Monday, June 30, 2008

Finished on Saturday...

Cody finished his last round of chemo on Saturday. We went in together and he knocked it out without any problems. He now has 5 more days of the anti-fungal to take. He is taking the pill in the morning and the 2 hour infusion at night. He is getting his GCSF during the day that will help his system recover again. He is also getting a anti-diarrhea med that he has to take because of one of the chemo drugs.

His new surgery date to get his port installed is July 7th. Let's cross our fingers that we have nothing come up to stop it this time. I have all three kids today. I'm going to try and get some pictures at some point. I'll post them if I get some good ones.

More later...

Friday, June 27, 2008

Day 4 or 5

Cody has done so well this week. His strength continues to amaze me. Justin has really done well also. He goes in with Cody and they play video games and board games while Cody is getting his chemo. He has been very patient with Cody this week. I will take Cody in tomorrow to the main floor to get his final round. The clinic isn't open on Saturdays or Sundays.

I'd like to quote my friend Jim from ACCA. "Please call, write to your senators & tell them to support the "Caroline Pryce Walker Conquer Childhood Cancer Act of 2008" which already passed the House. Senate is expected to vote on this bill shortly. Sorry I don't have the bill number. It would authorize $30 million a year over 5 years providing funding for pediatric cancer clinical trials, create a national childhood cancer database , and improve public awareness and communication regarding available treatments & research for children with cancer. This would be a big help & is specific to children. Please support this legislation. Another good organization in the fight is whose mission is to cure childhood cancer."

There is also neuroblastoma specific language included in the "FY09 NIH funding bill" legislation rounding Capital Hill right now. This is a segment taken from that bill. "NEUROBLASTOMA- The Committee encourages NCI to accelerate support for neuroblastoma research, with a focus on clinical trials for high-risk patients. Given the poor survival rate for children with advanced disease, the committee encourages NCI to prioritize support for all promising neuroblastoma research both intramural and extramural." This is very encouraging! Please, please, please take a moment to call or write your Senator and Representative. Almost all of them have web sites and phone numbers so what is stopping you?

I'll be working on that tree again this weekend. It is kind of like my personal test. It's kinda like a marathon. At first glance you think, "there is no way I can do this." But, when you keep going at your own pace, the next thing you know, you have made some progress. The next thing you know, you're done.

And as far as the putt-putt game goes, Cody lets me get one shot on each hole. If I don't get a hole-in-one he finishes that hole for me. :) I owe Daniela a game and some ice cream because there was some miscommunication the other day. I thought that she was out with her friend having ice cream and that was not the case.

Tuesday, June 24, 2008

Started chemo today...

Well Cody's blood was ready so he got started with chemo. We took Justin in with us and they both did remarkably well for such a long day. We left the house at 8:15. We got there before 10 and they took his blood. We found out that they were going to start today so I took them to Taco Bell across the street for lunch while we waited for his chemo to be mixed up. He didn't get hooked up until 2pm. We finally got out of there around 4. What a long day. The chemo is given in two parts. The first is in IV form and then he must take an oral chemo which is about 2 tsps. I had to make a deal with Cody to take his oral meds. The deal was a round of putt putt golf. Hey, whatever it takes.. I will stoop to blackmail.. :D He did very well this time. The last time he got very ill on the first day. Let's pray he continues this way.

After some convincing Dr. Abu-Gosh said Cody may still get his port in two weeks or so. She would like to do it when his blood starts the upswing in recovering. This would give him the summer he so badly deserves. He has earned the greatest summer anyone could have. I firmly believe that he couldn't have it with the tubes sticking out of his chest...

Monday, June 23, 2008


Even though things are going relatively well right now, this is a very stressful and emotionally draining time. This whole journey is just so unpredictable it just seems to beat you down. Just when we had a goal of Cody getting his port it was snatched away from him. Now it seems like his summer is just not going to be what we had hoped for him. He may have to start chemo tomorrow if his blood is up to par. If he does start tomorrow that means he will finish this round on Saturday. The insurance finally did approve the use of the medicine in IV form. He will get two infusions for two hours each for ten days, then the doctor will reevaluate. Viewing it from the "glass is half empty" view, they could've approved the pill which we purchased through the weekend. He wouldn't be hooked up to the pump for four hours a day. I guess I should be grateful for the IV meds.

On top of all this we worry about what is in store for Cody. We worry about how all of this is affecting our other kids. We walk a narrow line and try to keep our balance. I think the camp was great for Justin and Daniela. They both seemed calmer and more understanding of all that is going on. It's still early but I do appreciate it.

I over did it a little this weekend working on the tree. My back is a bit sore so I didn't run today. I'll see how I feel tomorrow.

Thursday, June 19, 2008

Where do I start??????

What a day. I didn't go with Diane and Cody because I was assured that the procedure he had was low risk. That didn't keep me from worrying. It turns out the procedure went pretty well. Diane said that Cody was a trooper all day. Although we haven't received any results from the recent tests, the news we did receive was not the best. First off, the meds that the doctor prescribed to Cody the other day was so awful tasting that Cody was gagging. So today the doctor prescribed him fluconazole which fungicide in pill form. So we get word from the pharmacy that my insurance will not pay for this drug because it is so expensive and they want to review the case to see if it is really necessary. They expect to review the case within 24 hours. In the mean time this potential fungus will keep growing. This is just one of many issues that add to the stress of having a sick child. There are other insurance issues but I won't get into that right now.

Being a member of BOP I have been hearing of shortage issues with the 3f8 antibodies. Well we find out today that the do not have enough antibodies for Cody to start. The doctor from MSK wants to keep Cody on the low dose chemo until they have more available. This is all starting to build up on me again. It's not enough that he has to battle this awful disease but now he has to wait for a drug to be approved by some bean counter and to have more of another critical drug to become available. If God is testing me why can't I be the one who is sick? My son shouldn't be going through this...

To top the day off, I came home to run this evening. I've been doing 5 mile runs every other day and it has been getting easier for me. Today it is nice and cool with low humidity. I start out running and my legs felt very sluggish. This really doesn't make much sense because it's usually very hot and humid days when this happens. On top of the legs I just couldn't get my breathing under control. I couldn't seem to get enough air in my lungs. I'm disappointed to say that I did 3 and called it quits.

Update: medication denied so I have to take him in for an IV med. He would have to take about 5 other drugs and they would have to fail before they will approve another. Meanwhile the infection just keeps growing. Real nice, don't you think?

Wednesday, June 18, 2008

Update! No port tomorrow......

Well, here we go again... Cody was suppose to get his port tomorrow but it is now on hold. Cody will go in tomorrow for a different procedure. He will be getting his lung flushed out with water and they will send the water out for testing. This is being done to try and identify what the spot is. There are still no results from yesterday's blood test. He may get his port in a week or two or three. It depends what the results are.

It never fails...

Just when it seems like we can take a breath we get a slap of reality again. Diane took Cody in yesterday to the clinic and do a chest CT to complete all the scans needed for MSK in New York. Well they noticed a new spot on his lung. We are hoping it is a lung infection but there is a possibility that it is a fungus, or worse. They took cultures yesterday and should know today or tomorrow if it is a fungus. If it is, there is a problem of whether Cody's liver is strong enough for the meds that are needed to fight the fungus. If it is worse, well, I don't even want to go there.

Cody had a very bad day yesterday. Diane told me he had major meltdowns all day. He also had one when it was time to go to bed. Diane and I both are at whits end with these outbursts.

He is still on for his surgery tomorrow. We hope to get some good news by then also. I will keep you all posted....

Be an angel, help find a company that can help Corporate Angel get flights out of the Washington DC area to the New York area. They only offer empty seats to cancer patients and their parents.

Monday, June 16, 2008

Semi Quiet Weekend

Justin and Daniela are off to a camp this week. The camp they are attending is for siblings of cancer patients. I hope to have some great pictures when I go pick them up on Saturday.

Saturday Diane and I worked on that tree for a few hours. It's going to take a few weeks to get that cleaned up. I went to the Wine Festival on Saturday for a few hours. Just as I was leaving the clouds started to roll in. It was hot, hot, hot! Diane, Cody, Chris, Mary Ellen and I went to the Washington United soccer game Saturday evening. The United kicked the crap out of New York. Cody had a great time.

Sunday I got an early start on that tree. When I went in for a drink of water I heard Cody raising cane in the bed room. It turns out that he had a ear infection and Diane had to take him in to Georgetown. He got a shot of antibiotic and he is doing great today. Cody and I had a great father son day today. We went down to the neighbors pond to run his radio controlled boat that Diane got on sale. I think it will turn out to be an excellent investment. I have some great pictures...

A quick word on Corporate Angel. I found out from a fellow BOP member, Caryn Franco that AOL is no longer flying out of Dulles on Mondays and Fridays. Also, they are fazing out the VA operations and moving everything up to NY. The reason I'm posting this is very important. Corporate Angel makes the very hard situation of traveling to NY for treatment much more bearable. If you know of any company that travels the Eastern Corridor from the Washington DC area to the New York area please let me know. Like us, the medical bills are over whelming and will have to wait until Cody's treatments are done but when you add the cost of getting up to New York into the mix it will be a back breaker. This is a major deal......

Saturday, June 14, 2008

Drop by and say "Hello."

I will be manning the BOP tent at the Clifton Wine Festival from 1 to 3 today. If you live in the area, please drop by. As I said before, part of the proceeds go to BOP.

Justin and Daniela are going down to Lake Gaston for the weekend and then they are going to a camp for the week. I'm sure they are going to have a great time. As crazy as it gets at the Johnson house sometimes we are still going to miss them. I know Cody will also. We are going to have to find something for him to do while they are gone. He will have a busy week anyway with another scan on Tuesday and then the port on Thursday.

I'll be working on that tree this weekend also. I'm in no big hurry. I'll just do what I can do. Have a great weekend everyone.....

Thursday, June 12, 2008

Great news from a very long day....

Well, we had to be at the hospital at 8am for his MIBG today. We got there 30 minutes early so we got started early. There were two parts to the scan. One took 20 minutes and the other took 45. Cody did a fantastic job. He laid very still on both and actually fell asleep on the second. In fact, after he was finished with the second one I carried him down to the clinic for blood work and he slept until 11:30. After giving blood we talked to the doctor and she said that the bone scan from Tuesday came back good. The MIBG today had an area around the kidneys that was suspect so Dr. Abu-Gosh wanted Cody to have another scan this afternoon. So we stayed and he had a different scan to look at the kidney area. We didn't leave the hospital until 4pm. I called Diane on the way home and she said that she just got off the phone with the doctor and the scan came back great.... Ya!!!!!!!!!!

So now he goes back on Tuesday for blood work and then on Thursday for his port... Double Ya!!!!!

He was such a good boy today. He didn't complain one bit.

Wednesday, June 11, 2008

Rough weather....

We got hit by another bad storm last night. We lost power and a big oak tree.

We had our own "hanging chad' episode here. I found out today that I was in fact the high fund raiser last month at the Relay for Life. I received a nice shirt and gift certificate for Red Lobster. As I said before, this may be the last time I put this kind of effort into raising money for the Relay. My focus is going to be on BOP.

Here is a nice clip from MSK in New York. It gives you an idea how much they are trying to help the kids... You have to heal them mentally as much as physically.

I take Cody in for his MIBG tomorrow morning. As I said yesterday, "the CT scan came back good yesterday. We have still not heard anything about the bone scan yesterday. I will let you all know when we find something out.

Tuesday, June 10, 2008

Two down and one to go....

Cody did his CT scan and bone scan this morning. We have heard that the CT had no changes from the last time so that is a good sign. When I get the results on the bone scan I post it. He gets his injection tomorrow afternoon and has his MIBG on Thursday morning.

Do you live in the Washington DC viewing area? If so you might see me on Fox 5 tomorrow morning. I've been asked to get my hair cut as a Father's Day promotional spot for Tranquility Spa in Manassas. The spot is suppose to air sometime between 6am to 9:30am. Most people are not hanging around the house watching the news at those hours...

Also, if you live in the area the Clifton Wine Festival takes place this weekend in Clifton VA. Band Of Parents will be having a large tent there with a silent auction. A portion of the proceeds from the Festival will be going to BOP. If you can make it please do.

Sunday, June 8, 2008

Hot, Hot and more Hot...

Yesterday I was able to get 5 miles in before the sun burnt through fog. I was also able to cut up the big oak limb that feel down from the storm earlier in the week. The temperature got up to 105 with the heat index and today is not much better. I'm staying in for the most today.

Diane and I took the boys out to see Kung Fu Panda yesterday evening. It was a very good movie and the kids loved it. Daniela spent the day with her friend at the swimming pool.

This week will be very busy for Cody. He has scans on Tuesday, injection on Wednesday and scans on Thursday. If all goes well he will start the antibody treatments soon there after. He will also be getting his port next week. He is so psyched. He wants to take a bath in the worse way.. We are already having trouble with his dressings. In the summer the body sweats and the moisture gets under the bandage. If it is not changed and dried out it could easily get infected. Just another reason a port is the way to go...

Here are some pictures of Daniela when she went to Lake Gaston with her Rachael.

Thursday, June 5, 2008

Bad weather...

Yesterday we just missed getting walloped by a tornado. We had winds stronger than I have seen here for years. We lost half of one of our big oak trees. The power went out around 3 in the afternoon and just came on around 2 this afternoon. I went out and bought a 7000 watt generator which insures two things. 1. We will never be without power again. 2. We will never lose power again. Murphy's Law you know.. :D

Believe it or not, I didn't see one second of the game last night. Remember I had no power? If I had gone to a bar to watch it I probably wouldn't have been able to get back in the house.... :D The Penguins should be back again next year. They have a great young team... Actually we had a pretty good time playing Cody's favorite board game Monopoly.

I have to take him in to get his blood checked in tomorrow. Hopefully he won't need any blood. Next week he has all of his scans and tests. We are praying for a clean slate. That way he can begin his antibody treatments.

If you are looking for a new gift idea or something nice for yourself, check out the BOP etching link to the right of my blog. It is the big fund raiser for our group this year. They have some pretty nice ideas.

God is calling another angel... Stop in and give a kind word or two..
Marissa Monroe

Monday, June 2, 2008

A great weekend..

We had a very nice weekend. Saturday we went back up to the Baltimore Aquarium. We had a slight meltdown but we were able to weather it and finish the day. It's been great having Lori here. She will be leaving tomorrow and we will miss her. Cody has a busy next couple weeks. This week he will go in tomorrow for his breathing treatment and his immune booster. Next week he has CT scan, Bone scan and MIBG. The following week on the 18th he will get his port if all goes well. I'm not sure when hi next trip to New York.

I was able to get a 10 mile run in yesterday. Unfortunately I wasn't able to run the whole way. I made it to about 8.5 and had to walk. I broke the cardinal rule of hydration and food. Although it wasn't that hot yesterday it was very humid. After I got back home I did some grass cutting and still wasn't smart enough to eat anything. At 1 o'clock I needed to lay down. When I grow up, I want to be smart... :D

I feel pretty confident in saying that my beloved Penguins are all but finished. Watching them play on Saturday night was very painful. Detroit is just too good. Pittsburgh will have to win 3 games in a row and I just don't see that happening.