The end of this Journey

Hi all, it's been a while but I wanted to wait until I had something important to share and now I do. The results form the pathologist came back and Gina and Roland went and saw the doctor. The results confirm our miracle that the tumor is completely benign and that Roland is fine!

Although we had the news a couple weeks ago Gina and I were kinda nervous as the doctor said there was a small possibility that they could find cancer in the tumor when the pathologist biopsied it. We had faith in God as always but it did make us a little bit apprehensive.

This has been the hardest thing I have ever had to go through, but it has done so much for my marriage and my relationship with my kids.

As you know my kids are my world and I love them all equally. When Gina was pregnant for Ivan (our second child) I was a little worried. We had Roland already and I was scared that I could never love a child, even my own as much as him because I loved (and love) Roland completely, all the way to the top. Well, I didn't know it but God knew, there was plenty room at the top. When Ivan was born (and probably a little before) I realized I love Ivan completely also. God puts no bounds on love. I love Ivan exactly as much as Roland, completely and all the way to the top. When God blessed us a 3rd time with Christian, I had no more fear, just faith. Now there are 3 people in this world I love completely, all the way to the top.

So I am glad to tell you this Journey has ended. I am sure we'll have many more and of course we are in our 3rd year of our Journey with autism. That may be a subject for another blog.

In parting I want to say thanks again. First and foremost to Our Lord and Savior Jesus Christ, with out Him we have no hope. I also want to thank all of you! The prayers, the e-mails, the phone calls, and the food have been overwhelming and very appreciated. God heard and answered all of our prayers.

Also as an aside thank you to the most wonderful mother in the world. I happen to be married to her. I have never seen such love, devotion, and dedication from a mom to her children. You only have to look at Ivan to tell that. Thank you Gina.

Here's a prayer i use to say a lot and I want to offer it for all of you:
We praise God in all his glory, we thank Jesus Christ for all He has given us, most notably our families, and we ask the Holy Spirit to be with us as we Journey to be reunited with the Trinity in Heaven. Amen.

Dominus Vobiscum!

So far so good.

Roland is continuing to progress with no real problems. He's not even needing the medicine for pain. The biggest thing he's facing in being cooped up in bed. Fortunately, he's come into a little stash of new toys that can be used in bed. So he's been watching TV, playing video games, and playing with new toys. What a deal. Personally I keep wanting to wrestle with him because that's what I do with all my kids almost every day. I think Ivan's going to start pulling away as he is already bigger and stronger than Roland.

Today Gina and I have been exhausted from what we've been too but life goes on. I'm back at work trying to catch up from the time i was off. Gina is back running Ivan's program as well as taking care of Roland, so basically she is being Supermom as usual. Did I mention I think Gina is the most amazing mother on the planet? I only say that because it's true :-).

I'll post if anything happens but it may not be every day. The best way to follow a blog that's not updated everyday is to use a reader. You can download one here: Google Reader.

Thanks again to everyone. Gina and I can see Christ in all of you. May He bless you and your families as much as He has blessed ours.

Gina wanted me to mention that if you have e-mailed her and haven't received a reply, don't worry, you'll be getting one soon, she's been very busy taking care of Roland and Ivan (you know, that Supermom thing).

The night after

Roland is doing great. The stay in the hospital was longer than expected because Roland was having trouble holding down the pain medicine because of the anesthesia received during the surgery. It finally wore off enough where he could keep the pain medication mostly down so we could go home.

On the way home Roland slept the whole way. Gina and I could sympathize with him as we were both exhausted. I hadn't slept well in days and Gina was up at 3am in the morning at the adoration chapel at St. Peter's church. We had been too nervous to be able to sleep well.

After we got home Roland started to really come around. He had gifts from many people including a big cookie bouquet from his aunt and uncle which, despite his weakened constitution, managed to munch down part of one. We started giving him some other food and he ended up eating pizza and 2 more cookies. He has been doing great, talking to people on the phone as they call and feeling fine.

Roland does have some limitations but nothing too bad. He has to stay dry for 3 days, not even showers and he has to stay non active which means no wrestling or horseplay for a couple weeks. He should be fine for school on Monday! This we are both happy about because Roland loves school.

So we are taking good care of our son and he seems to be doing really well. After talking to someone who called he asked "How does everyone know I went to the doctor?" What was so innocent to him (people being concerned for him) was such a huge blessing for us.

This might be my first good night sleep in a while. Before, i would go to sleep worrying about Roland and what was to come. When I would wake up, for just a couple of moments I didn't remember about his condition and then all of a sudden it would "smack" me in the face, and it would bring me down. Tomorrow when I wake up it will be with the realization that all is fine in my son's world thanks to God and all the many people who have prayed so much. May God grace be bestowed upon these prayer warriors and their families.

I will continue to update this blog for a little while longer so that everyone can know how Roland is doing. This journey is almost over.

Praise God in His glory!

If anyone tries to tell you that God doesn't exist or that prayer doesn't work, tell them this story:

Roland HAD an epithelial inclusion. It's a completely benign cyst. It is extremely rare. It's so rare that the surgeon who has been operating for 25 years has never seen a case before. They had to look it up on the internet which is why it took so long. There have apparently only been a few documented cases of this in that area. It was removed and he is now in recovery. He'll have some brusing and be sore for a few days but should be fine. He will go back to school Monday.

On top of that, the inclusion was located away from the testicles so he got to keep both of them! Yet another miracle. God is great indeed.

All I can say is THANK ALL OF YOU FOR YOUR PRAYERS, THEY WERE ANSWERED!

The doctor has been around 25 years and never saw this, but God has been around a lot longer and knows all about this.

If you can't tell Gina and I are on top of the world! The emotional rollercoaster we have been on has been intense but the final stop was fantastic. We are so happy! ! !

As I said Roland is in recovery but we should be leaving fairly soon. I'll update this blog later tonight and let you know he's doing.

Thank you again for all the people that said even the smallest prayer for my son.

At the Hospital - waiting

They have an internet connection open to the public here in the sugery waiting area. Roland went into surgery at 8:25 and he is still in the surgery room. at this point. Apparently I was being optimistic in my earlier timetable post.

We arrived on time and everything went fine. Roland was in very good spirits as, at this time anyway, he really likes hospitals. He did not need to get stuck to be put under. He drank a cherry liquid that made him groggy. It took about 10 minutes and we were talking and all of a sudden he became very groggy and they wheeled him off to the o.r. They were going to give him some gas through a mask to really put him under. So it's so far so good.

Anyway, I don't know when I will get to post next but we will let people know as soon as possible,

Keep those prayers coming!

Who you've all been praying for

This was taken at the Orange Ball last month. Roland was chosen to be a train holder for the Orange Queen that was selected that night. He was so happy and had so much fun. I also want to mention he was also very dashing in his tux!

The night before

After putting the kids to bed I am getting nervous about tomorrow. It's only through the grace of God and the countless people praying for Roland and our family that we are able to get through this.

I'm scared also. I'm scared that Roland will have to have an IV in him which would count as a needle stick to him. He really doesn't like that. Last time we went to get his CT scan he asked me not to let them "stick" him. I said I promise because I knew they won't. I won't be able to make the promise this time.

I'm scared that they are going to have to remove his left testicle. Maybe it's a guy thing. I know that it won't affect his ability to have children and I know it won't affect his testosterone production, but it's taking something away from my son that he came into this world with. We haven't told Roland about this. Maybe that's a mistake, we're not sure but we don't see a need to tell him and possibly scare him too. He'll be in pain that area, and he'll have medicine for the pain.

I'm most scared that the doctor is right and that his tumor is malignant. I have tried so hard to prepare myself but I'm not sure you can. We will have to wait about an hour or so after he goes in before we know. I have prayed and prayed that this does not come to pass but if it does it is God allowing it so I will accept it and we will deal with it.

I'm also worried about Gina. She is the most wonderful person I have ever known. She gives so much to our family, friends and strangers she just meets. She gives and gives and when done, she gives some more. I love her so much. She, along with others, thinks the tumor will be benign despite the doctor saying that the tumor being malignant is the "most likely scenario". I'm worried because I think it might hurt her that much more. I know I'll have to be strong for her and for Roland.

I want to take this time to once again thank all the "prayer warriors" we have praying for Roland and out family. This journey would be so much more difficult without you all. We have been touched by the countless e-mails and many, phone calls. It, along with Jesus Christ, have given us the strength to persevere in this most difficult of times. Please keep the prayers coming, God is listening.

The schedule for tomorrow is:
7:00am - We get to the hospital and we prep him for surgery.
8:00am - Roland should be going into surgery.
9:00am - His tumor will be biopsied.
9:20am If malignant he will have a portacath inserted into his shoulder.
10:00am - He should go to recovery.

Gina and I will be able to see him as soon as he wakes up. When he's fully awake he'll be moved back to where he started and everyone else will be able to see him. He'll have some medicine for the pain in his groin and the possible pain in his shoulder.

I hope people understand we won't be able to call right away but we will let people know as soon as we can. I'll update this blog as soon as possible when we get home but we will have a child who will need a lot of tlc no matter what.

Sorry this post was so long, I guess I had a lot to say.

I'm going to post a picture of our family from a much happier time.

What we did tonight

Sorry this is coming out so late but I wanted to do something special for Roland so I took him to the movies. We saw 'Bolt' and he really had a good time. I was planning on taking him alone so i told him privately (away from Christian) if he wanted to go to the movies and he said yes. Then he said "Can my good pal Christian come with us?" Well after my heard melted I told him "yes" so all 3 of us went.

Some Decisions Made

Today we made some decisions. We will not be seeking a second opinion. Why? The most they would say different is that Roland does not have to lose his testicle. While that would be great, Gina nor I would be able to believe it because we can't take the chance that they are wrong and it would need to be removed. Therefore, there is no benefit in a second opinion.

Having said that Roland will have surgery on Wednesday. We will get there for prep around 7am. he will go into surgery for 8. The local oncologist will talk to us about options as they do not take new patients. We will have to go to Tulane or Children's in NO or St. Jude in B.R.

Having made the decision I am getting pretty scared. I have faith in God and am trying to put all my trust in Him. I am trying to hope for the best (benign) but prepare for the worst (cancer needing chemo). Even though the doctor said most likely scenario would be cancer, Gina is holding out hope.

The outpouring of support has been nothing short of incredible. Gina and I are touched by how many people are praying. PLEASE continue. Please pray for God to make the tumor benign and pray for God to give out family strength in this time. A person mentioned today to pray to Blessed Father Seelos. It helped her daughter who was cured of Kidney cancer.

Some Questions Answered

I got to ask all my latest questions here they are:

If you remove the cancerous tumor, why does someone need chemo?
- There are microscopic particles that could remain and could spread. Chemo will kill them.

Why a port as opposed to a catheter? Doesn't a port mean being stuck over and over again?
- The port is easier because the tube would stick out of Roland’s chest and make it easy to be pulled on. The port is not as bad as it seems. The area will become hard over time and they never stick without being swabbed with numbing gel.

How long will the surgery take?
- 2 hours. The first hour will be to get to the tumor and testicle and most likely remove them. The tumor will go to a pathologist and he will determine if it is malignant. (15 minutes) If it is it will mean Roland will have a port put in his shoulder which should take 45 minutes. Then it will be 7 – 10 days before we know what his chemo regimen.

I assume it is full anesthesia?
- Yes, he will be under for the entire time (2 hours)

What is the recovery like following surgery?
- He will slowly wake up but we should be able to take him home. He will have pain medicine as he will have pain in his groin and maybe his shoulder if a port was put in.

How and when do we get to meet with an oncologist?
- While he is in surgery an oncologist will come talk to us. They are not accepting new cases so the chemo will be done at Children’s or Ochsner.

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.