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Tuesday, June 10, 2008 5:25 PM CDT

Well – A new posting – After 2 years……..
This might be a little lengthy and crazy – but it gets better toward the end…….
In my last entry back in 2006, we announced that we were pregnant and were so excited. Well, for those of you that do not already know, I had a rather complicated pregnancy that caused me to deliver at 27 weeks gestation. Brody Ryan Joiner was born late at night on September 5th, 2006 and he passed away the following morning. He was just too little and did not have the lung development to support his life. Needless to say, it was rather devastating and I was not sure that we would find our way out of it. I sat in that room in the hospital still groggy from the delivery and let yet another son go. You just can’t help but wonder how much a person can endure. But then I think of the boys and what they went through and what they endured. And all the other parents of children that have been through this horror and still walk it every single hour of every single day.
Well – as I have come to learn all too well, time has a way of marching on, whether you want it to or not. The Earth spins and the seasons change and truthfully, it still pisses me off. It makes me so mad that summer comes every year! Trevor is supposed to have his 12th birthday this year! Ross should be 6 RIGHT NOW! Brody should be in my arms and not laying with his big brothers waiting for us to join them someday. These are the sort of hysterical thoughts that run through my mind on occasion. Then I step back and remember the promises that I made. I promised all our boys that we would be fine. I promised them that we would never ever forget them, but that we would try to find a little joy and happiness, even knowing that it would always be tempered with sadness.
The thing is, I might not always succeed, but I always try to keep a promise. So, yet again with the help of Modern Medicine, we became pregnant in early summer of 2007. We knew this would be met with trepidation from some and great excitement from others, so we just sort of decided to keep it on the low down until we felt we were in a safe zone to make an announcement. Because of the complications with baby Brody, we were a little more cautious with this pregnancy and I was monitored pretty closely. We made our announcement when we pretty much could not hide it anymore. Then, on December 2nd, my water broke at just 28 weeks gestation. I stayed in the hospital another 4 weeks and delivered a little baby boy on December 28th. Born almost 2 months early and weighing in at 4lbs and 8 oz, he was exactly twice the size of Brody who weighed just 2 lbs and 4 oz.
He is a beautiful baby today – he weighs almost 16 lbs and pretty much can no longer be classified as a Preemie. He looks A LOT like Trevor and acts A LOT like Ross, aka The Bull. He smiles, cries, giggles and screams all day. He has big beautiful blue eyes and his daddy’s big hands. I can tell you that he has stuffed our house with every possible baby gadget there is. I can tell you that he has filled our hearts with so much pure joy that it is truly indescribable. I can tell you that those moments of joy can be followed by a moment of pure sadness that will rock you back to your core. Memories flash back and it hurts. Some day, I am going to tell him lots of stories and show him lots of pictures of boys that he will never meet on this earth. I am going to tell him that his big brothers were amazing little boys and that we loved them. Then I am going to make sure that he understands that we do not want him to be defined as Trevor and Ross’s little brother and by what happened to them. We want him to just be a happy boy and we will raise him just like we were raising Trevor and Ross. We want him to know that we love him not because he is their little brother, but because he is his own little growing person.
Because we want all this for him, this will be the final post from Joiner Country. I will leave the site up for a while so that families new to MLD might stumble across it. We wish to go about our lives with our baby boy and try to build a life for him. There are still many things that we have to come to terms with. I am not sure that I believe that what happened was God’s Will, as some like to say. I am not sure that I believe in the whole concept of “Believe it and you will Receive it” or “God will not give you more that you can handle” and all those other cute little catch phrases that you see on various needle points around the craft bazaars. I do, however, without a doubt believe in the true miracle of life. I do believe that I will see ALL our Boys again someday. I do believe that I will understand someday. I believe that when I look into the big blue eyes of our son, that for the fourth time, we have been given something special and I will not squander or question it. I will simply give Thanks to Him. It is just all that I have to give right now.

I make it sound a little like we have been miserable for these last 4 years and truthfully, we have not. We have managed to eek out a life. While it is so much different than pre-2004, it is a good life. We both have great careers and jobs that we actually like. We have great family and a very tight group of friends that will circle the wagons within a moment’s notice. We bought a boat and spend the weekends on the water at a nearby lake. We will be breaking ground on a new house hopefully by August. We finally took that trip back to Mexico. Neither of us care for the birthdays and going home anniversaries and the holidays will always be hard. We will always be sad and grief is just part of our fabric now. But we laugh as often as we can and feel less guilty about it every day.

When I write, I do it from my perspective, so I do not talk much about Joe. I do this mainly because he and I generally feel the same way about things. It is one of the uncanny attributes of our union. Without a doubt, we have had some rough patches and we knew after 2004 that the odds were stacked against us. We chose to fight through that and there were times that I was not sure that we would make it. Somewhere in all this, we did make it. Still to this day, I wholly and completely love him with every bit of my heart. To be really cliché, I can only hope that he feels a fraction for me of what I feel for him. I can honestly tell you that the light that I see in his eyes when he looks at his son almost makes my knees buckle. I was afraid that light had dimmed forever. Truett Boone Joiner has brought it back.

One last thing – in April, there was a press release regarding the FDA’s granting Orphan Drug status to a drug called Metazym. This drug is being tested as an enzyme replacement for MLD patients. I remember specifically stating back in late 2003 when we were diagnosed and I was reading everything that I could get my hands on, that in 5 years there will be great progress and they will get this dreadful thing figured out. While they are not there yet, they are getting closer every day. Another Modern Miracle? You bet.

Many Thanks to all – Goodbye from Texas,
Joe, Janet and Truett Boone Joiner
Angel Trevor Lee Joiner – 7/27/96-10/4/04
Angel Ross David Joiner – 9/20/01-2/28/04
Angel Brody Ryan Joiner – 9/5/06-9/6/06

Thursday, June 8, 2006 4:56 PM CDT

Hello all –

I know – unbelievable – but this update is really new! It has been 8 months since my last update, so I thought I would bring you guys up to date on a couple of things.

First – Joe and I are doing OK. All things are well here in Texas and it is gearing up to be a hot summer. The “season” is approaching and I am dreading it. Trevor’s birthday is coming, followed by Ross’s just a short time later, followed by Trevor’s going-home day. That period between July 27th and October 4th is really rough for me. It is hard to believe that Trevor would have been 10 next month. I so remember very clearly the day that he was born. But I also remember the day that he went home. Not sure which one stands out more, but we will try to celebrate each of them in their own way.

Second – We are “raising” the playground on June 17th. This will be a one day build that is supervised by the company that the equipment and structures were purchased from. I guess that I should make that a little more clear – “We” means Kids Kingdom. Unfortunately, I cannot take any credit for this. Cheri and Amy have found, researched and planned this whole operation. I do plan on attending the build and am excited to watch this project come together. I just feel so strongly that it is the legacy left by The Joiner Boys.

Third – Through the miracle of modern medicine, I find myself pregnant at the ripe old age of 40. Shocking! Not the way that I would have planned it, but the original plan did not work out too well for long-term growth…so here we are. Now – I can probably imagine what is going through your head – and the answer is no. There is no MLD with this baby. I am not going to get into too many details, but I will say that you would probably be amazed at what science and medical technology can do today. Luckily, we were in a position to be able to utilize these advances to ensure us a perfect baby without MLD. Thank you, God, for putting very specific talents in certain individual’s hands to help us with this process. By the way – I am just past 3 months and am due toward the end of November. We are very excited, but a little apprehensive also.

Please pray for the parents who struggle with this grief and sense of loss everyday. I can honestly say that it truly never goes away. There are times that it diminishes and times that is not as raw – but it is always there. You get up every morning and you wonder how you are going to deal with it during this whole new day – and you go to bed at night wondering how you managed to deal with it for an entire day. It is a never ending cycle and there are too many parents out there right now that experience this. I read the websites and visit with some and I just hate the fact that someone out there knows how this feels. Contradictory, because you would believe that it would make you feel less alone in your grief, but it almost makes it worse. No one should ever feel it.

Please pray for those families that struggle with special needs every day or have to make very tough decisions about those needs every day. You just have no idea how rewarding these kids can be, but there is heartbreak in it also. They need special prayers and thoughts.

We look forward to and enjoy the bright days. We look forward to our future and what it holds for us, and we rejoice in our luck with this baby. The way we see it is that this baby is already a miracle. Had the boys not been and not gone through what they did, then this baby would never have been. How is that for beating the odds?

There is no replacement for Ross or Trevor and there never will be. Our lives did not return to the way they were upon conception. The holes in my heart did not immediately fill. It was about creating a brand new space where you can channel and release some of what is in your heart.

My father grows watermelons on his farm. We walk around (actually he does most of the work) and thump the melons looking for the perfect one that is ripe, sweet and juicy. I like to think that the boys did the same thing and picked us out a good one and sent him or her to us.

Baking an MLD-Free Baby in Texas
Joe and Janet

Kim – keep getting stronger. I think about you every day. I want to talk soon when you are strong enough for a long conversation.

Tuesday, October 4, 2005 9:09 PM CDT

Hello Friends.

Yes, today was the day. Today marked one year that Trevor left this earth and made his way home. I re-live that day (and many others) almost everyday. And I think...And I wonder...and I go through all the "What ifs" and "If onlys" that you would imagine. Depending on my mood, the scenarios are all different. But I pretty much keep coming back to same end result. It all happened the way it was supposed to happen-and no matter what we did, it was still going to end just the way it was supposed to.

We both actually worked today and made it through the day. Usually, we take the anniversaries/birthdays off work and hibernate. Had a couple of close calls with the breakdowns, but all in all, we did pretty good.

Call it fate or whatever, but I get home from work tonight and flipping through the channels and the movie from 1992 called Lorenzo's Oil is playing on one of the movie channels. Guess I felt like a little punishment, so I watched it. I wish I had half to gumption that Augusto Odone has. What he did with ALD (sister disease to MLD) was amazing. But I would like to see a sequel. The movie ends with a discussion about re-myelination. That is the wave of the future. That is where the hope lies for the kids still fighting. For Max, Lucas, Anthony and Emma and all the rest that are just too many to mention.

As you probably know, we lost little Maddy Bates last month. Please say a prayer for her family. They were so strong and stood on rock-solid Faith. Richelle was one of my favorite people and Maddy had a smile that would light up a whole room.

Also, please pray for Maddie Trimper. Seems that little lady cannot catch a break. It is just not right for kids to feel so bad and be so sick.

I received some wise words from an incredible friend of mine that pretty much shares every little heartbreak with me. She said that she chose to celebrate today by remembering that what we lost here on earth, Ross gained in Heaven.

Still missing our boys in Texas
Joe and Janet

Wednesday, July 27, 2005 6:36 AM CDT

Happy Birthday Trevor.

Today you are 9. Today we will celebrate without you. It is still so hard to grasp that you are not here with us in body, but we know you are in spirit.

We will not forget the day that you came into this world and all the hope that we had for you. Likewise, we wil not forget your birthday last year and how we knew it would be your last one.

We hold closest to our hearts the day in 2003 that you turned 7. The Slip-n-Slide, Cake and Ice Cream with a couple of your very best friends over to stay the night. You were running around, jumping on the trampoline and laughing at everything. There should have been many more of those to days...and I am so very sorry that there will not be.

We will visit you today and remember. Without a doubt, it will hurt like you cannot imagine, but we will be thankful that your days are now filled with Slip-n-Slides and ice cream all day.

I Love You and miss you more today.
Mommy

Saturday, May 21, 2005 3:13 PM CDT

Quick update and SOS:

PLEASE PLEASE STORM THE GATES OF HEAVEN FOR MADDIE TRIMPER. She is having some really rough issues right now.
www.caringbridge/mi/trimpermld.

Friday, May 13, 2005 7:10 PM CDT

Hello, remember me?

Sorry for the delay (again) but I still have a little bit of trouble posting here. I check the guestbook everyday, but still find it hard to update. I know, it does not make much sense, but that is the way that it is.

Getting on with all the news.

We went to the One Step Closer walk in Allen in early April and it was a huge success. Last I heard, over $12,000 dollars was raised. Keep in mind that this money goes directly to finding a cure for MLD – so we consider this fundraising huge! It was so nice to meet Rhonda (Nathan’s mom) and get to share some time with her. The crappy part of this is that we are united in grief that is still a bit overwhelming. It was pretty emotional for me, but my group of pals were there to bring me back around. We managed to squeeze in some fun in the big city of Dallas and we just had a blast. I think that we all needed a cleansing weekend after the last few months. Make sure that you check out the Stennis Foundation website at www.stennisfoundation.org for more information on upcoming events. Remember, you do not have to actually walk to make a difference.

The 1st Annual Joiner Boys Memorial Golf Tournament was held on April 22nd and was a huge success also, even if the West Texas Spring weather did not cooperate. It was cold, cloudy and windy that day, but we managed to have a good time and raise some great money. 96 golfers raised a total of over $22,000 that day for building the tribute playground! Can you believe that?!? Plans are underway to start construction later this year and it is going to be wonderful. Thanks to all that came and played and donated. We are still honored and humbled that so many people remember….

We had some very special people come from North Carolina. Nurse Trish (Trevor’s primary at Duke) and Nurse Jenn B (Trevor’s co-primary from Duke) came and brought their husbands. We had a great time with them and threw a big cookout on the Saturday following the tournament. Hopefully, we showed them some good old fashioned West Texas hospitality by way of the grill and they will come back someday.

We also had a memorial/dedication service at Cooper Elementary last week. The 2nd grade class raised money and had a crabapple tree placed on the kindergarten playground along with a beautiful plaque. I have to admit that going into that school was really really hard. Watching and listening to 100 2nd graders raise their voice in song was just beautiful, but bittersweet. It was something that we will never forget.

As for Joe and I, we are doing pretty good. Still managing to get through the days. Some are easier than others. Mother’s day was pretty rough…again. Easter was rough…again. And we are nearing our 1st anniversary of leaving North Carolina and coming home. Things are just different now. Happiness does not flow out of our pores anymore, but we are managing to find it and embrace it. Anybody who knows me knows that I am not one for bumper sticker or refrigerator magnet wisdom so just bear with me here because I am about to get a bit mushy….I truly believe that the people in our lives is not what defines our lives but rather, it is our love for those people. Death cannot hinder or change that in any way.

Still loving those boys in Texas,
Joe and Janet

Friday, May 13, 2005 7:10 PM CDT

Hello, remember me?

Sorry for the delay (again) but I still have a little bit of trouble posting here. I check the guestbook everyday, but still find it hard to update. I know, it does not make much sense, but that is the way that it is.

Getting on with all the news.

We went to the One Step Closer walk in Allen in early April and it was a huge success. Last I heard, over $12,000 dollars was raised. Keep in mind that this money goes directly to finding a cure for MLD – so we consider this fundraising huge! It was so nice to meet Rhonda (Nathan’s mom) and get to share some time with her. The crappy part of this is that we are united in grief that is still a bit overwhelming. It was pretty emotional for me, but my group of pals were there to bring me back around. We managed to squeeze in some fun in the big city of Dallas and we just had a blast. I think that we all needed a cleansing weekend after the last few months. Make sure that you check out the Stennis Foundation website at www.stennisfoundation.org for more information on upcoming events. Remember, you do not have to actually walk to make a difference.

The 1st Annual Joiner Boys Memorial Golf Tournament was held on April 22nd and was a huge success also, even if the West Texas Spring weather did not cooperate. It was cold, cloudy and windy that day, but we managed to have a good time and raise some great money. 96 golfers raised a total of over $22,000 that day for building the tribute playground! Can you believe that?!? Plans are underway to start construction later this year and it is going to be wonderful. Thanks to all that came and played and donated. We are still honored and humbled that so many people remember….

We had some very special people come from North Carolina. Nurse Trish (Trevor’s primary at Duke) and Nurse Jenn B (Trevor’s co-primary from Duke) came and brought their husbands. We had a great time with them and threw a big cookout on the Saturday following the tournament. Hopefully, we showed them some good old fashioned West Texas hospitality by way of the grill and they will come back someday.

We also had a memorial/dedication service at Cooper Elementary last week. The 2nd grade class raised money and had a crabapple tree placed on the kindergarten playground along with a beautiful plaque. I have to admit that going into that school was really really hard. Watching and listening to 100 2nd graders raise their voice in song was just beautiful, but bittersweet. It was something that we will never forget.

As for Joe and I, we are doing pretty good. Still managing to get through the days. Some are easier than others. Mother’s day was pretty rough…again. Easter was rough…again. And we are nearing our 1st anniversary of leaving North Carolina and coming home. Things are just different now. Happiness does not flow out of our pores anymore, but we are managing to find it and embrace it. Anybody who knows me knows that I am not one for bumper sticker or refrigerator magnet wisdom so just bear with me here because I am about to get a bit mushy….I truly believe that the people in our lives is not what defines our lives but rather, it is our love for those people. Death cannot hinder or change that in any way.

Still loving those boys in Texas,
Joe and Janet

Friday, February 18, 2005 7:53 PM CST

Hello all! I know that you are going to find this shocking, but your eyes are not deceiving you, this really is a new update.

Sorry for the long period of time since my last update (MZ. BROWN) but as you can imagine, it is not an easy thing to do. With Christmas and the New Year and just the month of February in general - I just did not feel up to it. And for those of you that do not know, I am a CPA and the company that I work for has a 12/31/04 fiscal year end - so I was pretty busy during the entire month of January.

Things are going well. Christmas was really really hard. I guess that I did a little better than I expected, but not as well as I had hoped. I was really dreading the actual day of Christmas, but as it turned out, Christmas Eve was the tough one. The boys headstone was placed that week and the drama queen in me came out and I realized that would be the last Christmas present that we would give them. Like I said - drama!

We still have good days and bad days, but it seemed as if the really bad ones were coming a little less often. Then February happened along....

As for the great news - the golf tournament fundraiser has been firmly set for the 22nd of April. We are excited about this event and what it means to the boys memory. Sometimes I am afraid that people will forget how these two boys fought so hard and brought so many people together. I refuse to let that happen.

So to all you golfers, and even non-golfers just looking for some fun, I ask that you join us. The proceeds will go to the building of the memorial playground and will be tax-deductible. You can email me at the address at the bottom of the page or also email Amy or Cheri at kidskingdom@nts-online.net. These two girls and the Kids Kingdom parents are really the ones that have put all the work into it.

Of course, something as big as we hope this will be cannot happen without a message. We are hoping to spread information regarding new born screening. Did you know that the state of Texas tests for a whopping 5 diseases? We call ourselves The Great State of Texas and take immense pride in being the biggest and best - but we rank just about dead last in taking care of our babies. For you followers, you know that this is an issue that I do not take lightly and I am really ticked at our legislators or state governments. They are so gonna hear from me! I admit that I lost my voice for a while and maybe the month of February will see it return. I need an outlet anyway, so who better than a politician, right?

In other news, me and my group of gal pals are going to the walk in Allen Texas on April 9th. This walk will be raising funds for continuing research in finding a cure for MLD. We are honored to be included in this also. Rhonda and Trish - we are coming! Thanks for thinking and including us.

That is about it. No great and inspiring words. Just trying to get through each day with a little more laughter than the last one. Some days it actually works....

Still lots of tears in Texas,
Joe and Janet

Bull,

Mommy did pretty good till just now. It is hard to believe that last week marked a year since I held you that night before going to PICU. I have replayed those last days/hours/mintues in my mind so many times and I long for a do-over. The comfort that I have is knowing that you are with Trevor and so many other kids. Another few days will mark a year since we let you go. It was the hardest thing that we ever did, but we know it was the right thing for you. We wanted to wish you Happy Going Home day. Happy No More Ouchie day. Happy Bubble-Gum and Dinosaur Books All Day Long Day. Maybe if you took a minute from playing, you could put a word in for Queen Maddy, Lucas, Max, Maddie and Sam, Dominic, Dennis, Emma, Jason and Kyle. There are too many to name, but you get the picture. Play nice with Trevor. We will see you in a heartbeat.

Mommy

Monday, December 13, 2004 7:13 PM CST

Believe it or not, I almost forgot my password to update!

Hello all, I hope that you are all have a wonderful holiday season. Our season is going OK-all things considered. Joe has been in Las Vegas this weekend for the National Finals Rodeo and he returns tonight. This is an annual guys trip, so I was not invited. Guess I am going to have to plan a girls trip soon.

This started out as a short update and turned into a long and preachy post. I apologize for that in advance.

We are busy planning the fund-raising golf tournament for the spring. We have set a fairly firm date for April 22nd, 2005. We are very excited about this project of the memorial playground. It will be a very fitting tribute to the boys. We have met with a local foundation to partner with them so that some of the corporate sponsorships will be tax deductible. I guess this is a word of warning to our peers/colleagues/friends that we are about to hit you with requests for a sponsorship. The really exciting part is that we are talking about making this tournament an annual event and a collective group of us will pick a “pet” project each year. For those of you that have read some of my previous posts, you will know that newborn screening is a matter dear to my heart as well as the family life program at Duke. I would suspect to see those on the list in the coming years, just to name some examples.

Emma McGregor, Trevor’s California sugarmama, has been at Duke this past week for her follow-up studies. Things are looking very very well for her and I am so excited for her and her family. As with the Trimpers, it just justifies what we tried to do for our boys. Lately, I have been having some serious doubts. Between Emma and the Trimpers websites these last few days, those doubts have pretty much been erased. Still wondering why it did not work for us, but someday we will have those answers. I guess it is all part of the grieving process, wondering what I could have done differently, what I should have done better and why it was not enough. Speaking of the Trimpers, Maddie has been on the unit at Duke with a couple of problems. She is getting better and we hope that she will be home for Christmas.

Another little Maddy (Bates) that was on the unit with us is having some trouble. Her parents found out a few days ago that her Leukemia has relapsed. Please say a prayer for her and her family as they really need it right now. She is just the most adorable little girl and I have vivid memories of her watching her DVD’s with that ever present pacifier in her mouth at the clinic at Duke. It is amazing how these little babies undergoing transplants can all kinda look the same with their "chemo tan", bald heads and swelling from the steriods and there were times that I saw Ross in Maddy. Her mom, Richelle, was a great comfort to me after we lost Ross. You can see her website at www.caringbridge.org/ca/queenmaddy.

So many people have written to me and said how they are living their life differently after witnessing what we have been through this last year. While we are honored that so many people have been touched by the boys and their journey, to tell you the truth, that is not what we want. We do not want you to live your life in fear of tomorrow and what it might bring. We want you to embrace your tomorrows. Tomorrow brings us one step closer to…everything. One step closer to a cure for this nasty disease. One step closer to understanding everything that happens in our lives. One step closer to being reunited with those that have gone before us. We know that we will see our boys again. It hurts like you cannot even imagine to not have them here with us today and they are constantly on our minds, but I know in my heart that we will be with them again...tomorrow. Sure, hug your kids a little tighter and don’t ever take anyone that you love for granted, but do not be afraid of what may or may not happen. Life is going on around us all the time and while I admit that there are times that I want to scream at that fact and wonder how the world could possibly DARE to continue to spin without my boys in it, more often, I take much comfort in knowing that it will and it does.

The easy thing to do would be to crawl in bed and never get out, but the world is waiting for us. Tomorrow is coming....

Still hurting and grieving, but trying hard to practice what we preach in Texas,
Joe and Janet

Thursday, November 4, 2004 8:33 PM CST

Surprise Surprise

Hello everyone. Sorry that I have not been updating for a while, but I am sure that you can guess that it is not an easy thing to do. As a matter of fact, I will not be updating on a weekly basis anymore. I am going to move to a monthly basis and see how it goes for a while. Truth is, there is not much to tell.

Joe and I are doing pretty well I guess. We both went back to work full time on the 8th of October. Those that know us know how we both hate to sit around staring at the walls. I have to say that it has been good to get back to work and it is great therapy for me. I do really well until it is time to go home and I realize that no one is depending on me or waiting for me to come get them. Big lifestyle change from the last 8 years and I am not sure if I will ever get used to it.

We have taken a couple of trips. Spent 4 days in Vegas for Joe’s birthday in late October and that was really fun. I love that town. We have spent a couple of weekends at the lake also. Again, just trying to not be still for too long.

Cooper Elementary is going to plant a tree on the Kindergarten playground sometime soon and placing a bronze plaque in memory of Trevor. We will be attending the ceremony for this in the coming weeks.

The plans for the memorial playground are coming along. We will be having a gold tournament at the new Rawls course in the Spring to fund this project. We are shooting for the moon and will see how we come out with funds raised. Thanks again to all that gave in Trevor’s memory.

We are thinking of taking some sort of trip around Christmas. Part of me wants to stay here and be with the family, but the other part of me wants to be really far away. I am not sure how that will work out, but I guess that we will have to face the fact that we cannot run anymore. After a stupid holiday like Halloween, I cannot even imagine what the upcoming holidays will be like.

November 12th we received Trevor’s diagnosis and November 20th, we received Ross’s. I will never forget those days.

Ok friends, that is about all that I can handle for tonight. Thanks so much for continuing to check on us.

Good night from Texas
Joe and Janet

Boys,

One month ago today, you two were finally reunited. We are so glad that you are together. Mommy and Daddy still feel both of you all around us and not a minute goes by that we don’t long to feel your little hands in ours. We see the signs and hear the noises that you send to us. We love you and will see you soon. Take care of each other and play nice, especially you, Ross.

Friday, October 8, 2004 12:09 AM CDT

It is done. Our babies are both at peace, side by side in their finally resting place, and side by side with our Lord...together..finally. We are not sure where we will go from here, but we will continue to take it one day at a time and see what happens.

I wrote a letter to Trevor and our family and friends that was read at the service yesterday. Thanks to the many that came and that sent flowers and food. We will always remember all of you as you helped us get through this day. To our extended Caringbridge family, although you were not here in physical being at the service, we felt your presence as you mourned with us. Below is the letter for those of you that could not attend.

Trevor:

We are sure that you are wondering why we are so sad today. The hardest part of losing you was losing your future and all that you could have been. We were constantly looking forward to the things that you would accomplish. We have your past and we will hold it close to our hearts, but we wish so much that we could have had your future. As your parents, we looked forward to even the little things that you had yet to discover in your life. At the same time, we are sad, we are angry, and we are joyful.

We are sad that you will not be with us anymore here on earth. We are angry that you were chosen for this path. We are joyful that you did not understand what was happening.

We are sad that you will never get the opportunity to chase that little girl who might have caught your eye. We are angry that you will never feel that first rush of young love. We are joyful that your heart will never be broken.

We are sad that you will never learn to drive. We are angry that we will never get to help you pick out that first pick-up. We are joyful that we will never have to worry about you getting home safely.

We are sad that you will never enter your first roping. We are angry that you will never know how it feels to win your first roping. We are joyful that you will never know how if feels to lose your first roping.

These are some of the little things that we will miss. Mostly, we are sad that you did not understand the overwhelming love that we have for you. We are angry that you are not here to receive and embrace that love. We are joyful that you NOW know exactly how much you are loved here on earth. We are joyful that you NOW understand what true unconditional love is. We know this because you are in the kingdom of Heaven, reunited with Ross, and God’s promise to us is everlasting love. God is love. We are joyful that today, you finally understand.

So with that love, we send you on your way. We send you with the promise that we will be reunited. It will seem like an eternity without you here, but someday, we will all be together again.

Godspeed Trevor.

There are a few people that I want to specifically recognize here today.

To Cheri and Amy and the gang at Kids Kingdom. You will never know exactly what you have gave us over the years, especially the last few months. You looked at Trevor and did not see any limitations. You took him everywhere the other kids went and made him feel like he belonged. You looked at him and saw a kid that wanted to go swimming with the others, so you took him. Not only did you take him swimming, but you took him off the high dive. You looked at him and saw a kid that wanted to go to Joyland with the others, so you took him. Not only did you take him to Joyland, but you took him down the log ride…twice. I could go on and on, but you are special people, and one day you will be rewarded. Thank you.

To Fritz and Jon-Aaron. I knew that when Trevor called for you guys in the middle of the night, that he must have loved to be with you. I cannot begin to tell you what I have learned about compassion and acceptance from the two of you. To know that Trevor was safe with you made a huge impact on our lives. If not for the two of you, our last few months would have been totally different. Thank you.

To Dr. Douglas Klepper. We could not have made this journey without you. You never once questioned our wishes or what we tried to do. You stood beside us every single minute of this ordeal and held us up on more than one occasion. You listened to every single word that we said, from the very beginning. I have no words other than Thank you. You are now a part of our family.

To our friends and family that have rallied around us during this last year. We knew that we had some good friends, but we understand now that we have some GREAT friends. Again, there are no words other than Thank You for standing up with us and fighting and praying. Even when we received bad news over and over, you never turned away and never gave up. We will always remember.

Thank you from Texas
The Joiners

Monday, October 4, 2004 10:43 PM CDT

Friends,

Today, at just a few minutes past 7:00pm, Trevor Lee Joiner joined his brother in the kingdom of Heaven. We are thankful that our prayers were answered this one last time.

We have been preparing for this day the best that we could. We are relieved that he is no longer suffering, but our hearts are sad. We know that he is finally delivered and that he is running and laughing with Ross this very moment. We are sure that Ross was very excited to see him.

Trevor's passing was very calm and peaceful. He was flanked by his mommy and daddy. We sent him home with a message to carry to Ross...that we will both join them when we are finished here.

I am not sure what Trevor's purpose in life was, but I am sure that he fulfilled it and that it was time that he go home. I would much rather him be here with us.

He had a smile that could get him out of trouble..quickly. He had a full belly laugh that could make you stop what you were doing to just listen. He had a personality that would melt your heart in the first few minutes that you met him.

I remember a time that we took Trevor to a steak house when he was about 4 years old. He was all dressed up in his cowboy jeans, boots and hat. We had to wait for a table so we were hanging out in the lobby. He saw a TV airing a rodeo in the bar, so he just went ahead and let himself right in and made his way to a table and sat right down and started watching it. The problem was the table was occupied by another couple and the gentleman happened to be wearing a cowboy hat also. I tried to explain to Trevor that those people were strangers and that we were not allowed to sit with them. He explained to me that it was OK because the man was a cowboy and they were going to watch the rodeo together. So he sat there and watched the TV and talked with these people until our table was ready. To this day, we still hear from them occasionally. He has just that kind of kid.


Thankful, happy, sad and grieving...again...in Texas,
The Joiners

Thursday, September 30, 2004 10:01 PM CDT

Thursday again...and I am late...again.

Sorry for the late posting, but we got a litte busy around here.

Trevor has just been doing awesome the last 10-14 days. He has been very active and has been at Kids Kingdom every day. KK even took him to the fair yesterday and he had some fun looking at all the animals and I could smell the corn dogs on him when I picked him up. We drew labs yesterday and, aside from a couple of minor things, they looked better than they have in weeks, maybe since we started this whole ordeal.

Not so good last night. In typical transplant fashion, he spiked a fever at close to 105 during the night. Due to the rain, Joe was able to stay home with him and we thought that he was much better this morning, hoping that it was just one of those weird things that happen in post transplant life. By early afternoon, he was at it again and his fever went back up. Dr. Klepper came out and drew labs again tonight and they are looking strange again. Couple of the results really concern us, so we will probably try them again tomorrow just to double check. What it comes down to is that Trevor is pretty sick right now. I will post sooner than next Thursday if there is any new news.

Thanks for all the encouragement on the guestbook and emails after my last post. I tend to have these really passionate moments about several things. Newborn screening is obviously one of those, along with working to find a way to treat this nasty disease. That is why the fellowships as Duke that the Trimper team made possible are so important. Total and complete eradication of this beast is my dream. I am not sure if it will happen in my lifetime, but I know that it is possible. Someday...

We are expecting some company tomorrow from North Carolina. Trish and Jenn B are coming to see Trevor. He is so excited and so are we! I was so hoping that he would continue on with his streak of feeling so good, but who better to see him while he is sick than his nurses? Trust me, they have seen him when he has felt a whole lot worse. If you recall, Trish was his primary and she could get him to do things while we were in the hospital that he refused to do for me. Jenn B was one of his co primaries and he always liked to touch things right after she had cleaned them with alcohol so she would have to start all over. I think that was his way of keeping her in his room! We wish that we could see all of the gang again. After spending 123 days in the hospital, I can tell you that the nurses and staff on 5200 really left an impression with us and we think of them often. I would love for our paths to cross again some day, but would like for it to be a different path.

Trevor needs some special thoughts in the coming days.

Waiting for our North Carolina guests in Texas,
The Joiners

Friday, September 24, 2004 9:50 PM CDT

This will be a long one.

OK-Sorry that I did not get a chance to post last night. My schedule has been a little off this week. Joe and I took some time off on Monday as neither of us were really in the mood to work. I know that I would not have made a significant contribution that day. We miss Ross more than you can imagine and I remember vividly the day that he was born. I remember watching the 9/11 fund raising telethon in the hospital while holding Ross and promising him that I would try to make sure that he would not have to experience anything as devastating as that day. My emotions were running high - thanks to the hormones - and I remember wanting to shield him from anything terrible and devastating. He represented hope for future generations. I still have that hope...just in a different way now.

Trevor has had an awesome week. He has felt so good and has been sleeping so much better than in the past couple of weeks. He has gone to daycare for the whole week and has stayed all day! He has worked hard at PT, OT and Speech. He continues to be a Dr. Pepper junkie, but is eating less and less, mainly just a couple of little bites every now and then. We did get him back in the hot tub last night for the first time in a couple of weeks and he just laughed and had a great time. It is so good for his flexibility. We are constantly amazed at how loose he is after he has been in the tub.

OK-now a matter that is close to my heart. I am reprinting an article from the AP that ran yesterday about newborn screening. When we began this nightmare last year, I felt that I had to find my voice. I really set that aside after we were admitted to the hospital. I am not sure what my role, if any, in this will be. It may be only right here, to let the people that visit this site and support us know that something needs to be done.

How would newborn screening have helped? Well, it would not have helped Trevor other than we could have sought treatment sooner. Research has shown that transplants soon after birth are much more successful and there is a higher survival rate. Also, we could have caught it before he ever became symptomatic. That would have been key to his quality of life. Also, Ross would have been in our life in a different way. We are so grateful that we had him, even if for such a short time and there is no way that I would replace a single minute that I had with him. BUT...we would have had him healthy. We would have asked science to help us, or we would have gone outside our own ability to create. We would have stopped this disease here in our family the day that Trevor was born. The proposed testing does not include MLD, although it does include some in the same family. It is not a perfect answer, but it is a start.

Newborn screening is a must. I can also tell you that it should be mandatory, not optional. I remember how I felt the day that I had both my kids. I was bulletproof and ten-feet tall. I was a powerful woman on those days and nothing could possibly have been wrong with my PERFECT babies.

Ok-now I am probably going to make some of you angry. I can tell you that I love the Lord and am very comfortable in my faith. I have been extremely angry at God and have shaken my fist and yelled at him on more than one occasion. I can tell you with complete certainty that I will do it again some day. I can tell you that I have thanked God for every minute that I had these boys. I can tell you that I thanked him again for delivering Ross when he did so that he no longer suffered. I can also tell you that never once have I denied him and never once have I strayed from having him in my heart. I am still in the process of making peace with God. BUT the thing is, I honestly do not believe that religion should play a part in something as important as newborn screening. Every person, be they christian or agnostic, should have this incredibly important information put in their hands. And getting the information would be so simple.....article is below.

Finding my voice again in Texas,
The Joiners

Sep 23, 8:28 PM EDT

U.S. Advisers Endorse More Newborn Tests

By LAURAN NEERGAARD
AP Medical Writer
WASHINGTON (AP) -- States should test every newborn for a core set of 30 rare but devastating inherited diseases, a government advisory committee recommended Thursday.

Advisers to Health and Human Services Secretary Tommy Thompson endorsed a long-awaited study from leading geneticists that called for the 30-disease check, although exactly how to implement the change is still under discussion.

Thompson now will consider whether to accept that recommendation; a spokesman couldn't say how quickly a decision might be made.

In the meantime, the endorsement likely will increase pressure on many states to add to the amount of newborn testing they currently offer.

There's tremendous geographic variation: Fifteen states require testing for five or fewer of these diseases, 19 test for 25 diseases or more, and the rest fall in the middle, according to the U.S. National Newborn Screening and Genetics Resource Center.

"There's evidence that states are not moving ... and that babies are dying," said University of Miami pediatrician Dr. R. Rodney Howell, who chaired the federal advisory panel.

Today, every U.S. baby is tested for two rare diseases that can cause retardation if untreated: hypothyroidism and the metabolic disease phenylketonuria, or PKU. Most also are tested for sickle cell anemia, a blood disease.

But with a single drop of blood, new technology can check babies for several dozen other serious, sometimes life-threatening genetic diseases, many with such tongue-twisting names that they go by acronyms, such as MCAD. Each is very rare, but many are treatable if discovered early - and for others, knowing one child is affected can influence whether parents have another.

The testing costs about $50 per person, covered by insurance, but requires states to invest in expensive equipment and training of lab workers.

At the federal government's request, the American College of Medical Genetics studied which of 84 genetic diseases come with accurate enough tests, and for which early diagnosis is important, to recommend for standard screening. It settled on a core list of 30.

Thursday, the federal advisory committee endorsed that report on an 8-0 vote, with two abstaining. The advisers will continue to study how to help states finance increased testing and how to educate parents.

Parents' groups are lobbying federal and state governments to end the geographic disparities, and welcomed the recommendation.

"I'm extremely excited that it looks like babies will get the help they deserve," said Jill Fisch of the Save Babies Through Screening Foundation.

Meanwhile, expectant parents who live in states that don't screen for all 30 diseases can buy test kits from private screening laboratories to bring to the hospital on delivery day. That supplemental testing costs $25 to $100, depending on the lab.

For more information on state test requirements and supplemental testing, check a national database at http://genes-r-s.uthscsa.edu . The March of Dimes lists the 30 diseases at http://modimes.org .

Monday, September 20, 2004 11:05 AM CDT

Happy Birthday Ross.

I have written to you several times, but most of that is private and between you and me. But I wanted to let you know that we miss you more today. It hurts more than you can ever understand that you are not here to celebrate this day with us.

The hardest part of losing you was letting go of your future. As parents, we are constantly looking forward to what tomorrow might bring for our kids.

While we are so sorry that you are not here, honey, we are so thankful that you will not ever have to endure what Trevor has. Trevor was and still is your hero. He will be with you soon and you two will be together forever, as you should be.

I read on another child's page that to take sorrow out of death, you must take love out of life. Let me tell you, little Bull, you were loved immensely.

Mommy,Daddy and Trevor love you and still miss you!
Remembering you always!
Love,
Mommy

Thursday, September 16, 2004 8:13 PM CDT

Hello friends,

Busy Busy Week. As I told you last Thursday, Trevor was not feeling well and had run a fever of around 101. Well it got progressively worse as that evening wore on and he spiked at 105.1 that night and into Friday. We drew labs and cultures on Friday and I was convinced that it was a Staph infection, but it turned out that he had a minor skin infection, if you call 105.1 minor! These little infections that you and I get all the time and usually do not even know it can wreak major havoc with Trevor. We had a pretty rough weekend with him and we had to keep him pretty sedated.

Joe stayed home with him on Monday and I took a shift Tuesday. By that day, I could finally start to see some improvement. One time when I was up with him during the night on Tuesday, he was asking for Fritz and John-Aaron who are the guys that he hangs out with at Kids Kingdom. I took that as a sign that he was ready to go back so off we went. He stayed at Kids Kingdom all day yesterday and today and he looks and feels so much better. That Vancomycin is some serious stuff!

Maybe we are finally getting our groove back and this next week will go smoothly. We have learned to not plan to far in advance and really just take life 30 minutes at a time. For those that know me also know that this approach is tough for me.

Joe and I are still working and going through the motions each day. Again, our work is great therapy for both of us and it allows a little escape. Life is so different for us and we are still adjusting. Simple things will really hit you sometimes. I went to the grocery store today and walked down the snake aisle and realized when I got to the end that I did not pick up one single thing. Not a single box of fruit roll-ups, nutri-grain bars, or pop tarts. No juice or kool-aid. Things like this is what I mean when I say life is forever changed.

Still adjusting in Texas
The Joiners

Thursday, September 9, 2004 8:42 PM CDT

Thursday again…already.

Trevor has had an OK week. It started off really well and we had a pretty good holiday weekend. Tuesday and Wednesday he stayed at Kids Kingdom all day and was pretty happy during the evenings. Not quite sure what happened late last night, but it all kinda fell apart…again.

He was really having trouble sleeping last night and was very restless and was up early. We took him to Kids Kingdom this morning, only to pick him back up right after lunch and make a trip to see Dr Klepper. He was running a fever of around 101. We could not really isolate the source and we checked all the hot spots, so we are pretty sure that it was something viral. All parents really hate that word because it means just sitting around and waiting for it to go away. We did start him on 24 hour fluids to try to flush it out. He is resting pretty comfortable this afternoon and hopefully that will last into the night.

I still have not been able to get him back to School so that he can see all the kids. I had heard they had chicken pox making the rounds last week and I did not want to risk that. Maybe I will get there sometime in the next couple of weeks.

September 8th, 2003, we marched into Dr. Klepper’s office feeling a little foolish and sure that there was nothing seriously wrong with Trevor. We had noticed that he was a little more clumsy and uncoordinated. Trevor has always been so dang skinny and he had these really long legs, so we were sure that he would just growing into them. When we started the school year, his teacher said that he was seriously lacking in fine motor skills also. The two of these combined really made us wonder and we decided that maybe we need to have Klepper take a look at him. We knew before we left his office that day that he had some ideas, but wanted to wait until he was sure before he shared them with us. Trevor had an MRI on September 15th, 2003. We knew at that time that something was really wrong…and it was serious. It would take another 58 days to get a final diagnosis of MLD for Trevor and 8 more to get Ross’s test results back. Ironically, 100 days from his diagnosis, we would lose Ross. Man, I miss that baby.

Here we are, another 365 days later, and life is forever changed.

Marking time in Texas,
The Joiners

Thursday, September 2, 2004 9:03 PM CDT

All is still very well here. Trevor has had a great week and has been in the best mood. He deserves it after the pure hell he went through for the last couple of weeks.

Dr. Klepper came out today and checked him over. That was the first time that we had seen Dr. Klepper in 7 whole days, which has been about the longest stretch since we returned home. The great news is that we finally got clearance to get back in the hot tub. It was a little late tonight, but we are going to be hot tub junkies around here this long weekend. Margaritas and Hot Tub for everyone! He has been really stiff lately, so I am hoping it will help him.

We are slowly getting more comfortable with his G-tube. I am not sure if I said before, but the Gastro doctor was pretty horrified and the condition of his esophagus. I think that his exact words were "it is just torn up". I had expected this from all the puking that we went through for months and his crying when he would try to eat anything other than very soft foods. There is not much we can do about it and I really don't expect it to heal much, but we did start on some IV pepcid to try to get the fire tamed a little down there.

Life on 5200 (the transplant floor at Duke) is a life-changing experience. Even though we have been home since May, my memory of it is still very vivid. I still hear the noises and see the faces of the staff and other terrified parents. Even with our results on 5200, I have an overwhelming feeling of being part of that place, of having left our mark there. The things that they do are amazing. During the dark days after we lost Ross and learned of Trevor's engraftment failure, what kept us sane is watching kids and families walk out of there. On days that we watched a family leave, we would rejoice with them and while we were sad that it did not happen for us, never once did you envy their sucess or wish that it was you instead of them.

Another little-bitty boy that was just a couple of months younger than Ross did not get to make that heroic walk. They came on the floor just when we returned from Ross's service and I have to admit that it hurt like hell watching him run around in the halls and because of that I kept my distance and did not get to know them very well. I have to admit that I hurt more today with his passing.

Grieving for Folden Lee IV in Texas,
The Joiners

Thursday, August 26, 2004 9:22 PM CDT

Well, things have finally calmed a bit on the Texas front. Trevor is feeling so much better now that the infection has cleared. I guess that the Vancomycin has done the trick. He is still a little uncomfortable from the residual soreness of the surgeries, but even that is getting a little better each day. He went about 9 hours between pain med doses today which is the longest stretch in a week. We are still hitting the margaritas pretty hard to help with tension. Mine comes in the On-the-Rocks form his comes in the IV Ativan form! Really good stuff and then we are both relaxed!

We had to make a trip back to the hospital yesterday to let the surgeon look at the line placement and also look at the infection site. He was a little ticked off when we got there because he thought we were going to Kids Kingdom. I had planned on keeping him home the rest of the week, but he made it pretty clear that he was ready to go back...so off he went today. Apparently, I sell him a little short. I did not think that he would last the whole day, but he made it all the way. He is one tough little kid, but he was definitely tired tonight.

He is asking to get back into the hot tub, but we have not been cleared to do that. He still has a couple of incision sites that have not completely healed, so maybe by this weekend we can get him back in it. He needs it. He has become really stiff from spending most of his time in bed this past week.

If all goes according to plan, we will resume with all of his therapies next week. I really do not like for him to miss any of them, especially his physical therapy sessions. Since we have refocused the attention to other things besides bearing weight on his legs, he does so much better.

I am planning on taking him to Cooper-South (his elementary school) this next week so that he can see all the kids and staff. He has not been back to the school since we left in December. We just did not have enough time when we got home from North Carolina before school was out for the summer. I know that he will love to go, but it is always an emotional trip for me. To know that he will never make it to the next grade is a tough thing to face. To see all these kids that grow and learn so much each day is hard. Hence the Margaritas......

Much better in Texas
The Joiners

Ross,
Saturday will mark 6 months since we have seen and held you. We miss you every day and Mommy and Daddy will never forget. We talk about you often and while it still hurts like you cannot even imagine, we know that you are all around us, all the time, because we feel you in our hearts.

Sunday, August 22, 2004 9:15 PM CDT

Quick update...

Trevor's surgery went pretty well. The new central line had to be placed in the curve of his left leg as all of the veins in his chest seem to be blocked. It is not the greatest of locations, but it flushes and draws really well so we hope that we (he) can learn to live with it. Seems the blocked veins are pretty common in those that have had a central line for extended periods of time. I am told that his body has compensated for it by re-routing the flow of blood. Long term-it is probably not great, but in reality, we know that we are not looking at any damn thing long term.

The G-tube was placed without any trouble. Because Trevor has always been so darn skinny, it was pretty easy to pick a location for it. That was the easy part - getting it to work has turned out to be a bit trickier. It was really clogged at first and it is a bit scary when the Gastro Doctor has a look of horror on his face as he is pulling stange looking material out of it. You think those type of doctors would have seen it all! My friend Tracy was positive that he was on his way to call NASA when he left the room. I do think that it will work a little better when he is less sore and less tense. As he tenses and contracts the muscles around it, it seems to be squeezing off and we cannot get much through it. I had a little more luck today so maybe he is getting better.

The cultures did show a staff infection, so we started high-powered Vancomycin. The site of his old line is still pretty ugly from the infection, but he has not run any fever in the last 24 hours.

All in all, he is much more comfortable now that the fever is gone, but he is still extremely sore from the dual-surgery. His esophogus is in really bad shape, according to the Gastro doctor.

Thanks to allfor the prayers and support.

Getting some rest in Texas,
The Joiners

Thursday, August 19, 2004 10:52 PM CDT

Ok-I am going to cheat you on the post tonight because I am exhausted.

Trevor is in the hospital tonight as his line became very infected, very fast. We suspected yesterday that it might be trying to get infected because it was starting to look a little red and puffy. After a look by Dr. Klepper, we scheduled to have it removed on Friday. Trevor decided that he did not want to wait that long. He started spiking 104.7 fever last night, so we moved up the schedule and we were admitted this morning. Dr. Klepper came by about noon and the line had actually started to float out and he just gave it a little tug and it came right on out. Trevor still has the fever from the infection and we are combating that and will remain in the hospital unti that is resolved.

We are scheduled for a new line placement tomorrow as well as G-tube placement. G-tube is basically a hole that is punched in his stomach and a tube is inserted so that we can "drop" things in the tube that will travel straight to his stomach. Both of these will happen in the morning in the OR. We need the new central line for IV medication and nutrition as well as blood draws so that we do not have to have a periphial IV (the stick) everytime. We need the G-tube because his ability to swallow is about gone and some of his medications do not come in IV form, like Tylenol.

Quite frankly, he is miserable and uncomfortable, but way too exhausted to care. Morphine is helping him rest. I think that I might could use a hit of that.

Please pray that all goes well tomorrow and that the infection clears and takes the fever with it.

Really, really tired in Texas,
The Joiners

Thanks to my gal pals for helping today and for just being with me or just a phone call away - JJ.

Thursday, August 12, 2004 10:53 PM CDT

Make sure that you check out the new photos! Hope that you enjoy them. Long post, but just normal news.

We are still doing pretty good as our summer is rolling to an end. We hit a couple of rough patches with Trevor and little fits of crying to the point that he was a bit hysterical. However, now, it seems that this has passed. (I am crossing my fingers here!) Not sure what really causes these outbreaks and we have tried several different things. By the time that we run the gamut on all of the medication, we get him too high and dopey. Again, that seems to have passed and he has been just happy as he can be this week. I still think that he has these sessions when he is just really pissed off and has energy that his body will not allow him to burn. It is a guess, but I can’t help but think how I would feel if I were in his place. Of course, I would trade places in a heartbeat, but I have learned the hard way that you cannot bargain with God. He just doesn’t work that way.

We had our meeting at the school this morning and that went very well. As I said before, Cooper-South and the whole Cooper ISD system has been so very good to us. Everyone from the administrators who have bent over backward to get us services, to the students of all the Cooper campuses that have raised funds for Trevor will always hold a special place with us. We decided to leave Trevor at Kids Kingdom and he will remain in the homebound program with the school. He will continue to get sessions of PT, OT and Speech each week, as well as a minimum of 4 hours of academics with a certified teacher. He will, on occasion, still do certain things with the school. The main reason that we decided this is that you just never know what kind of day he will have. He sometimes wants to nap at 9:00 am and eat at 2:00 pm. KK is flexible about this and actually jump to accommodate his every need. We are excited about this decision and feel that it is in the best interest of Trevor. I am so relieved that Cooper was open and supportive of it. I can’t help but think that if I am so comfortable with it, then it has to be the best thing for him. I have said it before and I will say it again, THANK GOD for Kids Kingdom and their love for not only Trevor, but every kid who walks through that door.

Speaking of Kids Kingdom, they are working on rebuilding the playground as a tribute to the boys. They held a meeting the other night and although I was unable to attend, I heard some of the ideas that are floating around. The neatest one that I heard was making it a ranch them with horses and such. It would be a perfect tribute to our cowboys. Again, I am honored and humbled by not only the idea, but by so many people that want to be involved and have embraced this project. They are going to hold some fundraising functions to raise the money and I think that some of the parents are going to try to get some of the construction services donated or at least reduced. It is going to be a place where those future children that at this moment are still just a gleam of hope to parents can play and run and be safe, happy and loved…just like my boys.

As far as Trevor’s health, we are pretty much on track. His labs have mostly been good, except for his red blood cell count. That is still low, so we had to spend Tuesday afternoon in the hospital getting a unit of blood. We are hoping the new medication will kick in and stimulate that growth during the next couple of weeks. The puking has subsided and only shows its ugly self a couple of times a week. He still does not eat enough to sustain himself as he is having trouble swallowing, so we are still on the salad-in-a-bag during the night. He is talking less and less as time goes by and the clarity of his speech is not the same as just a month ago. He has totally lost the ability to bear any weight on his feet, but he is not as rigid as he was just a couple of weeks ago. Back then, it was like carrying a 50 lb two-by-four around because he was so rigid. He is much looser now.

Speaking of, KK has the end of summer parties this week and today they went to another pool in town that had a diving board and slide. I am told that Trevor had a blast going off both of them. Not sure how they made that happen and sometimes that is a good thing. This is one of those times! Tomorrow they are going to Joyland (an amusement park)-I can’t wait to hear those stories…

We finally bought the hot tub I mentioned a couple of postings ago. Thanks to Samantha-Lucas Viscomi’s mommy-for pushing me over the edge on this decision. It was installed on Tuesday so he has been in it twice now. He loves it and it sure makes him relaxed. As you can see from the pictures, it brings an honest smile to his face and that is something that we do not see much of on a daily basis. Periods of brief, genuine happiness. That is what we are trying to give him and as much of it as we possibly can in a short period of time.

Hot-tubing in Texas,
The Joiners

We still miss our baby, Rossy...not a day, hour, minute or heartbeat goes by that I do not think of him and remember the way he laughed, smelled, and felt when I held him.

Friday, August 6, 2004 0:04 AM CDT

Hello Friends,

Things are going pretty good here. Trevor continues to do pretty well. He is still enjoying going to Kids Kingdom and they are doing so great with him. There are two young men on staff (Jon-Aaron and Fritz) who Trevor just adores. They are so good with him. They took him to the park today and went down the big slide with him. Does not sound like that big of a deal, but considering that Trevor can not walk, much less climb the slide, it is a huge thing. He just laughed when I asked him about it, so I guess that it was pretty fun.

We have made the decision to not send him back to school this year. We are going to have him enrolled, but with the home bound program. We have agonized over this decision all summer. Our intent was to just mainstream him right back into school for as long as he could, but we are a little concerned about him getting the kind of attention that he requires. Cooper-South is a great school and the reason that we moved outside of town. They have been so very good to us during this last six months. However, his endurance is not just great and we feel that Kids Kingdom can continue to accommodate him. They have areas for him to lie down and nap when he needs and the schedule would probably not be quite so rigid. We are supposed to have a meeting at the school next week to discuss all of the alternatives, so this could change. As of right now, we just feel that it is in his best interest to remain at Kids Kingdom during the school year. They are spoiling him rotten anyway and to tell the truth, that gives me great comfort.

We started him on Baclofen last week to try to get control over the muscle spasms that I mentioned in a previous post. That seems to be working pretty well for him. He has loosened quite a bit as far as rigidity, the down side is that he is a little more floppy. I think that it takes a little while before you get the right dosage that is appropriate, so we are playing with that a little bit.

He is having good days and bad days. On the bad days, I think that he feels OK, he is just really pissed off at the world. Those days, we just push a little more Ativan. This is what I call a “margarita in a pill” and it tends to calm him down and help him rest. I can’t blame him for being mad when I am just as angry at the situation.

Thanks for all the great guestbook entries and I am glad that you enjoyed the story of Trevor’s birthday. It was a bittersweet day knowing that this could be the last one and it made it so much easier to bear with all the great entries.

As always, thanks for checking on him and continuing to hold us close to your hearts and in your prayers. You will never know how much it has meant to us.

Day by day in Texas,
The Joiners

Tuesday, July 27, 2004 8:59 PM CDT

I thought I surprised you all with an early post this week. I finally got some new pictures up so make sure that you check out the photo album.

On a Friday in July of 1996, I was 38 weeks pregnant with my first baby. 38 weeks pregnant during one of the hottest summer months in Texas. Needless to say, I was not easy to live with. Man I wished that baby would come, but I did not think it was anywhere near time because I was one of the lucky ones and was still pretty much sleeping all through the night. This night was different. It was the first night that I actually could not get comfortable in my own bed, so I moved to the couch. I would wake up pretty often to switch positions and try to go back to sleep. About 3:00 am on Saturday, I noticed that I was waking up at pretty regular intervals. I kept an eye on it and a couple of hours later, I finally decided that maybe this was for real and I took a shower.

I woke Joe at 6:00 and told him that I thought it was time. He leaned up on one elbow and asked me through a haze of sleep exactly how far apart my contractions were. Unfortunately about that time, I had a pretty big one. So I proceeded to tell him to stuff his Lamaze class bull**** and get out of bed or I was going alone. If I recall correctly, we left about 20 minutes later…together.

We arrived at the hospital a little before 7:00 am only to be told by the nurse that I was only dilated to a 3 and it could still be days before this baby would come. These were probably false anyway…so just go home. Joe was feeling pretty smug about this time and we came back home. Things kinda went downhill for Joe after that.

My doctor called the house about 10:00 and I told her what was happening and she listened to me have contractions one after another on the phone. She asked me to go back to the hospital and I refused. I told her that I was not going back because they were just going to send me home anyway. Been there, done that once already. (OK-so I was acting like a brat, but give me a break here.)

Back to the hospital by 11:00 and my water was broke and I was dilated to a 7. I turned and was all prepared to give Joe that “I told you so and you are an idiot anyway” look that I had been trying to perfect since our wedding day, but he was looking pretty excited and I kinda got caught up in the moment with him…but it was just for a moment. He just had to go and open his big mouth. With big eyes, he looked at me and actually said these words; “We may have a baby by midnight.”

Ok-I am all for father participation in the birthing process and I would be the first to admit that I needed Joe to be there, but let’s face it-there is NO WE in this situation. Potential fathers-note to you-NEVER EVER tell a woman that is in hard labor that “WE” are having a baby and maybe it will only take another 12 HOURS. Both of those are big mistakes and, trust me, no matter how many drugs she is getting, she will remember every dumb thing that you said during delivery.

At 1:05 pm (yes, just a short two hours later) on that rainy Saturday, Trevor Lee Joiner popped into our world. He was really perfect. He weighed in at 8 lbs 5 oz and 19 ¾ inches long. He had blond fuzz and big Joe Joiner dimples in his cheeks. It took me several hours to fully realize that it was a boy. We had chosen not to find out and I knew in my heart that it was a girl. I stayed pretty out of it the rest of that day and night, but I remember holding him the next day for hours and knowing that I had been given something really special.

That was 8 years ago today and although his body and mind are a little less perfect to the untrained eye, I still believe that I was given something special and he is as perfect to me today as he was on that Saturday.

HAPPY BIRTHDAY TREVOR!

Celebrating in Texas,
The Joiners

Thursday, July 22, 2004 9:34 PM CDT

Sorry for the late update tonight, but we just got home ourselves. We have had a busy day. Today, being Thursday, it the day that Trevor’s group at Kids Kingdom goes swimming, so he got his weekly workout in the hot tub. He really does not get in the pool much as he has a little trouble regulating his body temperature and he just gets too cold, so he gets to get in the hot tub. We are considering investing in one for our home as he always seems a little less stiff after he has been in it.

I picked him up a little before noon and we were off to the hospital for blood. He is having a little trouble holding his red blood count, but our understanding is that this is one of the last things to recover from the transplant. Dr. Klepper is looking at a few stimulants for it and we will see what he comes up with.

I have to say that I HATE going to the hospital. I guess we have all just spent way too much time in hospitals this year and it just really gives me the creeps to drive into the parking garage. Also, things are a little different here than at Duke and it takes a little while longer to get our transfusion. We arrived at the hospital today around noon and his blood was hung at 4:00. It takes 2 hours to infuse then we have to wait around a little while to make sure that he is not going to have a reaction. We got home at about 7:30. Having said all of that, the seven hours in the hospital for a two-hour infusion is a little frustrating, but it is offset by the fact that we get to come home to our very own house! Or as Trevor calls it, Home-Home and not Apartment-Home. The staff at Covenant are all just great and make it real easy for us. The rooms are much bigger here than at Duke and that makes it more comfortable also.

Trevor’s labs have all looked pretty good this last week. His WBC is hovering around 3.5-4.2. This is still a little on the low side, but I would rather have it this way than it spiking at 16.0-20.0 which means an infection. The cultures drawn from his remaining line show to be growing something, but we are not sure what. The lab will continue to grow these over the next couple of days to see what happens.

He is not resting well at night and we are trying to find the right combinations of sleep aids to help him (and me) with this. The problem is that kids with these types of disorders really do not always metabolize things correctly. Something that might really knock you and me out will not even phase him and something that might not have much of an effect for us will put him in la-la land for days. He seems to be becoming a little more stiff. His feet and legs are really stiff and he holds them in an extended position just about around the clock. You might remember that he did this right when we first arrived home from North Carolina. At that time, I do not believe that he was in any pain. This go around, I do believe that he is experiencing some discomfort. I think that we are at the stage where he is starting to experience some slight and slow muscle spasms. Again, Dr. Klepper is going to speak with some of his colleagues to find the right combination to help him. There are a number of aides out there that can help this, it is just a matter of finding the right one for him.

Long post tonight-Hope all of you have a great week. Thanks for continuing to check on us and pray for us.

Please also remember Emma McGregor and Maddie Trimper. Both of these girls had their gall bladder removed recently. Also Lucas in New Jersey had major surgery on his spine and is expected to be in a rehab facility until Labor Day.

Tired in Texas
The Joiners

Thursday, July 15, 2004 9:10 PM CDT

Thursday night again…already. The weeks sure seem to fly. Again, there is not much new to report. Trevor continues to do pretty well. I just tucked him away in bed for the night and he was in good spirits. He was running a low-grade fever earlier, but it seems to have worked itself out. Can’t blame him as hot as it has been here the last few days.

We spent another weekend at the lake and, again, had a great time. Joe is still unable to even catch a cold if he has a fishing pole in his hands! Trevor hooked a fish through the gills-just blind luck, but it was fun to watch him.

His new chair came in this week and it seems to be pretty comfortable for him. Of course, in true Red-Raider fashion, this one is red and black. It is amazing how they can make a “wheelchair” without it appearing to be a wheelchair. It looks like a really big/sturdy umbrella stroller and also folds just like one. It has a few more bells and whistles on it and is a little bigger than the loaner that we had. Our very special friends, Fran and Dave Forslind, loaned us the chair they had for their oldest son who is now one of Ross’s playmates. We met them while we were in North Carolina and not a day goes by that I do not think of them. They are in North Carolina with their third baby and third transplant. (You can check them out at www.mitchellkyle.com).

Work is still going good for Joe and I. Joe pulls most of the morning duty with Trevor and gets him to school and I pull most of the evening duty picking him up and getting his salad bag going. He is still not eating much, but we let him have whatever he wants. One of his favorites is Corn-on-the-Bone and my father’s garden is just full of it. We have learned to be really conservative with what we feed him because whatever you put down him, you have to be prepared for it to come right back up. Corn-on-the-Bone is not a pretty sight. He just loves it so much that it is hard to deny him…so we don’t. We just flip a coin on who is going to have clean-up duty. I think that Joe is using a two-headed quarter……….

North Carolina is a beautiful place, but I don’t miss it. I do miss all the gang on 5200 and think about you guys all the time. You will always have a place to stay if you are ever in Texas. Trevor still asks about all of his girlfriends!

Still trying to heal our hearts in Texas,
The Joiners

Ms Brown-I will call you soon!

Thursday, July 8, 2004 7:34 PM CDT

Hello Friends,

Again, there is not much new to report. Trevor is doing pretty well. His labs continue to come back with good results. He will probably need blood sometime in the next couple of weeks. While I am on the subject, please take time to donate blood if you are able. There have been some shortages in our area lately. I know that you are busy with summer, but please take the time. As the saying goes…it can save a life.

We have had a busy week. It started on Friday with the parade at Kids Kingdom. Although it was pretty hot, Trevor looked so cute in his chair with red, white and blue streamers flying. We went out to Lorenzo, which is the small community were I grew up, for the 4th of July parade on Saturday. That night, we had some friends to our house for burgers and fireworks. There were about a dozen kids running around here. Joe gave horse rides and the kids ran around the yard. Everybody seemed to have a great time and, more importantly, nobody got hurt and we did not set anything on fire! Next up on Sunday, we went to our neighbor’s house for more cookout and fireworks. Needless to say, by Monday, we were all exhausted!

I did finally get some time to unpack the last few boxes from our stay in North Carolina. It is good to finally have that little chore completed! I made a huge trip to Goodwill later in the day.

Memories, a little part treasure and a little part torture. Who would have thought a holiday like Independence Day would be rough? Don’t get me wrong, I am as patriotic as the next American and can think of no other place that I would rather be, but it is not like it holds the emotional value of Christmas. At least, not for me. But I remember every thing about last year…and the year before that…and so on. It is good to remember and I thank God that I have those memories and I know that I will find comfort in them someday. I just get really tired of the hurt that comes with them. I still feel like something is missing and I guess I always will. Gotta go, I am whining just a little too much for my taste……

Having a busy, but different, summer in Texas,
The Joiners

Remember those pictures I promised? I am having some problems downloading them. Trevor really does look much better now and I will get some posted ASAP!

Thursday, July 1, 2004 10:01 PM CDT

It is a little late but, as promised, here is the Thursday night update. I am a busy girl around here at night.

Things are going pretty well still. We have been two whole weeks without any fever or major problems. As always, still having some stomach irritation, but even that seems to have calmed a bit. He is still not eating and we are still doing the salad-in-a-bag routine every night. That is something that we are getting used to.

Trevor is still having a great time at Kids Kingdom. Today was his swim day so he loaded up with them and went to the pool. He was excited to go this morning and tired when I picked him up this afternoon. They are the annual 4th of July parade tomorrow at the school and all the kids take their bikes and scooters and decorate them. This year we will just be decorating a different “bike” and I am sure that someone will push him.

We took him to Lake Alan Henry this last weekend and stayed with some great friends who have a really nice place. In their own words, they are not roughing it at the lake! He was so excited to go camping and go out on the boat. We even got him in the lake for a little while and let him float around. Gosh, I hope that Dr. Klepper and Dr. Kurtzberg are not reading this! We had a great time and it was so good to hear Trevor laugh. It is not a sound that we hear very often.

We are leaning more about what he can tolerate and what we can do with him. Part of me just assumes that because he has lost so many abilities, then he would not enjoy doing something like going to the lake. Boy, was I wrong and will not make that mistake again!

I am still having good days and bad days, but all in all, we are doing pretty well for now. Hope that you all have a great weekend and safe holiday.

Happy Independence Day from Texas,
The Joiners

Thursday, June 24, 2004 9:39 PM CDT

Ok, I have made a decision about posting. I am going to try to post every Thursday night. That way you will all know when there is a new post and it will get me on a schedule to update more regular. Sorry for the delay this time around.

Trevor is doing really really well. We are very encouraged about it. He still is having the stomach issues and is still getting 12 hours of salad in a bag every night. We are starting to believe that it is just he way that it is now. In talking with some other MLD families, it seems that is a common symptom of the disease. We were really hoping that it was more transplant related and a result of all the toxins that we put in his body. We are learning to live with it.

Kids Kingdom has probably been the best medicine for him…and us. He has been so much happier and in a much better disposition since he has started going. The kids have all really accepted him and are anxious to help out and play with him all that they can. I hear the shouts of greetings to him every time I drop him off and it does my heart good. When we leave, they will run up to tell him bye and give his head a little rub. He actually even went swimming today with his class! Thanks to the cotton farming family of mine, I wrapped up his central line with bright red waterproof poly pipe tape and off he went. He had such a great time and his physical therapist said that water play is really good for him.

To Amy and Cheri and the gang at Kids Kingdom-I just want you to know that you have made a tremendous impact in our life. Your willingness to include Trevor is all the activities and make adjustments to accommodate him has made all the difference to Joe and I, not to mention Trevor. We just wanted him to find a little joy this summer and you guys have made that possible. I really cannot express what it has meant to us to have you guys everyday. Thank you.

I am getting back into a routine at work and that is going well also. It is good to have something to focus on and it has been great therapy for me. Joe is also back working pretty much full time so we are getting back to some normalcy-although I hesitate to use the word “normal” as it will never be the way it was.

Joe did pretty well over Father’s Day. A very good friend told me after my breakdown at Mother’s Day that these types of holidays probably cause more pain than pleasure. I think that she was right. I can tell you that after going through what we have during the last few months, it does seem a bit ridiculous to have certain days set aside to remember mothers and fathers. Every single day of fatherhood and motherhood is special-not just a Sunday in May for mothers and a Sunday in June for fathers.

Still constantly missing The Bull everyday in Texas,
The Joiners

Tuesday, June 15, 2004 7:24 PM CDT

Again, no news is good news. Not too much going on around here and nothing much new to report as far as Trevor’s health. He is still having the stomach issues and we have pretty much run the course on all medications for it. We are starting to believe that his stomach is probably not working just right. He still tries and wants to eat and we sometimes have some success with keeping it down and sometimes we just get it all back. You just never know so you have to be prepared for anything. He is pretty restless at night and cannot seem to get comfortable, but that is about our only new complaint.

We did get all the therapies and school schedules worked out and all of those have started. If he gets nothing else from them, at least he is getting to see another friendly face. He is still very weak and does not walk or talk much. He is pretty good at making his wants known and he will call out for us, but he really does not initiate much conversation. Again, most of this is disease related and will probably decline even more as it progresses.

Trevor started back to Kids Kingdom yesterday and that seems to be going pretty good. I am told that he is a bit overwhelmed by all of the activity around him as he is used to things being pretty quiet. I still think that this is good for him and soon he will adjust. He needs to be around kids and he needs to build his endurance. You all would be very proud of me as I only called one time yesterday. I did leave work a bit early to go and check on him! It is very hard to turn his care over to someone else and I would not have done it if not for Cheri and Amy at KK. Thanks to those girls for accommodating him and making it possible for me. One of the hardest things I did was drive on that parking lot after work knowing that Ross would not be there to meet me, but I managed to not break down…or at least not in front of everyone. I guess this is another first in a long line of things I am going to have to do that will never be the same.

On another note, I did it…I walked right in that office yesterday morning like I belonged. I have to admit I was a bit apprehensive about it, but I DID IT. It is good to have something else to think about. Again, this is a big adjustment for me and Incode is making it really easy by just letting me slide in at my own pace. They are just really a great group of people and we are honored by all they have done for us. Thanks to everyone for coming by my office and for your continued support.

I never write much about Joe. He is doing well and is also back at work full-time. He is also getting back in the groove with his horses and roping. I think that he was a little sore at first and I try to tell him that he is not the youngster he once was, but as always, he just does not listen to me!

To my North Carolina friends-I miss you all very much and think of you often. Hope all is going great with all of you. Trevor still thinks Trish is his girlfriend and Emma is his Sugar-mama.

Still adjusting in Texas,
The Joiners

I promise, new pics soon.

Monday, June 7, 2004 4:59 PM CDT

Hello Friends,

In this case, no news for the last few days is good news. Things have actually been pretty calm around here. No more fevers or infections and that is always great news.

We have just about got all of Trevor’s therapies underway as well as his school. He has physical therapy 3 times a week and occupational therapy twice a week. He also has 4 hours of home school each week. He is a pretty busy boy. He is doing well in physical therapy although he really does not like it much. The therapist will stretch all his muscles each visit and considering that he does not use those muscles very much anymore, it gives him a little discomfort. He is being a real trooper, though.

I guess, just like us adults, he has good days and bad days. There are days that he will not even try to cooperate with the therapists and days that he just hustles right through it all. Can’t really figure out any pattern, so we are assuming that it all depends on what mood he happens to be in.

Still having the stomach issues and we are running through all of the drugs that we tried before in North Carolina to see if something might have changed a little in the hopes that we will hit on the right combination. The good news is that he is on NO medication right now, other than for nausea, and he is really trying to eat a little. It usually comes up not long after, but at least we know that his is capable of eating and swallowing. That is a good sign, a small one, but one that we will take any day.

I am planning on going back to work next week and am SO looking forward to it. We have Trevor’s activities stacked up in the mornings. Joe and I will take turns staying home in the mornings and Trevor will go to Kids Kingdom in the afternoons with the exception of Thursday when he will spend most of the day there. I will probably only be working about 30 hours a week, but I really need to get back to work for therapeutic reasons. And to tell you the truth, I think that Trevor really needs to get away from me. We have spent just about every waking moment together since December. The only real times that I have seen him perk up are when other children have stopped by to visit or come to watch a movie or play with him. I think that it will do him great to get back into a non-medical environment. I have had at-length discussions with Cheri and Amy at Kids Kingdom and they are really excited about him coming. I just hope that the kids respond well to him. He is not the same Trevor that they have known for the last 7 years.

Thanks to all of you for your continued support and prayers that you have offered us. We feel the power of it all around us-all the time. We are at peace with our decisions and what they mean for Trevor and we know that we have a long road ahead of us. We are more worried about the road ahead of him.

Will get new pictures up soon.

Getting through the day in Texas
The Joiners

PS-I have not (and still don’t) had any connection to my email since my return from North Carolina. So, for those of you that have emailed me, sorry for the delay in response.

Monday, May 31, 2004 4:33 PM CDT

Hello Friends!

Hope that you all had a great holiday weekend. We actually went to a cookout last night and had a great time with some great friends. It is the most normal thing that we have done since November.

I find myself apologizing again for the delay in posting. Adjusting to home life has been a bit trickier than I thought it would be and added to that is the task of unpacking 6 months worth of suitcases and boxes. Needless to say, we have been very busy.

On Wednesday night, Trevor started to run a pretty high fever so we had to take him to the hospital. They immediatly drew cultures from both of his central lines and sure enough, he had an infection in both of them. We ran some antibiotics through them both for a couple of days to try to head it off. By Thursday afternoon all the fever was gone and it appeared that we would be able to save the lines. We ended up going to the hospital on Saturday to PICU to have one of them removed as it was becoming red and puffy. Unfortunatly, we had to remove the line that branched out into a double. So now, instead of three ports, I only have one to work with. This is more of an inconvienence than anything as I am having to juggle with time and medications. I am getting good at juggling.

Trevor is still having the stomach issues, although it has subsided some. I think that he likes to tease me. We will go a whole day where I really think that it is getting better, then WHAM! He is back at it again in force. Dr. Klepper comes to the house almost everyday and even he remarked that it seemed my washing machine was working overtime.

It is still great to be home and we are thankful that we are here. I would say that Trevor is not doing just great. I had really really high hopes that he would start to improve a bit when we got home and would have more desire to try. It does not appear that that will happen. He is very weak, both emotionally and physically. He is either slowly losing his ability to communicate or losing his desire to try. I have not heard him laugh in a very long time and hear him cry too much. It is taking a toll on us, to know that we cannot really do anything for him. All that we can do at this point is love and support him. It just does not seem like enough. We are trying, but it is very hard. I should probably not be posting all this gloom right now, but we are having a pretty tough day and it is coming through. By the grace of God, maybe tomorrow will be better.

Please continue to pray for us.

Day by Day in Texas
The Joiners

Sunday, May 23, 2004 8:51 PM CDT

We are home! It is so good to be back here in West Texas. We made it here safe and sound on Thursday and it has been a whirlwind ever since. Joe made it in on Friday afternoon after 23 hours of drive time. Thanks to Hoot for traveling with him and thanks to Tracy for traveling with us. Trevor seemed to enjoy the flight, but was exhausted by the time we actually got to the house. We left NC at 6:30 am so we were up early, especially early on Texas time. Ahhhh-to feel the West Texas wind on our face was absolutely great.

Dr. Klepper came out as soon as we got home to check on Trevor and then the home health and home infusion people came on Thursday afternoon. The physical therapist also came out on Friday morning and made an assessment. She will start seeing Trevor three times a week here at the house. We think that Dr. Klepper is just the greatest for having all of this organized before we ever left North Carolina soil.

Trevor is adjusting to life at home. He has seen his best friend, Tycer, and his grandparents. He has even been on a ride on Granddad’s four-wheeler. I am sure that he wonders why he cannot do the things that he has done before, but he seems to be taking to in stride. He is probably taking it better than we are.

It is good to be home, yet it really does not feel like home. I love this house and this town and it feels so good to be surrounded by all of our people. Something is still missing. We miss Ross and his little body running around. While Trevor is here in presence, we also miss him. We miss the noise. We miss hearing them laugh and talk, we miss seeing Trevor run around as well. Life will forever be different. They say when life changes significantly, like a new marriage, career, house, etc. that it is usually for the better. Right now, I would just settle for bearable. In time, we will figure it out and learn how to just keep going. While there is not much noise, there is still much love and support around us and we will try to lean on that. We knew that we would have to face certain things that have pretty much been on the back burner when we came home. It still hurts like crazy and now we are trying to adjust to a new noise…a quiet noise.

At home in windy West Texas,
The Joiners

Tuesday, May 18, 2004 4:00 PM CDT

2 more days!

Hello to all our friends! We are still on schedule to return home this week and are so looking forward to it. Trevor is getting really excited to see his daddy, who arrives in just a few hours!

We had our last clinic visit today and spoke one last time with Dr. Kurtzberg. It always has such a calming effect on me to see her. Don’t really know why, she just exudes that confidence and hope. She always makes me feel so much better. Trevor did demonstrate first hand his nausea for her! She remains as baffled as I do by it. It seems to have actually increased in frequency the last couple of days. Should be a very interesting plane ride home! Who cares? I figure a few hours on a plane is better than 3-4 days in a car.

While I was taking my last stroll through clinic, (OK-so I was actually running), I ran into the first person we met back in December. I guess you could say that we came full circle. June Allison was our nurse coordinator here and was the contact person for us during our transition here. She is one hard-working fast-talking little fireball. She also has a heart of gold that broke right along with ours when we lost Ross and Trevor’s engraftment failed. It made me realize that I might have spoken a little too soon in my previous post.

Good things have happened for us here. We have met some amazing people and I will miss every single one of them. I have expressed so much frustration at the doctors and staff, but I know that they tried so very hard. We have also learned what a fantastic group of friends that we have. We could not have made it this far without them. We have also made many new friends throughout this ordeal. New friends are to be cherished and nurtured. We have learned valuable lessons as human beings here. We hope that our travels through this have touched you and maybe you might have learned a little something along with us.

This will be my last post from North Carolina and probably for a few days. My computer is taking the long way home with Joe. I have been asked if I will continue to post. This is not over for Trevor yet and writing these journals has been a bit therapeutic for me so I will continue. Make no mistake; we know where this will lead for Trevor. We have chosen to not dwell too much on that at this point and just enjoy the day with him. Thanks for coming along for the ride with us.

Signing off from North Carolina,
The Joiners

Sunday, May 16, 2004 6:44 PM CDT

4 days until return to Texas!

Remember how I used to post the # of days post transplant like that was significant? Well now I am counting down the days to going home!

The closer that we get to going home, the more that I hate this place. I hate this town, I hate this apartment and I hate this hospital and this clinic. As I have said before, I will forever be grateful for the smallest chance for our boys, but I am so ready to leave this place where not a single good thing has happened for us. Dr. Kurtzberg does amazing work and all of the staff are fantastic people and I will forever cherish the memories that I have of all of them, but it is time to leave this place.

Trevor is still feeling about the same. Still vomiting pretty constantly. I am getting very close to shutting off every single medication that he is on just to see if it would help with the nausea. Of course, I am told that this is probably something that I should not do, but it is not as if they can figure out what is going on. I don't know, it is a constant battle and I am weary.

Vince, our best buddy, came for his last visit on Friday night. I would like to take this time to thank Vince for coming every week and hanging in there with us. I am sorry that your first experience with this program has been so rough. I hope that you will stay with this program as it is so helpful to families like us who come from so far away.

This was the first of many tough goodbyes we will have in the coming days. These people have taken us in and became our friends and we will all miss them all. We will never forget how hard they all tried and we also know that they wish the outcome had been different. We know that they have all hurt with us.

Joe and the reinforcements arrive in a couple of days and Trevor and I cannot wait to see them all. Mandy and Carrie, two of the cutest little nurses, brought a huge pan of lasagne over and we are going to have that when they come in. Again, I am saved from cooking....hurray!

Counting the days, hours and minutes in North Carolina
The Joiners

Wednesday, May 12, 2004 7:49 PM CDT

We are coming home!!!! As you can tell, we are very excited about this still.

We will be home sometime late next week and I am so looking forward to seeing my own house. Joe and one of his buddies are coming in the early part of next week to help me finish the packing and are going to drive the gecco-mobile back. Tracy Autry will be coming with them and she will help me fly home with Trevor. I am very excited about this as it is the first time that Trevor has ever flown. I guess that I have just kept him too sheltered in West Texas! I know that he will really enjoy the plane.

He is feeling alright, but not great. I guess that I just spoke to soon with regards to our stomach problems. The nausea and vomiting have returned and I think that it might actually be a little worse than before. I emailed Dr. Kurtzberg about it and we are going to schedule a barium swallow sometime this week to see if it might be really bad reflux. I am hoping that it is as that is something tangible that can be dealt with. However, I am not holding much hope for that as he is on Prilosec already. I guess that we will see.

I have also received clearance from Dr. Kurtzberg to allow Trevor to attend the summer program at Kids Kingdom a couple of afternoons a week. I am not sure that we will do this and it will involve much consideration by Joe and I, but I would love for him to spend some time with his buddies that he has grown up with this summer. Kids are supposed to be fairly isolated for a pretty long period of time after a transplant and it might be a bit risky with his immune system in its suppressed state. The truth is that this might be the last summer that he is somewhat physically able and will remember. We will take that risk if it means that he can at least dream of being a normal kid even for a little while.

I am not sure why we did not find our miracle here. I have seen so many kids walk out of here, so I know that it works. I just really don't understand why it did not work for Trevor or Ross. Maybe I am looking too hard. Maybe the miracle for both the boys was just in their creation and the fact that we will remember them and carry them in our heart always. Whenever, wherever.

Packing through the puke in North Carolina,
The Joiners

Sunday, May 9, 2004 8:33 AM CDT

Hope that you are all having a great weekend. Things are pretty boring here in North Carolina. I do think that we have finally gotten some control over Trevor's nausea. As opposed to vomiting an average of 24 times during a 24 hour period, we are down to about 2-3, and they are not nearly as severe as before. Maybe we finally hit on the right combination of meds for it. Having said that, he seems to be in much better spirits these days. He actually had a movie date with the hottie next door to us. Emma let him pick the movie and he chose Spirit. After that, she got to pick and chose Shrek. I am pretty sure that he had a great time. I think that he might have a movie date with Trish (his primary nurse) on Monday. The guy really gets around!

I have started packing up the place for our trip home. Amazing how much that you can acquire during a 5 month stay. Pretty emotional and bittersweet. We are still on target for the week of the 17th. Trevor and I will fly home on about Wednesday or Thursday of that week, it will depend on getting him stacked up on blood and platelets. Cannot wait to get back to Texas!

Mother’s Day-Ouch-did not see that one coming. Pretty rough this year as I’m sure it will be in the years to come. You have no idea what I would give to get one of those scribbled and sticky construction paper cards lovingly made at daycare. Not for me this year though it sure makes me cherish the ones that I did get in years past all the more.

Please pray for all the moms and grandmoms whose arms are empty or whose kids are sick. God knows we need it on days like today because the hurt comes roaring to the surface. No matter what age you are, please take the time to call, write or email your mom. She needs to hear from you.

To Joe, I miss you everyday, but more today. Thanks for letting me try to be the best mommy that I could be. I could not have done it without you standing in front, beside, and behind me. I love you and will see you soon.

Happy Mother’s Day from North Carolina,
The Joiners

Wednesday, May 5, 2004 2:03 PM CDT

WE ARE GOING HOME!!!!!!!!!!!

Exactly 5 months ago today, we pulled out of Lubbock Texas. Scared silly and still reeling with the news that our kids were dying, we were so grateful for even the smallest chance and opportunity to change that. Man, how I wish I had a crystal ball that day. I still would have done it. I still would have given my kids that chance. I will never, ever regret giving them that.

We had the last of our reevaluation tests today. I am glad those are all over. Every place that we went, the techs or nurses that remembered us asked how our boys were doing. I remember taking both Ross and Trevor to every one of those and getting annoyed when they would not cooperate. Again, no regrets, just wishing for a do-over.

The great news is that I spoke at length yesterday with Dr. Kurtzberg and she has given the green light for us to go home! We started Trevor on another medicine to see if we could get control on the puking and we want to give that a chance to see if it will work. Because of the failure to engraft, we are on very few medications so coming home would not be a problem. I spoke with Dr. Klepper (our pediatrician at home) and gave him the run down on what all Trevor would need and he assured me that none of it would be a problem. The big thing is really the stomach. If we can ever stop the vomiting, I am sure that he would eat and we could get off the salad in a bag. I hope to have that accomplished before we leave here, but I am not letting that stop us from GOING HOME!

Right now, our plans are VERY tentative, but we are possibly looking at the week of the 17th. It will mainly depend on the stuff the doctors have to work out to make sure that we can support him at home. Also, I have much to do with packing up this place. We are hoping to fly home and some friends have offered to come get our car and drive it home for us. I really do not want Trevor on the road for three days. That kind of non-recreational travel is hard on an adult; much less a 7-year-old that has been through what he has been through. I am going to start calling the airlines and getting the most direct route home.

Right now, we are still unsure of our next course of action for Trevor. We are not sure that we will go a third round. Right now, I just want to get him home. He is pretty uninspired here when all he sees day after day is me and this apartment. He does not talk much and has really no desire to try to do anything. I think that he needs to see his house, family, friends and all the other stuff that he left behind. Talking about it is one thing, but I think that he needs to see and feel it.

Counting down for departure in North Carolina,
The Joiners

Monday, May 3, 2004 5:21 PM CDT

I really do not intend to wait so long between postings, but the last few days have been pretty busy. We are going to clinic only two days a week, but we still have blood runs to the lab every morning. So far, everything is really settling in with the new schedule. Days at the apartment are good and Trevor continues to do well. He is still having some stomach problems and they are beginning to get to everybody. I know that he must be really tired of it, but he complains very little. His mouth looks so much better and we are hoping that he is healing in his esophogus also.

Tracy Autry came in last Wednesday and left yesterday morning. It was so great to see her and talk with her that I really hated to take her back to the airport. The next time I see her, I want it to be back in Texas where we belong.

On Saturday, we went to the Rainbow of Heros walk. The is a walk that supports the PBMSCT Family Life program. This program helps to alleviate some of the stress on families that relocate here temporarily for treatment on the bone marrow unit. The really cool news is that the family of Ross and Trevor Joiner along with Cheri Harper and Amy Hall at Kids Kingdom were one of the top money contributors. It was really cool to hear our names called out to the crowd. Thanks to those that bought the T-shirts. Not only did you support our boys (again) you also supported this wonderful program.

Also at the walk, Dr. Kurtzburg announced the creation of the Ross Joiner Leukodystrophy Fellowship. If you recall, this was an effort by the Trimper kids foundation to fund a research fellowship at Duke to study the forms of leukodystrophy. With our combined efforts (and I mean minimal effort from me) they raised enough money to fund two fellowships and they named one after our boy. While I knew this was in the works, I did not expect the announcement at the walk and I cried like a baby. We are honored and so excited that his legacy and our dream of a happy healthy boy will live on. It is as it should be.

At the end of the day, there was a balloon release in honor of those that fought so hard, but were not victorious in this life. Trevor and I sent a red balloon with a blue ribbon to Ross. Needless to say, it was an emotional day. Too many balloons.....

Very Homesick in North Carolina,
The Joiners

Tuesday, April 27, 2004 3:45 PM CDT

Sorry for the delay in posting, but outpatient life is a little different than inpatient. And as you may know, Joe went back to Texas on Friday, so I have been flying solo the last few days. We are slowly adjusting to our new environment and responsibilities. We are going to clinic every day which was really going great until yesterday. We arrived about 11:00 and did not get released until 6:30 that evening. Needless to say it was a long day. Trevor needed both blood and platelets and some other organizational problems at clinic is what caused the day to be so long. For those that know my OCD personality, this was almost too much to live with! I guess I will have to chill out and learn to go with whatever happens or they will have to admit me for heart problems or just kick me out of this place altogether.

Our visit at clinic was much shorter today and we were outta there by 3:30. The really great news is that we are now on a Tuesday/Friday schedule and this will be much easier than the every day schedule we have now. We will still have to draw blood and send it to the clinic everyday, but that will be a breeze. Based on each days lab results, we might have to make a quick trip in for platelets or blood, but we are expecting his marrow to kick in any day and start making those anyday.

We are looking at a possible return to Texas date around the end of May/first of June. We have to get the HSV completely healed so that maybe he will be a little bit interested in eating. That is when I foresee him gaining some strength.

Tracy Autry is coming for a few days tomorrow. I am looking forward to sitting and talking with another adult. I have to admit that these last few days with just me and Trevor have been really nice, but I know that he will be missing his daddy soon and getting tired of me! We have been walking every evening with Emma and her grandmother and the kids seem to enjoy it. They will just sit and stare at each other and not say much. I think that they take much comfort is seeing another kid that looks and acts like them and that are going through all the medicine and other junk together.

Hope all is well with you. Please pray for us as we have some really dark days ahead and tough decisions to make.

Living for just today in North Carolina,
The Joiners

Thursday, April 22, 2004 6:42 PM CDT

We are outta there! Trevor was paroled today and we are all back at the apartment...together...and do not have to go back on any time schedule. As a matter of fact, I already have nightly meds infused and we are looking good!

When the nurses asked Trevor this morning if he wanted confetti or bubbles for his walk out, he responded in typical fashion that he wanted BOTH. Not surprising from our boy! Speaking of nurses, I just have to say that the gang on 5200 is phenomenal. Being so far from home and out of contact with everyone can make you feel a bit isolated. This group of people really took us in and became our friends. They have laughed and cried with us every step of the way and we would not have made it without them. Each and every one of them was great and we look forward to seeing them again.

To Trish, Trevor's primary, like I said today, there are just no words. Thank you so much for loving Trevor the way that you did. Thanks so much for seeing past the disease. Thanks so much for listening to me rant about everything during the last 123 days. Thanks for being there when we really needed you in PICU at the end of February.

To Jenn B, thanks for loving Trevor and giving him something to smile about. Thanks for treating him like any other kid and letting him into your heart.

To Sameeya, Ross's primary, thanks for standing over his crib night after night. (Sorry about the poop-that always seemed to happen during your shift!) Thanks for trying so hard and thanks for coming in on your day off that last day in February to be with us as we said goodbye. We will never forget.

Thanks to all the Jennifers, Carries, Tracys...and the list goes on. Each of you always made time to come by and let Trevor flirt and/or cuss at you and it always made his day and made him smile, no matter what mood he was in. Thanks to all of you that stopped me in the hall to say HI and just chat. We will never forget how hard you all tried for our family.

At home (sort of) in North Carolina,
The Joiners

Tuesday, April 20, 2004 6:10 PM CDT

Busy couple of days around here. First of all, we are still in the hospital. We decided to do some of the 100 day post transplant studies while we are inpatient so that we do not have to haul Trevor around the hospital once we get out. He had an MRI yesterday and an EEG today. He also will have some nerve conduction studies tomorrow morning if they can fit us in the schedule. The MRI and EEG went pretty smoothly, but I am really dreading the nerve condution studies. We did these before we were admitted and they are pretty painful. They send electrical volts through your nerves and try to see how they respond. Not looking forward to that at all.

We also had an endoscopy today to try to figure out what the deal is with all the vomiting. The initial look at the pictures shows some irritation in the middle and lower esophagus. They took some cultures from these areas and we should know something in the next day or two. It appears to be a viral infection and I really HATE viral infections. The good news is that his stomach and the rest of his GI tract look really good. Ironically, we are trying to rule out some Graft-Vs-Host (GVH) disease in his gut. They also biopsied these areas to check for GVH. That would be our luck to still get GVH with no donor cells. It is very rare, but still a possibility. Everything that has happened to us is "rare" so I would not be surprised at anything these days. Just try to roll with what comes.

The good news is that our release date is Thursday. This is pretty firm date...if all goes well with the rest of the testing and results from those. I really think that it would be great for Trevor to get out and for all of us to be together outside the hospital environment. All of the nurses had promised to visit and help me keep on track with his meds and stuff. I intend to hold them to those promises. They are a fantastic group of caregivers who have been there with us every step of the way, good and bad.

Existing in North Carolina,
The Joiners

Sunday, April 18, 2004 4:45 PM CDT

Beautiful weekend here in Durham. The week started out a bit chilly, but has really warmed up since Thursday. This is a great thing because we have been able to get Trevor out on pass the last three days and take him for walks and spend some time away from the hospital. The temperatures have been around 80 degrees and I can tell that they will have a bit more humidity here in the late spring and summer than what I am used to on the plains of Texas. I did have to go out and acquire a spring wardrobe as all I brought with me were winter types of things.

Trevor is still having stomach issues and we are at a loss as to what to do. Dr. Kurtzburg (the big dog) was on this weekend and I talked for a while with her. We are going to scope his GI tract on Monday or Tuesday to see if there is anything going on down there that needs attention. While they are down there, they will also take a small biopsy. I am not sure what this will tell them, but if it will put us one step closer to really seeing what might be causing these problems, I am all for it. It will also be a great opportunity to see if and how far the HSV goes down. The HSV sores in his mouth and on his gums and tongue really seem to be healing a bit. I think that he might even be able to eat some very soft types of foods if his stomach was not upset 24 hours.

I spent part of this last week learning how to use the IV pumps and other things in preparation of Trevor leaving the hospital on Tuesday. This is our target release date and I am SO EXCITED about getting him outta there for a while. We also are going to do another couple of tests while we are inpatient so that may put our release back, but not by more than a day or two.

Lastly, we did receive confirmation on Friday that Trevor has no donor cells. The doctors had the test rerun when we received the first results just to be certain. Also with second transplants, it sometimes takes longer for donor cells to appear. Again, we were silently hoping and were, yet again, disappointed. I expected it, but it still hurt. I just don't understand why this boy was dealt such a crappy hand.

Sunny day but bleak outlook in North Carolina,
The Joiners

Thursday, April 15, 2004 8:40 AM CDT

Once again, there is not much new to report here. Trevor is not feeling great, but he is a fighter and we are working through it. He is still having some stomach problems and we seem to constantly be cleaning up after him. We are unsure why he is unable to keep anything down and it is a bit frustrating. We feel that if he could eat and keep it down, then maybe he could start regaining his strength. We have tried a whole host of various medicines for it and nothing really seems to do the trick. We will keep at it and try to figure it out.

As of today, we are scheduled to be released from the hospital on Monday. At the same time, we are excited and apprehensive about this. (I think that the real work will begin once we are released.) We are taking Trevor out on passes just about everyday to try to get him used to being out of the hospital. Once we are released, we will have to go to clinic everyday so that he can be seen by the doctors. We also will be bringing an IV pump home with us so that we can infuse some of his medications here. We had hoped to have him on as many oral meds as possible, but again, we are having trouble keeping those down. Also, he will probably stay on his salad in a bag and fluids until we can get a hold on his stomach problem. While I very much want to take him out, I really do not want to until he is ready.

He also has become really really attached to some of his nurses (just like we have) and I am afraid we would all be lost without them!

Apprehensive, but always hopeful, in North Carolina,
The Joiners

Sunday, April 11, 2004 3:34 PM CDT

WBC 8.1!

We hope that you all had a great Easter holiday! We had pretty great one here. Trevor feels a little better everyday. He felt really good on Friday and then took a bit of a downward turn yesterday and just really felt bad. We had to start the Morphine drip again last night to take the edge off. We are thinking that he is having some bone pain now that his cells are growing so well.

He felt well enough to leave the hospital today and we took him home for a big Easter dinner (even though he did not eat). I aked him this morning if he wanted to go outside and he was very negative about it. When I explained that I meant ALL the way outside and not just into the hallway, he sure changed his mind. Today was the first time since early morning on December 22nd that he has felt sunshine on his face. He has laughed and played more in the last couple of hours than he has during the last couple of weeks. It was really good to see.

We also had the added bonus of some more company from Texas. My oldest brother and his wife, Bryan and Tina, came in on Friday night and spent the weekend here with us. We were really glad to see faces from home.

We are saddened more today as April 9th was our original 100 day mark. We should have been making plans to go back to Texas this week. Things do not always turn out the way that you plan. We miss hiding eggs and going to church with our family, but we know that Ross understands the true meaning of this Holy Day as he is living it right now. We still miss our baby.

Happy Easter from North Carolina,
The Joiners

Please say extra prayers for the Trimper family. Their oldest son, Max, had a seizure on Friday night. If you recall, they are the ones that helped us get to Duke in December.

Wednesday, April 7, 2004 9:20 AM CDT

WBC is 5.0!!!!

Good way to start the day. Trevor's WBC is inching up which means that we may get to take him out of the hospital sometime in the next couple of weeks, at least on a 4 hour pass. Of course, we then remember that these cells that are growing are his own so that kinda takes the wind out of our sails. Also, this number does reflect some of the granulocytes that he gets from Joe, but we figure that only accounts for about 2.0 of it.

He does seem to be feeling a bit better. His spirits are up and he talks some although it is very raspy. He walked about halfway down the hall yesterday on very shaky legs, but he did do it! We are so proud of him and he is trying very hard.

You would think being 1500 miles from home, it would hard for anybody to make a surprise visit, but we had one yesterday and it was a big one. My boss at Incode, Dusty Womble and his wife, Leisha, showed up in our room yesterday morning for a visit. I am still in awe that they took the time to come all this way. I mean, these people have 6 kids! Of course, Joe and I were in the middle of our morning tag-team routine and I was on my way back to our apartment to change clothes and take a shower when he called me to come back to the hospital. So there I was with a ball cap on, no shower and still wearing my clothes from the day before. Seems that I would have at least ONE loyal friend back at home that could have given a sister a heads up!

Anyway, they stayed a couple of hours and we all had a nice talk. Leisha has sure done her homework and was really up to speed on what we are trying to do. As they were leaving, she reached down to kiss Trevor on the head and he looked up and smiled at her and reached for a hug. It was really cute. They brought gifts for Trevor that included a huge Breyer Truck and Horse Trailer and Texas Tech basketballs and jersies signed by Martha Sharp and Bobby Knight. We are honored that they came, even if I did look like a really dirty mommy! We are so lucky to be part of the Incode family.

Gaining some ground in North Carolina!
The Joiners

Sunday, April 4, 2004 11:36 AM CDT

Things are about the same here the last couple of days. Trevor's mouth is really not getting any better and he has pretty much quit talking. We are also battling some stomach problems now and he has started throwing up the last couple of days. Because he has not done much more than drink a few ounces of water every day, we are not sure where this is coming from. The doctors are guessing that the HSV might even be all the way down in his stomach. Again, that is just a guess which is pretty much all we get from them anyway. Hell, I can make guesses myself.

We also had to pull of some of the viral drugs because his kidney numbers have started to go a little off the scale. We increased his platelet parameters because his mouth is bleeding more than what we are comfortable with. This means he is getting platelets about every 48 hours as opposed to every 3-4 days.

We have been able to decrease his pain medication a bit so he is more alert. He does not seem to be in as much pain or he has become tolerant of it. We are continuing to get him out and walking a least once a day, but he is weak and needs conditioning.

One of the nurses (Carrie Graham) brought him some eggs and coloring kit so we did that yesterday and he seemed to enjoy it. He continues to blow kisses to all of them who come by to see him during the day. He tries really hard to be the cute little kid that he has always been.

His best buddy comes on Friday nights. This is a program sponsered by the family life program that teams volunteers with children. They come by and sit and play with the kids and this gives the caregivers a break. When Vince came in on Friday, that was the first genuine smile that I have seen Trevor give in 2 weeks. I think that he is tired of us! Joe and I actually got out to see a movie. I cannot remember the last time that we did that. I guess that it was good for all 3 of us.

Please pray for our boy a little more during this holy week.

Still not any better in North Carolina,
The Joiners

Thursday, April 1, 2004 3:30 PM CST

Thanks so much for all the encouraging posts. It just seems that with all of the bad news that seems to be hanging around us, some would begin to feel disheartened. I appreciate you all sticking with us.

We did meet with Dr. Kurtzburg the other night to discuss our options. At this point, we are still unsure what we will do next. We have chosen at this time to just get him well enough to get out of the hospital and rebuild some of his physical strength. Depending on whether he has any donor cells at that time, we will have some decisions to make. We will send him through all the normal studies that will test the progression of the MLD. Dr. Kurtzburg tells us that some of the medicines that he is on right now to treat transplant related issues, such as graft versus host disease are actually used on other ALD and MLD patients to slow the progression. Maybe we are still ahead of the curve.

The inside of his mouth is really looking bad and causes him pain. He will be getting Joe's granuolyctes again starting today. These do not really help with the virus, but will help to hold off any bacterial infection that might result from the viral infection. He is pretty weak and we try to get him up and about a least twice a day to walk a couple of laps in the hallways. That does not always happen as he sleeps a big part of the day. Laying in a bed for over three months can really make a little person weak.

I did go out and pick up a copy of Brother Bear yesterday and we watched it. He seemed to like it and even tried to laugh a little. It was good to see.

Another set of parents are going home today without their child. It is quiet on the floor and we offer them our prayers. They are amazing people with a whole truckload of faith and a beautiful red-haired ten-year-old boy with a Louisana accent. We wish them peace and I will miss Mary on the floor. I just hate that she has to go through this because it takes a very long while to make peace with losing a part of you.

Please pray for all the children and parents on 5200.

Very sad in North Carolina,
The Joiners

Monday, March 29, 2004 8:29 PM CST

Dear Friends,

In the risk of running you all off, I am afraid that I have some bad news to report…again. It seems that we all have gotten more than our fair share of that. We received the preliminary report on Trevor’s RFLP test and it is not showing any donor cells. Again his own cells grew back. This is just a preliminary test and they are re-running it, but we do not expect the outcome to change. We are pretty devastated…again… and we are not sure what we are going to do next. It seems that there is not a miracle out there for us.

Part of us wants to get him well and take him home, but the other part knows that he will never be well if we do that.

We do not know what our options are at this point as I just did not feel like looking at any of the doctor’s faces and listen to them blab on and on, like they have any idea what the hell is going on anyway.

Devastated, confused and really pissed off in North Carolina,
The Joiners

Thursday, March 25, 2004 4:36 PM CST

Day 30
WBC-???

WBC is actually 2.5 today, but again, he got a donation from his daddy so this inflated his counts. His mouth is still really bad. We started some new medicine for that and hope it will help some. Other than that and waiting for test results all is well here.

I want to tell you a story today. This is just one of many stories that have touched us over the last couple of months.

When our ordeal first began back in late-November, we had no idea the amount of people that would open their hearts and checkbooks to us. I made a pretty good attempt to try to send personal notes to all those individuals. After our admittance to the hospital and faced with the sheer reality of life on a bone marrow transplant floor, I gave up that effort and chose to focus on learning things like what a CBC (complete blood count) really was and what it meant, what medicines did what and the possible side effects of those medicines. Every time I went to the mailbox or a package was delivered, I would want so much to do something for that individual or club or organization that had taken the time to drop a note of encouragement or a Christmas gift in the mail to the boys. Realistically, I knew that would not happen.

I did get something today that touched me to my very soul. Trevor received a manila envelope from a 3rd grade boy named Robert whom we have never met. This boy’s teacher is a friend of mine from daycare and she has a daughter that was in Ross’s class. Apparently, she shared our story with her class and has been giving them updates on our situation. In this envelope was a card that was signed by everyone that attended his recent birthday party, a note from his parents, and quite a bit of money. At a time when a 3rd grade boy should be dreaming about opening presents at his birthday party, this young man requested that contributions be made to Joiner Boys Fund.

To Robert, you are a remarkable young man and I am sure that your parents are extremely proud of you. We are touched by your selfless request. I wanted you to know that every bit of this money will go to the fellowship that will be created here at Duke to study and hopefully find a cure for this dreadful disease so that no child will suffer it again. With your act of kindness, Ross’s legacy will live on. You have a special place in heaven because I know that Ross is saving you a seat.

Humbled again in North Carolina,
The Joiners

Tuesday, March 23, 2004 9:04 PM CST

Day 28
WBC 1.0!!!!!!!!!!!!!

Another bang to start out the day. Trevor held his WBC at 1.0 without any help from his dad. We are really excited about this and it is a really good sign. Please let them be donor cells! Praying these are donor cells!

We are expecting his counts to look strange again tomorrow because he got a boost again today from Joe. He will also get them tomorrow and Thursday. Depending on his mouth sores and how high his counts go with the boost, we may stop this. He is just not getting any relief in his mouth and I feel so sorry for him. It is really wearing him down and he is starting to not believe that it will ever get better. It just takes time with transplant kids, but it is hard to make a 7 year old understand that. I am not sure that I even understand it.

We still have that final hurdle about the cells that are growing. We are so hoping and praying that they are donor
cells. We could know as early as this week, but are not expecting it until next. In the meantime, we wait...and wonder...and worry.

Waiting, wondering and worrying in North Carolina,
The Joiners

Monday, March 22, 2004 10:54 AM CST

Day 27
WBC 1.1

Ok, so this is a pretty good number for WBC. We are excited that he has able to hold onto this high of a number without getting granulocytes yesterday. Tomorrow will be the true test and we are anxiously awaiting that.

We think that Trevor feels a little bit better the last couple of days. His mouth is still pretty much covered in sores, but we are able to hold the pain at bay. He is talking more and more and even laughing a little with the nurses. This is a good sign. Emma is scheduled to be released today and we will miss her on the floor, but they have the apartment right next door to us so we will see and play with her again.

One of Joe's longtime buddies that now lives in Tennessee was able to come and spend the weekend with Joe. I know that Joe really enjoyed seeing him again and we are grateful that he came to break a little bit of the monotony around here. For those of you that know Joe, you know how hard it is for him to sit still. He is doing a great job. Thanks to David for coming!

Ross has a new playmate today. This little boy was named Joshua and he was about the same age as Ross. Their diseases were different, but their stories were the same. He loved Elmo and had a smile that would brighten the gloomiest of days. He also had amazing parents and we were so hoping that they would not have to experience this. His mother was so very strong and she claimed victory for her son the day that he passed. Please offer a prayer for her and her husband at www.caringbridge.org/nc/josh.

Having a rough day, but looking forward to a brighter future in North Carolina,
The Joiners

Friday, March 19, 2004 10:42 AM CST

Day 24
WBC ?

We are still here and are still doing pretty well, considering. Trevor's mouth sores seem to be getting a little better. They are still extremely uncomfortable for him, but he is being a real trooper. He has even laughed a little this morning at his dad being silly and it was good to see. He has not done much laughing or talking lately because of his mouth. The cultures came back on it and it is HSV. I am not real convinced of this because HSV usually grows within 24 hours of culture and it took 5 days for it to grow. But again, nothing is as it appears or should be in this place.

His body still has a pink tint to it and he looks a little rashy. We are hoping that these are signs of engraftment. The morphine drip is still in place and makes him pretty high. He is sleeping more and more during the day and I am glad that he can rest. We are still getting him out in the hall for exercise some, but he does not much like it. That is just too bad, we need to keep him moving and his lungs clear. So far, so good.

He will not get any donated cells from Joe on Sunday or Monday. We hope to be able to gauge his cell growth during those days. Our next hurdle will be to see if they are donor or host cells. We might know by the end of next week at the earlist.

We are still doing pretty good. We miss home and our friends, family, house, cars, jobs and the list goes on. Knowing that it is all there and waiting for us is what is keeping us going. That and, of course, the never-ending support and prayers that all of you have shown to us.

Please please pray for donor cells!

Still full of hope in North Carolina,
The Joiners

Tuesday, March 16, 2004 8:08 PM CST

Day 21
WBC 0.3

Still looking at the counts coming up! We are pretty excited about 0.3. This is actually the count from yesterday. Trevor started to receive Joe's granulocytes yesterday, so now his counts are off. He showed to be 2.1 this morning, but again, we know that is the result of Joe's donation.

Trevor still continues to feel pretty lousy. We started him on a pain pump with morphine and he stays really loopy. He does not spend too much time in the hallways these days as he really does not feel up to it. His mouth is really hurting him, but all the cultures for viral and fungal infections have come back clear so far. Again, these are all good signs to us. It is unfortunate that he has to hurt, but he just breezed through it last time, so we are actually excited that he has to work at engrafting. Please, please let these be signs for DONOR cells.

Thanks for all the uplifting words after my last post. We miss our baby every minute of every day and are adjusting to life without him. It will just never be the same and it is very hard to let go of what your future might have been.

Working hard at growing cells in North Carolina,
The Joiners

Sunday, March 14, 2004 1:51 PM CST

Day 19
WBC 0.2-Please God, let these be the right ones.

Started the day off with a bang and found out that our WBC is 0.2. Not much, but it is a start. Trevor is having quite a bit of pain, especially at night. The last couple of nights, we have been battling that with IV morphine. Today, we finally started him on a continuous drip. He actually took a nap today and I think that is because he is not getting much rest at night. He still trys to play and laugh, but he is just not himself right now. Hopefully soon, he will have cells growing and will feel better. The mouth sores are really spreading and we have had those cultured to see exactly what is going on with that. Should find something out in the next day or two.

Joe is still adjusting to life with a central line. He was still a little sore yesterday, but is much better today. He will start pheresis tomorrow morning and we are hoping that his granulocytes will help with Trevor's mouth some.

Mom and Dad are leaving for Texas in the morning. We will sure miss the other adult company. They have been a great help this week with packing and sitting with Trevor so that we could get a couple of things done.

The chuch came to get Ross's stuff today. It took a lifetime to acquire, a day to pack, and about 5 minutes to load. It hurt like crazy, but we are trying to work through that. Have good days and bad days...today is a bad one.

Optimistic through the tears in North Carolina,
The Joiners

Friday, March 12, 2004 6:56 PM CST

Day 17
WBC 0.1

Just wanted a quick update tonight to let you know that Joe was a very big boy and you all would have been so proud of him! He had his placed today and is a bit stiff right now, but he is doing well. He will start pheresis on Monday. This involves sitting in a room for two hours hooked to a machine. Joe has never been very good at sitting still, so this will be his (our) our next challenge.

Trevor did not get any magical count last night, but again, that is just fine with us. He continues to charm the socks off all of the nurses. He has so many wives and girlfriends that I am sure he is breaking some laws. If you ask him if Emma is his girlfriend, he just turns bright red and runs off. I think he might actually be serious about this one! It is good to see him do normal things like that in this place where nothing is normal.

He is feeling a bit weak and puny, but you cannot hardly blame the guy. The weak stomach is still our main problem it seems along with a couple of mouth sores, but nothing we cannot handle at this point.

Thanks again to all and please, please include us again in your prayers.

Always remembering and still hurting, but waiting for those new cells in North Carolina,
The Joiners

Thursday, March 11, 2004 2:43 PM CST

Day 16
WBC 0.1

Going pretty well for Trevor. He still has basically no counts, but it is too soon anyway. For some reason, I find myself not wanting him to breeze through this like last time. Overall he feels pretty good. His stomach is still a bit queasy and you just never know when something is going to erupt, but all in all it is not bothering him too much.

Joe is scheduled to have his line placed tomorrow. If Trevor does not reach 0.3, then we will continue. If he is at 0.3 or above, we will not have the line placed tomorrow, but wait another couple of days to see what happens. I think that Joe would really really like that number to come up! Should be interesting to see how the big man handles having that line dangle out of his chest!

I am so glad that all of you enjoyed the new pictures of the boys. It was really hard to sift through them to find the right ones. Every one of them brought a memory roaring to the surface. I know that someday, I will take much comfort in that. Right now, in this place, it is still pretty painful.

I spent most of the day with my parents packing up much of Ross's stuff. Forest Hills Baptist Church here in Raleigh, which has pretty much adopted us, has graciously offered to come and get it and make sure that gets to specific children in need. So, for those of you that sent so much at Christmas and during our overall time here, I just wanted you to know that you have again brought a smile to a small child somewhere and much gratitude from another weary parent. Seems a fitting tribute to our Ross.

Please pray for the RIGHT counts for Trevor...and for Joe.

Hoping, hoping and hoping some more in North Carolina,
The Joiners

Tuesday, March 9, 2004 10:23 AM CST

Day 14
WBC - ?

Sorry (again) for the delay in posting. Yesterday was a busy day for me.

Trevor is really doing well. He has some bouts with nausea, but they really do not slow him down much. He gets a drug called Cyclosporin as a preventive measure for Graft versus Host disease and it really gives him the shakes. This really irritates him at school and therapy time because it makes it hard for him to grasp a pencil or pick up small objects. He and Joe are still tearing up the hallways so he is getting a lot of exercise. You know that a 7 year old boy must be bored if he actually asks to do squats! His legs are really strong, thanks to Daddy!

In our typical run of luck, my central line became infected and it had to be removed yesterday. We are going to watch Trevor closely over the next couple of days and see what his counts start doing. With him getting my granulocytes, his WBC count has been inflated. He will not get any more the rest of the week because of my infected line. If he starts to show some counts in the next couple days and remains infection free, we will consider it safe to stop. If not, Joe will have a line placed later in the week and we will start donating to him again.

My parents will arrive tonight for a couple of days and also to pack up Mom's stuff that she acquired while here. I know that Trevor is really looking forward to seeing his granddad. When he gets angry at me (thanks to the steriods) he will tell me to "Go Get Marvin". I guess he thinks that Granddad will come to his rescue...and he mostly does.

Thanks again to all of you.

Please pray for engraftment for Trevor, we really need your help and the coming days will be critical.

Still broken hearted, but waiting for our miracle in North Carolina,
The Joiners

Friday, March 5, 2004 8:31 PM CST

Day 10
WBC - 0.0

It was good to get back to Durham today and see Trevor. We were both really ready to put our hands on him. Thanks to Amy and Cheri for taking such good care of him while we were gone. All of the doctors and nurses said that you did a great job and he tells me that he had a great time. I can tell from all of the new stuff on his board and in the room that you had a busy week!

Ten years ago today, I gave my heart and my life to the most incredible man. We were a bit of an odd couple; the aspiring CPA/Financial Executive and the Cowboy, but we found a way and made it work, not that is was always easy. We were full of hopes and dreams for our future that included mortgages, careers, children and grandchildren. On our way back from our honeymoon in Cancun, we promised that we would take another honeymoon at about the 10 year mark. Little did we know that we would be traveling back to Durham for that second honeymoon, but the fact is that our future and our dreams are in Room 5210 at Duke University Hospital and this is the place that we were meant to be.

Just wanted to say that I love you, honey, and I would not have traded a single minute. In answer to your question, there should be a whole lot more of you in this world. Happy Anniversay, you are still the only one for me.

Please pray for Trevor, the coming days are crucial for him.

Still missing Ross constantly, but reunited and celebrating, in North Carolina,
The Joiners

I forgot to thank Sherri Wheeler and Beverly Atkins for the beautiful flowers. You guys took what little information I gave you and ran with it. They were perfect for Ross.

I would also like to thank Allan Adams for arranging a beautiful service with such little time. I will forever remember the wonderful things that you did for us. You made a very difficult time so much easier for all of us, and I know that you and your staff were all hurting for our family through it all. Second only to the bond of family are the bonds that form around a small community.

Wednesday, March 3, 2004 3:38 PM CST

Day 8

Dear Friends:

On a cool, wet and misty West Texas day, we laid our baby to rest. We had a beautiful
ceremony with hundreds of very dear friends and family. Because of those friends and
family, we were able to say good-bye to our sweet baby boy. Actually, as Brother Dennis
so eloquently put today, we simply said “Farewell” to Ross for now because we know that
we will see him again....someday. We will forever miss him and our arms are empty but
our hearts are full for having him in our life, even for such a short time.

We know that Ross touched many lives and we are thankful for all of the support and love
that have been shown us these last couple of months, but especially these last few days.
Thanks so much to Dennis Williams and George Johnson for the beautiful service. Thanks
to Michael Joiner for singing beautifully. Thanks to John Schoepf for such a touching
tribute, we are so proud of the man that you are becoming. Thanks to all that sent flowers
and food. We will remember it always. Thanks to those really special people that made
sure that we made it home to our very own house last night in one piece. Thanks to those
that made sure I was able to fall asleep last night in my very own bed. You know who
you are and I love you so much.

We will be returning to North Carolina on Friday and are actually looking forward to it.
Trevor and his health will be our main focus as well as our salvation. We are missing his
smile and overall sweet disposition already. It was good to see home and so many people,
but it is time to return to battle. Besides, I am sure that Amy and Cheri are in need of rest!
Thanks, girls, for taking care of our most precious son so that we could come home with a
clear heart and honor Ross. Thanks to the nurses and doctors on 5200 and 5600 for
trying so hard for Ross and taking such good care of Trevor in our absence.

We still are in need of your prayers for Trevor, he still has quite a road ahead of him.

See you soon Trevor!

Farewell to you, Ross...till we meet again. Godspeed.

Grieving, but healing, in Texas,
The Joiners

Saturday, February 28, 2004 6:27 PM CST

Dear Friends and Prayer Warriors,

It is with a heavy heart that I post tonight.

Ross David Joiner lost his battle earlier this afternoon while laying the arms of his mommy and daddy. He really fought hard in the end, but was just too sick. The last couple of weeks really took a toll on him. We let him go and we know that he is running and playing right now.

I would ask that you remember him as a smiling, laughing and loving little boy that was full of potential. I would also ask that you not be afraid to speak his name or remember him while you are in our presence. We will hurt, but we will always love to remember with you.

We will always regret the outcome, but we will never regret our decision to give The Bull a chance at a full and productive life. The fact is that it was only a matter of a few years that we would lose him, and we chose to lose him while fighting. If nothing else, we gave him a chance and the dignity that comes with a good fight.

We will be taking him home to Texas this next week. We have made arrangements for some very special people to come and stay with Trevor for a few days.

Trevor continues to do well and we are thankful for that.

Rest in peace and with God, Rossy. We all know that Jesus loves little children. Mommy and Daddy and Brother will love you forever.

Grieving in North Carolina,
The Joiners

Thursday, February 26, 2004 8:24 AM CST

Trevor’s Transplant #2-Day 3

Seems to be going OK with the new transplant. Trevor has been feeling pretty good and his spirits are good also. His Granddad went back to Texas so we are trying to pick up the slack. Both grandmoms are still here and that sure helps. His counts are going down, as they should and now it is just a matter of waiting for the new cells to grow and grow. He and Emma are really becoming big buddies. They played for a long while yesterday in the playroom and are just so cute together. We are so hoping that this transplant is meant to be…

Ross is still very critical. He really looks great, considering. The excess fluid it not really an issue any more. They continue to suction his lungs out through the trach tube in hopes to keep his lungs light. His xrays are still looking good and the remaining infection seems to be centralized in the right lung. His left lung does not appear to have any infection at all. I had my central line placed on Wednesday and they pulled my white blood cells yesterday and gave them to Ross. They actually only pull the piece of the cell that is the infection fighter called granulocytes. The process is called pheresis and it takes about 2 hours for me to donate. I will do this 3 times a week for right now and they can pull enough to last for three transfusions into Ross. These granulocytes only live about 12 hours in the body, so Ross will get them every day. They will probably make him a little sick at first. It is kinda like getting a paper cut on your finger. You know how the area will actually become red and sore and a little inflamed before it gets better. We expect the same to happen with his infection. This is something that we expected to do with Trevor anyway and we do not even know if it will help Ross, but we are trying to give him all the support that we can. They will start to split the bag between the boys next week and, if needed, Joe will have a line placed also. Right now, Trevor has no signs of any infection, but we need to keep it that way.

We thank you all again for the support that you have given us. Things are rough here, but we are doing OK.

Holding up in North Carolina,
The Joiners

Monday, February 23, 2004 11:11 AM CST

Sorry for the length of time since the last post.

Trevor started his new Chemo regimen on Thursday and has the last day of it today. Tomorrow is transplant day. This chemo has hit him pretty hard and he is not at all interested in doing much. He tries, but just does not have the energy. It also has made him pretty irritable, and for those of you that know Trevor, that is just not like him at all. Emma comes around a couple of times a day to try to get him out to play and that seems to booster him a little. They both have remote control cars and we race them in the hallway. We also took some walkie talkies up there and are gonna see if they can talk while in the rooms. We are looking forward to the transplant and the doctors tell us that his chances of engraftment are pretty high. Crossing our fingers........

Ross is still in ICU and very critical, but is making baby steps forward. Most of the excess fluid has been removed and he looks so much better. Now it is just a matter of time for his lungs to heal and take over from the vent. All we have is time so as long as it takes, we will keep at it. We just really need to see more improvement in the next few days.

Please, please pray without ceasing.

Still very grim, but very determined, in North Carolina,
The Joiners

Thursday, February 19, 2004 3:38 PM CST

Dear Friends,

Not too good of a time here in North Carolina. Long post-here goes.

Ross is still very critical, but today was the first time that I was able to enter his room in the morning and actually feel that we are making progress. He is retaining a bit of fluid and we are trying to get that out as it is messing with the pressure of the ventilator. Some of the medications that transplant kids are on can hurt the kidneys temporarily. Because he has been been on pretty high doses of some of them for so long, his kidneys are starting to show the damage. All of this damage is completely reversible when you remove the drugs, so no, we will not need new kidneys. We have started him on a three day course of dialysis to help and we have already removed most of the excess fluid. His xrays are getting better each time, so we feel that the infection is very slowly clearing. We knew when we had the trach tube placed that this would be a marathon and not a sprint, so all in all, we are doing OK.

We started Trevor's first dose of Chemo today and he was a little nauseated right after. He is now sleeping it off. Maybe this will save us a little money at the snack machine as he was eating everything in sight! Of course, I would buy him the entire machine given the choice.

The really bad news that we received yesterday was that Ross did not engraft. He, like Trevor, grew his own cells back and not the donor cells. Basically, his immune system was also just as strong as Trevor's and he kicked them back out. While we are disappointed about this, it is secondary to his problems right now and we have chosen to not waste much energy on this. Luckily, with him, we have a little more time to try again as the disease is not that far progressed. We do not have that time with Trevor as the disease is working too fast on him and feel that this is our window and we must go for it now.

I will probably not post on a daily basis right now, I just really do not have the time. If anything changes, we will update immediatly. Please continue to check on us and support us through the guestbook.

If you have not already done so, please take a minute to look at the Trimper's web site at www.caringbridge.org/mi/trimpermld, specifically the journal entry for February 18th. You will find some information about the next fight that we have on our hands with repairing the damage that Trevor and other kids with MLD already have. While I have not yet spoken to them, I plan to discuss pooling our efforts with them. They are going for 2 years of a research scientist to devote to the leukodystrophies and mylein repair. Imagine what we could do with 2 scientists for 2 years! All of you have opened your hearts to us, now I am asking you to keep going. If you know of any businesses that would be interested in making just a $1,000 donation for the next two years to their foundation, which is tax deductible, it would make a huge difference with the quality of life that Trevor, Max, Emma and Dominic could have. This disease will not stop and the chances are it will come up again somewhere down the line in our family. WE have to blaze the trail for the ones that will come after us.

Grim, but determined, in North Carolina,
The Joiners

Monday, February 16, 2004 11:36 AM CST

Day 47

Sorry for the delay in posting. We lost our internet connection for a couple of days.

Not much new to report and that is really good news right now. Ross is still critical, but stable and is holding his own. He improves a tiny bit everyday, but we have nothing but time to allow him to get better. His Xrays come back a little better each time and the infection is slowly clearing. The main worry that we have right now is fluid retention. We are working the next couple of days to move that out. He is heavily sedated and they also have him on a paralytic that keeps him totally immobile. They reduced the volume of this one in order to allow him to move just a little and try to shift some of the fluid so that he will drain it. He opened his eyes and responds to us and it was really good to see. He is not at all happy about it! We so very much need your prayers and support for him as he has a long way to go.

Trevor is just doing great, although I have not seen him much the last few days. His labs are all looking good and the little infection that was growing in his cultures seems to have gone away. This is also good news as we are ready for round 2 with him and hope to begin on Wednesday. He and Emma, our new MLD warrior on the floor, have really formed a great friendship and it is just so cute to watch. They have played basketball and sang songs and are just having the best time with each other. It is amazing how children can seem to just keep going each day. I think that it is a blessing that they do not fully understand the magnitude of what is happening to them. I feel as if Trevor knows that he is safe wherever Joe and I are and we both take huge comfort in that.

Thanks to the many all over that are supporting us during this difficult time. We are very weary and very scared right now, but we take much comfort that so many people keep sending positive thoughts and prayers our way. Also, thanks to the many of you that sent the Valentine greetings to the boys.

Please continue to pray for and think of Ross as he really needs it right now. God bless his little heart.

Slowly improving the pattern in North Carolina,
The Joiners

Friday, February 13, 2004 2:27 PM CST

Day 44

Not much new to report here. The culture on Trevor so far has been negative for the virus, so we are hoping to start on schedule next week with him again. This is good news.

Ross is still in ICU and is still holding his own. His numbers all look good and he seems to be improving in baby steps. His xrays are coming back better each time. You can now see the outline of the heart through the right lung and we could not before. That means that some of the fluid is draining. The good news is that the bug has been identified and is bacterial. Any parent can tell you that this is better than viral as it can be treated with an antibiotic and we have started him on the proper course. The doctor actually went to the pharmacy and picked it up and took it straight to him. We did not want to waste time waiting for them to send it over. He is still very very critical and we are still terrified, but every hour and every blood gas that we make it through is an hour and lab report that we WIN!

The way that we see it, 100 baby steps is the same as a giant leap, right?

We are cautiously optimistic. Our hope is a valuable commodity, but one that we are willing to risk 100%.

Please pray without ceasing.

Holding the pattern in North Carolina,
The Joiners

Thursday, February 12, 2004 3:18 PM CST

Day 43
Dear Friends:

As most of you have heard, we have experienced some problems here. First, Trevor continues to feel really good. His only complaint is that the food is not coming fast enough. He is starting to get that “post-transplant” look with round cheeks and a little mustache. He will probably grow more hair on his face than his baby-faced daddy ever will!

We had a pretty major setback with Ross. As I have written before, he has been experiencing some airway problems. Well, they finally got the best of him. On Tuesday night, he began to really have to work very hard to move any air. Finally, Wednesday morning, he just pooped out and could not get enough air into his lungs to keep his body oxygenated and he dropped to a pretty low level. At that time, we took a quick X-ray and it showed that his right lung was pretty cloudy. So the problem became twofold with his upper airway constricted and his lung also showing some sort of infection. We made the decision to move to the Pediatric ICU unit so that they could monitor him much closer. When we arrived over there, they made another quick decision to put a tube down his throat for an airway. The problem with that was that the only tube that they could get past his upper airway constriction is made for preemie babies and it would not allow the lungs to inflate all the way as it was just too small. Also the swollen tissue would push it back out. So off to surgery for a trach tube…

Yes, he is on a ventilator, but he did NOT stop breathing. We made the decision to do his breathing for him as his body was just too tired to continue. He is very, very critical and we are very, very scared, but we will not stop fighting and we all know that The Bull will not stop either. His stats are now good and he is resting, finally. Because of the trach tube, he is on medication for sedation and also to keep him totally immobile. He looks pretty scary with all of the tubes and wires connected to him, but his color is good and I can tell that he is finally getting that rest that he so needs. We are suctioning off his lungs on a regular basis and are attempting to isolate the infection. Regardless, he is on a wide range of meds to cover whatever it is. The next couple of days, we need to see some signs of improvement, but it will probably be a few days or even a couple of weeks before he is off the vent completely. I asked the Doctors if it was possible to for him to clear the infection and they assure me that it is possible and that is what we are clinging to right now.

As far as transplant issues go, even after the trauma of surgery, his WBC is at 2.2! His body is making the cells that it needs and this is the best news and we really needed it right now. Trevor was to start Chemo yesterday, but in light of Ross’s condition, we have opted to put it off until next week. He also has a virus that has grown from a blood culture that we would like to get a handle on before we begin. No symptoms and it is not bothering him, but it is just showing active in his cultures.

Very grim, but full of possibility, in North Carolina
The Joiners

Monday, February 9, 2004 11:08 AM CST

Day 38

Still here and hanging in there. Let's get right down to business: Ross's WBC is at 1.6 and he is officially engrafted! We are still having some upper airway problems, but we are managing those. We talked about putting a breathing tube for him, but have about decided that he is getting much better on his own. He is working really hard to move air and he is still pretty exhausted, but he is not honking when he breathes anymore and his nose has all cleared up. He still coughs some, but he is no longer puking several times a day. I rode down the elevator with the doctor that is on rotation the next three weeks and we talked for a few minutes. He feels confident that Ross will be released during his rotation. Man, that would be great for him to continue to feel better and get out of this joint and back to the apartment.

We will start chemo again for Trevor on Wednesday with the transplant to follow on Monday or Tuesday of next week. Slightly different protocol with just 5 days of chemo, but the doctors think that will be all that is needed. He stills feels great and continues to eat everything that comes within reach. His little cheeks are really starting to get round. I will post some new pictures soon.

Tracy and Gary Autry were here this weekend and it was great to see them. Tracy and I went to a real restaurant and had a real meal...very luxurious! Joe did the same with Gary and it was good for both of us to get away for a few hours. We hated to see them go, but they have jobs and babies of their own. It is good to know that real life is going on around us!

Exhausted and Excited in North Carolina,
The Joiners

Friday, February 6, 2004 7:30 PM CST

Day 37

Things are going well in North Carolina! Ross WBC is 1.0 and today was the first day with his ANC counts over 500. If he holds it for two more days, he will be considered engrafted. We will do the same test of donor cells on Monday, but again, we feel confident that his are and we are going to hold on to that and not drive ourselves crazy over the weekend waiting and worrying. He is really starting to feel so much better and is finally getting some sleep - which means that maybe mommy and daddy will also get some sleep at the same time!

No change with Trevor, he continues to do just great. That will probably change next week as we will start his new Chemo regimen on Wednesday to be followed by a transplant next Monday or Tuesday-not sure of the day just yet on that.

In the guestbook is a new MLD warrior named Emma along with her caringbridge address. She is 8 years old and will be entering the unit on Monday. Her mother rented the apartment right next to ours and she is just a beautiful little girl. I thought you might want to read her story and send a prayer for her as she begins her process. Again, here is another child that should not have to be in this place. Another reason for us all to come together and find a way to stop these metabolic disorders that are "rare." Because they are considered "rare", should they be ignored? Again, this is something that I intend to work on someday.

Things are looking up in North Carolina!
The Joiners

Thursday, February 5, 2004 9:01 AM CST

Day 36

Again, sorry for the delay in posting. I know that you worry when that happens.

The boys are doing pretty well. Trevor is still kicking pretty much the same and doing really well. His checks and tummy are getting pretty round. We think that it is from the steroids, but I think it is because he is eating everything that he can get his hands on. He is pushing 51 pounds, and he has pretty much always been scrawny. It is good to see him eating! Right now, it looks like we will begin the second round of chemo on Monday or Tuesday. The doctor came by last night and said that they had a plan and as soon as it is signed off with the review committee, they will discuss it in more detail with us. Joe or I will be donating white blood cells to him after his transplant. Because his counts have been so low for so long, it is just a little insurance to make sure that he remains virus free. We both were tested yesterday and they will let us know which one would be a better donor sometime in the next couple of days. This is a pretty easy process and will involve placing a central line just under the collarbone then connecting to a machine for a couple of hours every few days. They will farm out the white blood cells and give all the other back so that there is not much blood loss.

Ross’s WBC is 0.5! He is really starting to take off with his counts and this is just the best news. Of course, we worry that the same thing will happen with him that happened to Trevor, but he is showing many more signs than Trevor ever did, so we are all confident that we are looking at donor cells coming in. He has some respitory problems and we are watching him close, but he is moving air and his oxygen level is pretty high. His upper tract is pretty swollen so he is really working hard to push air into his lungs and he is just exhausted. We expect this to get better as his cells get stronger. We are keeping him comfortable and the Pediatric ICU team is also monitoring him. We are just hoping that we will not need to place a breathing tube as this would be a surgical procedure and we really do not to put him through another one of those.

Cheri and Amy from Kids Kingdom came last week and spent a couple of days with the boys. It sure was great to see a face from home! They worked really hard with the boys while they were here and gave Dad and me a little break. These girls have been a huge part of the boys lives (and ours) since they were born and Ross and Trevor were both glad to see them. Ross was pretty sick at the time, but he sure recognized those two as friends and not enemies when they came through the door! He is pretty insecure when it comes to the nurses and doctors and feels that it is his duty to fight with them on every point. Tracy and Gary Autry will arrive tomorrow night for a weekend stay and I can’t wait to see them!

Did you guys notice some of the Lady Raiders, both past and present, had signed the guestbook? I was pretty excited to see that. We are overwhelmed that these girls took the time out to check on the boys, especially with March Madness in the not too distant future. It never ceases to amaze us at the loyal followers and prayer warriors that we have. We are honored that you all take time out of your days to check on us and send a little extra prayer our way.

Still a huge Lady Raider fan, sometime Blue Devil fan, but NEVER a Vol or Longhorn fan in North Carolina,
The Joiners

Monday, February 2, 2004 3:30 PM CST

Day 33

So sorry that I have not updated any sooner, but time really slips away from me each day. I truly did not mean to leave you hanging after my last update, but I needed to not only gather myself, but also wanted to have more information for you.

With regards to The Bull, he finally decided to get it together and grow some cells! He is at 0.3 and we are so excited! He still is not feeling just real great and continually fights nausea, but he is so much better. We really needed some good news this week and he sure deserved it considering how hard he has been working on it.

Trevor is still doing really great and we continue to be thankful that he feels so good. He has no bad memories of being ill or having pain, so he took the news that we have to try again pretty well. I spoke at length with Dr Kurtzberg on Friday night and she feels extremely positive that Trevor is up for it again and she is in complete agreement that we not give up on this boy. The preliminary studies of his organ functions have been as well or better than when he was admitted. They have located a match at the cord blood bank so we are ready to go. We will probably start chemo again sometime later this week or early next week with the transplant to follow shortly. We will not have to hit him quite so hard with chemo this time as his immune system is already pretty weak. The doctors will get with us on Wednesday when Joe is back to discuss the new protocol and what they have decided as the best course of action to ensure that it does not happen again.

There has been another little boy who is 2 1/2 admitted to the floor that has ALD and another girl who is 8 that has MLD that will be admitted next week. Out of the 16 rooms on this floor that makes 7 that have metabolic disorders….and they tell us that these types of diseases are extremely rare and therefore, there is not much funding for research. I just don’t get it…something is wrong with those statistics. This will be my next pet project and I am not sure that I can help at all, but I WILL be heard.

With regards to the fundraisers that have happened over the last couple of weeks in Lubbock, we are just amazed at what fantastic people we have in our community! I so wish that I could have been there to see it. Joe was just overwhelmed. You guys have made it possible for us to stand up each day and fight for these boys, not only with the monetary and other donations, but with the donation of your time and prayers for us. We cannot begin to express how so very touched by what you did for us and these boys.
Thanks to those that worked so hard to solicit donations for the auctions and food booths as well as those that worked so hard to pull it all together. Thanks to those that came out and made all the events so successful. There are just too many to name, but know that we are honored and humbled by your generosity.

Not EVER giving up in North Carolina,
The Joiners

PS-I will be archiving and removing some of the old guestbook entries later this week to make a little more room and will post some new pictures soon.

Thursday, January 29, 2004 8:43 PM CST

Day 29

This will be a really tough post and I am not sure where to start. A few problems up here.

First, Ross is doing better each day. We are still pretty much at the same place with him. He really WANTS to feel good. He sits up and plays right through the puking! He loves to look at books and Dad finally went to pick up a couple more. We were getting REALLY tired of the three that we had in the room. He still is at 0.1 for WBC, but I think that will change in the next few days as he is showing more signs.

About Trevor, we have encountered a set back. He still feels just great and we are thankful for that. His WBC was 3.0 this morning. This news is not as good as it sounds. At about day 28, a test is performed that looks at the cells in his body. It is done to determine what percent of cells are donor cells and how they are growing. Unfortunately, this test came back that the cells that are growing are his own and not the donor cells. His own cells basically took back over and did not allow the donor cells to do anything. His immune system was just too strong.

Our options are to allow his own to continue to take over, and he would continue on his current path with MLD, or we go for round 2 and a new transplant. Knowing what we know now about Trevor and his immune system, there would be some changes in the Chemo protocol to ensure that it does not happen again. I honestly do not believe that we have come this far to turn around and go home. Joe and I refuse to give up on this boy at this point. It is not an option.

I know that all of you have questions about why and when and the truth is I just don’t know at this point. We plan on meeting with the Doctors sometime in the next few days and hope to find out more. As soon as I have more info, I will pass along. We are obviously very disappointed by this, but we are dealing with it the best that we can.

The fight is far from over, but I am just getting my second wind!

Not giving up in North Carolina,
The Joiners

Tuesday, January 27, 2004 8:22 PM CST

Day 27

Trevor WBC 2.6
Ross WBC 0.1-and holding

Quick entry again tonight. The cold weather eased a bit here today and Dad was able to spend some time at the hospital and it sure helped me! Still cold, but supposed to warm up over the next few days.

The boys get better everyday-Thank You God! Trevor is on schedule for release back to the apartment early next week. They are starting to show me how to change the dressing on his central lines and do all the blood draws. We will have to do this ourselves when we bust out of this joint. Joe is coming back on Tuesday or so and I have told the Doctors that I really do not want to release Trevor until he is back.

Ross continues to get better each day. He is still having some nausea and his little body is trying so hard to grow cells. We just know that they will start coming anyday now. Doctors are excited by how much better he feels and he has not run a fever in a couple of days. This is a good sign.

Still much I want to say about the fundraisers in a later post.

Thawing out in North Carolina,
The Joiners

Monday, January 26, 2004 4:24 PM CST

Day 26

Trevor WBC 2.5
Ross WBC 0.1-Not much to talk about, but we are getting there!


Quick entry today. It snowed here and ice on top of it so I am flying solo at the hospital and do not have much time.

Trevor is doing great and they are talking about him getting out early next week! Can you believe it?! Joe is supposed to be back by then so all should go just fine.

The Bull is feeling much better and we are slowly getting there. I think that he is just milking this for all it is worth.

There is so much that I want to say about the benefit this weekend...more to come on that at a later posting. Just know that all of you are such a great group of people. We are speechless...and I am not often speechless!

Freezing our tails off in North Carolina,
The Joiners

Saturday, January 24, 2004 9:42 AM CST

Day 24

Trevor WBC-2.3
Ross WBC-Nope, still not talking about it

Once again, I missed a couple of days and sorry for that. There are some days that I just cannot seem to make it happen. I know (and hope) that you are all looking for information from here and I really do try.

Trevor is just doing outstanding! He is still just sailing right through all of this. He has had virtually no side effects or pain. His counts are just rising and he looks great. He is eating more and more each day and we cut his salad in a bag down to just 12 hours per day. I am so very proud of what he is doing. His Best Buddy came and visited with him last night for a couple of hours. This is a program that matches volunteers to come and spend some time with the kids to give them a new face to see and also give the caregiver a break. They sat and talked and played in his room for a while. I think that Trevor really enjoyed it because he asked me this morning if "that guy Vince" was ever coming back.

Ross is bringing up the rear on this, but he still gets better every day. His vocabulary is expanding again. For a while. his only words were "NO" and "My mama". He is now telling me "I don't like it" and "No more". Hey, its a start! He is getting a little happier each day. The nurses actually brought me some Barbie diapers a couple of days ago and he sure looked cute. I am sure that his daddy would have had a fit!

We really wish that we could be in Lubbock today at the benefit roping. It sure sounds like fun and I am sorry that we missed it. Good luck to all the ropers, as well as those that bought the raffle tickets.

Still fighting in North Carolina,
The Joiners

Wednesday, January 21, 2004 1:51 PM CST

Day 21

Trevor WBC 1.6
Ross WBC-still not talking about it

Not much to report here and that is just about the best possible day that we can have. Trevor's counts continue to rise and we are still excited about that. He is a little quiet today and a little nauseated, but he still has worked hard on all his excerises and with school. He is just so ahead of the game and the nurses are really starting to fall in love with him. They have actually had squabbles about who is going to get assigned to him each day!

Ross continues to get better each day. He has been up and around and wanting to play more and more. He is even starting to like the nurses again. For a while, he considered them his enemy, but now he is smiling and laughing with them and starting to actually talk to them a little bit. We just know that his counts are going to come any day.

For those of you that know Trevor, here is a typical Trevor story. I was in Ross's room last night when I heard some nurses in Trevor's room. I hurried over there to see what was going on and he has huddled down in his bed with a couple of the nurses loving on him. He had told them all about how he missed his dog at home and her name was Missy. The nurses were just loving and hugging on him and they were telling him all about how he would be home soon and could play with her. He was looking at me with those blue eyes and flashing his father's dimples at me. I was just laughing at him and I had to explain to the nurses that not only did we not have a dog named Missy, but we do not have a dog at all! I think that they are starting to get an idea of what this boy is capable of! What a great kid!

Still growing cells and now telling lies in North Carolina,
The Joiners

Tuesday, January 20, 2004 1:08 PM CST

Day 20

Trevor-WBC 1.4 and ANC 1076
Ross WBC-We still are not going to talk about

New term-ANC. So we will have a little lesson. ANC stands for Absolute Nutrifill Count. In a very brief description, this is the measure of infection fighting white blood cells. A normal healthy person is around 11000-12000. Obviously, we have a long way to go, but we expect (and hope) for these numbers to zoom up over the next few weeks. Also, these infection fighters are very immature, but it is a start and we are just thrilled.

This also means that Trevor is officially engrafted! This is official when his ANC count is over 500 for three consecutive days and today is our 3rd day! This means that the new cells have made it to the bone marrow and are taking over. He has done it without any pain medication at all! He is just an awesome kid! He has fought so hard and we are so proud of him. We told him when we came out here that there was something going on in his head and that we had to come here to get it fixed. This morning when I was celebrating with him (yes, I cried a little) he asked if this meant that his head was all better. I finally was able to say YES it was better (by this point, I was pretty much a blubbering idiot) and soon it will be all healed. He has also started eating and we have cut back on his salad in a bag to just 18 hours a day. If he keeps this up, we could be back at the apartment with him in a couple of weeks. We are not in any hurry to get him out because of Ross....

Ross is doing better and he had a great night last night. He is still coughing up quite a bit but it is just leftovers from the Chemo. The same thing that causes them to lose their hair also causes them to lose the outer layer of their digestive system which is why there is so much nausea associated with Chemo. It is harder for the little kids because they tend to really fight the nausea. He still does not have any counts, but we feel sure that they are coming in the next couple of days. He is having periods of no fever at all, so we are hoping that his infection is on its way out the door. When that happens, his counts will probably come on up. We are pretty sure that he is making the cells as he is exhibiting all of the signs.

What a great day! Good news all around from North Carolina!
The Joiners

Monday, January 19, 2004 12:15 AM CST

Day 19

Trevor WBC-1.2 (yes that is a ONE in front of the decimal)
Ross WBC-We will not talk about it

19 days post transplant, can you believe it? We left home on December 4th and it is already 19 of January. At this rate, we will be home in no time.

Trevor is still doing awesome. His WBC is just sky-rocketing and we are so excited. He does not have any pain/fever/rashes to speak of. He has been out and about and doing his exercises and Grandad is working on sight words and all kinds of other things. He just amazes us with how well he is doing. Again, we are excited and thankful for that. His daddy had pretty much taken over all of the physical therapy while he was here. Before Joe left, I got a big lecture about how I cannot be soft and that I have to hang tough and not let Trevor whine his was out of it. Sure enough, this morning we had a small battle with it, but Joe would be proud of me! I hung in there and made Trevor do all of them with tears from both of us and everything. By gosh we are walking out of this hospital with a little hard work and the good Lord willing!

Ross is still doing pretty well. He has not had any WBC the last couple of days, but we expected that. He still has the nasty rash, but we are keeping him greased with various steriod cremes and they seem to help with the irritation. He still looks like a huge over-ripe tomato, but he is still my baby! He has run a pretty constant low-grade fever the last few days and it saps his energy a bit so he is not getting much exercise. I did get him out in the hallway last night and pushed him around on a roll chair and we raced a couple of the nurses. He laughed and giggled the whole time. We are keeping his lungs clear by having a couple of good screaming sessions a day. I am talking Bull-Style screaming sessions, loud and proud and echoing down the hallway!

Sounds like the benefit this weekend is going to be amazing! I just still cannot believe the generosity of so many organizations and individuals! I even heard a rumor about some raffles involving everthing from a horse to a Harley. I know that it has been such hard work for everyone involved and we cannot thank all of you enough. I wish so much that we could be there so that I could tell each of you in person and explain the impact that you all have had on us during this time.

We have also heard about some other things like the dinner at 4-Bar-K and the bowling day and the church dinner coming up in February. There have also been some auctions and fund raisers at the Lorenzo schools and Cooper schools and just too much to mention. It seems there are so many things happening that we probably are not aware of them all.

Again, we cannot thank you all enough for helping our boys fight! "Thanks" does not sound like much, but it comes from our heart and it is all that we have to give in return...so a thousand THANKS go out to all of you.

Still growing cells in North Carolina,
The Joiners

Saturday, January 17, 2004 5:18 PM CST

Day 17

Ross WBC 0.1
Trevor WBC 0.4 - yeah Trevor!!!

Yes-Ross's went down, but we expected that. We are still encouraged by his progress and know that his little body is doing all that it can. He is using all of his WBC to fight the infection that he has and he continues to improve everyday. He still has some bouts with fever, but it is not getting him down much. He has even been out in the halls some today with his daddy today. He still hates the mask, but he is just going to have to get used to it.

We are so excited about Trevor's count. He also just gets better everyday. He has felt so good through this and we were actually worried about that. (I guess you just can't make me happy!) He still looks and feels just fine except for a couple of bad headaches. We are making sure that he gets out of his room all that he can and Joe has been making sure that he continues to do a bunch of stretching and toning exercises. I have also asked the physical therapist to increase her visits to 2-3 per week. We think that he needs all of the conditioning that he can get.

Joe goes home tomorrow for a couple of weeks and we are very sad about that. We hate that he has to go back, but as I have said before, it is so important that these boys return to as much normalcy as possible. We want them to be able to go back and forget this ever happened. We want them to return to their house and their rooms just as they left them. We want them to know that our life is waiting on them to come back. We want to pick right up where we left off. Seems so much to ask, but we will accept nothing less.

I know that the boys will miss him terribly, but he will be back soon and maybe by that time we will be close to getting out of the hospital and back to the apartment. Ruby (Joe's Mom) will be returning with him and we will miss her also. She has been a HUGE help with the boys. Thanks so much to her for taking this time to come and help.

My father is arriving tonight to help pick up the slack while Joe is away. I know that he is looking forward to seeing the boys and my mom. Trevor loves to play games with Dad!

Growing cells in North Carolina,
Good Night all--
The Joiners

Friday, January 16, 2004 10:25 AM CST

Day 16

Sorry that I missed day 14 and 15, but it was pretty busy around here.

First, to those of you that have not heard, Ross did just great with his surgery. He was a real trooper. I was really not looking forward to him giving his new lines a good tug like he did with the first ones, but he has not even touched them. He is more concerned with the bandages on the old site. The good news is that we were able to locate the infection that was causing him so much trouble and have started the proper rounds of antibiotics and he feels so much better this morning. He has been up and playing and laughing and it is soooo good to see! He is still a bit swollen and puffy, but he still is just as cute as ever. The bad news is that this infection has put us in isolation and we have to be careful to not spread it to Trevor and the other kids on the block. Not that big of a deal, but just more of an inconvenience.

Trevor is just doing really great. He is pretty active with physical therapy and other things during the day. Joe gets him up and around as much as Trevor can handle. Our main challenge with him is making sure that he is stimulated enough. Luckily, Trevor has always been a pretty accepting of what is going on around him. Now that The Bull is better, we are trying to focus more on his school work and handwriting. We are hoping that we are home in time to start him on some summer classes or something to help him catch up.

OK-THE REALLY GREAT NEWS HERE…..

The Bull’s white blood count was 0.6 this morning! Yeah!!!

Trevor’s white blood count was 0.2 this morning! Yeah!!!

This means that the cells are growing and starting to do what they are supposed to do. We are so excited about this! Engraftment is starting! We look for these numbers to fluctuate a little in the next couple of days, but all in all, we are on the upswing. You guys have no idea how great this feels. We are starting to see that beam of light at the end of the tunnel, granted it is still fluttering just a little bit, but we can see it and that is so much better than total darkness which is where we have been since November.

So, Goodbye to MLD and 2003! Not only have we kicked your butt, but you can kiss mine! Thank you, God!

We also received an update this morning on the benefit team roping and auction that will be held on the 24th. We really did not know that our ordeal would have such an far reaching impact and we are constantly amazed at the support and generosity of all of our friends and community as well as those that have been touched by our boy’s fight. We can only say “Thanks” and hope that it is enough. All of you are amazing people and we would be lost in this fight without your presence. We feel it every hour of every day all around us. The benefit sounds like it will be a lot of fun and we all wish that we could attend, but Joe will be there and the rest of us will be there in spirit. I can just see Trevor back “working” the chutes like he has done countless times. I know that he would rather be there than here, but we will be soon. If you would like more info on this event, you can email Tracy Autry at tracy@hchcpa.com and she can give you some more information.

You guys are the greatest and we thank all of you again!

The Joiners

Tuesday, January 13, 2004 9:30 PM CST

Day 13

Still here, still hanging in there.

Trevor is really continuing to do just great. He still has quite a bit of nausea, but it is just the chemo catching up with him. He is just doing really well. He had absolutely no desire to do anything today, but I think that he is entitled to days like that.

Ross is starting to show some signs of improvement. I even got him to laugh a little today, but it just made him mad so we quit playing. The rough news here is that we are going back to surgery tomorrow with him. He has an infection in all three of his central lines, so we just decided to take them out and start over. Tomorrow, he will have these removed and replaced with a temporary 3 line catheter just under his collar bone. In about a week when all signs of any infection are gone, we will replace the temporary with new central lines. Poor baby! I asked all of the doctors that I could corner in the hall point blank if we were entering the phase where I should be really scared and all of them told me no, this is not that big of a deal. While it is unfortunate for Ross, it is just sometimes necessary. With the lines infected, we run the risk of the infection getting into his blood stream which is what we do not want to happen. Safer to remove the artificial material and just start over.

You guys should just see Ross. This kid is packing well over 30 pounds and we entered the hospital at around 24 or so. He is thick and heavy and just as cute as he can be. He reminds me of a huge labrador dog that thinks he is a lap dog! Because he feels so rotten, he wants to cuddle all of the time and it kinda feels like you are hugging a tree trunk. Both my babies were pretty scrawny and I always wanted them to have that little bit of baby fat. Little did I know that the baby fat would make them so hard to carry! I crawled into bed with Trevor today and he still feels like hugging the tree branch! He is just as skinny as ever, but he still smells just like my baby. What a great kid!

Once again, Ross needs a little more support tomorrow. Trevor could probably use it also while you're at it.

Congrats to the Lady Raiders!
Good night from Blue Devil, Tarheel, and Wolfpack Country
The Joiners

Monday, January 12, 2004 5:23 PM CST

Day 12

Day 12 and we are hanging in there. Trevor is still doing really well. The occupational therapist gave us some silly puddy like stuff and wanted us to work with strengthening his hands. I put some pennies in it and told him he could have a Hot Tamale every time he dug one out. I just gave him two and it was probably not a good idea because he proceeded to throw them up along with everything else in his stomach! So a quick bed change later...he does it again! Change the bed one more time and give him some medicine for the naseau and he is out like a light. He was pretty mopey today and is starting to get that sick look about him. His face is pale, but his eyes are pretty red rimmed and he looks like he has not slept in days..you know the look, like me in the picture!

Ross is still having a tough time. His high dose of steriod stopped last night, but he is still an extremely irritable baby. His fever is inching up right now so we are watching him pretty close...again. Man, I wish this phase would pass. The good sign is that his feet and hands are just bright red which was one of the final signs of engraftment. Trevor's are a little pink, but barely noticeable at this point.

Take care to all of you and thanks again for fighting with us!

Hanging tough in North Carolina,

The Joiners

Sunday, January 11, 2004 12:41 AM CST

Day 11

Ok-I am really sorry that I have not posted any the last couple of days. I know that you all worry when that happens, but there are some days that I just cannot get the time to make it happen.

Before I go any farther, I wanted you to know that I posted some pictures, but they may not be appropriate for certain age groups. Ross looks pretty bad. I thought about not posting them, but you all have been so wonderful with your support that I felt like you are entitled to get a glimpse of what we have been dealing with the last couple of days.

Starting with Trevor, he continues to just amaze us at how well he is doing. He is starting to get a rash and a little bit of a weak stomach, but it really has not slowed him down much. His WBC was 0.1 this morning. We are hoping this is his sign of the early stages of engraftment. He is just an awesome kid and is taking this really well. He has seen Ross through the window and is worried about him. He told me that he looked too sick. I had to sit him down and have a little chat about it and assured him that Ross would be just fine. He seems OK with it, but I know he is concerned.

Ok-Now Ross. He was started on a pretty high dose of steriod every 12 hours. He gets it at 11:00 in the morning and again at night. It has really helped with the fever and we seem to have that under control. The rash and itching are what is getting us now. He is in a constant state of discomfort and is not getting much rest right now. We had a CT scan a couple of days ago and all that came back just fine and they did not see any signs of any infection with that. He is pretty swollen from the rash and it has caused his nasal passages and eyes to really swell and he battles that constantly. The doctors call his rash an engraftment rash, so we are pretty excited about that. His WBC was 0.3 a couple of days ago and we were sure that he was engrafting. The next morning it was down to less than 0.1. We found out that he has an airborne bacteria infection that day and that what few white blood cells that he did have attacked it and that was why it dropped again. He was already on all of the antibiotics needed to fight this sort of infection and we think we might have gotten past it. His WBC as back up to 0.1 this morning and that is a good sign. Still a long way to go, but the fever is gone and we are trying to make him as comfortable as we can with the rash and itching, but it is basically a waiting game on when it will ease for him.

We continue to be amazed at all of the support that we are getting from all over. It has truly made these last couple of days easier to get through.

We love all of you and will try to let you all know as soon as possible any more news that we get.

Don't forget to do the "Grow Cells Grow" dance for both boys and Ross still needs extra thoughts and prayers right now.

For those of you that email me, I just wanted to let you know that I do not check my emails every day, so please be patient with me.

Thanks again from North Carolina,
The Joiners

Thursday, January 8, 2004 9:15 PM CST

Day 8

Not a good day today.

First, Trevor had an awesome day. He continues to do really well and we are so thankful for that. He worked a long time with the physical therapist this morning and she also gave us some ideas to strengthen his balance. He is starting to need some conditioning as he is spending quite a bit of time in the bunk. Joe has pretty much seen to it that he gets up several times a day and we try not to let him lay around too much.

The Bull is still having a tough time. He spiked a fever of 106 last night and we have had him packed in ice and on a cooling blanket for most of the day. Very, very difficult to watch. We had a chest X-ray late last night and all looks clear. We also had a CT done today to check his sinuses and kidneys and a whole bunch of other stuff that I do not understand. We are looking for any signs of infection that might be causing our problem. We are still waiting on the final results of that as of tonight, but the preliminary reading all looks good. His fever did break around 6:00 this evening, but was back up to 103 around 7:30. I can live with 103, but we are still watching him pretty close.

Doctors say that the normal or typical course of engraftment is a fever followed by a rash followed by the reddening of the palms and soles of their feet. We have had the fever and now have a pretty nasty rash. We are hoping to see some red on his palms and feet tomorrow.

Exhausted-gotta go. Again, The Bull needs just a little extra tonight if you have time.
Love and thanks to all
The Joiners

Wednesday, January 7, 2004 8:27 PM CST

Day 7

One week post transplant and counting. It is still too early for engraftment, but we are anxiously awaiting any signs that the new cells are starting to take over.

Trevor is doing great. We are officially enrolled in the Durham Public School system. his teacher comes everyday about 11:00 am and works with him from 45 minutes to an hour. It does not sound like very long, but it is one on one instruction and we try to remember that they are servicing a significant number of kids so we are lucky to get that hour. He feels really good and has been up and around quite a bit the last couple of days. He has had a little naseau, but nothing that is slowing him down much.

Ross is having a tougher time. He has spiked some fever the last couple of days, but it finally grabbed a pretty good hold of him around 4:00 am this morning and we have been unable to bring it down more than a degree or so. His fever is hovering around 105. I know, it sounds bad and it is pretty spooky. The doctors are taking it very seriously, but stressed that it is not uncommon to see fevers at this stage. Trevor has not had this, but all kids are different. Both boys were started on 3 different antibiotics at transplant as preventative measures and that number is up to five for Ross now. He has really not done much today except lay around. The Bull is more like a sweet lamb at the moment. We are keeping a close watch on him.

We were told that the older kids who have been transplanted will complain of pain similary to fire running down their bodies during engraftment. Hey-no problem-just another thing to look forward too! We have the PCA pumps lined up and ready to go so that we can give them a shot of narcotic pain relief. I am thinking about asking for one also.

Ross started to lose his hair a couple of days ago, so he is pretty fuzzy headed right now. I was going to post some pictures, but he feels so rotten that I did not have the heart to flash a light in his face. I have tugged on Trevor's everyday and today his started to come out. You know, I knew that it would happen and thought I would be prepared for it, but I took it pretty rough yesterday. Today, I am looking forward to their little bald heads. Just goes to show what kind of emotional rollercoaster we are on right now.

Rest well, all of you and we need extra thought for The Bull the next couple of days.

The Joiners
PS-Ruby (Joe's Mom) arrived yesterday evening and is lending a hand. Trevor was so excited to see her! We are grateful that she was able to come and help and spend some time with the boys.

Tuesday, January 6, 2004 10:05 AM CST

Day 6

Sorry, again, that I did not get a chance to post yesterday. It was a full day with Trevor starting back to hospital school and OT and PT. The boys are still doing great. Ross spiked a fever yesterday, but it came down yesterday evening. This morning, he spiked again, so he is on three different antibiotics and the doctors were expecting things like this. Even though it worries us, the medical people have not missed a beat. This is a good sign.

Ok-I have a few things that I want to say so this might be a long post.

Several of you have asked about donating blood or platelets for the boys. Rest assured, we have everything that we need here. What I am going to ask you to do is to donate to your local blood bank. Duke is not the only place that kids are very ill and blood and platelets are needed every day everywhere. Just give of yourself like someone did here at Duke for our boys. Remember that you will probably never meet who receives your donation, but it will ease one more parent’s mind out there somewhere.

I am also going to ask all of you to consider registering with the National Marrow Donor Program. I know that it is a big decision and should not be taken lightly. I just ask that you think about it. I ask that when you make your decision to remember that being a donor is the easy part, being a recipient is the hard part. Also, for those of you that are pregnant or know someone who is, ask your obstetrician about donating the cord blood. There are only a few collection centers in the country, so this will just apply to those in major metropolitan areas, but ask anyway. For me, this is a no-brainer because it ends up in the trash anyway. It may seem a little freaky, but here I ask that you remember that I gave birth to two beautiful boys and at that time I had no idea that we would need donated cord blood 7 years later. Not long ago, I was of the mindset that things like this only happen to “other” people. Never in my wildest nightmares would I think that I would belong in that group.

While you are considering these, I also will ask that you consider becoming a registered organ donor or make sure that your loved ones know your thoughts on this. To know that you have the power to save a life, even in death, is a very powerful thing. For the most, people do not believe in modern day miracles. Granted, I have not heard anything recently about feeding thousands with just a couple of fish, but you guys should see the things that are happening all around us in this hospital. Kids are given a second chance at life with stuff that goes in the trash! It really is beyond comprehension and a miracle everyday. I BELIEVE.

I have given all you a lot to think about and now I am going to give you a little homework, and not easy homework at that. I am going to ask that you write your congressman and demand more newborn screening. This disease is so rare that is could almost be completely eradicated within our lifetime with just a little screening and treatment within the first few weeks of life. There is much controversy over this about interfering with the creation of family and letting destiny runs its course. For those, I will not ask you to walk a mile in my shoes as they are MY shoes and I would not trade a single step in them. I will ask that you consider the boy that learned to write his name at the ripe old age of three and proceeded to write it all over everything, including the walls. Now consider that the same boy at the equally ripe old age of 7 will not pick up a pen because he knows somewhere in his jumbled mind that he cannot make his hand write the letters that he has done countless times in the last 4 years. I don’t want to change or interfere with my family, but I would have spared him this heartache with just a simple blood draw the day he was born…if I had been given the option. So write to your congressman and send him or her a fresh copy everyday. We need to get their attention.

I love every single one of you and continue to thank you for all that you have done for us. Pray without ceasing as we feel each and every time that you do so.

Go Lady Raiders! (I just had to get that one in)
Janet Joiner

Sunday, January 4, 2004 7:38 PM CST

Day 4

Another slow day at the hospital and that is just fine with us. Both boys ran a fever late last night and it was a little spooky, but they both have felt really good today. They get disconnected from the IV poles around 6:00 in the evening when they are changing the nutrition lines. We sneak out at this time and let them roam freely. Tonight, we actually raced down the halls. Trevor ran! I love to see him run! Granted, he is not the speed demon that he used to be, but who really cares! He ran with both heels hitting the floor. He has toe walked so much the last couple of months that it is good to see his heels hit the floor. Amazing how the little things can have such an impact and remind us why we are here.

Ross had a pretty good day and minimum of fits. Both boys have to wear a special mask when they leave their rooms and he sure lets us know that he does not care very much for his. He was in the middle of a flopping fit when he saw Trevor through his window and he changed his mind. He slapped that mask on so fast and went running to reunite with his brother. They did not see each other the last couple of days due to the fevers, so it was funny to see Ross tackle Trevor in the hallway in a full Bull-Style hug!

The doctors came around this afternoon and told us that their counts are still looking good, and by that they mean there is no count. Trevor had actually gained a couple of pounds so they had to give him some fluids to flush him out. You know, we have been trying to put weight on this boy for 7 long years...he finally gains some and they want to take it right back off! We expect them to start needing blood and platelets by tomorrow and this will be every couple of days. Trevor actually got his first infusion of platelets last night. Not the medical expert explanation, but this is basically to make sure that all the other organs continue to do what they are supposed to do and those organs need the red blood cells and platelets to do that. I am having a hard time keeping up with all this, but I learn a little more everyday.

The weather has been beautiful here with morning temps around 50 degrees. It is really amusing to hear the weather people talk about the wind. They complain of windy days when the top gusts are 14 miles per hour. Oh, if they only knew what real wind was like. Also, there are trees everywhere. I am not talking like they have in Dallas or in lower Texas, but literally trees everywhere. You really have to know where you are going or you will not find it. Everything is hidden behind trees!

Another good day checked off the calender with 2003 becoming more of a distant memory. One of these days MLD will also be a distant memory, and not a particularly fond one at that.

The Joiners
I keep forgetting to take my camera back to the apartment so that I can download them, so no new pics again! Promise some tomorrow.

Saturday, January 3, 2004 2:15 PM CST

Day 3

Again, sorry I did not post yesterday. I thought that if I skipped a day, the numbers would click away a little faster. Does not work that way, I guess.

The boys are doing really well. The Bull looks like his old self with all of the hives and rash gone. We are thankful for that as the rash really bothered him and he itched on it constantly. He was a little spacey yesterday and slept quite a bit. It was probably from the Benadryl we gave him for the itch. He is pretty much back up to speed today. The steroids are making him a little cranky and prone to fits....or maybe it is just The Bull shining through. The nurses have pretty much so fallen in love with him, so when he has one of his fits, they come and peek in the window. Because they are in love with him, I am sure that they think we are doing something to cause those fits...little do they know! I am sure after 35-45 more days, they will figure it out. In the meantime, he is taking full advantage and milking it for all he can. God, I love that baby!

Trevor had a really great day yesterday. He walked and played quite a bit and we might have overdone it as he is wiped out today. He complained of some pain, but is not really able to pinpoint what it is that hurts. He has really been pretty tough about it , but it finally got the best of him earlier today and we gave him something to help him relax and rest. He is out like a light right now. Because I have night duty in his room, I am sure that I will pay for it long about midnight. No matter, if he gets rest and relief, then that is the most important.

The doctors said that we are entering the next stage with both of them. They expect this next week to really be a low point for both of them and we are not looking forward to it, but we also understand that this is something that we have to endure. Their WBC counts have hit rock bottom and their Red Blood counts are also low. We are expecting them to need blood and plasma by tomorrow. So far, we are pretty much textbook cases and have not had many surprises that have not been dealt with.

Good night from North Carolina- Take care all

The Joiners

Thursday, January 1, 2004 7:17 PM CST

Day 1 ... and counting. (When this number gets to 100, then the Doctors will think about us going home)

Pretty uneventful day after transplant. The boys both look great and are still feeling good. Their counts are coming down and this is a good thing. White Blood Count is down to a little over 1000 and we expect this to go to around 0 by tomorrow. It will stay in the 0 range for about 2 weeks and then the new cells will take over and the counts should go up.

They both played in the hallways for a good long time today and are in pretty good spirits. The hives have finally left The Bull, but they were replaced by a pretty nasty rash. Still does not bother him too much but he sure has rosy cheeks. Trevor seems to be sailing right through it all. He was really active today. Our next worry is holding off the boredom. He should start hospital school on Monday and that wil help. He and Joe had a pretty rousing game of Chutes and Ladders and Trevor won hands down. No cheating at all!

Joe, on the other hand, is trying to figure out how he can tie a hondo in the IV tubing. I have caught him practicing half hitches a couple of times so I know that he is gettting "the itch." Some kids play air guitar, well Joe air ropes all over the hallways! He wants to send a Good Luck message to those of you going to Lariat Bowl. He will be with you in spirit and says to bear down and take what's yours. He will be there next year, with the boys!

No new pictures tonight, but will post some tomorrow.

Good night from North Carolina!
The Joiners

Wednesday, December 31, 2003 1:36 PM CST

Day 0

Today is finally here! Hard to believe, but we made it. Both transplants are over and our new life free of MLD has dawned! Good-bye and good riddance to 2003. No looking back!

The boys are doing great! Trevor had a really great night last night and slept 12 hours straight. The Bull still has the hives, but his fever did break and we think that he feels much better. No more ATG - ever again!

Ross's transplant started about 10:30 and was finished by 11:00. All was pretty smooth sailing up until the very end and he had a respirtory reaction. I have never seen a room fill up with so many doctors so fast. We had to fill the room with Oxygen and give him a breathing treatment and then he settled into a nice nap. Scared us to death when he started to turn a little blue, but the doctors all said that is sometimes happens like that and they did not even panic, although they hung around for a while. It was probably to make sure that Joe and I did not hyperventilate!

Trevor's tranplant started about 11:30 and was finished by noon. We prepared for him to have the same reaction, but he sat up and talked right through it all. No problem whatsoever. After it was over, he asked if we could go home. If only! Now it is just a waiting game for the cells to grow and take over and do what they are supposed to do.

We had cake and balloons and are so glad that today is here! They gave us the little IV bags that the Stem Cells were transplanted from. I think that I will have them bronzed, like their first shoes. Either that or encased in gold.

The bad news is that we will be starting on some pretty strong steriods now. I am told that it might make them a little cranky. Hello? The Bull? Cranky? God help us through this next stage!

Thank you God. Thank you Dr. Klepper. Thank you Dr. Kurtzberg. Thank you Duke. But most of all, Thanks to all of you for staying with us through this. Our work is not done and we have some pretty rough days during January, but the way I feel right now, we can make it through anything!

The Joiners-100% pure!
Kicking MLD's Butt a little more everyday!

Tuesday, December 30, 2003 5:34 PM CST

Day -1

ATG-still baaaaad. We are so looking forward to the end of this one. Trevor had a great night last night and we were thankful for that. He started his last round of ATG this afternoon and he is just sailing right through.

The Bull is taking it pretty rough on the other hand. His fever has been pretty continuous since early yesterday evening and the hives have gotten much worse. Still not much concern for the Doctors and nurses up here. They say it is a good thing because it means that the drugs are working. Of course, that brought up questions about it working with Trevor and they tell me that he had his reaction the first night so it is working for him also. It is hard to look at Ross as he is all red and splotchy and his eyes look really really tired. I guess you could say that we have our first confirmed case of Mad Bull disease! He also started his last dose today so we only have this one more night.

Trevor started a program on the floor today called CellMates. They bring all of the kids on the floor as well as their siblings together in the family lounge and do crafts and play games for a couple of hours. i think that he won the Candyland match, but if I know Trevor, he probably cheated. Joe would be so proud. HA!

Tomorrow is the BIG BIG day! We hear that it should take about 30 minutes and should start around 11:00 in the morning eastern time. They will bring the cells over from the lab and get started and they do it right in the room. They just hang it from the IV pole and feed it into one of the catheter lines they placed in their chest. Seems and sounds pretty anticlimatic. I mean, we have been working our tails off this last month to get to this day and they just carry it around in a plastic bag and hang it on the IV pole. Amazing that they can do this and thank God they can! We are going to make it a party so expect new pictures tomorrow of the celebration.

The Georgia relatives continue to be a great help. The boys have really taken to them and we are so very grateful. We are pretty sure the boys are tired of looking at us and needed new faces. Of course, Elizabeth and Audrey are spoiling them rotten, but that is just fine with us. I did not realize how exhausting staying in a 10 by 10 room with a small child would be. Once again, Thank God for those institutions called Day Care and School. I am missing it greatly at certain times and I think that the boys also miss it.

Go Red Raiders-we are watching the game from North Carolina!

Take care all and please remember us tomorrow!

The Joiners

Monday, December 29, 2003 10:33 AM CST

Day -2

Sorry that I did not get a chance to post yesterday, but I have just three little letters as to why…. ATG. ATG-baaaaaaad. The combination of Tylenol, Benadryl and Phentonal-gooooooood.

Pretty rough night last night when we started ATG. Trevor spiked a pretty high fever and was delirious. He was giving us his sight words from school and sang songs and talked about some things that were pretty off the wall. He lost his supper a couple of times, called us some pretty nasty things and thrashed around pretty good. Amazing how strong and loud a scrawny 45-pound 7 year-old can be. The ATG is a 10 hour drip so it ended during the night last night and he woke up feeling pretty good this morning. He is a little pale and out of it, but other than that he is doing good.

Ross also spiked a fever and had some bouts with nausea, but unlike Trevor, he just kinda laid there and moaned. His little body is covered with hives and is all red and splotchy this morning, And like Trevor he feels pretty good this morning. He was up playing with his toys and yaking at the nurses just like always. It all starts again at 3:00 today. They tell us that the second night is much better and we sure hope so.

Elizabeth and Audrey, part of the Georgia Schoepfs, arrived yesterday and are taking a shift with the boys this morning. This has given Joe and I a chance to get out of the hospital and not feel like we have to take a 5 minute rinse in the shower and gobble down nutrition to rush right back. We sure needed it after our rough night last night.

Just 2 more days to Transplant! Everyday that we get closer is a day that we leave this mess behind us, and trust me, this disease is a mess. The doctors told us that the donated Stem Cells are growing and looking good and will be ready on the 31st. They make is sound pretty routine, like picking up a new car or something: “Yes Sir, we will get it washed and shined up and fill it with gas and you can pick it up in a day or two, just sign right here.” Don’t get me wrong, I am glad that it is just routine to them, but it sure is not to us. These are our kids and we are scared silly, but we still know that we are in the right place and doing the right thing.

Thanks to all again for helping us give our kids a chance. Bye from North Carolina

The Joiners

Saturday, December 27, 2003 8:51 PM CST

Day -5

Counting down to Transplant! Started a new chemo drug yesterday and they are taking it a bit rough. Seems to upset their tummy just a little bit, but so far not too bad. We are starting another one tomorrow called ATG. This one is is made from horse serum and we expect it to make them a little sick. Fever, nausea and things like that. You know how it is when you see those first signs of sickness like a runny nose or red cheeks that signify a fever and you get that overwhelming sense of dread? Well, imagine being told that you child is about to run a fever and should feel alot like they have the flu. I always thought that if I had a crystal ball and could predict when my kids would get sick that I would feel so much better and I could plan my life around those times. Well, guess what? Does not quite work that way. On the flip side, we are kinda excited because that means that we are one day closer to transplant.

We lost one on the floor today and it really slammed home the enormity of what we are doing. The transplant unit has 16 rooms on it and we are full to capacity. The others are all up and around and doing just great. We are thinking that the Las Vegas oddsmakers are giving us really low numbers and that we will beat this whole thing. That is a bet that I will make anytime.

We seemed to have fallen into a pretty good routine here with bedtimes and naptimes. Especially, The Bull. He seems to be of the mindset that he can pitch a pretty big fit and get his way. Of course, considering that he has just a 6 foot tether to his IV tree, we tend to let him get away with it. Trevor did great today and had his last dose of the medication that causes him to be a little loopy. We are glad to see the end of that one. He rode the stationary bike in the hallway quite a bit today and it was great to see.

till tomorrow

The Joiners

PS for those of you that have asked, Grandma Schoepf is hanging in there. I am sure that she feels like she has become our maid. She is doing all of the laundry and cooking for us, then comes up to the hospital so that Joe and I can take turns going home and eating and showering. Sounds really awful, but we would be lost and it has lifted a burden from us. Joe's mother will be joining us shortly and that will be a great help.

Friday, December 26, 2003 2:04 PM CST

Day -6

Sorry that I did not post yesterday. All of you tend to think that I am pretty strong, but I guess with Christmas and the family leaving yesterday it was just too much and I had a small breakdown and major pity party. Back on track today.

The boys are doing great still. The Bull hardly even notices what is going on. He has asked a couple of times if he can go outside. So far we have been able to get his mind off of it. Now he asks to go in the hallway. They have a couple of pedal cars and an inch worm that he loves to play with.

Trevor has finally snapped out of his drug induced state and is getting around pretty good today. The physical and occupational therapists are going to start working with him on Monday. They have already put a brace on his feet that keeps his ankle in a 90 degree position. It sounds cruel, but it does not bother him at all and it is really good to see his ankle in that position. He had been toe-walking pretty much so all the time for the last few weeks and it looks great to see his heel actually touch the floor. Brings new meaning to the phrase "Small Steps". They are also going to put braces on his wrists to keep them straight. We are actually looking forward to that also because he keeps his hands in a locked position when he sleeps and it will be great to see them in a "normal" position.

We get the nasal tubes out today as this is our last day of the oral chemo drug. That is the first thing that Trevor asked this morning when we woke. They should get them out by about 5:00 our time and then they will look so much better.

We really missed all of our family yesterday as well as our friends back home. We look so forward to the day that we can get back to our roots with our boys.

Hope you all had a Merry Chistmas and remember us on the 31st. I thought about trying to sneak in a bottle of champagne to go with the new cells on New Year's Eve, but then I remember the time that Trevor told Dr. Klepper that I might have wine in my blood. Definitely don't need him spilling the beans to Dr. Kurtzburg!

Take care all
The Joiners

Wednesday, December 24, 2003 6:23 PM CST

Day -8

Still here. Have not baled out yet. The boys are doing good. Ross feels and acts great. He does not understand the fact the he is supposed to feel bad. We had to have the nurses lengthen his IV line. He just tries to run up and down the hall and it is quite a challenge to keep up with him and make sure that he does not yank out his line. He has become pretty angry at us at times. He ran a fever last night and gave us a scare, but we think that he just got hot in his bed because he was fine this morning.

Trevor is a little shakey. He has had a reaction to one of his drugs and it has caused a light rash on his skin, but nothing to worry about. He has not even noticed it. Another one of his drugs is making him a little unsteady on his feet. They have a stationary bike and basketball hoop in the hall and he has had fun with those. Let the Doctors and God do their work and we will take care of the easy stuff.

Dad and the family are leaving tomorrow. We are sad to see them go and have enjoyed them being around. They have helped us get settled and ran several errands for us. John got to shoot a few hoops on the Duke basketball court and had his picture taken while dangling from the goal like he had just dunked it. He wants to send a message to Coach K at Duke and let him know that he is ready to sign. Josh got to run the bases on the Duke field. I think that it made his whole trip.

All in all - pretty normal day, but not our normal Christmas Eve. We should be at home stuffing ourselves on pie, but it will just make us appreciate it more next year. We hope that it will be the same for all of you. Hug your kids a little tighter and send an extra prayer for us...again.

The Joiners

Tuesday, December 23, 2003 6:45 PM CST

Day -9

Ok-We are settling into some sort of routine at the hospital. We are still trying to get our bearings. The nurses and staff are just great with all of our needs and are really great with both the boys. They have been a little uncomfortable today but it is mainly residual soreness from the line placement.

We are 4 doses into our Chemotherapy. I guess that I have watched too many movies on Lifetime Movie Network because I got up this morning expecting to find hair falling out and have waited all day for the sickness to come. I am told that we hope to have no sickness and that the hair will not fall out for another few weeks. I think that Dr. Kurtzburg found that pretty amusing and she quickly reminded me that transplant survivors usually go home the next day on any typical episode of General Hospital. I guess that she was reminding me that this was real life, huh? Yea, like I need THAT reminder!

As soon as the boys really feel up to it, we plan on decorating the boys rooms and doors and making the place a little more cheerful, so keep the cards, letters and pictures coming.

Santa came to visit today and brought the boys some goodies. I have attached a picture of Trevor with the Santa. Ross and I were out having his EEG and Brain Wave scan. This is the test that they have tried twice before. They finally had to sedate him completely to get what they needed. Even The Bull was not powerful enough to fight off the "good drugs" and he slept like a baby while they attached all of the stuff to his head. Finally got that one behind us.

Hope you all have a great evening and happy and safe holiday.

All our love
The Joiners

Monday, December 22, 2003 6:15 PM CST

Day -10

Well, we made it through the first course. Both boys had the central lines placed this morning and were in their rooms on the tranplant floor by 2:00 pm. All went well. Of course, The Bull woke up a wild man and proceeded to give them a good yank. Scared the $#%& out of me! We had to take a quick Xray to make sure that he did not dislocate anything and it came back fine. We were sure not looking forward to going back into the OR! Trevor did fine and woke up calm and peaceful. Both are a little whiney, but they have already eaten two meals and we will settle in for our first dose of Chemo tonight. Hopefully, they will sleep right through it.

I do not have my internet connection at the hospital yet, so my posts may be a little sketchy the next few days, just please be patient with me and I will let you all know what is happening just as soon as I can.

Jane Trimper came over and sat with my family while we were in surgery. Those people are just a true inspiration to us. I know that Dad and Mark both feel so much better after chatting with Jane. As I said before, we wish we could fast forward to be where they are, but we will be there soon. 60 days (roughly) in the hospital and it will be close to spring and the boy's new cells will be blooming just like the trees around here. I cannot wait until that day is here.

Keep praying and we will keep fighting!

The Joiners

Sunday, December 21, 2003 8:23 PM CST

Well it was Christmas for us today. We had the best time. The rest of the family arrived about noon and we had a big Christmas dinner and then the kids finally got to tear into the presents "Santa" had left for them. They were so excited about everything. It was total chaos and we loved every minute of it!

Attached some pics of Grandad cutting hair. We used a pretty short blade. Thought it would be easier for later in the hospital. Joe took the boys on a walk around the complex and found some geese. The boys got a big kick out of feeding them and chasing them.

Another light day today, but the big day is tomorrow. By the time our Central Time zone followers are getting to work tomorrow morning, Ross will be in the middle of his surgery for central line placement and Trevor will be having his last preop screen. We are packed and ready for our stay at the hospital...as ready as we can be.

Thank you God for this perfect day today. Thank you God again for Dr Klepper, the Duke team and the Trimpers for leading us here.

The Joiners

Saturday, December 20, 2003 6:27 PM CST

Hello from North Carolina. You know, I just have to mention the rousing victory of my new home team-The Duke Blue Devils-over the old Texas rival. I am always thankful for a UT Longhorn loss, but this one was even sweeter. Enough about that....

Pretty light day today. Mom and I got out and did some really quick shopping. We left the boys with Daddy, which is just as well as you could not have pried them away from each other anyway. It was a bit cold here today so we were pretty confined to the apartment, but they made the best of it.

We stocked up on groceries for Christmas dinner, which we are having tomorrow when the family arrives. Last we heard, they were in Atlanta as of tonight which is a hard 6 hours from here. We are excited for them to get here, but also sad and missing the ones that we will not get to see this Christmas. Once again, praying for an entirely new situation next year.

We received the boxes of Christmas care packages sent from home. Once again, I was overwhelmed by the generosity and love that you guys at home have shown us. You continue to amaze and humble me. It brought tears to my eyes seeing their names on all of these presents from Santa. Of course, they immediately wanted to tear into them. We explained that Mommy and Daddy had told Santa that we would not be home this year, so he made a special delivery here. That seemed to satisfy them for now.

We are anxious about Monday and the surgery and Chemo, but we intend to enjoy every minute between now and then and not dwell too much on it. The boys are laughing and wrestling with Joe in the floor and it is such a sweet sound...loud, but sweet.

We miss home and all of you every minute of every day and cannot wait until we are home with our two healthy happy boys.

Good night
The Joiners...still together after 24 hours in a 1000 square foot apartment. It really is a season of miracles.

Friday, December 19, 2003 8:20 PM CST

DADDY IS HERE! Sorry for the late post tonight, but we just returned from getting Daddy from the airport. The boys are so excited and they probably will not be getting to bed anytime soon. Joe is currently cleaning out the fridge of any and all leftovers.

We had pre-op screening today for our surgery on Monday. Ross is scheduled for 9:00 am and Trevor for 11:00 am. They both will receive their first dose of Chemo at 10:00 that night. Here we go.

We retried the EEG test on Ross today at 1:00. He was up early and I did not let him take a nap on the way to the hospital. They gave him the same medicine as before and this time he slept for all of about 20 minutes. They had just finished marking his head when he woke up and he would not let them finish. Score: The Bull 2 - The Nurses 0. Don't know what we are going to do now, but they will have to try again later. The Bull is getting quite a reputation around the hospital.

Also heard the the Lorenzo contingent have left and are nearing the Louisiana line. We hope that they are here early in the day on Sunday. Trevor is so excited to see everyone.

Going to go play with the boys, but wanted you all to know that Joe had arrived safely and we are glad that he is here.

By the way, Duke is playing Texas on Saturday and I look forward to rooting for my new home team! This is one that I will have no problem with!

Good night from Blue Devil Country
The Joiners, together again.
Thank you God!

Thursday, December 18, 2003 6:14 PM CST

Greetings from North Carolina. Go Blue Devils! (Just does not sound the same and Go Red Raiders, but I am trying.) The boys had a light day today. Trevor did not have anything and Ross only had one blood test. I had some various meetings with the doctors. Our main physician on the team is Dr Parikh and he seems to be really positive and a great person. He has answered all of my questions just like it was the first time he had ever heard them.

I did receive a schedule today and here is how this is gonna go: We will be admitted to the hospital on Monday morning for the central line placement or CVL. These lines are basically rubber tubes that will dangle from their chest and there are 3 in total - for each boy. This is where they will have blood draws and also receive all medications, IV nutrition and the new stem cells. No more sticks from needles. After that, we will be admitted directly to the transplant floor and will receive the first dose of Chemo at 10:00 pm that night. The transplant will happen on 12/31/03. I thought is was kinda fitting. Out with the old and in with the new! We are definitely leaving 2003 behind us and not looking back.

We received a bunch of mail today, our first delivery. Thanks for all the cards and letters. They mean so much to us and really brightened our day. We also received a care package from Aunt Marylin and Sonja from College Station. Give those two a tablespoon of flour and a little water and they will come up with something! Of course, anything that comes out of Marylin's kitchen is gonna be good! My favorites were these little squares that are a little like pecan pralines-made my knees a little weak. Better hide those from Joe before he gets here tomorrow.

Well, we have pre-op screening early in the morning and it is bathtime. Don't forget to check out the new pics.

Good night from Blue Devil Country
Janet and the gang

Wednesday, December 17, 2003 5:27 PM CST

Had a rough start to the day. Testing for Ross did not go this morning. I did get him up pretty early, but not at 4:00 am. This EEG and brain wave test is pretty picky. They attach all of these little wires to your head (about 30 but it seems like 100) then they have to be pretty still. Well the only way that a 2 year old is going to stay still is if he is asleep, right? And the only way a 2 year old is going to go to sleep on command at 8:00 in the morning is with drugs, right? Well, not The Bull. This particular lab could not administer the "good" drugs, just a mild sedative to help them relax. It made him drunk, but not at all sleepy. I will have to say that he is a happy drunk. This will be good for his future girlfriends and running buddies. Anyway, we will try again when he is out on Monday for the central line placement.

We are still settling into a routine around here. Trevor actually asked if he could go to school today! That should give you an indication of his mood around the apartment. Speaking of, the hospital school contacted me today and said that Trevor would start back on January 5th after the holidays. By then we should be tranplanted and growing new cells.

Grandmom is hanging in there. She just left for Walmart to pick up a few things. Don't know if it was necessary or she just needed to get away! Either way, she has been a big blessing and I am fortunate that she was able to come help me. Would not have made it without her.

We are counting down to the arrival of Daddy. I hesitate to bring it up to the boys because they get so excited when I tell them he will be here soon.

We are also counting down the arrival of the rest of the family that is coming for Christmas. I cannot wait until they get here. To those that have donated the hotel points and everything else that made that possible, I could never express how much it means to me that my father and some family will be here. All I can give is a big "Thank you".

I think that with the help of Jeff Trimper, I figured out how to get pictures sized right for the photo album. Don't forget to check it out.

Pretty light day today-hard stuff around the corner.

Good night from North Carolina
Janet-Grandmom-Trevor and Ross

Tuesday, December 16, 2003 5:51 PM CST

Wow-I cannot believe all of the guestbook entries. We really did not have any idea that our situation would have so much of an impact. We are honored that you are thinking of us and praying for us.

We had developmental testing today at the Child Development Center this morning. They make them look at pictures and pick out certain things. Sounds like the ink blot theory, but it was really fun for the boys. Ross exceeded his age mark and this is probably thanks to Kids Kingdom and the gals over there. Trevor was a little behind, but we expected that. They also had physical development testing. We watched behind a two way mirror and this was very hard. Trevor really had trouble with some of it and it is really heartbreaking because it is generally stuff that he used to do with no problem. His heart was in it, but he just could not make it happen. Needless to day, it really ticked him off when they kept on him. They tell me that they intentionally try to get to the level that is difficult or impossible for them. I wish that I had known that before we started so that I would have been prepared.

Ross has an EEG and Brain testing tomorrow at 8:15 am and I am supposed to take him in while he is sleepy. They asked that I get him out of bed at 4:00 am and I asked them who was gonna come over and deal with him at 4:00 am?! Whatever! They obviously do not know "The Bull" yet very well.

Another family arrived today from the west coast whose son has adrenoleukodystrophy. They looked very scared and still in that "shock stage." I think they are a couple of weeks behind us but I look forward to talking with them. I can only hope they have or will have a support circle that is just half of what ours is.

Thanks to all of the Trimper warriors who have added us to their prayer and support lists. We love to hear from you guys and continue to draw inspiration from you.

We have been contacted by a church here that has some ties to Cheri Harper at Kids Kingdom. Her name is Allison and I believe that she is the youth minister. I asked her if she would be available to come on transplant day and give a blessing. She readily agreed and we are supposed to have lunch on Thursday so that we can meet face to face. Their church is working on some things for us also. Again we are honored and humbled.

till tomorrow
The Joiners Trevor-7 and Ross-2, both MLD Warriors

PS-I am trying to post pictures-so don't forget to check the photo album. Can't say I'll be sucessful so just keep checking.

Monday, December 15, 2003 5:46 PM CST

Hello from Durham. Although I will always be faithful to the Red Raiders, I plan to become a Blue Devil fan while here. It seems only fair.

Boys had the day off today, but I had an educational session with the Nurse Coordinator. I went to college for 5 years and did not get this much information the entire time that I was at Tech! I learned all about medications and the possible side effects-both good and bad-and about the medications they will give to combat those side effects. Not sure I will be able to keep it all straight, but they assured me that I will sound like an MD when I leave.

I also toured the transplant floor at the hospital. The whole floor is dedicated to kids and they have made it really fun and uplifting. We will be in rooms that join through a bathroom. There are alot of rules that we will have to learn, mainly about hygiene and that sort of thing.

Beautiful day here and we took the boys to the playground here at the apt. The Trimpers came over with Sam and Max. Sam showed Trevor his central line and little round tummy. It was good to get to talk to them and I wish that I could fast forward through the next couple of months and get to the stage that they are. They are just great people and they have enlisted their hometown to support us also. You can see their journey at www.caringbridge.org/mi/trimpermld. Remember, these are the people that contacted me about the program at Duke.

Joe is coming in on Friday and the boys are so excited. My dad and one of my brothers is coming with his family and should be here on the 21st. Thanks to all that made it possible for them to come. My other brother will be coming during March. I am already looking forward to that.

I bought a digital camera thanks to a gift card that I had been carrying around for a few months and hope to have some pictures posted just as soon as I learn how.

Good Night and we hope to hear from you all soon.
Janet

Saturday, December 13, 2003 9:04 AM CST

Did not get a chance to post yesterday as it was a pretty eventful day. Both good news and bad and some that we were not expecting. This will be a long post so here we go.

Good news: We had a pretty short day as far as testing goes. The boys both had nerve conductions studies and they send electrical shocks through the nerves to measure how they travel.

Bad news: Boys did NOT like it at all. Ross was pretty light, but Trevor's was pretty extensive. He was really good the first 3 or 4 times, but then he got pretty tired of it. His little body was literally shaking when we left, but he recovered pretty quickly.

We also met with Dr Kurtzburg late in the afternoon. She is the big dog here at the transplant center and it was great to meet her.

Good news: She was really excited when she saw Trevor and was amazed that he was pretty much still functioning normally. She saw that he could still run and jump and write and talk. Although she was cautious with her words, she let us know again that we are early in catching this with him and that he had a good chance. Most kids that she has transplanted with MLD already could not walk unassisted and sure could not run or hold a pencil. She said that she does see some delay with response from him, but that was normal with MLD kids. Also, they have received the HLA typing back which is the matching of their information with the donors. They have found 3 matches for both boys and are now running some additional tests on the donors to make sure that there are no hidden diseases (such as MLD) in the donated cells. We got the MRI results back for Trevor and there was NO changes since his 9/15 MRI in Lubbock. YEAH! This means that his progression is very very slow. Maybe we will have time to catch it before he progesses any more, although it is a wild card.

Bad news: Ross's MRI had already showed some degeneration. Although he is non-symptomatic at this point, it is just a matter of time. This really made any doubts that we had about transplanting him now disappear. It looks like we are on schedule to go into the hospital on 12/22 for the central line placement and Chemo to start on 12/23. Merry Christmas!

So-So News: We are officially in isolation. The doctors have asked that we not take the boys to restaurants or shopping or movie theaters or around other crowds. The flu is rampant and could delay us a couple of months. Good thing that we really do not know anybody in the area.

Mom is hanging in there like a trooper. She really likes it when she gets calls from friends and family. It is good to have a little adult conversation every now and then! We are constantly amazed at the support and love that we are getting, even from people that do not know us. I know that she feels stronger because of that.

Thanks to those that have written and signed the guestbook and are supporting us and praying for us. Keep it up, we are just getting started. We are gearing up for a fight and we will accept no less than 100% success. Neither Joe or I will give up on these boys and we need to make sure that you don't either. This is not just the boys' fight or our fight, but a fight for the entire village and we need you.

Speaking of Joe, thanks to those that are "taking care" of him back home, although he tells me that he is a grown man and can do it himself. I just got off the phone with him and he had called to ask about laundry temps! You just gotta love that man.

Hope to hear from you all soon.
Joiners

Thursday, December 11, 2003 1:10 PM CST

Well, we made it here. I have to say that Durham is a beautiful town. Nice place to visit, and it looks like we will be living here. Our apartment is nice, and we are in the back of the building, so there is room for the boys to play outside in a little grassy area. They also have a playground that we saw when we came in. We hope to make it over there in the next couple of days as it is supposed to be warm.

We hit the ground running on Monday morning with MRI’s for both the boys. These are 30 minute scans inside the tube and you have to be completely still. Needless to say, we had to sedate them. Ross went out like a light, but woke up a WILD man. Ever seen a drunk 2 year old? Not a pretty sight. Trevor is pretty resilient to the sleep medicine – most people with enzyme disorders are – and he took a pretty heavy dose to get him out. The thing is that he was out the rest of the day. Ross was drunk and Trevor was not even awake all day to see it. Needless to say it was an exhausting day.

Tuesday was a little better. Ross had the day off, but Trevor had an EEG and brain and spinal cord scan. Once again he had to be completely still and he was pretty loopy still from the Monday morning drugs. So they gave him a Valium and then he was a drunk man. Long story short, those tests have been rescheduled.

Wednesday was easy – we had a meeting with the transplant coordinator and the social worker and then lung studies in the afternoon. This was the easiest day that we had had so far. We finally made it to the grocery store because we were sick of hamburgers. I also picked up Ross a crib. He was sleeping with me, but I figure the third time he fell out of the bed was enough. The last thing that I need is ANOTHER sort of head injury. Thanks to Daddy for footing the bill on the crib. (I love and miss you Dad and am taking care of Mom the best she will let me.)

Today we have an echocardiogram and then we had the rest of the day off. Ross is napping and Trevor is watching a movie. I am sure that he is getting tired of that, but that is about all there is to do here.

I have been really encouraged by the transplant team. We have had a meeting with our main physician and he seemed to be really positive. They are really excited about Ross and his chances. Of course, it makes me so nervous because he is so little. They are also pretty optimistic about Trevor because he is so early in symptom onset. They are all amazed that he was diagnosed so quickly and that we are here already. There was definitely some sort of intervention with that whole process. Thanks to God for Dr Klepper, the Trimpers and all of you who made it possible for us.

Speaking of, we met the Trimpers on Sunday when we arrived, We have not had a chance to get together since then. I did take a minute to bow at their feet and thank them for contacting us as they are the only reason we are here today and so fast. I told her that I would always think of them as the ones who gave us and our boys a fighting chance and gave me hope again. I remember those few days between getting our diagnosis and our initial contact from the Trimpers. Those were some really dark days because living without any hope is not really living at all.

I think that the story will be on tonight on Channel 11. For those of you that watch, please remember that the camera adds 50 pounds.

Anyway, I just wanted to say thanks to all for the support. It is what is literally getting us through the day. I cannot begin to express what it has meant to us and because you are all friends, I know that I do not have to even try.

Our address is:
825 1G Ivy Meadow Lane
Durham, NC 27707

Thursday, December 11, 2003 12:48 AM CST

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