Upcoming stuff......

I just thought that I would give all of you a little heads up on some upcoming events.

On April 18-19 there is going to be a 24 hour run for cancer which is going to be held in Hampton VA. A team has been put together and the name of that team is "Capt. Cody's Crew of Beach Bound Pirates", which is the brain child of my good friend Bill Allen. Geetah as he is so affectionately called on the Runners World Forum is one of the best ultra marathoners in the country. Here is one of his latest accomplishments. Bill is the 3rd guy from the right in the back row with the long hair. He and I met in Annapolis MD when I was running the Annapolis 10 miler. Anyway, our team consists of the anchor, "me" because I haven't been running nearly enough and many other of my RW friends. Although the entry fee for this race is going to American Cancer Society, some of the team members are raising money for Cody's Crew Foundation. I said it before, "I'm blessed to have such friends."

Here is the second thing I wanted to mention. Please mark on your calenders that on June 6th Cody's school is having a Cody Johnson memorial stone placed in the school garden. They are also working out the details on a fund raising idea where the kids will do laps at the school and raise money by getting pledges per lap. Diane and I are also kicking around the idea of doing a similar event on Cody's birthday, September 11th. September is also Children's cancer awareness month which most people do not know about. It is our goal to change that. So, that is about it for now. I will try to keep you all up on any new information and the progress of the website.

If any of you can make it to these events we would love to have you......

God Bless.....

Trying to move along......

The days just are not the same around here. As we each try to find ourselves again it is quite evident that this place is not the same without Cody here. He has left such a void in our lives. We are all trying to adapt and focus on the task at hand. Nobody is having a harder time of this than Diane. There are days when she shows signs of progress only to take a step back and let the grief consume her. Luckily she has some very close people that she talks to and it really seems to help her. We both went to a grief counselor last week and will be taking the kids very soon.

I have spent the weekend working on the new Cody's Crew web site. I should have it up and running in a few weeks. Diane is having a lawyer look over the IRS foundation forms and we hope to have that resolved very soon. Those of you who have sent checks for the foundation please don't worry. We are not cashing those checks until we have everything in order and we can send you a receipt for your donation.

Megan,
Justin say's "hello" and "thank you". He is doing OK and misses his brother very much. They were very good friends, not just brothers.

Feeling kinda low...

I had a great day at work today. I stayed busy and that does the job for me. But, I came home to get the kids off of the bus this afternoon and it just hit me. As I was standing at the top of our driveway I just had a heavy feeling of sadness dump over me. I started thinking about Cody and the way he would walk up the hill after he got off of the bus. The other two kids would be bickering but he would have this calmness about him. Maybe he was tired or the work needed to get up the hill just made him not get involved in the annoying argument taking place next to him. For whatever reason it was just Cody.

There was something primal or spiritual to that moment today. It's a beautiful day, sunny but cool and a gentle breeze that makes it perfect. I kinda stuck my nose in the air and took a deep breath. I don't know, maybe I was trying to smell my boy again. I caught myself talking to the breeze and the trees somehow thinking that Cody is out there watching or listening to me. I was kinda hoping that he would talk back to me. Oh how I miss him. This place just isn't the same without him.

Justin is in the other room playing a wrestling video game. It's a game that was a favorite of Cody and Justin. I use to remember hearing Cody say things like "that was a cool move right Justin?" Or "Justin, if we beat this guy do we fight the big boss?" Now all I hear is the sound of Justin working the controller. The volume is turned way down and he isn't saying a word. He is missing Cody as much as anybody. He seems to be trying to stay away as much as possible. He says that there is nothing to do without Cody here.

Cody is everywhere in this house. His clothes, his toys, his drawings or some papers with little Cody sayings written on them. His favorite drinks in the fridge and snacks in the cupboard. All of them bring back memories of him but they can't bring him back. Oh what I would give to get a chance to hold him again. Or, to have him sit on my lap and play the Pirate video game again.

Cody, you know that Mommy, Daddy, Justin and Daniela love you and miss you!!!

Cody's Crew Tattoo

I just wanted to post the picture of my new Cody's Crew Tattoo... I went to the tattoo shop yesterday after work. The guy did a great job I think. I submitted a sketch of the drawing a few weeks ago. I didn't get a chance to meet the guy who was going to do it. So, all I asked was that the lettering stayed exactly the same. He could tinker with the drawing all he wanted. The lettering was done by Cody during his last chemo. Well, when I got there yesterday he had touched up the drawing a little and yes he redid the lettering. I asked that he do it the way I had it and explained why and he had no problem redoing it. I'm very happy with the work. This is the first tattoo I have gotten since 1979. It still hurts as much as it did back then... :)



You may have noticed that there is no "S" at the end of Cody. Well, that is the way he did it... So it's good enough for me...

Hello out there!!!!

I know it's been a few days but there hasn't been much to write about. The house isn't the same anymore. The sounds, the smells and life that would resonate when Cody was here are gone. The kids seem to be making their way but often comment about Cody and how they miss him. Diane seems to be having the hardest time. I hope she can pull out of this soon. There doesn't seem to be anything I can say or do for her. I'm just trying to give her space and let her heal at her own pace.

Big changes ahead...
Last weekend I secured the domain name CodysCrew.org. Diane is getting all the legal stuff in order and when she is finished we will be sending out receipts to all of you who gave to Cody's Crew Foundation. We are going to be very picky where we send the moneys that are raised through his foundation. We are both adamant that this money will not go towards lining some CEO's pocket or administration fees. It will go to research! Over the past few years I have been directing people to give to Band Of Parents. They are a great organization of which I belong. We will continue to support and fund them also. Diane and I are also going to look into other studies, hospitals and Dr's who have ideas on fighting the beast.

CodysCrew.org....
In the weeks to come I will be unveiling the new website. I have some good ideas for fund raising. I'll be doing some special drawings and selling the prints. Now that I am getting back into running I will be doing some races in Cody's honor to raise funds. In the future I hope to organize a race in his name also. I'm kicking around a jewelry idea that I think will be a hit. I will also be asking for fund raising ideas from all of you. One thing Diane and I are going to try and avoid is that people forget. It is only human nature that now that Cody is gone from this earth and I stop writing on this blog everyday people will soon forget about the beast. I will be spending the rest of my days on this earth fighting the beast. It is my goal to see a cure for this evil disease in my lifetime.

Today....
I'm getting a tattoo. That's right, a tattoo. A few weeks ago I did a rough sketch of the first Cody's Crew tattoo. I will post it as soon as I can. It is my tribute to my angel.

Cody, you know that Daddy, Mommy, Justin and Daniela love you and miss you so much.....

Cody's Eulogy

I've been asked by some people who were not able to make Cody's funeral if I could possibly post the eulogy. Well, here it is, and below is the wonderful eulogy that was written by Dr. Gonzalez and read at the funeral by Dr. Abu-Gosh. I'm trying to get the eulogy written and read by Sharon the Chaplain at Georgetown.

September, 11 2002…..

Cody entered this world as a miracle – our unexpected baby that was not supposed to be had fought his way into this world. Our lives would never be the same.

Cody spent his entire life fighting for just that, his life. Cody was our healthiest baby although he was hard to make happy. In many family photos he is crying. As we looked back at these pictures some time later we realized he was in pain. The beast had been taking over his little body. Three days before his second birthday he started a journey that no child should have to endure. After spending a painful week with fevers and leg pains he was admitted to Fairfax hospital. The Doctors thought he had leukemia – it turned out to be the deadliest form of childhood cancer - Stage IV Neuroblastoma. We were told that Cody probably had very little time to live. After a few questionable decisions by the team at Fairfax it was decided that Georgetown University Hospital was the best place for Cody. That decision gave us hope. It was there where they met Dr. Shad, Dr. Abu-Gosh and Dr. Gonzalez. It was this group of doctors, wonderful nurses and staff that gave us hope that our son could survive. It is this group of Doctors that we lovingly call the “A” team. Our “A” stood for angels.

Cody went through a very aggressive treatment over the next year. Most of his time was spent inpatient. Cody endured many intense rounds of chemotherapy, radiation, surgery and stem cell transplant. With the treatments came complications, We almost lost Cody in the spring of ’05 due to a toxicity from transplant but our Cody once again with his fighting spirit pulled through. He learned to talk while in the hospital. Some of his first words such as ‘milky’ referred to the medicines that hung by his bedside. All of the Georgetown staff became his second family as it was all he knew. He did give everyone a hard time but when he was feeling good we all treasured the hugs and kisses. This is when he met his girlfriend ‘Lori’ the art therapist at the time. Many years later and thousands of miles apart he always had his girlfriend. Even at two years old he wanted things his own way. One day he was trying to watch Dora the Explorer and we were talking to the nurse over his bed. He got angry and said “Trish – BE QUIET – You talk to much”! Cody was able to complete one full year of school with no treatments, just scans every 3 months. This is where he met his best friend ‘Spencer’. Although he never saw Spencer after that year he always talked about him. It was the only time his life was close to normal. He loved Hershey Park, the pool, Chuck E Cheese and the beach. We let him do all of those things. He played soccer when he started kindergarten. He was a natural, stealing and blocking with gusto. He carried the whole team – in fact we had to keep taking him out of the game to give the other kids a chance to play. Through it all Cody found time to live life while in his own special way he touched the lives of thousands. To children his own age he was just another kid. To adults he had a noticeable spirit that melted your heart. Even when he was in trouble he had a way to make people smile. He seemed to spend a lot of time in the principal’s office for altercations with other children. Cody’s time spent in the hospital made it hard to develop the social skills needed to get along in school. He earned many referrals and became a close friend of Principal Fogarty. Cody used to call them ferrals. When he got off the bus we knew immediately whether it had been a good day or a bad day. On a good day he had a bounce in his step and he would say “Mommy – I didn’t get any ‘ferrals’ today. When he had his head down and dragged his backpack up the hill we could pretty much guarantee that he had received a referral. Principal Fogarty was very understanding and gave Cody more leeway due to his circumstances. When Cody had to leave school for treatments it seemed to bother him more to miss school than the treatments themselves.

After several months of kindergarten he became ill with a stomach ache that would not go away. He had almost made it two years with no evidence of disease but it turned out the beast was back. It seemed as though every time Cody started to live like any other little boy the cancer would rear its ugly head again putting him back in the hospital.

Another chapter had started. The cancer had luckily returned to only one spot but unfortunately to one of the worst – his liver. After several more intensive rounds of Chemo we were sent to NY to one of the best Neuroblastoma surgeons in the U.S. They were not giving us any news a parent wants to hear. From their experience there was not much that could be done for Cody. Their surgeon had declined the operation he needed. Our Georgetown Doctors pressed forward and found a specialist who was optimistic about the surgery. He ended up with an 80% liver resection and pulled through once more. We couldn’t keep him from jumping off furniture within weeks of the surgery. He wanted to wrestle with his cousin Chris and his brother Justin. He would never tire of Monopoly at which he was a champ. Cody loved board games and we all knew to play by his rules and of course he always won. He was counting money and making change before his brother and sister. He spent his time in the hospital selling candy, pictures, and even band aids to all that attended him. He was saving for the beach and Hershey Park. His bug as he called it had once again been beaten. After continuing chemo Cody started the most painful treatment of all in NY in hopes of keeping the bug away. He started kindergarten for the second year in a row. He would attend for three weeks and then go to NY for two week treatments. The treatments were described as worse than labor pains. After three treatments his cancer would return. It wasn’t a good prognosis.

When he wasn’t able to attend school because of treatments he couldn’t wait for Justin and Abby to come home from school. As soon as Justin came through the door he wanted to play ‘guys’ or video games. He and Justin were best buddies. The first words out of Justin’s mouth when he walked in the door each day was “Is Cody home”? Cody wanted to grow up to be 10 just like his brother. Cody loved Sponge Bob and his favorite character was Patrick. He liked to say that he thought Patrick was funny because he was so stupid. He knew the Sponge Bob movie by verse and his favorite color was blue. He often said he wanted to marry mommy and Lori when he grew up. He loved for mommy to tickle him and to play pirate games with daddy. He also wanted to be a wrestler when he grew up. Cody loved his cousin Chris who has been by his side since he was born. When Chris was around everyone else was chopped liver. He and Chris spent endless hours playing video games and monopoly or listening to his MP3 player. He liked to call Chris on the phone and listen to the recording. If Chris answered Cody would laugh and hang up on him. This game would sometimes last for hours. Cody loved his old dog Bear who passed away this past summer. Cody often dreamt about playing with Bear. He told us he couldn’t wait until we were all together again in heaven playing with Bear. Cody was compassionate, even after finishing the terribly painful treatments in New York he could muster enough composure to help an elderly lady into the elevator at the Ronald McDonald House. Cody loved babies or any person he deemed more vulnerable or fragile than himself. He picked up the game of foosball very quickly. Many a player underestimated his foosball abilities and lost because of it.

Those hospital trips scheduled or not trumped any other plans made in our lives. But there was one constant, not once, not one time did Cody complain about having to go into the hospital. He made it bearable for us to get through these past 4 ½ years. He was our rock, our inspiration.

The last several months have been the absolute worst. Cody rapidly deteriorated and stopped talking about fighting the bug. He was suffering great pain and pulling away from the ones he loved. Although his body was beaten down his spirit remained. He fought to do things for himself until his last hours. He was a true champion.

Through Cody thousands have been made aware of the many children battling this deadly disease. As his parents we will continue his fight against Neuroblastoma in the hope that no other parent will have to face this immeasurable loss.

We would like to thank all of our family and friends who have traveled this journey with us. Without each and every one of you we could not have done it alone. Our special love and thanks to Dr. Abu-Ghosh who shares the loss of a boy she considered her own.

Cody was and always will be our little hero. By age 6 he had been through more than most people will in their lifetime. In his short life Cody has touched many. We can only imagine what he would have done with a lifetime. He is truly an inspiration and not a day will go by that we will not miss him.

Captain Cody was a pirate who sailed on a ship with pillow sail. But, he navigated most of our world on a journey full of fierce battles and swashbuckling adventures. At times he was a ruthless looking, sea crusted sailor with a black eye patch and a smoking gun and at others he was a sweet and kind gentleman of fascinating charm.

Like other pirates, Captain Cody had mercilessly plundered in table games leaving multiple social workers, art therapists, nurses, and child life specialist lost in wild waves. He rode horses through enchanted forests, used chutes and ladders to take on fortresses and castles, seized one property after another in monopoly, sank numerous battle ships on endless wars, and conquered space on a Lego spaceship. There was nothing he did not experience or see, always displaying great bravery and courage.

Like the worst of the buccaneers, Captain Cody had seized the ultimate booty and hid it deep in his hospital room. His treasure chest was brimming with chocolate coins, precious jelly beans, candy necklaces, and golden lollipops. Always seeking greater richness, he decided to sell his precious candy one piece at a time. The price depended on the buyer, a decision that only astute business men would take. However, if the buyer looked tempted but too poor to afford the buy, sometimes Captain Cody made exceptions and gave away pieces of treasure for free in an act of great compassion.

Like most of the good looking pirates he took plenty of hostages only with his charm and invited us to navigate the seas. He is known to give a hundred kisses all at once and the warmest hugs. He laughed hard and spoke loud. He played, bargained, and cheated silently. He not only loved the seas but also enjoyed the beach where he gave wings to his pirate dreams.

Cody also had the lifestyle of the pirates; he drank life in one sip, through his adventures he experienced and enjoyed the intensity of living, and nobody or nothing broke his sword or put limits to his adventures. Through his imagination he navigated seas, land, and outer space. He would not like us to be weak; he would like us to continue on living strong with his willpower and imagination as our continuous inspiration.

Corina Gonzalez

Now the work begins...

Yesterday the kids went back to school. My relatives left on their own journeys to points all over the country. My daughter Corie leaves for Guam today to continue her tour of duty in the Navy away from her husband and kids. Unfortunately my sons Mickey Jr. and Joshua didn't make it but they both had a chance to see Cody before he passed. It was great to have all my brothers and sisters here along with my mother. I am one of seven kids so the craziness was something I remember as a child. When you throw in some of the children and grand children it can get pretty wild. I love them all very much and I'm glad they could make it.

We had been warned by the funeral director and many others who have been in similar situations that the hard part comes after everyone leaves and we are home by ourselves. Well it didn't take long to see that come to pass. Diane had gotten a little better everyday since Cody's passing but yesterday seemed to be a setback. In no way do I love Cody any less than Diane but I seem to be handling this much differently. She seems to be consumed by it most of her waking hours. Still crying at the thought of her baby being gone. Me, I just can't explain it. I did most of my crying the morning of his death, before the viewing and during the funeral. The kids, although they mention him many times a day they seem to be handling it pretty well. My company offers free counseling for such situations and I'm going to look into it today. I pray that Diane can find peace. I know that being a father who has lost his young son is extremely hard but as a mother it is much harder.

The funeral was wonderful. The unbelievable turnout of people was heart warming. We saw so many of our friends, family and people we didn't know. There were so many people from Georgetown Hospital that they must have shut down the Pediatric Clinic and PICU. So many people showed up from my office as did Diane's. The words that were spoken by Father Bob warmed our hearts and had Diane and I both in tears. She and I wrote the eulogy that was given by my friend Tom Ousley and to hear it put to words made everyone laugh and cry. It is truly amazing to see how a 6 year old child had touched so many people, many of whom he never met.

Besides the monumental task of healing we must somehow start to get our house together. For years now we have been stacking bags of papers, toys and games from each hospital visit. Every time Cody would go for a treatment, inpatient or not he would get a prize for his great behavior. We have toys in every room of our house. Boxes, bags or just piles. They must be gone through and Diane would not let anyone else do that. She will pick out the toys and keepsakes that have great memories and meant a lot to Cody. The rest I hope will go to children less fortunate than ours. We have leftover medical supplies that we will donate to charities that take such items. A little red wheel chair that was on lone from the clinic for Cody's final trip home must be returned.

As we try to get our lives back together we walk a fine line. One where we try to hang onto memories and good thoughts of Cody without somehow not living in the past. There is a part of you that somehow feels like you betray your son for even trying to move on. You feel like you must remain miserable for the rest of you days as a tribute to your lost child. You feel that you will be less of a parent for letting go. I know that is what my wife feels, on top of the gut wrenching feeling that she just misses her little baby. I love you Diane!

A wonderful writer...

This is who I want to write like when I grow up. Monica(Moon) is a beautiful lady I met before I ran my first marathon in Richmond Virginia. She is a spectacular writer and it is so worth the read. I'm a skimmer by heart but I read every word. Enjoy...

Moon

Long day...

Yesterday was one of those days that seemed so long but once it was over it seemed to fly by. It began like last 3 days did. I didn't sleep well and I was looking for a nap around noon but that didn't happen. Diane and I had to be at the funeral home @ 4 to get things ready. It also gave us time with Cody before anyone else got there. Although they did a good job fixing him up he just didn't look like our Cody. I can't say as I expected him to. I don't remember anyone every looking like themselves at a funeral. I took a box of his toys so we could display them the way he would have wanted. The people loved them.

The people, oh there were many people. The funeral director said that 200 had signed the book but he thought that at least 350 came in to see our Cody. The line wrapped out one room and up the hall to the next room. It made us feel good to see that many people had taken time to drop in. We had people from Florida, Pennsylvania, Kentucky, Washington State, Maryland and West Virginia. I'm sure there were more but I can't recall. I have a feeling today we will have many more people. I was surprised at all the people that brought their children from Cody's school. I just though that most would find it hard to let there kids see him. I think it was important for everyone who this little warrior. It is plain to see that he has touched many people in his short time.

Again I didn't sleep well. I was exhausted when I went to bed @ 10:30 last night but soon started tossing and turning around 12:45. I think my body is going to have to learn to sleep again after these past 5 years. We have to be out the door at 9 and @ the funeral home by 9:30.

The kids were pretty good last night. I warned them to be on their best behavior or they would be sent home. They were very respectful for the most part. It was hard for both of them to see Cody like that. Daniela commented that his hand was stiff and cold. She then started to cry. I did also. I'm very proud of Diane. Although many tears were flowing, she held up very well. I think the constant line of people that we were greeting helped her.

So now I get ready for another long day.

Viewing and funeral arrangements...

Cody's family will receive friends on Tuesday, March 10th, 2009 from 5-8 p.m. at the Baker-Post Funeral Home, 10001 Nokesville Rd. Manassas VA.

A Mass of Christian Burial will be offered on Wednesday, March 11th, 2009 at 10:00 a.m. at All Saints Catholic Church, 9300 Stonewall Rd. Manassas, VA with Rev. Robert Cilinski presiding as the celebrant.

Interment will be private and take place at a later date.

Memorial contributions may take the form of a donation in Cody's name to Cody's Crew Foundation, P.O. Box 2578 Manassas, VA 20108. The contributions will be distributed to the appropriate organizaton for the continued fight against Neuroblastoma.

Cards and letters can be sent to:
The Johnson's
8105 Blandsford Dr.
Manassas, VA 20111

Thank you all.....

With the heaviest of hearts....

Our Cody passed away about 8am this morning....


Update: For those of you planning on coming to Manassas, the viewing will be Tuesday and the funeral is Wednesday.

Thank you all very much for your prayers and support.

Preparing ourselves for the worst...

The past few days Cody has slept more and more. We seem to have a much better handle on his pain which is probably why. He has been communicating less and less. I took a couple of pictures of him and I just don't have the stomach to post them. I don't want to remember him like this.

Dr. Abu-Gosh came out to our house to visit Cody today. We talked with her for a while and she evaluated him. His fingers and toes are now looking blue which means that his lungs are starting to be less productive. His breathing is becoming more and more labored. She believes that it could be only a matter of a couple days. We also met with the Dr. from Hospice. We decided to sign up today. It is time.

The fact that we are at home makes some things easier but it makes it a little hard on the other kids. When they are not at school they can't get away from it. School is definitely good for them right now. Cody has tasked me with building all of his lego sets. He use to help but now that doesn't happen very often. At least that gives a mindless task to take my mind of the negative stuff. Diane doesn't seem to have that advantage.

Done...

Well, I couldn't post last night for a number of reasons. I was spent mentally and didn't have the words for a post. The kids took it pretty hard. Daniela cried for quite some time and asked many questions. In fact I'm still trying to answer those questions this morning. As for Justin, he took it quite differently. His first reaction seemed to be shock and then anger. Cody didn't want them in the same room last night. He had me working on his lego set. Even though he is on pain meds we still have to get the right dosage. There is a fine line between pain and totally knocked out. We hope that we can find that line.

One of my older sons Joshua came up for a few days. He is the one in the video with Cody in the baby chair. It was important that he come up and see Cody for a few days. He is a good distraction for Justin and Daniela. They love Josh. So, I'm keeping the kids at home today in hopes that they can digest this situation a little better before they go back to school. I think school will be good for them. Daniela immediately was worried that her brother would pass while they are at school. I had to reassure her that I would come and get them if that point was coming. I never imagined I would be dealing with this type of situation.

I may post some pictures from our beach trip today. I will see if I'm up to it.

Where do we go from here???

There just won't be much good to report for a while. I had to come home by myself tonight. They kept Cody because they couldn't get the oxygen and pump delivered today. He is in such pain that it is unbearable to watch. Today they put him on a morphine drip pump. That is the pump that we are waiting for. They are going to get it started at the hospital before he can leave. He was in such pain today that they couldn't do the radiation. I'm not sure but they may decide to forgo it anyway.

We sat down with the doctor and social worker today. We talked about Hospice and the pros and cons. One issue that has to be researched is how my insurance would handle it if we wanted to hospitalize him if we chose to. Apparently some insurance companies give you a hard time if you turn to Hospice and then decide that you want to go back to hospital care. We also talked about how we are going to tell the kids. We have decided that we will have to tell them tomorrow. Due to his major pain and need for oxygen we asked the doctor how long she thought we would have left with him. She said that because his breathing is becoming more labored and yesterday's X-ray showed the beast is really taking over now it may happen very quickly. Diane pressed for a guess on the actual time and the doctor said it could be a week or two, she just didn't know for sure. We also have to make the decision of where we want him to be when he passes. That in itself is a tremendously difficult decision.

So, now we take it one task at a time, one day at a time. First, get him home. Second, talk to the kids tomorrow and cry together. After that who knows....

From 80 to 30

What a difference a day makes. Yesterday at this time we were getting ready to head out of Florida. I was dreading putting long jeans on again because it was quite warm and humid. Now we are expecting 4 to 8 inches of snow tonight... Oh well it's good to be home. I will post more pictures later but here are a couple from our trip.



He did make it to the beach one day..



And a few dips in the pool...



Here is something that the staff from the hotel made. They were wonderful and made us feel so very special. The shells were made of chocolate and the sand was made from graham cracker crumbs.

Now for some bad news. Cody will have to stay another night. His oxygen level is 94% when he is awake. It is 84% when he is sleeping. The beast is advancing in his lungs. He will get a CT scan today if they can schedule it. Cody's liver has swollen to the point of leaving very little room for food in his stomach but they still want to put the tube back in his nose. His bilirubin numbers have almost doubled. It appears that the liver will possibly do him in before the beast will. He needs to be sedated for the tube but they are not sure if his liver can handle the propathol that is used to sedate him. I don't really think I want to put him through the install of the tube without sedation. God please help him! I don't want my boy to go through this anymore. Please help him...

Help needed:

This blog has been a blessing in so many ways. It has given us a way to relay information to our loved ones that live far away. It has been therapy for me giving me a way to relieve stress and express myself. It has made many of you aware of a disease that you have never heard of. But it has seemed to cause a problem that I didn't foresee. As many of you know we have chosen not to tell Justin and Daniela about the dire straits that Cody is in right now. We didn't want to say anything until we absolutely had to. Well, unfortunately I think the time is near. A good friend of our family called me while I was traveling into the hospital today. She teaches at the school that our children attend. She called to warn me that the word of Cody's very serious condition has been spreading amongst the kids at school. The information that this blog conveys to people is written on more of an adult level and isn't written for children per say. OK, to the point. I'm asking all the parents and friends of children that go to Bennett Elementary School to please speak with your children. Please explain to them that Cody is very very sick but we still hold out hope that a miracle can happen. Our fear now is that Justin and Daniela go to school and hear some child say "I heard that Cody is dying." Or there may be that child that does not get along with Justin and Daniela and out of spite say something very hurtful. In the days, weeks, months and years to come we will have a tremendous amount of hurt to address. Please explain this situation as best as you can with your children. I know you all understand that we are trying to protect our children the best we can.