lures, hooks are not big enough for salt water fish!
We are also planning on going snorkling, which I have never done.
I am praying for peace as we go and that once we get there I will not feel depressed because I miss my Bradley so much. I want him to be with us, but know he cannot be, that we can only be with him someday! I know he's fine and with our Lord and Savior Jesus its just sometimes my heart overrides my head (a lot of the time). Anyway, I am very thankful to have that hope and promise!
We will celebrate the wonderful vacation God has blessed us with and the time we have with our two other boys! We will be joyful of the future with Bradley again. Thank you Lord for your grace and mercy.
Gabriel is doing good. Him and I sorta had a stomach ache the last few days but are getting over it. He doesnt get sick like he used to with vomiting and diarrhea every month or so, his immune system is finally doing good and getting back to "normal".
Well I guess I will close and say goodbye to all and thanks for checking in on the Smith clan. We love you all. Please remember to pray for Sean Suppan, Dominic Flores, and Jack McCall three boys struggling with ald. Thanks
Christie
Saturday, June 20, 2009 8:38 AM CDT Hi everyone.
Yesterday Gabriel had his endocrine appt. It went alright. They took 4 tubes of blood, so he was pretty wiped out afterwards, we needed pizza fast!! LoL
He still is not really growing, and this has become an issue of concern for his health. The doctor said he has to fall completely off the chart before our insurance will pay for HGH, and even then they only pay 25%, we get the rest! ugh... Anyway yesterday he was on the edge of the last line of the chart, I would say that if he doesnt grow he will be off the chart by January. I really didnt want to do HGH, because its a daily shot, and the expense, but I think we are running out of options. Our doctor seems to also think that when he starts puberty that will help kick in his growth, so they are checking his testerone.
After the doctor appt I took the boys to the Fun House to play and eat lunch. We ran errands and got our AC charged in our van, its 95+ degrees here and so humid, terrible.
The boys went with me to pick out flowers for Bradley's tombstone too. We got yellow with a few pink ones added for summer color, I know it sounds girly, but it was beautiful. We also got two little flags and a flag pinwheel for 4th of July. I always want Bradley to know he's still a part of our family and our hearts.
The boys have been going to VBS (Vacation Bible School) at the church next door. We went to the closing ceremony last night. They put on an awesome VBS, and the boys love to go!
Today we are off to see Toby Mac in concert...I can't wait. If you dont know he's a Christian rock/rap artist. He used to be with a band called DC talk. Devan loves him and Gabe enjoys alot of his music too.
Anyway, that's all for the update. Please remember all these little boys facing and fighting ALD and the symptoms of: Jack,Dominic,Sean, and Gabriel.
Love to you all
Christie
Friday, June 5, 2009 5:22 PM CDT Hello all-
Today is Friday and I had the day off with the boys! It was so nice to be able to sleep past 3:30am! Lol.
Today we ran around a bit. It was a beautiful day, not to hot but bright and sunny. We stopped at a few yard sales. The boys love to do this! Then we headed to run errands and ate lunch at their favorite pizza buffet. At the buffet I saw Kelsey Taylor, a good friend of my older son Bradley. Bradley would now be 15 if he was here, and Kelsey was 15 too. Its amazing to me how tall and mature 15 year old kids look. It was a joy for me to see her and it made me think of Bradley and how he would look now, and about his friendships. I hope he still holds a dear place in their hearts too.
After that we went to take Carlton lunch at his work and then on to see my grandmother, the boys great grandmother. She is 84 and doing great. Its just been in the last two years she has had any trouble, and that is with her knees. I invited her to Holiday World with us on Tuesday, she said she would let me know on monday when she sees how her knees feel. Its a lot of walking at Holiday World. The boys are excited about going next week. Its an amusement park and water park. I hope we have good weather. Tomorrow we are taking them to a state park here in Indiana, that has hiking trails and a waterfall. We took them last year and they had a blast getting in the water fall. Its really pretty too. I guess we will take a picnic lunch. They are hoping that their cousins (the girls) can come too. They went with us last time.
Gabe has a bit of a stuffy nose, I am wondering if its allergies, the honeysuckle is out. He seemed tired today. He goes for his endocrine checkup June 19 I think. Several times recently people have seen him and Devan together and said, something about his older brother. Gabe is quick to tell them that Devan is his little brother. I feel for him. I know he wants to grow, I hope it happens when puberty starts. Otherwise he will need HGH and its quite expensive I have heard. Our insurance plan only covers 25% of the cost. Ugh. Anyway, we will cross that bridge when it comes, and trust in the Lord for our provisions and Gabe's growth.
Sending our love to you all this weekend....
The Smith Family
Thursday, May 28, 2009 7:42 PM CDT Hello everyone!
Gabe is finally off for summer break. Which is good, he could definately use the extra sleep. Devan will be out tomorrow. Gabe had his heart doctor appt on wednesday. I was unable to take him because I was on an all day field trip with Devan to Indy, which was very interesting.
Gabe gets his heart checked every two years since he was two. He had heart surgery when he was two to remove an extra flap of skin just below his aorta. This visit they told my mother in law Diane that he still has 31% leakage of his valve! What?? I didnt remember that two years ago, but we do see a lot of doctors. The doc said it stayed the same since the last visit, and that he will recheck it in two more years. I guess its not something to worry about, but 31% is awful close to say 50%, it freaks me out as a mom. I think what if he has to have another heart surgery at some point?? Plus I wonder if this contributes to his tiredness even though he has Addison's diease too. Anyway....
I keep seeing more and more families with ald and hearing the horror stories of how it has effected their life and their children. There is a new website going up with ald families and contact info. Please check out :
http://ac4ald.com/ALD_Family.html
Please pray for these little boys and their families. They are truely suffering and facing life/death, sometimes not knowing which is worse. Plus the moms/dads are physically and emotionally stressed, I remember those days and its almost to much to handle just remembering.
The summer offically begins tomorrow at the Smith household, when both boys will be out of school and offically bored by Monday afternoon. LOL. Aw, summer.
Love to you all and prayers to all ald families worldwide
Christie (Bradley, Gabriel, and Devans' mom)
Monday, May 25, 2009 6:46 PM CDT WOW, it has been quite a while since I have posted on here. I guess if anyone still checks this site you would like an update?
Well Gabriel is now 11 and doing well. He is legally blind. We have seen his immune system really finally come back as of this year. He has not missed much school this year due to illness. For the previous five years he was sick all the time, usually monthly with diarrhea/vomiting due to his low immune system. It really took five years to build back up. He still struggles with tiredness and energy levels, esp. in the summer (hot/humid) but he loves swimming and that helps. He is attending a "normal" school he is just finishing up 4th grade, with tomorrow being his last day. He is bused about an hour from our home to a school that has a VI (special teacher for visually impaired students) teacher on site which has been nice. He has worked with Mrs. Cessna for his entire time in school and loves her. She has been a blessing to Gabe and us, because she just helps him learn at his pace and has never been discouraged but only encouraged him and told us he could do it! He has!! He has learned braille and is doing his spelling words on a brailler, he uses the computer some (still learning the keys), and is doing well. He is not at grade level but we are very pleased with how he does and how much he loves school. He has made lots of friends there that take him under their wing and help him. Not to say that he hasnt had struggles, but all in all its a miracle how well he does. Gabe is still such a joy to be around, always positive, always trusting God despite all! He teaches me lessons everyday. We have Gabe taking karate although he is asking to discontinue for the summer. He wants his summer for himself!! Ha
Our youngest son Devan is thriving in school. He is an avid reader and loves photography. He is very smart with school and very curious about everything. He is a blessing for us and for Gabe. He is always looking out for his brother. They like a lot of the same things, which is good. They both enjoy Star Wars, Power Rangers, Narnia, Swimming, Riding Bikes (yes, Gabe rides a bike, no training wheels!), Fishing, Hiking, and Camping. They are very good boys.
Everyday we miss Bradley being a part of our life. We often think of him and pray for Jesus to give him a kiss from us. The road without him is a strange territory. You think you can do it, and then your blindsided by a memory, a thought, seeing someone or something, a smell, etc. You just never know what it will be, and it can put you into a tailspin. Gabe remembers Bradley alot more than Devan and I guess that is to be expected considering their ages. Its just hard on mom to think one son I love, doesnt hardly remember the other son I loved. Anyway I know all will be made right by our Lord and Savior Jesus! I am very thankful to everyone who still checks on us via this website or my home website, at church,work,calls and cards, we love you all!
PS> I have met many families with ALD and it is a great privledge to talk with them, maybe encourage or help them. It makes what we went through mean something! To all ALD families, hang in there...
Tuesday, October 3, 2006 6:52 PM CDT Good evening to you all.
We are enjoying the fall here. We took the boys camping this past weekend at McCormicks Creek with my cousin Laura and they had a fun time.
Gabriel is doing better in school lately, he is in 2nd grade and is getting more help this year. He seems to be taking it just one day at a time instead of always asking me "whens my days off". He gets around his school very well, visually impaired and does all the things the other kids do, or at least trys it. He's very independent. If anyone knows Gabriel they know he loves action figures. He has 100's of power rangers, star wars, g.i. joes, and superheros in his room. His talent is that you can hand him one and he can tell you exactly what it is, all except the color which he cannot see. He's got a very good record at this and has been tested by my friend! He is amazing. He's so happy and positive. If I ever feel sorry for myself all I have to do is look at my precious son.
Devan is thriving in school 1st grade this year. He loves all his "specials" like science, music, art, and library. Notice I didnt say P.E. Ha, he hates it. He is very taken with the movies like Narnia, Star Wars, Indiana Jones, and Lord of the Rings (yes, he's 6) and has asked me many questions about how people through them up, how they were books, or movies, etc. He has said he wants to be a writer and asked me for a journal to write ideas in. I got him one today, and am excited to see where God takes this. He is such a big help here to me in the evenings with Carlton at work. He helps pack lunches with me, and he always helps Gabe. He is like a big brother, even though we all miss Bradley and wish he were here.
Its very hard right now without him. I think about him constantly. The seasons have changed and I want him here to enjoy them with us, with his family. Devan did a thing at open house where you put your name under the size of your family and he put 5 (I was so blessed and touched within my heart that he didnt forget Bradley, he never forgets, neither one of them). Its like I am constantly waiting, waiting to see Bradley again. I go on with my days and take care of things but I am constantly waiting. That's how I am getting through, believing and knowing that he's fine and I am just waiting and doing what God wants us to do until the time of our reunion!! It weighs heavy on my about our family and many of them are unsaved. I ask if any of you are reading this please seek God and give your life to Jesus, no one if guarenteed one more hour on this earth, dont wait. Please check out www.needgod.com We want our whole family to be reunited in heaven!!
Medically Gabriel is doing alright. He was having some problems with having blood in his urine and bilateral flank pain, but had a ultrasound,cat scan and all was negative. Thank you Lord. The doc said he needs to drink more water and we are trying to enforce that.
This past weekend while camping we took him on a hike and he got really exhausted. Its a constant concern when we take Gabe places, wondering if he can physically hold out and have energy because of his Addisons disease. He is on the replacement medication but I dont think it can totally replace what God put in the body. Its always a concern wherever we take him somewhere, he physically cannot go all day. Maybe 4 good hours and that's it, but when he is expending a lot of energy even less (like the hike). It varies from day to day. Well thats all for now.
Sending Blessings to all who read this and especially to all who are touched by a leukodystrophy!!
Love
Christie
Tuesday, October 3, 2006 6:50 PM CDT
Tuesday, October 3, 2006 6:50 PM CDT
Thursday, July 27, 2006 4:36 PM CDT Hello to all who still check our page from time to time.
Well this summer is about gone and we are looking to start a new school year. Gabriel will be in second grade and Devan in first. Gabriel will be getting much more help this year as he will be in the resource room a lot of his day. I think this will be good for him. He still has speech problems but has come a long way. I have even noticed that he is maturing some. He had a urinary tract infection on our vacation, so it got canceled. He was sick the whole week with extremely high fevers. He has been better ever since... go figure. He goes back to his endocrine doctor in Aug and we will once again see if he has grown. I pray he has. His appetite has been great lately. His engraftment was checked in May and had come back up some, so we were really happy about that.
We have done some fun things this summer, like swim, Holiday World, fair, parks, and just fun days with our cousins. Devan is getting excited about being in 1st grade. He will go all day and I dont relish the thought of getting him up at 6:30 am for the bus. He has always been a late sleeper and hard to wake up. Not like Gabe who is always happy to get up and joyful. I guess he will adjust. Devan is doing great. He is healthy and much to mature and responsible for his age. He is a blessing to Gabriel. They are two peas in a pod. I am working 3 days a week, and its plenty for me right now.
We are very involved in our church and will be starting VBS next week (vacation bible school).
AS the new school year is just around the corner, I think of Bradley more and more. He would of been in 7th grade this year and 13 on Feb 13 2007, a teenager. Its very hard and depressing many times. Something I fight.
I know he's with the Lord, I just wish we were all together again. All in Gods time I guess.
Thanks for all your prayers and concerns.
We love you
Christie
Sunday, May 28, 2006 6:51 PM CDT hello to all-
We have just started summer break for Gabriel and Devan. They are very happy and have been swimming in there little 4 foot pool the whole week. Seems every time the seasons change and something new starts the pain of losing Bradley starts all over again. Its very hard to watch the boys play and not see him there too. To see his old friends from school and how much they have changed and wonder what he would look like now. We went by the gravesite today and Carlton asked Devan (age 6) if he remembered anything about Bradley, and he said "not much", he was not quite 4 when he died. That's hard for me because Bradley was such a wonderful part of my life and I loved him so, and Devan is too, and for the two not to really meet...it's hard to think about!!
Gabriel will be in 2nd grade next year and Devan in 1st. They are as opposite as they can be. Devan loves school, Gabe doesnt. Gabe's a people person, Devan isnt. Gabe talks nonstop, Devans quiet. Its funny!
Gabe just recently had blood taken again, to check his RFLP which has fallen to 65 n the last 3 years. We are praying for it to stabalize, its an ongoing struggle.
Devan is enjoying tball very much this year, and has made tremendous progress with hitting and running. He has several more games. I'll post his photo when I get them.
Thanks so much to everyone who still checks our webpage periodically, and prays, and loves and thinks of us. We appreciate it so much. Seems as time goes on, its harder and harder to make the new memories without Bradley...
Love Christie and Family
Sunday, May 28, 2006 6:51 PM CDT hello to all-
We have just started summer break for Gabriel and Devan. They are very happy and have been swimming in there little 4 foot pool the whole week. Seems every time the seasons change and something new starts the pain of losing Bradley starts all over again. Its very hard to watch the boys play and not see him there too. To see his old friends from school and how much they have changed and wonder what he would look like now. We went by the gravesite today and Carlton asked Devan (age 6) if he remembered anything about Bradley, and he said "not much", he was not quite 4 when he died. That's hard for me because Bradley was such a wonderful part of my life and I loved him so, and Devan is too, and for the two not to really meet...it's hard to think about!!
Gabriel will be in 2nd grade next year and Devan in 1st. They are as opposite as they can be. Devan loves school, Gabe doesnt. Gabe's a people person, Devan isnt. Gabe talks nonstop, Devans quiet. Its funny!
Gabe just recently had blood taken again, to check his RFLP which has fallen to 65% in the last 3 years. We are praying for it to stabalize, its an ongoing struggle.
Devan is enjoying tball very much this year, and has made tremendous progress with hitting and running. He has several more games. I'll post his photo when I get them.
Thanks so much to everyone who still checks our webpage periodically, and prays, and loves and thinks of us. We appreciate it so much. Seems as time goes on, its harder and harder to make the new memories without Bradley...
Love Christie and Family
Saturday, February 4, 2006 5:36 PM CST Hi
The start of yet another Feb has been hard thus far on us, and esp. me. Thoughts always turn to Bradley, why he isnt here celebrating his upcoming birthday, what he's doing, and how long till we will be together again. Guess that's up to God, but it's still very difficult for me.
Devan has signed up to play t-ball his very first sport attempt ever. I know Bradley would be sooo proud, and be there to help him and show him some pointers, if he was here... Bradley loved every sport and tried to be the best at everything he did. If there is one word to describe him it is "driven". Devan is excited about trying t-ball, I dont know if its because he has seen Bradley's trophies and photos, or he truely wants to do it. We will see.
Gabriel and Devan started swim lessons this past week. I am hoping Gabriel will get good enough to join the swim team. When they can swim the length of the pool, then they can be on the team. Gabriel is very strong in the water and loves the water, but he doesnt move his arms right, and doesnt kick well enough. Guess it will just take time.
Gabriel goes to the doctor (endocrine) on this monday. We will see how he is doing with his growth and they are taking blood to send to MN to check his engraftment. He did finally grow last visit, almost an inch!! Yippee.
He is doing much better with his illnesses, than last year. When he gets sick which hasnt been very often, last year it was every month, it doesnt last near as long and isnt as severe. The endocrine doc says that's because his meds are right and his immune system is becomming strong...finally...
Our lives continue, its not the best, and I guess its not the worst. Would love to hear from some of you sometime.
Drop a line or two.
Love Christie
Saturday, April 2, 2005 6:21 PM CST Hello to all
I am writing to update everyone about Gabriel's MN trip and two year checkup. We arrived on Wed the 30th and stayed at the Days Inn this time because the RMH was full. Sadly to say more families are being effected by leukodystrophies and cancer there. Gabriel saw the endocrine doctor on Thur morning and he confirmed that Gabriel has not grown in height in a year. He ordered some blood work and will review the results. Gabriel may need to be started on growth hormone which is a transdermal shot daily. Not looking forward to that!
The eye doctor says Gabriels site is bad and wont improve. He also has the beginnings of cateracts due to the steroids he has taken and will need the rest of his life. We will continue to put Gabriels vision in the hands of the Lord, and will not give up regardless of the doctors opinion. Gabriels neuro evaluation was as expected. They said he needs intensive speech and will need extended school year during summer break. I am not suprised, but blame myself some. I have been so depressed and down this year it has been hard to find the time to really want to help him or myself. I have decided to become more active in his education. The other thing was that Gabriels engraftment has fallen again, it is now at 80% Devan's cells, 20% Gabriels, which the doctor things is fine, but is at the same time concerned that two years after transplant it is still falling. He suggested that we check it every three months this year. He reassured me that Devan's and Gabriel's marrow can coexist and Gabriel will still be fine, but it's concerning. He said if it fell to perhaps 50% then they would transfuse Devan's blood into Gabriel to stimulate/boost Devan's marrow to grow more. Gabriel's MRI was great no advancement of the disease, and all looked good there. The trip had its ups and downs. I met a family at RMH on Thurs night at bingo that my heart just went out to. They have three sons all with ALD. One reminded me so much of my Bradley and all he went though. I talked with them and tried to offer support in any way I can. Its a tough road to walk. I just wanted to hold that little beautiful boy who was suffering so. I am doing what I can and will pray for him and the family daily.
I thank God for Gabriel and Devan, and ALWAYS for Bradley being such a wonderful part of my life. I know we will be together again, until we meet on the other side, I love you son!!
Love you all
Blessings in Jesus
Christie Smith and Family
Monday, February 14, 2005 1:26 PM CST Yesterday was Bradley's 11th birthday. Gabriel has not failed to remind me all week that Bradley was having his birthday party in heaven with Jesus. The weeks leading up to the 13th were difficult. I about what type of party he would want, what gifts he would be asking for as he grows older. We decided to buy a fruit bearing tree each year and plant it in his memory, that way the boys will be able to eat the fruit and think of their brother. We also purchased a flower arrangement. Devan chose daisies and Gabriel sunflowers for their brother. He had several beautiful flowers on his gravesite already. His mamaw and papaw got red and white roses with "I love you" sign and a cupid sign. His nanny and papaw got sweet peas because she used to call him "sweet pea". We have received many letters this month already from friends, classmates, and family that knew our son, sharing some of their memories with us. We cherish this outpouring and will hold onto each memory as well. It has blessed us deeply to know how many lives he touched.
Gabriel is doing well although he has a head cold he cant get rid of. School is difficult for him, but he is learning. I known God has not forgotten or forsaken him. He still has a plan for his life.
Gabriel and I will travel to MN for his checkup on March 30-April 1. Devan is doing well. He will start school in the fall.
Carlton and I will be giving a talk/testimony about our story coming up in April at the Emmaus walk. Please keep us in your prayers for that.
I must share this verse I found the other day :
In John 16:33 Jesus himself said "In this world you will have trouble. But take heart! I have overcome the world".
We have had troubles, but one day we will have victory! It brings me peace to KNOW where Bradley is (heaven) and who he is with (Jesus). I dont understand why, I miss him terribly, I long to be with him, but I must accept that this was God's perfect plan for our lives, and I believe by faith all will be alright in the end.
May God Bless you all-
Christie Smith and family
Monday, February 14, 2005 1:24 PM CST
Monday, November 29, 2004 1:25 PM CST Hello to all who still check out our webpage and care so much!! We have made it through Thanksgiving. It was ok, we weren't really looking forward to it, but we survived it. The thoughts of Bradley were on all of our families hearts. Thinking of him and Brittany sitting at the bar last year eating and giggling together, that is a precious memory, and hard to think of. He loved her so. We lit a candle in his memory and placed it on the table, and Carlton said the prayer and mentioned Bradley, it was tough for all of us to get through that one. Our hearts are still broken and hurting so. There are new fall flowers on his grave along with several lillies that various people have placed there. I think his grave is visited often but I dont know all those who go. It's very hard for me and Carlton to go. It's reality...although I know he is not there!! We also had Thanksgiving Sat at my parents house and that prayer was just as difficult, thinking on the absence of Bradley. I really dont know how we are making it sometimes when I think over all that our son had to go through, but I know the Lord is sustaining us, there is a peace that it's all going to be OK. Devan and Gabriel have been talking a lot about their brother lately. Devan has learned to play Bradley's nintendo Tarzan game and his gameboy and is always wishing Bradley was here to help him "win". Gabriel has been wishing for a "big brother" a lot lately, I dont really understand what has brought that about now. Maybe its his way of hurting and trying to deal with it. Gabe is doing well in school and enjoys it very much. I started back to work part-time (2 days a week).
Yesterday we put up the Christmas tree and Bradley wasnt here to put on his ornaments. Some of the ornaments I couldnt help but cry over. I thought of his little hands actually crafting them and painting them. His precious little hands held and created the ornament.
I have shopped some esp. for the boys. It was always a joy for me to buy for them for Christmas, but I was surprised I could still do it this year. I think its therapy and it feels good to make them happy. Bradley would still want them to have presents, I am sure. He loved Christmas!! We went to the Hospice Hearts ceremony and placed a heart on the tree at the mall in memory of Bradley. They sung a couple of songs that were really beautiful. It was nice.
We are also helping another family staying at MN Ronald McDonald House in memory of Bradley this year. Our family and our church are buying gifts for this family who has a sick child with a genetic disease.
Have a blessed holiday and don't forget the real reason for the season..Jesus
The Smiths
Thursday, September 9, 2004 6:19 PM CDT I have been looking over my photos today and it just doesnt seem real. It's been six months now since we lost Bradley and it numbing. At times I can't believe we were ever that happy (as in the photos), it seems it was just a dream; but the pain its very real. Bradley should of entered the 5th grade this year with his friends. He should of been there to help Gabriel go to school. I just cant describe how our lives are and how different everything is now. The things we thought were important dont even matter. I pray that people will really analyze there life and truly SEE how blessed and lucky they are.
I look at my other two boys and I know I am very blessed but still its so hard not to yearn for the one I have lost.
Gabriel is adjusting to school. It has not been easy. The bus ride is long for him, he sleeps sometimes on the way home. He is now starting to get homework trying to learn braille. Sometimes the challenge looks to big, I just have to give it to the Lord and pray for Gabe. He has started swim lessons once a week and enjoys it. Devan is bored at home, we try to work with him some and do things with him but he misses Gabe. We finally got some goats and they are a real joy to watch. We have 5 nannies and two babies.
Well I will close and wish you all the grace and peace of Jesus in your life.
Love Christie
It seems like not to long ago we waited for you to arrive
Finally there you were, a beautiful creation from the hand of God
So small, so perfect, so eager to live
The joy and happiness at one extreme of life's yo-yo
Just your presence in the world was enough for me
To watch your personality, unique only to you develop
To know your wonderful silliness and your athletic ability
Those were a gift, thrown in free
It's what drew me to you, it's what made my heart love you
Those are the things I miss everyday, just hearing you say "mom, can I have a pop"
The memories are there, they hurt the most, they bring the most joy
To know I must live on them until I see your beautiful face again
Now you have left me and life's yo-yo swings again
Sadness and sorrow fill me without you in the world
Sometimes you seem so near, there is always a need for just one more conversation, one more kiss, one more I love you
But hope springs eternally as now earth's bounds cannot stop it
You have gone to our eternal promise, nothing can take you away
Everyday, you are in a place I can still only imagine
I wait still, quiet, listening always for that trumpet call
Again I shall see your precious face!
Monday, June 28, 2004 11:45 AM CDT Hello to all
Life is starting to fall back into a semi-routine, dont know if that's good or bad. The boys are doing well. Gabriel is doing some summer school, speech, and occupational therapy. Devan is enjoying having his brother and best friend to play with. Soon Gabriel will start school and it will be a big change for everybody but especially Devan, not to have him to play with during the day. We have enjoyed God's creatures this summer. So far we have had kittens(3), tadpoles (turing into frogs), a fox mother and her 3 babies, and soon to get a baby bunny. The kittens will be going to their new homes soon, the tadpoles have legs and soon will be frogs, the fox babies living close to our house in the brush are growing big and it just shows how life changes so quickly. Each day is precious.
Carlton is still working at his same job and I am here with the kiddo's. I worked at an Emmaus walk this past weekend, and it was good. The boys missed me, I was gone for 3 days. The United Leukodystrophy foundation is having their annual conference in July and I want to try to go to some of that, and see whats new for Gabriel. I have received so many cards saying bibles, ronald mcdonald house needs, hospice $ and needs, ULF research $, and a scholarship have been donated in Bradleys' name. I appreciate everyone's heart and generosity to help another family in the name of my son. Our hearts ache for him and want to see him everyday. It will never be the same but I know we will be reunited. Thanks to all
Love Christie and Family
Wednesday, March 31, 2004 1:06 PM CST It is now going on 5 weeks without Bradley in our house. Time goes so very slow and yet so fast. We all are so hurting inside from his loss. We would never want him to stay here in the condition he was, and I know that the Lord showed him mercy and love by calling him home. It's just the wanting of the past as we look over photos and hold memories in our hearts. The baseball games, vacations, holidays, just the ordinary week nights, birthdays what a treasure they were. At this stage its hard to think of memories they hurt to deep. I have thought about the home movies but know I am not even close to being ready for that. We have done nothing to his room and as it sets it gets harder to make myself want to clean it out. They say time will heal, but I dont know. The only thing getting me through is knowing Bradley is with Jesus and that I WILL see him again! That is my daily moto, my daily reason for going on. I am so thankful for that blessed knowledge...
Gabriels checkup in Minnesota went well. His MRI was really good with no advancement and no Gadalinum enhancement. Wonderful news. His neuro test went well with him still being in normal range, just needing to get visual assistance here at home. His immune system is still low, so the docs want to postpone immunizations for 3 more months. We are still waiting on the final result from his engraftment but the preliminary was still in the 80 ange. It was a good check up. None of us wanted to be back in the Ronald McDonald House I think the memories for all of us are to difficult. Gabriel just remembers going there "well" and coming out blind and sick. We remember our whole family coming there to treat our sons and then go back home and live a happy life. Not exactly what happened...
We thank so many of you for your prayers and support, and presence during the funeral.
Bradley continues to make his impact on the world and on all who knew him. Till we meet again beloved son....
Saturday, February 28, 2004 0:00 AM CST It breaks my heart to type these words but I must let you all know that our brave beautiful little hero Bradley Grant Smith born Feb 13,1994 was ushered into the presence of the Lord Jesus Christ Feb 27,2004. He went peacefully. He had been especially ill for the past two days and unable to eat or drink. At 8:50pm Jesus called him home. He is now healed! He is playing, jumping, running, and I hope he gets to snowboard. It was always something he wanted to try. How my heart will ache until we can be together again, there is a empty hole that can never be filled by anyone but Bradley. What a blessing he was to my life for ten years. Thank you for him Lord....
Tuesday, January 6, 2004 4:53 PM CST Happy New Year to all.
Hope you enjoy the new photos, I am just learning to use my scanner and am not quite sure how to crop yet, sorry about that..
The opening photo is Bradley enjoying the snow right before Christmas. He did love it and have a ball. What you cant tell by the photo is that he can barely stand by himself now or hold things. He is very weak, but he tried his best to play in the snow throwing snowballs at his brothers and me. He is not doing good and like we said before it will take a miracle!! Devan and Gabriel are doing good, just lively little boys! Still have not received the results on Gabriels most recent blood work but he appears well. He will be going back to MN in March for his one year check up. The little boys play together a lot and do good, since Bradley requires all my time. It's a constant struggle for us to keep going as I know some of you who read this understand. Thanks to all who prayed for us during the prayer vigil and who continue to pray! God bless you all,
Love The Smiths
Wednesday, December 24, 2003 11:10 AM CST Today is Christmas Eve and its very tough. I thought I was up for it but the memories of last year and years past keep coming to mind. Despite my feelings the boys including Bradley are excited about Christmas, even though Bradley probably wont realize what he is getting or be able to play with it. His little hands are in such bad shape it hard for him to hold things. It breaks my heart. This week he has been really frustrated with trying to get across to me what he needs and wants. I try to understand but it very hard and we both end up crying. The other two boys are doing well and play together constantly. I thank God that they get along so well because most of my time is devoted to Bradley. Somehow even through all this pain I do believe God is still working his plan. I please ask that eveyone who reads this remember the boys during the prayer vigil Dec 26 and 27, and pray for them. Pray with all your heart like never before, knowing that God can heal them in an instant!! Thank you
Love The Smiths
Monday, December 8, 2003 1:57 PM CST Greetings to everyone. We are moving forward with the days of prayer for the boys and it has been so awesome to see Gods hand in it, and how he is working. He has put this together for his purposes and I know it will blow our minds. As this special time of year comes with Christmas, we just thank so many who are praying for us and thinking of our family too. So many of you I know and so many I dont but you all are a wonderful blessing to me. This week we are having a special "prayer" service for the boys on Wed evening. We will have several who have the gift of healing praying over our boys according to James 5:14-15. I am very excited and am looking for our miracle to come. All that we have been through will be worth it to be a witness and a hope for so many people. It is on my heart that our situation is for eternal purposes and I know God is able to deliver us. We love you all and wish you all a very Merry Christmas and Happy New Year!! God bless each one of you.....
CSmith
Tuesday, November 25, 2003 2:19 PM CST Greetings to all
We are getting ready to give thanks for the upcoming Thanksgiving holiday like many of you. It will be very different this year, but we still continue to believe in God's healing power and a perfect plan for our boys!!
Bradley has expressed his desire to be a fireman when he grows up and I am holding him to it. Gabriel just wants to be a "superhero" along with his little brother Devan. They play make-believe constantly and get so carried away in it.. Its great to have an imagination to escape to. Thats what I am doing also. Seeing my sons healed and returning to school and us giving praise to the Lord. Only its more than imagination, its a belief, a trust!
We are planning an upcoming 48 hours of prayer for Bradley and Gabriel. The dates are set for Dec 26 and 27, 2003. We are going to be wearing navy blue ribbons for that week and beyond! If those who check our website and lift us up in prayer would consider making a few ribbons and passing them out to show your support, we would greatly appreciate it. We are making and sending some out with our days of prayer information packet, but we are contacting to many people and churches to do them all.
Please check out the website for the days of prayer its: prayforthesmiths.org and should be up and running by Monday Dec 1, we also have a phone line for questions, to request information, to leave a prayer or words of encouragement. Its 812-967-6707 and should be up by the end of the week! I am hoping that many will feel led to lift up my boys to the Lord on these dates especially, but I want to thank all who faithfully pray daily for us. God Bless and Enjoy the Holiday...
Faith, Hope, and Love Christie
Sunday, November 9, 2003 3:21 PM CST Hello all,
We have been struggling lately to just cope with everyday life and thats why we havent written much. Seems that we have come over another small hurdle. Nothing has really changed as far as Gabriel and Bradley are concerned but I feel stronger. I have tried to keep my focus and perspective on God and the eternal! I know my boys will be healed, its just the "when" of it all; but nothing I can do can move it, its Gods time, and Gods plan. I try not to fall back into thinking of the past and memories right now because that seems to be the road to depression and breakdown for us. Bradley received his wish from the Wishing Well in New Albany, IN. He got a bunk bed with spiderman bedding. They also showered gifts on all the boys with toys, toys and more toys; plus a giant cookie! It was very nice and the boys were very happy. We have also allowed Bradley another little "wish" he wanted which was to pierce his ear like his cousin Brittany. He really likes it and thinks its cool!! Whatever makes him happy at this point. A wonderful lady from church Teeny took us all down to the mall and we got it done. Bradley smiled from ear to ear. Gabriel had his sixth birthday! He got a powerwheels JEEP which he and Devan ride daily, weather permitting. The party was overwhelming for Bradley with all the noise, its very frustrating. I think for that reason we are keeping Christmas simple this year! Me and my friend Cheryl are planning a day of prayer for the boys and are seeking local churches to participate. I will let you all know more soon. We have both felt it layed on our hearts to do something like this! God is able and we keep making our request known unto Him. Thanks for all the prayers and concern,
Much Love, The Smith family
Sunday, October 19, 2003 6:31 PM CDT Hello to all.
We have had a good weekend. Friday evening we went to the Cornicopia Farm in Scottsburg. They had said they would love to have the boys for a "semi-private" tour. ha.
It was great!! We went with our dear friends Cheryl and Larry Robinson and their kiddo's. The boys did the giant slide, played in the hay playhouse/fort, fed the baby cows milk from a bottle, petted the animals, and took a hayride to the pumpkin patch where they picked out a pumpkin. It went really well and I took lots of pictures, I hope to have some up on the website this week, so keep checking.
We spent Saturday at my parents house for my dads birthday. Bradley so enjoys seeing his cousin Skylar. He loves him so much, and talks about him often. Bradley ended up spending the night over there. Gabriel finally got his books on tape and started listening to a story on Jack and the Beanstalk last night, it will take some training to get him used to it. Today we went to church with friends in Louisville, and that was great!! We asked the Lord for his healing to make Bradley whole.. It was a very moving experience. God bless you all,
The Smiths
Monday, October 13, 2003 6:12 AM CDT Greeting everyone. This past weekend was pretty peaceful. The boys spent some time with their Nanny and Papaw on Saturday and visited with their cousins. Saturday evening we went over to our friends house and had a wonderful time. Bradley loves to visit Nathaniel!! What I wanted to add today is a story that occured this Sat night. To some it may sound silly or far-fetched but I believe it! Sat evening when we got home the boys were tired and Bradley was just really unhappy and feeling sad. I asked him what was wrong and he said he was going to hell because he had hurt Gabriel and made him get stitches (this was about 2 yrs ago, but he still encounters guilt over it). I talked with Bradley about how much Jesus loves him and that he forgives him. We prayed together and I asked Jesus to take away this burden on him and to let him feel forgiven. After that Bradley was very peaceful and went to sleep better than he has in the last month!! I went in and folded some laundry and while I was folding, I was praying, God please let him know you are with him, please just give this little boy something to see and feel that in his childlike way he will believe... I went to bed.
The next morning when Bradley awoke he said "mom, I saw something last night, when everyone was asleep". Well I was listening. I thought he might try to make his story sorta like Gabriels in the hospital with the "lights" but he didnt, and I knew he really had saw it or had a vision.
He said "it was red, like fire". (I'm thinking, yeh, the burning bush thing with Moses!!) He said he thought it was Jesus! He said it spoke to me and at first he couldnt remember what it said but after thinking on it for a while, he said it said "if you trust me I can help you and Gabriel" and "come with me". He was very specific about that and repeated it several times. Not follow me or go with me but "come" with me. I believe that God answered my prayer that very night about giving Bradley something to see and know God is with him. It was awesome and Bradley and I discussed it all day..
No one knows the outcome of our situation but by "faith" our family is believing in all Gods promises in the bible; that he has a plan for us and that he only brings good not evil. Regardless of our outcoming we know in the end Jesus will win and has the victory over death, evil,disease, and the devil. We believe what I John 4:4 says "we already have the victory because, greater is he that is in me, than he that is in the world". God Bless
Faith, Love, and Hope
Christie Smith
Saturday, October 4, 2003 7:57 PM CDT Today has not been easy. I really dont even know why I am putting this on the website, except to vent a little and get it out. We went to a friends birthday party today, it was a swim party. Upon arriving home all I could think of was Bradleys 7th birthday party that we had at the YMCA, a swim party. Like a big dummy I got out the video and watched. I just cannot believe what was on that video. What our mind forgets is captured forever in film! I remember that year, that Bradleys birthday fell in the middle of the week and his actual party was on Saturday, but me, Devan,and Gabriel gave him a little afterschool party on his actual birthday. It was precious. He was so happy, so excited, so full of life. He was joyous and thankful for everything he got, saying "thank you mom". Then his party on Sat. he swam and was just like a fish, he had so many friends it was wonderful. There was other footage of him feeding his 1 yr old brother part of his popsicle, he was so patient with him. I had forgotton the kindness, tenderness, gentleness, and love that is Bradley until I watched that video. The past year has been hard because he is so full of anger, jealousy, frustration, and sadness. I hope all of you who know Bradley and knew him before he got sick will always remember how full of love, life, and joy he was!!! How precious is this video right now to me, although it hurts. I pray for him to be restored to that wonderful little gentle boy again, it's my only desire!! How I wanted to step through the TV screen and start living life again....
C.Smith
Thursday, October 2, 2003 11:28 AM CDT Greetings to all. We have had an eventful time since last I wrote in this journal. Last Thursday I was taking Bradley to the hospital for X-rays, it turned out to be an all day thing. He did, in fact, fracture his foot at his 5th toe and was having pain and trouble walking, but the doctor said it would gradually heal on its own and did nothing. By the end of that I was exhausted, but had to come home and pack for my Emmas trip. I left that evening very worried about how the boys would do without me, esp. since Carlton had to work both Friday and Saturday. The weekend was wonderful, and as I keep thinking over it, it just seems better and better and that I was meant to be there! Our family contributed ,with helping ,with the boys and I am very thankful for that. Carlton did end up getting Saturday off, yeah PTL.. Upon returning Bradley came up to me and "sniffed" me and said "yep, mom's home" It was precious. I must explain that his sense of smell has been heightened since he has lost some of his other senses. Devan had a surprise 'scribble' drawing for me, and Gabriel just wanted me to hold him. I came home with a cold and was very scared about giving it to the boys. Devan asked if he could pray for me to feel better.
As the week continues I know the Lord is opening my understanding of things, and I feel a sense of freedom from my troubles and burden. Dont get me wrong, its still awful here daily. Seeing Bradley struggle with normal everyday things and him being to "independent and strong-willed" to allow me to help him. Seeing Gabriel wanting and wishing he could return to his school. Seeing Devan having to step up to the plate and become the "big brother". It's very difficult and I pray daily for help and guidance. I hope the school system will hurry up and start working with them to give them a routine and focus again. We keep going though, and day by day God sees me through. I love you all in Christ name and thank you for your prayers and support!!
Christie and Family
Wednesday, September 17, 2003 3:14 PM CDT Made it back from Minnesota last night. Gabriel did his MRI without sedeation, yeah... His chest CT looked good. I dont have the MRI results yet. His line removal went fine. The worst part was injecting the site with numbing medicine. The needle must of been 3 inchs long and then she used scissors to get the skin away from around the tube. Gabriel didnt feel a thing after it was numb, I was cringing!! Carlton and Diane probably would of passed out. It was pretty gross. Gabriel insisted on keeping the tube, so it came back to Indiana with us. He asked if he put it under his pillow would he get money?? Carlton said "yeah, the "tube fairy" will come and get it", I'm glad I would like to throw it away... Bradley and Devan missed us. They were very happy to see us. They both looked so different after just 2 1/2 days away from them. Today I met with the school and they are starting the ball rolling on getting services for my boys. The plan is to have a tutor come here, which I like. Over the next few weeks they will be doing some evaluations on them. I was very worried over the whole thing, but prayed (Deut. 31.8) about it before I left and just felt like it went very smooth and that God made a way for me. We continue to pray and have faith that the boys will be entirely healed by the mighty Hand of God.!! Thanks to all who continue the ongoing prayers and support for our family.
God Bless,
Christie
Monday, September 15, 2003 5:10 PM CDT Our first day in Minnesota and the weather here is cooler than back in Indiana. We got chilly last night and early this morning. We started our appointments at 7:30 this morning and just finished up at 4:00pm, we are wiped out. All the appointments went very well. I dreaded them today but they really left me feeling joy!! Gabriel had all his blood work taken; its a wonder he didnt pass-out!! They took about 8 tubes of blood. They will check his engraftment and we should know the results of that next week. His white count was down today to 3.4 but Dr. Grewal said he is not worried unless it stays that low. We will check it again next week, along with his sodium which was up a little. Gabriel met with the neuropsychology people to see how he is doing with his gross and fine motor skills, reading, listening, repeating, memory, etc. He is about average maybe a little below on a few things but his biggest limiting factor right now is his vision. They recommended getting him immediate help with vision, OT, Speech, and a tutor who can help him adapt and work around his disabliities. They are going to help me with our schools back home, but they both were very confident that Gabriel will do very well with the proper help while he is still young. I cant tell you how happy that made me feel!!! We are also seeking to get Bradley services much like Gabe's as well.
Gabriel will have his chest CT, MRI, and line removal tomorrow and hopefully by 7:30 pm we will be airbourne on our way home...yeah...
Carlton is doing good with the boys although its a handful when your not used to doing it all by yourself. He had a wonderful time at the Emmas walk and he is dying inside to talk with me about things. I go on mine in two weeks and I can tell these two weeks will be difficult for him, not to talk about it. In speaking with him last night I could tell what a tremendous impact the weekend had on him. Well I must go we are wiped out and have another big day tomorrow.
Keep the faith, love , and hope....
Christie
Saturday, September 13, 2003 9:28 PM CDT Well its off to Minnesota tomorrow afternoon. Gabriel and I will be flying in for just a few days, hopefully. Gabriel is having his Hickman cathedar removed, MRI done, chest CT, and seeing several doctors up there. I personally am not looking forward to the trip. The whole idea of Minnesota just makes me sick to my stomach anymore. We are flying and I am grateful we were able to do that. Bradley is doing about the same and I feel very blessed for that!!
Devan said "I will miss you mom" tonight and it broke my heart. The boys have missed their dad greatly this weekend because he went on the Emmas walk. It is a Christian retreat and he has been gone for 3 nights. Hopefully we will all be back together again next Wed. A wonderful friend of mine from church ,Mary ,gave me a book that is really blessing me and helping me to understand our situation from Gods point of view its called Hind's Feet on High Places by Hannah Hurnard and I strongly recommend it to anyone who is going through suffering and pain...
Will update when we get home, love and hope.....
Monday, September 1, 2003 8:27 PM CDT We had a nice holiday weekend. The boys have been doing pretty well. Saturday we went to town to look around and get some groceries and the boys spent the afternoon with Mamaw and Papaw. They enjoyed it. Sunday our friends Larry and Cheryl from church came over and the boys had a good time with their kids. Today we celebrated Nanny's birthday and the boys got to visit with their cousins. Bradley is holding steady-Praise the LORD!! He has lost weight and is starting to look more like Bradley. Gabriel is doing good. His engraftment is still at 90%-PTL!!
Both boys miss school and a routine soooo much. They have visited with some of their school friends recently and very much enjoyed it. Gabriel was so ready for school this year but now with his immune system being down and his vision problems he cant go, and it has really brought him down. He gets depressed some. He misses "his class" as he says.
Bradley is the same way. When someone says they have school tomorrow; it hurts him!! It cuts out my heart because they cant have the one thing they both desire so much. I am going to try to work with them or get a tutor or some help. I just keep waiting on the LORD to provide us with help or healing!!
Thats all for now.
Love The Smiths
Thursday, August 7, 2003 6:06 PM CDT As most of you probably know by now, our visit to Minnesota for follow-up did not go well as far as Bradley goes. Gabriel is holding steady and doing good. Bradleys MRI revealed that his disease was active again in his brain. We started out for home on Saturday morning and when we were 5-10 minutes away he had a seizure. We turned around and spent the worst day of my life at the hospital. We did return home Sunday evening; Bradley is on antiseizure medication. We have at this point run out of all earthly options for Bradley. It was our decision to discontinue treatment for Bradley since its not working. It was the hardest thing ever for us to have to accept that and decide that. It has been a very hard time for me and Carlton and our parents. We have discussed with Bradley that his treatment is not working. He is prepared to meet Jesus, and even anxious for it. I am so thankful to have that blessed assurance. I have not given up on The Great Physician for healing. I had a rough night last night and this morning I have been bombarded with loving people telling me to keep trusting, keep believing, and keep praying. People who call and say "I just wont believe that, I will keep praying for God to intervene". I call to mind the story of the Israelites when Moses took them out of Egypt to the Red Sea and the Egyptians were behind them ready to kill them and the hugh Red Sea was in front ready to swallow them up. To them it looked utterly hopeless with death in site; but God did a miracle and parted the Red Sea and saved them all. Thats how we feel. The disease is coming up behind us and theres a hugh hole in front of us ready to swallow us up! We are waiting for our miracle!! I am going to keep the faith, no matter what! We will receive our victory over this disease weather here or in heaven! Thanks to so many who regularly pray for us and support us.
Love The Smiths
Saturday, July 19, 2003 9:27 PM CDT Hello to all-
We are so thankful to be home. We have been home now about two weeks and although hectic, its wonderful. We go to the hospital twice a week for blood work and its going OK. Usually Devan stays with papaw while we go. We have done a little visiting to great-gramma's house and mamaw's house but not to much, we have to be careful with Bradley and especially Gabriel for "germs"!! We hang out at the house and have been cleaning out closets and picking blackberries. We have sooo many they can be picked almost daily. Bradley and Devan love to eat them. Devan enjoys picking them too. Bradley really cant pick them because he cant see well enough and ends up getting stuck.
Bradley was baptized tonight! It was so wonderful. I am so happy my oldest son is in the "family" of God. Gabriel was even asking if he could be baptized too, but I thought he was a little to young. We also had an anointing and prayer over the boys. It was a private ceremony with just us and the preacher and deacon who asks to Lord for special healing on the boys behalf. I am keeping the faith, and trusting in Gods power over this horrible disease. Everyone at our church have been so wonderful and so kind to us. There hearts are so open to helping us and caring for us. God has really given us some wonderful people who love us, and pray for us and never forget about our heartache.
There are people we know and people who only God knows who are faithfully praying for us and I am thankful for every little prayer or thought you are giving on our behalf!!
Jesus is King
The Smiths
Wednesday, July 9, 2003 10:15 AM CDT We are home!!! We made it in late Monday night, FINALLY.
I didnt think I was going to make my connecting flight in St. Louis because our plane was late, but thank the Lord they waited on us!! When we walked into our house, it looked so bright and beautiful. It all felt so new again.
It was an amazing feeling. We are going to get blood work drawn today at Clark Co. Hospital. Its very hard trying to figure out how the rest of our life is going to carry-on. It feels so crazy, it just really is sinking in, now that we are home. It's painful but we still have hope. Slowly, we will keep going one day at a time through Jesus.
Somedays I am ready to conquer everything and other days I just want to give up! Thanks for all who are caring and praying for us. Love
The Smiths
Sunday, July 6, 2003 1:51 PM CDT Yesterday Carlton left with Devan to head home. We loaded up the van with everything except what we could fit into two suitcases. They made it home around 4am this morning. We are anxiously awaiting the "all clear" to leave. We have an appointment tomorrow morning at 8 am.
The boys are bored here and ready for home for a while.
I know we will be coming back Aug 1st for another MRI on Brad and some checkups, but it will be good to be home for a couple weeks. It feels like we will never get back into a routine again. I know it will never be the same, but just to have a routine again would be welcome.
Love you all.....
Monday, June 30, 2003 8:36 PM CDT Today is 100 days for Gabriel, a milestone in the bone marrow transplant world!! He is doing good. We are still waiting on chest CT results and the engraftment results; will probably find out on Wed. We are hoping all is well with both, so maybe MAYBE we can come home this weekend. One problem is that Gabriel is still on IV antifungal meds for a few more weeks, but I think it can be worked out with a pharmacy at home. Bradley was having a terrible headache Sunday morning. He was in pain and crying so we called the doctor. We took him into the clinic and they checked his CSA levels. Then he went home and took a 3 hour nap. His headache was gone and he is better today, but the doctor wanted to see him today. They said his CSA level was high ( which can cause toxicity ) and they lowered it some. We also found out some not so happy news. The boy before him on the immunosuppression protocol has had his brain inflammation come back after 6 months. It left us stunned!! Now we are scared about what Bradley's future holds. There is a chance that his will also recur. We all decided not to wait the 3 months to come back for MRI check, but rather come back in 6 weeks instead, which will be Aug 1st. At that time we will decide what to do. We just feel like the bottom has dropped out from under us once again, and it is very difficult to comtemplate Bradley getting worse. Please keep praying for these little boys!!! Love you all....
Friday, June 27, 2003 8:12 PM CDT I was just reading some of the entries everyone has taken the time to post on our site and it really moves me.
Some of you I know as family,and friends and some of you are strangers to me, yet you care for us and our family.
It is so helpful to know in our darkest hour we have not been forgotten by God, he has given us you. Wonderful people who set there busy schedule aside to pray, call, and write to us. May the Lord bless you all. With deepest thanks and love,
The Smiths
Friday, June 27, 2003 7:43 PM CDT Hello to everyone.
This week has been full of excitement for the boys. My sister in-law and niece came for a visit, and Bradley, Gabriel, and Devan were so glad to see them. We have stayed busy this week with Brittany seeing the Rugrats go Wild movie, shopping, going to the indoor waterpark, bowling and maybe tomorrow to the zoo! Whew, not to mention BINGO last night. Bradley has tried his hardest at everything and Gabriel has done some things with us, but he gets tired easy and doesnt like to go places, because he has to wear his mask. Gabriel had an MRI Thursday morning and as far as I know "no change". Also Bradley's MRI last week showed he is "stable". Bradley got released to come home today and we will have to return in 3 months for an MRI and check up. His doctor at home will monitor his bloodwork once a week and we will have to watch his blood pressure at home. Gabriel MAY get to leave next week, it all depends on his chest CT Monday and his engraftment bloodwork that was taken on Wed. We have to make sure Devans cells are still growing in Gabriels marrow and that his lungs are looking good on CT. He is off the antibiotics but will continue the antifungal for another week. He goes back for blood work on Sunday because the antifungal meds messes up his potassium and they have to watch it close. He is feeling pretty good and very happy to see Brittany and Alex. We didnt get to see Alex to much because she went on with her g'ma and aunt but she will be back tomorrow night. Well thats all for now. Please keep the prayers going for these boys, they still need it!! We pray for recovery for both boys always.... Love you all
Thursday, June 19, 2003 1:59 PM CDT Hello to all,
Gabriel got out of the hospital on Tuesday and is doing well. They said his chest CT looked improved. He will be on an antifungal IV med, and a couple antibiotics for several weeks. Bradley is having his MRI on Sat morning.
We had a visit from The Robinsons from church on Tuesday and it was wonderful. We just talked and hung out for the day. Devan enjoyed playing with Charlie their son. Bradley took Lilly to the gym and showed her the doll house outside. I think they had a good time and it was wonderful for us to get to talk with friends from home. Well thats all for now, check out the photo gallery!
Love you all
Monday, June 16, 2003 1:59 PM CDT Hello to all,
Today Gabriel is doing better, he is talking up a storm.
We made him white cupcakes with white icing, because he was wanting them. He enjoyed them. Bradley and Devan came over to visit, Bradley just left with Carlton. Devan helps get Gabriel things when he needs them. Its so cute. Sometimes at night while Gabriel is sleeping he laughs so much and says Devans and Bradleys name. He must be dreaming about them playing or wrestling. It's absolutely the sweetest sound to hear...
Carlton spoke with the doctors today and they dont think Gabriels illness is cytolytic thrombi because it usually shows a much different picture on biopsy.?? They believe he did have some infection in there but that all the antibiotics and anti-fungal have killed it and what they biopsied just showed a pocket of healing normal lung tissue and no evidence of the infection. I dont know, I just hope he's better and we can leave. We are hoping if he doesnt get any worse we can get out of the hospital tomorrow sometime. He will require IV antibiotics and anti-fungal meds for a couple weeks after. The doctors want to wait and see what his chest CT shows today. We are waiting on them to call us down for it.
Bradley will have his MRI sometime this week and see his doctor again. His 3 month study is offically over on Wed. We will probably choose to leave him on his meds for three more months (because thats what the other boy ahead of him has done). It's really hard to decide.
It's so hard being here day in and day out, waiting on test results, waiting on doctors, sitting around, going to appointments, etc. and trying to find "quality" time with the boys. I just get really tired even though I am not doing as much as I would of at home. I guess its stress..
Well, please continue to pray for Bradley to have some recovery of vision and hearing, and for Gabriel to have his lungs healed and recovery of his vision loss also.
Thanks to all who check our website and care so much.
There are so many sick suffering families here, its unbelievable.....
Saturday, June 14, 2003 2:47 PM CDT Today is a beautiful day here in MN, sure wish Gabriel could enjoy it. He is feeling well today, he got the tube out of his chest from his biopsy yesterday and that made a hugh difference. Devan is here at the hospital visiting him and they are playing go-fish, and slap-jack and being so loud, and having a great time!! The biopsy results showed no definate diagnosis. No evidence of malignancy, no viral and no fungus. In talking with another parent at the RMH she said her son had similar symptoms like pulmonary nodules in the lungs,and fever that came and went. We are thinking it may be something called cytolytic thrombi which is nodules that develop in the lung and obstruct or collapse that area. It seems to be related to radiation and immunosuppression drugs. It is a rare sideffect of bone marrow transplant; but apparently not so rare that another boy at RMH has had it. The doctors have not confirmed this, but Carlton and I have done research and talked with others and we think it is cytolytic thrombi??
Bradley has an MRI next week and we must decide to keep him on the CSA or take him off; we both think we probably will leave him on it because the boy before him has stayed on it. Bradley will be able to come home after that. He says he wont leave without Gabriel... How sweet is that...
But, I am not sure how much longer Gabriel will have to stay now. We are worried Gabriel will get sick again on Monday night. He seems to get fevers every Monday afternoon and his white count has already started to elevate again which is what has happened the last three times prior to the fever. Please pray for his lung healing and for no fever...
Also there are various new technologies we have been researching to help the boys. One that Diane and Don were looking at is called ACT (Advancedcell.com) which does cloning with your own body cells so there is no rejection.
Pray that there will be something developed in the near future to help Bradley and boys like him and worse...
Thursday, June 12, 2003 10:29 AM CDT Gabriel's biopsy went as planned and he did well. He was in a substantial amount of pain after. Finally around midnight they found his level of pain meds and he started resting better. This morning he is very tender and had some more pain, so they have uped his dosage. He has a chest tube in draining out, and that is what's so painful. They may remove it today or possibly tomorrow.
We are waiting to see what the samples show. I am hoping it is something that is easily cured. I am scared. They were suspecting fungus. Please pray that they will get a diagnosis and that they will be able to treat it effectively.
Bradley's appointment with his doctor was cancelled yesterday afternoon, because Gabriels biopsy was at the same time. We wanted to be there for both, so we have rescheduled his appointment for Friday at 2:30. To bad we cant be cloned!!! Carlton drove all night Tuesday night and Wed morning to get here for Gabriels surgery. He was wore out. I am glad he is here though, I was feeling really stressed. Don and Diane are here as well helping out with Bradley and Devan. I really have not seen the boys very much, because Gabriel has been feeling so lousy.
I am going to try to spend the afternoon with them today.
Wednesday, June 11, 2003 11:40 AM CDT Today Gabriel is going to have some more tests on his lungs. They have him scheduled for a biopsy! We are scared about them actually cutting into him to get a sample, but they insist this is the best possible way to help him get better. It hopefully will give them an accurate diagnosis on whats going on in his lung. Bradley is doing good and will see his doctor this afternoon. It seems like the week at home did him well, he is pretty happy. He is talking my ear off and he is worried about Gabriel. I was so happy to see both Bradley and Devan.
I stayed with them last night at RMH and we talked and played. Please keep praying, there is POWER in it....
Tuesday, June 10, 2003 11:32 AM CDT Bradley and Devan are back here in MN, and Gabriel is anxious to see them. He did not get to see them last night because he was sick again. Around 3pm he started running a fever again. He also was vomiting. His fever finally broke around 4am but he is still running a low grade fever and has a headache. Today he is having his chest CT and I will let you all know how it goes. Please keep us in your prayers, for continued healing for these precious little boys who have been through so much already.
Bradley is having an PT/OT evaluation (physical therapy and occupational therapy) today around 1pm.
Saturday, June 7, 2003 8:52 PM CDT Bradley is at home in Indiana today and all this past week. He will be returning to Minnesota on Monday with his little brother Devan. His grandparents are bringing them and staying for a week. Bradley is doing pretty well. He has lost quite a bit of his vision, but is still on a lot of medication. Only time will tell if he can regain some of his vision or if the medicine is playing some part in all of this.
Gabriel has been in the hospital since Monday of this week. He was once again running a fever. It shot up in the afternoon on Monday. Prior to that he was just released from the hospital the Saturday before. He had a xray of his chest and abdomine. He had a CT of his sinuses and chest, as well as a bronchoscope of his chest. The samples they obtained are all negative so far, except for one bacteria that is normally present in the body. He also has a 1cm area in his right lung that they may need to biopsy if it has not shrunk by Monday on CT. He has had pneumonia in his right lung and a little in his left, which is being treated with anitbiotics. They also started him on an antifungal IV med this week and with that his fevers have virtually been gone. He had an MRI of his brain on Friday morning and we are still waiting for the final results. Gabriel is doing well despite all the tests, drugs, and scans. He is also having some visual problems as of late, approximately about a month or so. He still has the head shaking thing going on that no one can tell us what it is. He says he feels dizzy??
We are hoping that Gabriel will not have to have the biopsy, he has been through so much already.
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