Prayers needed for tomorrow

[GinaMarie]

Tomorrow I take Adam and Noah to San Fransisco to UCSF to see new Dermotologists. They both have skin cancer and I havent been able to find a doctor that can handle their emotional issues or one that is able to sedate them to remove the cancer. Adam has LOTS of skin cancer all over his face and back and chest. He did have PDT treatment (light treatment) but it didnt do a good job at removing the nodule or larger skin cancers and it only treated the ones on his chest and back not his face. He has already had two positive biopsies and one was on the side of his nose by his tear duct. That was probably close to a YEAR ago and still hasnt been removed. I DONT want him to lose his eye or nose because of this. I know to many with our disease who have lost eyes and/or nose from it. Adam is already saying they ARENT doing any biopsies tomorrow but they might have to.

Adam is tall and strong and HARD to hold down. He needs to be able to come to a point where he faces this disease and knows it HAS to be done.

Noah has a skin cancer on his eyelid just under his eyebrow (same area I just had removed) that needs to be biopsied but he refused 3 months ago with our other derm in Sacramento..

UCSF says they think they can handle the boys and can sedate them easier. Please pray tomorrow works out and the boys like the doctors enough and will cooperate. The traffic will be HORRENDOUS with my gas guzzler. I see my derm also and will probably have biopsies done also before thier appt.

I dont think I told you all about Noah's dental appt Monday.. What a TOUGH brave boy.. My back is REALLY hurting, I'll post that when I get home from church tonight.

Its suppose to rain also tomorrow so I have to drive with crazy people in the rain. I hope my wipers work well on Guzzles (my van's name ).

Actually thinking about it when Noah is arguing about me about going tomorrow.. Adam is the only one with the appt tomorrow but Im taking Noah HOPING they will look at him also. His appt is not til Jan. If not.. Oh well but they will see both boys are similar and hear about them.
Gina Marie

[peglem]

Prayers have gone up for a safe and beneficial trip.

[moose53]

Oh, ((((((Gina Marie)))))),

I'm sorry that you and your boys have to face this over and over again :(

I pray that Adam and Noah 'click' with the doctors and nurses there so that trust can be developed.

It's so hard to have to take your kids to medical procedures, isn't it -- especially when a Mom's first and last instinct is to protect her kids from every kind of pain.

You're a great Mom, Gina Maria http://img.photobucket.com/albums/v90/moose53/MINIS/HUGS/amixcora.gif

I'm assuming that your boys have mental health professionals locally because of the impact of their illnesses?? Also, maybe local medical doctors?? Maybe a YMCA?? Have you thought about getting them both some sort of training in either relaxation or Reiki or biofeedback. Any one of those procedures will give them the skills that they need to calm themselves. Even some of the hospitals have nurses on staff that know therapeutic touch. It's probably too late for this appointment, but, it might be worthwhile in checking to see if they do. Usually one does therapeutic touch on someone else. But, it is possible to do it on yourself if you're calm -- maybe Adam and Noah could learn to do therapeutic touch on each other -- what a wonderful gift that would be for them to give each other.

I hope tomorrow goes well for your boys. I hope that they get all of the cancer and the boys suffer no pain from the procedures. I understand the kinds of fears that you have in your heart about your boys.

It's a good idea to take Noah tomorrow even without the appointment. If he's familiar with the environment next month, that'll make it 'easier' for him.

I hope your own procedures go well and pain-free tomorrow, too.

BIG HUGS (and love for all of you).

Barb

[milivica]

You most definitely have my prayers for a safe trip, proper treatment, and safe return home.

Mili

[GinaMarie]

lol Barb you had me laughing when you mentioned the boys doing touch on themselves.. Thier version of TOUCH is WRESTLING. :rolleyes: :p lol Even tho I HATE it. WIth Noah being small body wise and his head being so large I see him being hurt and told them that because its dangerous and how its fake and all.

I know what you meant tho.. I'll look into it. Adam was in OT therapy and I need to get him back in it. He has some sensory issues.

We are getting ready to leave soon. I just filled up "Guzzles" yesterday and already used 1/2 a tank just coming home from town and then going to church and back last night. Now I need to fill it up again to make sure I have enough gas to go and come back.

I'll update when I get home tonight.

Hopefully my migraine wont be to bad.

I appreciate all the prayers.

I also have questions about PDD and intelligence or something like that if I remember when I come back.. My brain isnt working like normal :rolleyes: .

GM

[Kristen (ColeysMom)]

Sending loads of positive vibes and prayers your way for a productive and successful visit for BOTH boys!!!!

In my thoughts!

[JungleWoman]

Gina,

How do you do it? I dont think I could keep myself together!! I mean, autism is hard enough, but you're tackling all these difficulties with your sons by yourself-- God is really looking out and caring for you, isnt He?

Rich blessings be on your family and I pray that God will guide the hands of the dermatologist and give your boys and you peace that surpasses all understanding and that they will be healed of their cancer.

((((((((((((((((HUGS)))))))))))))))))

[GinaMarie]

Well our appt with derm in San Fransisco didnt go to bad.. No biopsies were done today so Adam was happy about that. :o) Tho he was not to sure about undressing for a lady doctor and THEN she had LOTS of doctors come in a LOOK at him in undressed (except for underwear).. lol

He does have LOTS of skin cancer but she is more concerned about the two big ones on each side of his nose next to his eyes. Those she is going to have a pediatric plastic surgeon remove under general anesthesia soon. The others all over his chest and back she said can be removed at a later date by her and Dr. Freiden under general anesthesia also. It would be so much easier if Adam was more cooperative but he isnt. We tried to explain to him that he has to start accepting this and that its something that has to be done or he will lose his eyes and/or nose or more.

My appt was at 2 but we were driving around for at least 20 minutes trying to find parking along the street and so we were 15 minutes late. They didnt get me out til after 3 (after burning/freezing about 4 possible skin cancers) and Adam's appt was at 2:45 and we didnt sign him in til almost 3:30 and we didnt get out of his appt til almost 5:30 and went to the diner across the street after. We left there at 6 and didnt get back in Tracy til 9 pm. Got home about 10 pm. Its now midnight and Im falling asleep.

The boys didnt get thier schoolwork done the teachers sent with them. Noah goes and see's the derm for his appt on Jan 10th. Then they see her every 3 months when I go in to see my derm. I'll let you know when they schedule Adam's surgery.

You ask how I do it? ONLY by God's grace.. :) HE is my tower and my strength!! HE is my bestest friend and I couldn't make it without Him. As you moms all know.. We HAVE to do it.. We are moms. There are times we dont think we can at times but then we just get up and do it. I know before we had kids there were times we probably saw a kid or something and thought I could never do that.. But here we are surviving and doing it. I knew about this disease before I had kids. I thought "I handled it well, they probaby can to".. NOT KNOWING that it could be worse.. I didnt know as much about this disease as I do now.. They both have skin cancer EARLIER than I did. They both started getting jaw cysts earlier than I did. They both have Chiari malformation and the Cavum Septum Pellicidum Brain cyst that I dont. So they are going thru MORE than I did as a child.. Yet I also go thru this now with them. But Im also trying to teach them that they have God with them and that they can lean on Him.


I also found out today when they were talking to Adam that he has reflux. I knew Noah and I have severe GERD (reflux).. I didnt know Adam did. Doctor "C" asked Adam if he has pain or deals with heart problems or stomach problems and he said he has pain like heart burn when he eats hamburgers from school... I asked him later when we were eating if he gets heart burn often and he said yes. ugggg Noah had surgery when he was 5 to stop his reflux. That just means MORE medication for Adam to take and MORE money for me to put out.. BECAUSE of our disease we are high risk for cancer so I cant have them dealing with reflux because we are higher risk for esophageal cancer. I already deal with Barretts Esophagus with me because of having Refux since infancy. So I get upper scopes every 2 years to check for cancer in down there..

Sorry.. Didnt mean to write a book. lol Now its going on 12:30

I came home today and my teens werent home and I have NO idea where my 15 yr old is. He has no cell phone and we dont live near town so he doesnt have a way to come home. :mad:

Ok.. Im going to get my 17 yr old to take the garbage out that he was SUPPOSE to have done BEFORE I got home and go to bed. He has his senior breakfast tomorrow morning..

I'll ask about Adam's PDD and schooling tomorrow since this is so long already..

If you made it this far.. Im surprised. Thanks a million.

HUGS,
GM

[JungleWoman]

Does your little guy understand the importance of removing the cancers now? I sure hope so.

Gina, God is the rock that has kept me from totally freaking out with this whole autism and parent thing all around!!

And dont worry about the 'book' LOL-- remember we have Mili here, we're used to it :P

[moose53]

((((((Gina Marie)))))),,

http://img.photobucket.com/albums/v90/moose53/MINIS/HUGS/amixcora.gif

Yeah, he'll get over being embarrassed about his underwear -- we all do http://smilies.sofrayt.com/^/aiw/shock.gif

Good job, Mom. "Teenagers" -- just like herding cats, isn't it :rolleyes:

BIG HUGS (and love). I noticed you posting at 12AM and 4AM -- did you sleep at all in there?? You HAVE TO sleep long enough to keep the dust off the bed -- don't you know that rule :D

Barb

[GinaMarie]

No I dont "think" he does.. or he is being stubborn or to afraid. Maybe he is more "visual" and needs to SEE what happens if he lets it go to long if I could find that video of Jim who lost his eye and nose from skin cancer. I dont know. Its so hard when thier thinking is so different.

Barb, I THOUGHT when my oldest ones were in the "terrible twos" it was hard... HAAAAAAAAAAAAa... I'll take the TWO's ANYTIME compared to TEENS. lol I'll call them TERRIFIC TWO's now. lol

I think it would be MUCH easier if thier dad either SUPPORTED me or WASN'T around.. He contradicts EVERYTHING I say or do and they boys seem to be following HIM. :rolleyes: :( :mad: When I try to get the boys to help me out around here and have "RESPONSIBILITIES"... He calls me a slave master and says stuff and gets the boys against me. If the boys call him to take them to the skate park he does. If I ground the boys for something they did he calls me names and will take the boys places. :mad:

He also is taking them to Disneyland for Christmas.. I call him SugarDaddy.

So it makes it harder to raise them to be "GENTLEMEN" when thier dad (who still sleeps on my porch or front lawn because he wont grow up and get a place) contradicts it and lives the opposite. :rolleyes: :mad:

BUT with God ALL things are possible. I can do ALL things THRU Christ which gives me strength. :D ;)

HUGS,
GM

[JungleWoman]

Barb, I THOUGHT when my oldest ones were in the "terrible twos" it was hard... HAAAAAAAAAAAAa... I'll take the TWO's ANYTIME compared to TEENS. lol I'll call them TERRIFIC TWO's now. lol


I've heard this before LOL!! You cant spank a teenager....oy...

[moose53]

Oh, I feel for you Gina.

My ex-husband was like that. He took it to the extreme. He was always the opposite of what I did -- he wanted to "balance" me. If I was too strict, he was too not strict (words fail me :p ). If I was the opposite, he was the opposite.

Pain in the http://img.photobucket.com/albums/v90/moose53/MINIS/ANIMALS/jackass.gif!!

He sleeps on your porch :eek: I'd be calling the cops; although, I understand PERFECTLY why you don't :rolleyes: "Men" -- can't live with 'em; can't live without 'em; can't beat the crap out of 'em :p

http://img.photobucket.com/albums/v90/moose53/MINIS/HOLIDAYS-XMAS/holidayhug.gif

Barb