We are home!!!!

I'll write more tomorrow.. :D

Settled in...

Well we got to meet Dr. Modack and the MSK team yesterday. The pediatric floor is very nice and big. They have many things to keep the kids busy while up here. You can tell this place is very well respected. People from all over the world bring their children here for treatment. People who have been told that there is nothing that can be done for their children by the hospitals in their own countries. We met a very nice guy from South Africa who is here with his son. They stay here for months at a time.

Dr. Modack seems like a very sharp guy to me. I think it is going to take Diane a while to get use to him. You see, we are use to dealing with women doctors who have a much different way of delivering information to people. I don't want to say they sugar coat things but they are more reassuring when discussing treatments and possible outcomes. I think Dr. Modack will have to get use to dealing with Diane also. I'm still not use to it.. :D

We discussed a few options that we have but I'm not going to get into that yet. It seems like the more I learn, the more I don't know. Cody is scheduled to get his nuclear injection today. Then, tomorrow will be a very busy day. He will have a MIBG, MRI and 4 point bone marrow. He will need to be sedated for all 3 of them. We will not know much until next week I'm sure. I learned a couple of days ago that Cody's surgery at Georgetown is not a done deal yet. We are going to wait until the surgeon up here looks at the scans and test and both Dr. Modack and Dr. Abu-Gosh talk with the surgeons and decide what is best for Cody.

I got a few great pictures yesterday and last night. We went to Time Square show Cody the lights and to walk around. Although it was pretty cold we still managed to get around a little. We will be going to see Lion King on Broadway tonight. A good friend of ours at Georgetown lined up some tickets for us.

That's about it for now...

Thanks to Liz and my other NY running friends for all the great info. I did manage to find a great deli yesterday. I bought two large coffees and two bagels with cream cheese for 5 dollars. :D

We made it!!!

Well we made it to the big city.... It's raining but not too hard. The Ronald McDonald House is very nice. The room is like a regular hotel room. On the second floor they have a big dining area with a kitchen off to the side. All the guests have use of the kitchen. There is a big play room for the kids. They have arcade games that don't need coins and plenty of craft stuff for them to use.

Culture shock... We had breakfast about 10:30. We went to a little restaurant up the street. 2 eggs, 2 pieces of bacon, 2 pieces of toast and coffee costs $8.95. Now for some of you who live here or in other parts of the world this may seem normal but in Manassas it would cost about $4.00. We stopped to get a few things that the local grocery store. A small box of cereal is 6.85, a 5oz. bag of chips is $3.69. The problem is if we drive up here we can bring this kinda stuff with us. But, if we drive we also have to pay parking everyday which is very expensive. Everything is relative I guess. People here make allot more money but the cost of living is much higher. I guess we will have to plan better.

Cody is feeling pretty good. He is running all over the place. He is having a good time. I hope it continues...

Getting ready to go...

Diane spent yesterday packing. We're trying to also get all the support structure for Justin and Daniela in order. I'd be lying if I told you that this all isn't a little unsettling. Although I know the procedures that Cody is going to have are all the same ones that he has had before, this trip stands for much more. It stands for a new chapter or a turn of the page. Until this trip all of Cody's treatments have occurred at Georgetown. Sloan Kettering is known for handling the hard cases, the 2nd, 3rd and more relapse cases. They take on the ones no other facility can handle. I'm glad we are going there don't get me wrong. But I'm sad that Cody has got to this point. So, tonight we get things ready. We get our minds right for an early morning departure.

When we get back from NY next week we know that Cody's surgery is the following week. He will have a much larger scare than his first surgery. The doctor described it as the Mercedes Benz logo. Our poor little boy. He just doesn't know what is going on. He really doesn't ask many questions either. He just lives for today. It is so hard to stay focused on the positive, especially as I learn more and more about this evil disease. I have to just keep saying "one foot in front of the other."

We are looking forward to seeing NY. I will post when I get chances to do so.

Cool Dude..

Yesterday Cody asked me to take a picture of him. He asked me if he looked cool... Dahhhh, he is the Mack Daddy! I love that boy....

Coming soon.....

My oldest daughter Corie had a good suggestion last week. When I mentioned that I was going to become more proactive in my fight against neuroblastoma she shared an idea with me. When we get back from New York I will be ordering "Cody's Crew" silicone bracelets. The same type bracelets that were started by Lance Armstrong. I haven't figured the whole plan yet but I will giving all profits to benefit neuroblastoma research.

Now for my second iron in the fire. Many of you may know that I dabble in drawing. I've had a little formal training when I lived in Pensacola FL. I stopped for a few years because the kids were small and it's hard to leave half finished work laying around with little ones. Well I have had a renewed inspiration to start drawing again. I have decided to do a 4 or 5 drawing set of Pirates. I've just about finished my second drawing already. It's easy to draw when you have inspiration. To me, drawing must be kinda like writing songs or books is for writers. When I get the time I will take the drawings up to get digital copies made so I can share them with everyone.

I'll write more later...

As promised here are a couple of pictures from this morning.



Cody wearing his pirate skull cap, complements of "Kirk", my buddy from Runnersworld. Thanks, Kirk..... Cody loves your gifts...

Got a plan....

Things started to fall into place yesterday. I wasn't real thrilled about having to drive into DC to talk to the surgeon yesterday. I'm kinda glad I did now. We have a better idea of that part of the process now. He told me that he feels the tumor is now operable. He is confident that it can be removed safely. He said that he will be removing the whole right side and part of the left side of Cody's liver. Cody will be left with 20% of his liver but that is OK. The liver regenerates so in a matter of weeks it should be back to full size. The doctor said that it has already started to grow larger because of the dead tumor cells. The liver seems to know when it needs to repair itself.

I also heard from Corporate Angel yesterday. They informed me that we have seats on a AOL-Time Warner jet on Tuesday morning. We will be going to a small hanger that is adjacent to Dulles Airport. No security lines or waiting in the terminal. How sweet is that? :D

Cody is really looking good. His appetite is still not the best but it gets better and better everyday. I'll try to get some pictures this evening and post them. I will be taking plenty of pictures next week also. A good friend at Georgetown has lined up tickets to see Lion King on Broadway for Thursday night. I've never been so this will be a good time for all of us. I guess they have things available at the Ronald McDonald House also. They try to make your stay as comfortable as possible. I think we will be staying close to the room on Friday because Cody has 3 or 4 procedures on Friday. One of the is them is the bone marrow test. They will extracting from 4 spots which probably make him very sore for a couple of days.

On the way home yesterday I ran over something on the road. Well, it's a good thing I was close to home because when I went out this morning to go to work my left front tire was flat. I put the spare on in the garage which was good. It's raining and very icy out this morning. I looked at the tire I took off and there is a big piece of metal sticking out of the tread.

Getting things in order...

We are starting to get things in order now. We will be flying up on Tuesday. I believe we will be meeting with the doctor on Wednesday. Cody has one procedure scheduled for Thursday and then 3 procedures scheduled for Friday. I haven't heard yet but I think we will see the doctor the following Monday to discuss our options after he reviews the results of the scans and bone marrow. I found out yesterday that I have to take Cody in today to meet the liver surgeon at Georgetown. I'm not sure why this is. He has already seen his scans so I don't know why we have to head into town again just to talk. As far as I'm concerned we can talk over the phone. Oh well.

Our son Justin is really not looking forward to us making the trip. The kids have never spent that much time away from Diane. I've traveled for work before so I think they won't miss me that much. Every night before bed, Justin asks "when are we going," and "how long are we going to be gone?" I think in the future, either Diane or I will make this trip with Cody alone. It just seems like that will be easier on the other kids.

Clinic day...

I took little man into clinic today. Everything is as well as can be expected. This will be our last visit until we return from MSK in New York. His blood work came back good and most of the things that are low after chemo are getting back to normal. His ANC numbers are a still alittle low but that happens when they stop giving GCSF to boost his system. It takes a while to level out. The fungus test that was done because of the new spot came back negitive. They will do a biopsy on it when we get back and/or remove it when the tumor is removed. Dr. Abu Ghosh believes it could be an infection. Both she and Dr. Modack at MSK think it would be unlikely that it's a new tumor growing when the other is shrinking. I'll hold on to that train of thought.

We will be taking Corporate Angel up to New York. We could drive but with gas and parking it would be foolish. The fact that a car would be pretty much useless up there anyway makes it a no brainer.

We are just going to enjoy our time at home before the next step...

Thanks for reading.

What's new.....

I've said this before. Part of what makes this whole thing hard to deal with besides the obvious is that we don't know what is next. Well again, par for the coarse, we have just found out we are not going until next week. They couldn't schedule us for the scans until next week because they require Cody be seen by a doctor first. Well instead of calling us on Friday to tell us that we had to call them and find out after we have already started making plans. Cody's doctor won't be back until next Tuesday so we will have to head up then. I just signed up for a 4 mile race this weekend and I won't be there. We have to arrange flights and a place to stay also. This drives me crazy...... Oh well, don't sweat the small stuff I guess.

A pretty good day...

We just hung out at the house today. I got out for a 5 mile run this morning which felt pretty good. I've been in touch with some of my New York Running friends. I've been trying to set up a weekend run in Central Park. So it seems I've done it one better. There is a 4 mile race there on Saturday that one of running friends mentioned. I'm all signed up.. :D

We will have a pretty busy couple of days before we leave. Cody goes to clinic on Tuesday. Just goes to the doctor the same day. We have many things to plan before we leave. We are lucky though. We have a tremendous amount of help from family and friends. That's my motto, "he who dies with the most friends wins." Even with all my short comings I still have people who talk to me... LOL

Take care!

Sleepy Saturday...

Diane and the boys stayed up late last night. Daniela spent the night with a friend and went to Disney On Ice.... She had a great time. I went out for a "few" beers with my good friends Glen and John. "Thanks" to both of you, I needed that.

We are planning to go see Spiderwick today. Justin has been reading the books so he is especially excited.

We still haven't got the final word from MSK about the trip. We are sure we are going but we can't line up the flight and room at the Ronald McDonald House with out the orders. Diane is not much for flying but we both agree that's the best way for us to go up. With parking and gas it would cost us more than we need to spend. I'll keep you all abreast of what we are doing.

Thanks for stopping in.

Valentines Day Bash...

Hey everyone...

Today was a very special day. Cody had a rough time sleeping last night because he was so excited about the party today. The party wasn't until 2pm so all day long he was asking Diane if it was time to go yet. When we arrived at the school we checked in at the main office and Cody had hugs for everyone. He hugged the secretaries, he hugged the nurse, he hugged the principal too. He also had hugs for both of his teachers. He was so happy to be back in school. It was a very emotional time. Cody wore his mask and his camo skull cap. We brought some extra masks for the other kids if they wanted them. After Cody was settled in I asked him if he wanted to take his cap off. At first he said no but then changed his mind. The other kids were amazed and concerned but after we explained why his hair was gone they didn't say another word. It was like he had never missed a day. I stayed for an hour but had to go back to work. Diane stayed with Cody and finished the party. Dr. Abu Gosh said that when his counts are up there is no reason that he can't go and spend some time at school.


Well we have a bit more of a plan now. Diane received a call from Dr. Modack up at MSKCC. It looks like we will be heading up the end of next week. Right now it looks like we will be heading up on Wednesday evening and staying for about 7 days. The Dr. did mention to Diane that he thought that it would very strange for one tumor to shrink and a new one to grow. That statement made me feel a little better. We will decide in the next days how we are going to get up there. I look forward to meeting some of my running friends while up there. Hey RunWest, Park Runner, Liz and I Love New York. I hope to get a run in Central Park with you all while I'm up there.

I hope you enjoy the pictures...

Ice, ice everywhere...

Well it's 7:30 and I'll let Cody sleep for another hour or two. Then we will head in for his scans. Pray for shrinkage! I never thought I say that... :D LOL....

Tomorrow is going to be a special day also... Yes it is Valentines Day, but it's more than that. We are going to take Cody in to his class so he can exchange valentines with all of them. He has not seen his teachers and the other students since November when he got sick again. You know we will be filming and taking pictures of that. I put out a couple of feelers to the Washington Post and Channel 4 news and told them Cody's story. I did it in hopes of raising awareness about Neuroblastoma. Since joining the Band Of Parents I've been feeling the need to become more proactive in the fight against this disease. I don't want to wait until something bad happens. Cody will be the perfect person to help do this... I have not heard back from either of them yet I hope today one of them will give me a call.

I will post later today to let everyone know the outcome of the scans... Keep praying please....

Well we just got back and we have mixed results. On the good side the tumor did shrink. On the other side, there appears to be a new lesion right below the tumor. It's rather small but that is how they start. The doctor is sending his blood sample out for tests of fungus. We hope and pray that is what it is. This roller coaster ride never seems to end. I don't know what to say right now.

Well he did it again...

A second tooth came out last night. He had two that were loose on the bottom front and I think he helped the second one a little. The tooth fairy gave him $20 yesterday so I'm sure that was a major factor in getting the other one out. I don't have too much to write about the past few days. I guess that is a good thing. Cody is feeling pretty good right now. He seems to be getting the sniffles but that is actually something he has been battling for the past couple of years. He has had chronic sinusitis off and on for a long time. Diane has to take him in to clinic tomorrow to check his platelets. He will probably be taken off the IV feeding to give his liver a break. He seems to be getting his appetite back a little at a time. We had salmon for dinner and he had 3 servings. He has always liked salmon. He nibbled and snacked most of the day yesterday also. If I get some pictures today I'll post them...

Thanks for stopping by.

I found out earlier today that I will be taking him in on Wednesday for his scans. So, we canceled his appointment for tomorrow and we will kill two birds with one stone on Wednesday.



Here is a picture from earlier today. Notice anything different? :D



Here is the lost Hanna Montana picture.. :D "Cody letting his freak flag fly, wearing his sister's wig."



This is Cody and his cousin Chris. They are very close and Chris always stops in to spend time when he is home from school. Maybe Cody was doing his best Chris impression.. :D Chris has always been a big part of Cody's life.

My first loose tooth..

Bitter sweet.. Our little boy is getting older.. :D Cody lost his first tooth today.. :(

Another good day...

As usual we don't know what is next except for the fact that he has to go into the clinic on Tuesday. He went in today and needed to get platelets so he and Diane were running late this afternoon. I think that he will get his scans late next week. I will let you know. Please pray for some major tumor reduction so they can operate soon. Here are couple of pictures from yesterday.


This picture makes me cry.... I can't imagine life without this smile...


Here is Cody playing his favorite game in the world..

Good Morning...

Since I don't give Justin and Daniela enough face time, here they are! I just got back from my 5 mile run and they are doing their Webkinz before the school bus gets here so I thought I'd get a picture.. Mom, they say, "Hello!" Cody has a teacher coming to the house today. They will start coming two days a week while he is home so he can keep up. Although I must say, he is very advanced for a kindergarten. I'll post more later...

A couple days ago we joined "Band of Parents". Their link is to the right of my blog. The title pretty much says it all. We are parents of children with neuroblastoma. We are part of a club that you really don't want to be a member of. If you don't know how terrible this evil disease is you will soon find out by following my blog. Although I don't want to post bad news, I feel I must raise awareness about this childhood cancer. Being a member of BOP we get updates on others who are going through what we are. At this time I'd like to ask for prayers of healing for the hearts of Holly, John and Kiersten Moore. They have just lost their 5 year old son Carter to neuroblastoma. Carter was just diagnosed in June of 2007. This really shows you how fast and devastating this disease is. Here is the link to Carter's
CaringBridge site. God Bless You Moore Family!!!!

A good day at home...

Cody had a pretty good day at home today. He actually has been eating a little bit more each day. He ate half a cup of pudding for breakfast, 3/4 bowl of oatmeal for lunch. He was eating a plate full of chicken nuggets when I got home from work. He seems to be in very good spirits also. Here's to progressing a little more each day. We hope to for a better idea of what the future holds for Cody.

Glad to be home....

Cody is wearing a Key West Pirate shirt compliments of G2G (Norine). He only had it on for an hour. While sitting at the diner table Daniela accidentally spilled something and it went all over his shirt. He was not very happy about that. I had the great pleasure of meeting up with Norine in November at the Philly Marathon. Norine, Cody loved the Pirate stuff. You definitely knew what you were doing... :D He says thanks...




This photo is before bed. Justin and Daniela are in bed and he is getting some last minute play time... Just happy to be home.. :D

A very quiet night......

We went to bed at midnight because he had to get his Pantamadine (spelling) which he must get once a month. This medicine helps prevent pnuemonia. He has to inhale the mist which is sometimes quite a chore. Besides getting up to go pee every two hours he did very well. We should be going home soon. If not today I would say tomorrow. Yesterday I mentioned about him having to learn to walk again. Well he put that worry to rest yesterday. Linda brought him a remote control car and Cody had it in the hall chasing all the nurses with it. He is a chip off the old block.... :D So much for worrying about walking...

Again, we are waiting for the results of his blood draw. They should be back around noon. We are hoping for a big jump from yesterday.

I would like to say "hello" to Sherry, Rob and their children Jenna and Brandon Will. They lost their daughter Ashlynne in December to neuroblastoma. Sherry, Rob and family have lived our nightmare and more. I hope they drop in and say "hi". My heart goes out to them... Diane and I were introduced to them by the fine people of ACCA. ACCA is an Air Conditioning Contractors Association that did a tremendous amout of work around our house when Cody was diagnosed the first time. They provided Christmas for the kids when Mom and Dad were busy dealing with Cody. We are forever indebted to them.

I will post more when I get more info....

I just spoke to Cody's nurse, Kelly. She said his numbers are at 470. She has to wait to ask the doctor if we can leave today. Technically speaking he must be at 500 but I think if they would do his blood again right now it would be 500. They draw blood at 4am so I know it is higher than 470 now. Cross your fingers....

1400 and we are HOME!!!!! He is playing Webkinz and chillin.... :D

The down side...

If Cody gets to come home today or tomorrow he will have work to do. This past chemo has kept him bed ridden for weeks now. He will now have the hard task of walking again. He has very little strength in his legs and cannot stand for more that a couple of minutes on his own. Eating and walking will be the main focus for the next few weeks.

I'll post his numbers as soon as I hear from Diane.....

I just spoke with Diane. She said his numbers went down to 172. I'm not quite sure how or why that happened but it did. So, it looks like he will be in for at least one or two more days...

Here are a few pictures from Saturday.....

Good morning everyone!!!!

Well we had a pretty good night. Cody fell asleep around 7pm and slept through the night. He did have to get up about every two hours to go pee. They are still giving him antibiotics until his blood numbers get back to normal. I don't have the numbers yet but I will post them as soon as I get them. He will be getting platelets today also. Hopefully this will be the last he will need until the next chemo or whatever is next.

He is such a little shyster. I've been trying for weeks to clip his nails but he hardly ever lets me do it. This morning I thought that I would offer him 25 cents for each nail he would let me clip. Well you know he took me up on that offer. It cost me 5 dollars to do all his nails. He has been selling his bubble gum for 25 cents a piece. Linda, who does artwork and plays with the kids up here brought him bags of candy so he could sell it. He sells it to all the doctors and nurses who come to see him. Cody says he is saving his money to go to the beach. He has also told me he wants to go back to Disney World. We went there for his Make-A-Wish. We had a great time. That will have to wait until he is back on his feet again...

I got my 5 mile run in this morning. It was in the upper 30's but very nice. I even wore shorts, which was nice.

I'll post more later......

I just found out that Cody's ANC level is now 204. Wow!!! After being 12 yesterday that is not too shabby is it? When he comes back, he comes back! I havn't spoken to the doctor yet but I would say he is going to come home by Tuesday if his blood continues to recover like this... :D

Back on the other side....

As soon as I left yesterday they moved Cody back to the other side of the floor. She said he had a little melt down so they ended up giving him some Morphine and he started to feel a little better. I'm awaiting word on his blood work today. His blood started showing signs of recovery yesterday. In the past he usually turns around quick once he starts. I don't anticipate him coming home before Monday at the earliest. I think they will plan on scans in two weeks. Then we will find out what is next.

Last night I got home and Justin wanted to spend the night at my sister-in-laws. It was just Daniela and I so even though I was bushed we went to the movies. It was a nice father daughter night. We went to see Alvin and the chipmunks. It was pretty hard to keep my eyes open but she really liked it... :D

Thanks again for the prayers and kind words. I'll post again later after I find out what his blood work turns out to be.


Well I'm back at the hospital doing my shift. When I got here Diane and Cody were outside. She had him in a wagon and they were down by the fish pond. We took him up by the soccer field and the observatory. It was chilly but he really enjoyed getting out. We kept him outside for about an hour or so.

We are in a room that he has never been in before. It's much larger than the others and it is probably the quietest. It has a private shower and it's about 3 feet wider than the other rooms. You know I'll be getting out for a run tomorrow.

Cody's ANC number is 12 today. It will probably double tomorrow and needs to be around 500 to go home. Usually once it starts going up it goes crazy. He could be at 500 in 3 or 4 days.

Have a great evening all.......

OMG!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

This is why people go postal...... I think I got 2 hours of sleep last night. Cody napped from the time Diane left, about 5pm until 10pm. Then he woke up and watched TV until 12:30. He wanted to eat but they didn't want to give him anything because they didn't want the blood rushing to his stomach and causing problems. But after a patented Cody meltdown I went out and insisted that they let me give him something. Believe me his blood pressure was worse from the meltdown than any food could cause.... So he ate 3 graham crackers and a couple of chips then washed it down with a little apple juice. We finally tried to lay down and get some rest. Now for any of you who have spent any time at the ICU or PICU I'm sure I don't have to explain but for the rest of you here it goes. They have a couple of alarms that go off periodically here. OK, they have many alarms that go off periodically here. OK, they have many alarms that go off ALL NIGHT LONG here. There are alarms for the heart and there are alarms for blood pressure. There are alarms for oxygen level in the blood and alarms his breathing. The freaking alarms have alarms!!!! Sorry! I here by promise to NEVER complain about the noise on the other side of the floor. I'm going to go over there and beg for forgiveness and that they please let us come back................................................................................................................................. Oh, where am I? Sorry, I dosed off for a second... Anyway, besides the lack of sleep he did pretty good. He had a BM and it actually had form. It didn't look like diarrhea. The plan is that he will move over to the other side this afternoon. They are totally full and have to wait until they discharge someone. I'm sure he is going to be grumpy today but I will take it.. I just want him to feel better..

Thanks again for stopping by and I'll post more later...