Today my brother came by to visit with Roland and the other boys. We talked a lot about what's happening and all. It's good to talk sometimes. Seems like everybody and their brother has been calling us to offer help. I tell them the best way to help right now is to pray. Pray that God makes the tumor benign when they do the surgery.

Right now the surgery is scheduled for Wednesday morning. In one of my questions I asked if it would matter if we postponed it a week to get a second opinion. The doctor said "no problem" and that he encourages us to be as comfortable as possible with our decision. While I trust our doctor, it seems impossible that it would not matter at all. Doesn't, at some point, the tumor spreads if it is cancerous? Could it happen in the week we wait to get a second opinion? I'll be asking the doctor this and a lot more questions. I'll post them when done.

The biggest thing Gina and I are dealing with right now is talking to Roland. We don't know what to say. We can probably explain the initial surgery without too much trouble. It’s the chemotherapy part that I don't know what to say. Right now Roland is feeling great; he laughs, runs, plays, and has fun. How do I tell him that, although he feels fine, he's not? Besides that, how do I tell him that to make him better (even though he doesn't feel sick) we're going to do a treatment that is going to make him feel really bad?

That bring up another question I have. If they are removing the tumor, why do they need to do chemo? I could guess that it’s to make sure they get it all but why is it so general (it travels throughout the bloodstream)?

During the surgery the surgeon is suppose to put in a "port" which is a device placed under the skin by the shoulder blade so that they can administer the chemo and draw blood easily. The down side to this is that, since it's under the skin, they have to keep sticking him over and over again. We’ve heard most kids "get used to it". That's not very reassuring. We talked with a friend of ours whose daughter had chemo. She said they put a catheter in rather than a port. The good part is they don't have to keep sticking him over and over again; the bad part is you have a tube hanging out and you can't go in water. I'll be asking the doctor about it tomorrow.

Well that’s about it for today. I mentioned earlier we are asking people to pray as a way to help. Another way is to offer advice. Sometimes it seems despite all the research we do, we are still in the dark. If you have any suggestions, please pass them along.

After a Thanksgiving that was hard to get through (we went to my in-laws, who i love but I wasn't feeling particularly social that day), Friday finally came and I was able to ask Dr. Adolph all the questions that had entered my mind. Wednesday and Thursday I was on the internet a lot looking for all the information i could. I think I have about 10 sites bookmarked under rhabdomyosarcoma. I hate the fact that I no longer have to look that word up to spell it. Anyway, here are the questions I had and the answers I got:

Are you the doctor throughout the procedures?

- No, only for the surgery.

Why does he have to lose a testicle? Is it attached?

- He will have to have a testicle removed if the tumor is malignant because of spreading or if it is benign but attached either directly or indirectly to the testicle.

How positive are you that the testicle must be removed?

- It is the most likely scenario.

Will having only one testicle affect his ability to have children?

- Not really. The infertility rate in thge general population is 2%. In men with one testicle it is 3%.

Will having only one testicle affect his ability to produce testosterone?

- No, one testicle produces enough for any male.

My wife told me about chemo but I read on the internet targeted radiation is often used.

- Only used if the lymph nodes were affected (swollen) which they are not.

Could you give me a better idea of what the treatment program will be like (days missed of school, how long to treat?

- The procedure will be done as an outpatient procedure barring complications. All other info on treatment would come from an oncologist although he would not return to school for the remainder of the week.

What is the best schedule to maintain to make sure he has the best chance of recovery?

- Normal before any treatment (chemo) and afterwards follow doctors instructions.

Is there anything we can do at home, possibly a special diet, which will help with his treatment? We will literally do anything?

- There is nothing that can be done for surgery (which is what the doctor deals with).

Is Ochsner and New Orleans, la the best place to treat someone for this condition?

- As this is a rather simple "procedure" one place is not necessarily better than any other FOR SURGERY.

Do you have any people we could talk to who has been through this?

- This would come from oncologist

Will a pathologist with experience in childhood cancer and tumors review the tumor mass?

- Yes

What do you know about and think about St. Jude?

- It is a good facility along with MD Anderson in Houston.

Would we benefit from a second opinion?

- No problem with getting a second opinion. He could recommend people. Also, there is no problem waiting a week to have the procedure so you could get a second opinion.

I had a more questions but they were answered with the ones above. I must say I was most impressed with Dr. Adolph and his willingness to sit through all the questions I had. I never felt rushed and, at the time, I had all my questions answered. Now, of course, I have more questions.

Well this should bring everyone current.

This is here so that I can tell everyone who's interested, what's going on with my son Roland. I am going to copy a letter I sent in one version or another to a lot of people. This should bring anyone interested up to date with what's going on.

This was send out Wednesday November 26 after we had the CT Scan:

For once this is not about my autistic son, it is about my oldest son, Roland (he was named after his grandfather, not me, so our middle names are different). For a little while we had been noticing he was scratching his crotch area a lot. We didn't think too much about it (Gina actually thought he was starting his "guy stuff" early). For a separate reason we went to see a geneticist at Ochsner. The geneticist did a physical on Roland and that's when he discovered "the lump". He referred us to our pediatrician. We took him to the doctor and the doctor said most likely it was a hydrocele which is a harmless collection of fluid commonly found in that area. The doctor said we should consult a pediatric surgeon about having it further diagnosed and removed.

Yesterday we took him to Ochsner to a surgeon (Dr. Adolph) who did an ultrasound on the lump. It took about an hour and after 4 different doctors examined the myriad of pictures, it was determined it was not a hydrocele but a tumor. Dr. Adolph ordered a CT scan to determine exactly what it was and, if malignant, if it had spread to any other areas, in particular the lymph nodes in the area.

Today we had the CT scan at Ochsner. They could not determine if it was malignant or not. The good news is they are sure that, if malignant, it has not spread to the lymph nodes. They think there is a high probability it is a rhabdomyosarcoma. How is that for a 10 cent word? It's a tumor which affects kids usually between 2 and 6. Roland is 6. It is found in different parts of the body. 20% are found in the scrotum. The good news here is that this has the highest rate of curability if it is malignant. The odds of a child having rhabdomyosarcoma is 6 in 1 million.

Now more bad news - regardless of if it is malignant or not, Roland is going to have the tumor removed, along with one of his testicles. I don't understand why they would need to do this if it is benign. I didn't get to ask any questions as I was away when the doctor called. I will be talking to him on Friday as, on that day, we are to schedule his surgery for some time next week.

The doctor has warned us that if is malignant it will be aggressively treated which will mean our lives will change dramatically. I can't imagine our lives being more dramatic that what is dealing with our autistic son. I don't know what we are going to do but we are trying to prepare as best we can.

It's so weird to see Roland right now. Of course he has no idea what's happening but he was really excited to "ride" the CT machine, it goes up/down and back and forward. He asked the technician if he could ride it again when the scan was over! If you look at him you would not think anything was wrong at all. He looks fine and feels fine.

Anyway, I'm not sure why I am writing this. Maybe it's therapeutic. If you pray, please pray for my son.

Praise God in His glory for all the things He has done for us and the gifts He has given to us. Foremost among those gifts are my 3 beautiful sons.

So now you know the beginning.

I'll end this post now, The next post has my questions (and answers) from Dr. Adolph when I did get to talk to him on Friday.