He is only 13 years old

[lost parent]

:( Hi everyone
Iam new to this forum my 13 year old son has a Tumor on his right testicle
its been there 7 months and he did not tell us.
It is so large we only found out last night as he has been very sick in the last 2 weeks.A ultra sound on his pelvis showed a tumor from the bottom of his ribs,down to his pelvis on his right side and across to his left side .
They done a ct scan to look at the tumor and thats when they found the one in his right testicle thats where it started it couldent grow any bigger down there any more so it has growen up into his upper body.he never told us or the doctors it was there ,they will do a biopsy this morning .But the tumor has grabed a hold of his min organs if they cannot shrink it with cemo/radiation he has less than 6 months
to live.He is 13 years old please all you boys out there tell your parents
I am still in shock i dont know what i am to do now its 6.43 am cant sleep cant do any thing right now please excuse the typing .

lost parent

[dadmo]

lost parent:
I'm sorry to hear about your son's condition. Even tumors that are quite large can have an amazing reaction to chemo. The attached link will take you to a list of testicular cancer experts in Australia ,http://tcrc.acor.org/experts.html#australia. My only suggestion at this point is to get them involved in your sons treatment. Many times they are more then willing to direct your local oncologist as to what treatment may offer the best result. Don't lose hope even in advanced stages this disease can be cured. Please keep us posted as to your son's test results.

[johnseed]

Hello Parents,

Here is something to think about...

I had a VERY fast growing pure seminoma tumor. It responded very well to chemo and I got full remission.

Was told that faster growing tumors respond best to chemo, so perhaps that will be the case for your son.

JS

[Don]

Lost parent,

I am so sorry to hear this news!!!!!! Please do not give up hope... Your son has similar symptoms to mine.... It took months of treatment and surgery but it can be beat.. My tumor in my abdominal area was massive.. My scans and films were veiwed by several of the best TC experts in the USA--Dr Einhorn and Foster at Indiana U-Dr. Sheinfeld at Sloan-Dr Richie at Dana-Farber and Dr Fishman and Pow-Sang At Moffitt Cancer Center... they all agreed that I had one of the larger abdominal tumors ever veiwed by these doctors..Its not an easy road but after 7 surgeries and 6 rounds of chemo I have been cured..My tumor was wrapped around my internal organs as well..I did end up losing a kidney and a very small peice of the liver(which regenerates itself) Even when given a poor prognosis this can be beaten but it sound like you need a true professional at this piont.. Not saying you need to come to the states for treatments and surgery but you may want to consider a phone consult with an or all of these EXPERTS... All of these Dr's are willing to take the time to give their opinions and advice..THEY WANT TO HEAL PEOPLE!!!DONT BE AFRAID TO ASK for opinion after opinion until you are confortable that the situation is in good hands.. My local Dr,s said I had 6-12 months to live and their was nothing more that could be done --after being treated by the EXPERTS I was soon cured!!!!! Though there are some doctor that do more RPLND surgeries to remove abdominal tumors ,DR. Julio Pow Sang at Moffitt Cancer Center in Tampa, Florida has done more RPLND surgeries involving large tumor wrapped around internal organs than any one else in the USA according to the other Experts we spoke with.. You can contact them at canceranswers@moffitt.usf.edu or www.moffitt.usf.edu and click on the Genitourinary Oncology /Dr Julio Pow-Sang or call them @ 1-813-972-8418.... Dr Pow -Sang did what many others said could not be done.... If I can provide you with any information at all please feel free to Private message me here @ TC-Cancer or at dsl122971@aol.com I will be glad to share any and all information I have to help your family in any way I can.. Please don't hesitate to ask at any time... Best of Luck--Stay Strong and Stay Positive...This can be beat!!!!!!!

[Fish]

I am also very saddened to hear your news.

And, I echo Don's comments -- DO NOT GIVE UP HOPE. The advances in treating and curing testicular cancer have been remarkable. The days ahead will be difficult, but never lose hope.

You, your son, and your family will be in my thoughts and prayers.

Best wishes,

Jim

[matthias]

Having a 3 1/2 yr old myself, I do not even want to imagine what you are going thru right now. My thoughts are with you; and I am sure those of everyone else on this board.

ALL: Please be aware that even babies three-years old can get certain varieties of TC! They just never post here! You have testicles (or even one!), you can get TC. No matter whether you are 3 or 60!

[lost parent]

Hi everyone,
Thank you for all your replys we still know nothing still know treatment yet
doctors dont know which way to go with this yet.
They did put a port in his chest and took samples of the tumor and bone from each hip as they think it is in the bones as well .
He is so sick cant keep any thing down its been 4 days .
I cant say much more as we donot know anything but i will keep yous posted when i can.
Thanks Kay

[dadmo]

Kay:
Have you been able to contact any experts yet? Press this with your doctors, the people listed in Don's post are more then willing to do an over the phone consult.

[HZence]

I understand how this can be. I am only eighteen - I know that's not quite thirteen - but I too was unsure whether a mass in that area is 'normal' and thus went months without doing anything about it or telling anyone. To give you a bit of relieve, testicular cancer is the most responsive type of cancer to chemotherapy. It sort of just 'melts away' (my oncologist's terms). Yes, he may only have six months without treatment, but keep your chin up. It's testicular cancer and, with chemo, I believe he will be fine.

[Jens]

Hi Kay.

The best thing you can do for you son is to take Don's and Dadmo's advice.

Get the top experts in on this!

There is overwhelming scientific proof that the real experts have a substantial higher cure rate than the average oncologist, especially with advanced cases.

It's not difficult to administer chemo, but the right mix and dose makes the difference. So you want to have the experts guide you local doctors.
Forget about that your docs may feel offended, if they are any good, they won't be!

Make the call now. Please.

Best wishes
Jens

[lost parent]

Hi everyone,
Its 11:08 pm Australian time we just found out my son has Rhabdomysarcoma
it is in stage 4 it has nothing to do with testicular cancer it is a rare cancer of the muscle .They told us they can not save him so they will try to slow it down but dont know if they can if they can slow it down we mite get another 3 months.This tumor was 68cm 4 days ago and now is 90cm it is out of control
its grown down into the testical and up into the upper body and now up into the chest.This is a rare cancer and very hard to explain to all of yous so if you go to the Rhabdomysarcoma site you will under stand better.I will keep yous up dated and any question i will gladly answer them best i can.
Thanks Kay

[dadmo]

lost partent
Call memorial Sloan Kettering Cancer Center here's the link http://www.mskcc.org/mskcc/html/44.cfm. They are one of the best in the world when it comes to the treatment of cancer. Last year they were rated number one in the U.S. I did a quick search of their site and they have 11 doctors that deal with Rhabdomyosarcoma. I know it's a long trip but they are really only a phone call away. If you have to go to New York you can stay with my wife and I for as long as you need, we are less then an hour from the hospital. My wife, and our support system will take great care of you.

[justinsmom]

Kay, Words are not adequate, We do not understand the evil in this world, our only hope lies in a risen Savior who gives us peace knowing we were created for something better than what this life has to offer. John 3:16 says : "For God so loved the world that He gave his only begotten Son, that whosoever believeth in Him would not perish, but have everlasting life." May I pray for you & your son? For healing if it's God's will? For God's strength to face each day? For wisdom for the doctors involved in your son's care? For God's peace & comfort to surround you? In John 14:27 Jesus says " Peace I leave with you. My peace I give to you; not as the world gives do I give to you. Let not your heart be troubled, neither let it be afraid." May I uphold you in my prayers? (Also, do not hesitate to talk to a doctor about YOU....you may need something to help you sleep at night, Ambien works good and is not addictive. ) God Bless, Lanette ( a praying mom)

[Scott]

Kay, I'm so sorry. Are there plans for surgery or chemotherapy? Are there any clinical trials available?

[lost parent]

Hi everyone,
My son will start chemo Monday .
Dadmo i had a look on the site but i could not find the phone numbers to ring any of those doctors .Could you please find the numbers and names of them and post them so we can ring .Thank you for your kind thoughts and for everyones post this site is keeping me from falling apart at the moment its the only thing that is .The days are getting longer and the nights are worse but now i have you guys it is a great help so thank yous again.
Bye Kay

[dadmo]

Kay:

The link will take you to the department chairman the phone number are at the bottom.

International Patients: From outside the United States, call 1-212-639-4900. Or, to use AT&T Direct Access, first dial the access number for the country you are in, then 888-675-7722. From within the United States, call 212-639-4900 or toll-free 888-675-7722.


http://www.mskcc.org/prg/prg/bios/1.cfm

Bill

[dadmo]

kay:
I just called Dr. Brennan's office and the message said to call back monday after 9am.
I tried the main switchboard but there was no answer, I will continue to call until I get in touch with someone. I think we need to act quickly so I'm just trying to make sure I'm getting you in touch with the right person.
Bill

[lost parent]

Hi DADMO,
I have found the numbers i call over there and get same answer i cannot wait till monday your time because its tuesday our time.And Monday they start treatment.I dont wont to start treatment without advice from your doctors its already been 7 days .His stomach tumor is 38cm long and 24 cms wide he all so has two other tumors just as big one in the back and one in the testical.the rhabdomysarcoma is called Alveolar of the soft tissue if you can get this information to any of your doctors as our ones said they have not seen this sort of tumors grow where there are growing and how fast its growing .So may be your doctors havent and they need to know about this case.Please find away to get this info to them and they can decied if they wont to help or not.Please send private post so i can pass my contact details to you for them.
Thanks Kay

[dadmo]

I think it's a good idea to get the treatment started. Sloan may have a different mix or idea of how to treat your son but if your guys can at least slow it down that will be helpfull. I will continue to call through the weekend, I Know others will read this thread and if they have any way of helping I'm sure they will.

[dadmo]

Kay:
I refined my search a bit and came up with a team (Sloans term) of experts
who deal with Alveolar. Heres the link http://www.mskcc.org/mskcc/html/61946.cfm

[lost parent]

DADMO,
went to the sites but because its the weekend over there i cant get my info to any of them.i need to be already getting treatment with them or be a doctor before a message will be given to them.I have tried every thing .now its 1.46 am and i dont know what to do now i have to go the hospital soon to be with my son so my partner can have a break and we have 7 other children we are trying to look after so once i leave this computer i wont be back until Monday night .Sorry about wording i am so drained now my brain is all over the place.iam going to have a coffee now and i be back.i sent emails to so many people on the sites for Sacomas hoping someone will get this info i can only pray. Thanks Kay

[lost parent]

Hi Justinsmom,
Thank you for your post .
And as for your advice on sleeping thank you but until i have done every thing in my power to save him and he is no longer in pain i will not take any thing to help me sleep .As i need evey minute right now.
Thanks Kay

[Scott]

Kay, I know I would feel the same way if one of my four children needed me. Do take care of yourself, though, as soon as active treatment is underway. You'll be more help if you're not exhausted.

[lost parent]

Hi Scott,
thank you for you post.
But how can i when he cannot?

To all the people who gave me the contacts i have called all but cannot get to speak or get my info to any of them.
thanks Kay

[Scott]

It's completely natural to feel that way. Just remember when you do need a rest that you should not allow yourself to feel guilty about it. You and your family need you not to wear yourself out.

[lost parent]

Hi Mattias,
thank you for your post.
And i know cances hit any age and any one.
This is not my first time dealing with cancer i give you a little back ground on my life.
Age 10 -Lost my mother to cervical cancer she was only 25.(she was 14 when she had me) i have 2 brothers and 3 sisters.
My youngest brother was born in April in May she found out she had cancer she died 6 Dec it took her in 7 months.

My uncle who was 1 year younger than me had a wife with a brain tumor we help her fight it for years they had 4 lovely children she got into her last stages it was hell.My uncle was to care for there children when she died but in oct 2000 he died while she was in hospital 6 months later she died from the tumor.
We have the 3 youngest children with us so our family went from 5 children to 8 and the oldest boy went to his grandmother.

June 2005-just found out my partners father had prostate cancer and we watched him go though all stages and we lost him on the 23 Dec 2005.
It took 6 months to take him.he left it to late.he was 70 and

I am 36 this year

they say what does not kill us makes us stronger but i cannot get any stronger now this cancer with my son will kill me.
And these kids cannot go though this for the 3 rd time.
there ages are 16,15,13,13,11,9,7,7

Thanks Kay

[Scott]

Wow, that's too much for anyone to be asked to bear. I hope you have good support from family, friends, and counselors. Please hang in there, Kay.

[lost parent]

Thanks Scott,
There is more but may be at later date i fill you in that was so hard to post,
Kay

[dadmo]

Kay:
I got your private message. I will get to someone at Sloan and I will get them to you.

If anyone can help here are the Doctors names (all at Sloan)
Paul Meyers 212-639-5952
Leonard Wexler 212-639-7990
Pam Merola 212-639-8392

[lost parent]

Thanks DADMO,
I have to go for now i am starting to fall apart its 3.28 am and kids will be up soon .I have always been the strong one in my family and the one everyone else comes to but now i am just holding me together.I will not log out but just sit back and have some time out .
Kay

[lost parent]

I am sorry everyone,
I need to move this forum to a new one i started in this forum because of what we thought our son had and i should have changed when we found out it was not testicular cancer.What forum should i move to i cant stay under younger guys ?
Kay

[dadmo]

If you can find another forum that is better suited for your sons needs certainly go there, but don't forget us. You're family now.
I got through to a live person the best they could do was to tell me to call 800-525-2225 on moday for a referal. I'm sure if you work with the doctors at Royal Childrens they can get the right people at Sloan. I will keep working on your behalf and the offer to stay here is still open.

[ymno8]

my thoughts and prayers are with you and your family at this difficult time

derek

[lost parent]

Hi everyone,
i am not going to a new site forum i am staying at this one i just have to change from younger guys ,worried about symptoms to a new post in this site as young kids are going to look at my post and what info i need right now they dont need iam sorry how i worded it Kay

[justinsmom]

May I ask your son's name?

[lost parent]

His name is Patrik,he has no c in his name.
are you in the US if yes what time is it there its 7.52 am Australian time.
Kay

[justinsmom]

I don't think you need to worry about starting a new thread...but if you do please post here as to where you started it. I only get on the work computer rarely and may not find where you went. I am praying for your son, your family and you. And God bless you Dadmo for your help to Kay. Lanette

[justinsmom]

Hi Kay, its 12:53 pm I am on the Western side of states. alot of people here are on East side so it is 4:53 pm for them ( i think dadmo ect.)

[justinsmom]

sorry its 3 hours difference east to west. So 3:53 pm Saturday

[dadmo]

7:52 am in Australia is 3:52 in New York. It's Sat. here.

[lost parent]

Thank you Lanette,
i think i will stay here but watch what i post more carefuly.just need to think about it a little more.Kay

[dadmo]

Just post what you feel. You need a safe place to unload your burden and this site works for me.

[lost parent]

Well kids are getting now here goes other day.Kay

[justinsmom]

Kay, I understand totally about you not wanting to sleep. You want to research and do everything in your power to help your son. I commend you for that. I just am concerned about you getting SOME rest ( I speak from personal experience as I could not go to my son's first oncologist appt. as I was hospitalized with sleep deprivation) So just don't let it go that far, for your son's sake. God Bless, Lanette

[lost parent]

I will do what you ask as soon as i know the doctors we are trying get this info to have it and i know we are doing the right treatment.kay

[Scott]

I'll just move this thread from the "Younger Guys" forum to the "Survivors and Partners" forum. A "survivor" is anyone affected by cancer, including parents and other caretakers.

[lost parent]

A big thankyou Scott thats one thing less i need to worrrie about.Kay

[justinsmom]

Kay, my words are so inadequate for you at this difficult time, I know of nothing I can say to ease your pain. My comfort comes from the Lord & it is only in Him that I can truly find rest. I have to go now and just want you to know I will pray for you throughout these days ahead. Where are you in Austrailia? Do you have anyone that can help you? I will try to check back soon-Lanette ><>

[lost parent]

Thank you for your post,i have so many people with me and helping i am blessed but i need help in getting on to the doctors at sloan-kettering and they cannot help in that area.Kay

[carpla]

Kay--I can't even begin to imagine what it must be like to watch your child go through something like this. I have three sons myself and although I have been through cancer twice with my husband, I don't know how in the world I could bear it if it were one of my boys. I will be thinking of you and your family and praying for you during this time--please don't give up hope and more importantly, don't let Patrik give up hope either--it can make a world of difference.

[dadmo]

Kay:
I have the name of the hospital your son is at, that will be helpful. Do you have a doctor that the people in Sloan should be trying to get in contact with. When I did get through the person I spoke with was very helpful and said that Dr. Paul Meyers (212-639-5952) is the correct person to get in contact with at Sloan. maybe the people at Royal Childrens can begin trying to make contact. I know it's the weekend here but these guy are not unreachable to the right people. If your Doctor can give the 800-525-2225 number a call that might get things moving.

[lost parent]

Thank you DADMO,
That info is on its way to Patriks dad now with a print out of the sloan web site it will be there in 40 mins .i spoke to Patriks dad and told him the info is on the way.He said when he gets it he will speak to the doctors and have them contact Dr paul Meyers.Thank you so much.
Kay

[dadmo]

I won't stop pushing. If you can't get through I will go into Sloan and sit in the doctors waiting room until someone sees me.

[lost parent]

Thank you,Kay

[lost parent]

Hi everyone,
just got word our Doctors have the info for Sloan and said thanks to you all,they will speak to them and they told us they work with the sloan group and there doctors do come to Australia and work with them,well i have to go and i dont know when i will get back online as Patriks treatment is going to start tommorrow.They have a plan and a treatment my sister will be online for me and pass on to me any post .
talk to everyone soon.Kay

[dadmo]

Kay:
If you can think of anything your forum family might be able to do just ask. Don't forget to take care of yourself.

[Scott]

Our best wishes for Patrik and for you and your family, Kay. We'll be here both to celebrate good news and to help bear the blows during treatment.

[justinsmom]

Kay, (& her sister) just letting you know I am continuing to keep you all in prayer-how is Patrik handling things? The help that Bill (dadmo) has been able to get you is a blessing. At this point you need to trust the doctors and trust God for the treatment for your son. It should be Monday afternoon for you? So treatment started I believe? Keep us posted if you can...one mom to another-Lanette ><>

[justinsmom]

Just checking in....it's Tuesday for you right? Have you heard anything from Sloan? No need to respond just letting you know you are SO in my thoughts and prayers-Lanette ><>

[dadmo]

I certainly hope her doctors were able to get in touch with Sloan. I'm willing to do what ever is required but if the specialists at her place can't get through you wonder what success I could have.

[justinsmom]

Bill, I really think it's great that you have done all you could to help. The world needs more people like you-that really care....Like I said before we can do research & make choices regarding treatment options (when there are some) but I learned when my dad died of melanoma (age 57) in '96 that there comes a point when you have to trust the wisdom of the doctors and pray and then not look back....or you will loose your mind.........

[dadmo]

Lanette:
Thank you for the kind words. It just so hard sometimes, it never seems like you can do enough. I do stress over the people who visit this site, some peoples stories are so hard I don't know how they can continue to battle against such obsticles and I don't mean just cancer.

[justinsmom]

I know what you mean. That is why I lift these ones up in prayer because though I have never met them, seems like there's always someone worse off than us.... My son Justin's cancer was cured but he still does not have use of his right arm and is wondering if it will ever come back but then I see parents of disabled kids and my heart just goes out to them because now I can better relate......so as in Patrik and his family my heart truly goes out to you and we are thinking of you at this time.........

[Chris'Mom]

Kay, I have just now read your posts...and am praying for you...my heart aches for all you have to go thru...my son Chris is about a year out of being diagnosed....I know as a mom what you must be going thru...please keep us posted....we are all here for you....Mary Ellen

[Pam Archer]

Dear Kay,
I am so sorry to hear that Patrik has been diagnosed with this cancer. My son, Jason, was diagnosed with alveolar rhabdomyosarcoma Stage 4 on 2/6/04. This was about 2 months after he turned 18. He was treated with what is considered standard chemo in the USA for this cancer--Vincristine - Actinomycin D and Cytoxan(Cyclophosphamide). The combination of the 3 chemos is given every 3 weeks and only Vincristine is given on the 2 weeks in between. We also had to give Jason Neupogen injections for 10 days after the 3 drug combination to help his blood counts recover faster. He received radiation for 6 weeks that first summer. Sometimes they use a more aggressive treatment called VACIME to start with. This includes the chemo drugs Vincristine, Adriamycin(Doxorubicin), Cytoxan(cyclophosphamide) alternating every 3 weeks with Ifosfamide and Etoposide. The M stands for Mesna which is always given with Cytoxan to protect the bladder. This cancer is usually very responsive to chemotherapy and after only 2 months of chemotherapy there were no cancer cells in my Jason's bone marrow on 4/9, but by 7/30 it was back in bone marrow. In October, the cancer had spread to his testicles so I posted a few messages here. The people here are wonderful and so very supportive.

I'll be praying for you all. I know how hard it is to go through this. It is so hard to imagine a healthy child suddenly becoming so very sick.

Pam - Jason's mom

[lost parent]

Hi everyone this is Jodi , kays sister. Kay has been at the hospital by patriks side since he was admitted on feb 28, he is not doing well, he has had a dose of chemo but as a result he now has a low blood count and a virus in him. He was given a blood transfusion last nite, he continues to throw up constantly and doctors cant stop this. The tumors are still growing every day, it is now in his lungs and is affecting his breathing. The tumors are so massive there is nowhere for them to go now and are pushing out on his stomach and back making him very uncomfortable. Doctors say they have never seen anything tlike this before this severe, he is at late stage 4 and doctors say he may not live for very long.Bye for now. Jodi

[Scott]

Oh, Jodi and Kay, I'm so sorry. I hope they can make Patrik more comfortable.

[merc]

Hello,

I can't believe I missed this thread.

If you are in Perth, please let me know what hospital/ward you are in.
I am happy do to whatever to make you and your son more comfortable (change of clothing, food, whatever).

Please let me know ASAP.

Email me at merc@mobily.com

Merc.

Hi everyone this is Jodi , kays sister. Kay has been at the hospital by patriks side since he was admitted on feb 28, he is not doing well, he has had a dose of chemo but as a result he now has a low blood count and a virus in him. He was given a blood transfusion last nite, he continues to throw up constantly and doctors cant stop this. The tumors are still growing every day, it is now in his lungs and is affecting his breathing. The tumors are so massive there is nowhere for them to go now and are pushing out on his stomach and back making him very uncomfortable. Doctors say they have never seen anything tlike this before this severe, he is at late stage 4 and doctors say he may not live for very long.Bye for now. Jodi

[Chris'Mom]

Jodi, we are all thinking of you and your family.....Mary Ellen

[Karen]

Jodi and Kay,
My thoughts and prayers are with you that you can find strength to carry this load and that Patrik can be made comfortable and know he's surrounded by your love.
Karen

[jdunn]

Kay and Jodi,
My heart aches for your family. God bless Patrik. It isn't fair what is happening.
You are in my thoughts and prayers.

[Mom]

Kay and Jodi, may God give you the strength to get through this. I am so sorry. Dianne

[Pam Archer]

Dear Kay and Jodi,

I am so sad to hear this news about Patrik. I had so hoped that the first chemo would at least slow the tumors down, possible even make them smaller. This is such an aggressive cancer. The nausea is understandable and the low blood counts. The chemo is so strong. But I sure hope that his counts come up soon so that he can get over the virus and that the tumor begins to respond to the chemo. After the chemo did they give him Neupogen injections to help his counts come back up?

My Jason was in the hospital for 21 days when he was first diagnosed and lost a significant amount of weight because of the nausea. Then with the second chemo he got a C. Difficile (sp) infection in his stomach and had to be admitted again for 4 or 5 days.

You all are in my thoughts and prayers at this difficult time.

Pam - forever Jason's mom
www.caringbridge.org/tn/jasona/

[justinsmom]

To Pam, I am so glad you responded I felt that you could be of some help since this family is going through similar circumstances. Thank you Scott for getting the messsage to Pam. When I first read the diagnosis I recalled the posts on your son and felt you could help ease their burden by reaching out to them. God allows us to go through situations so we can draw alongside others. And to Kay, Patrik, Jodi, and your family our words are inadequate, but our hearts go out to you. If there is anything any of us can do to ease this difficult time, we are there for you. May the arms of Jesus hold you in your pain, we will continue to lift you in our prayers. God Bless, Lanette

[carpla]

Kay and Jodi, my thoughts and prayers are with you and your family.

[lost parent]

hi everyone, this is patriks dad
today, monday 14th march we recieved good news. the tumor in patrik is starting to recede at a great rate. the chemo has obviously worked and he is starting to gain some strength in his legs. On saturday the doctors were advising us that pats time was coming to a close soon so u can imagine the suprise and smiles on their (and mine) faces when they delivered the news.they havent seen a tumor this large in a small boy before let alone seen him still alive therefore this news is fantastic. we should be able to bring him home on friday and if the tumor recedes at this rate they will operate to remove it in 6-8 weeks.(not bad considering they only expected him to live 2 weeks after admitting him) the doctors have been in consultation with sloan however sloan were as dumbfounded as our doctors however YOUR help and SUPPORT has been wonderfull. its nice to know that tis world is full of decent people.
bye for now
Paul Oakes
(initially the tumor was 38cm * 24cm in the torso and 25cm * 17cm in testicles.)

[Scott]

Paul, I'm so glad to read your good news. Thanks so much for taking the time to post it. My continuing best wishes for Patrik and all of his family!

[dadmo]

Paul:
What wonderful, miraculous news. Thank you for sharing it with us.

[Chris'Mom]

Paul, what a miracle, I got goosebumps at my desk reading your post...continued prayers...there are still miracles out there...Mary Ellen

[Mom]

Oh boy, you just made my day. Dianne

[Karen]

WOW!!! Thanks so much for the update and know we are all celebrating the news with you! This proves there's light even at the darkest moments and I can't express how happy I am for Patrik. I keep him in my thoughts as he grows stronger :D :D :D

[jdunn]

Paul,
Oh my gosh, I have tears in my eyes. Prayers indeed are a powerful healer.
Keeping positive thoughts your way.

[dadmo]

When Nancy read that post she cried, I'm not far behind myself.

[justinsmom]

Praising the Lord from Washington State!! I Peter 5:7 "Cast all your cares upon Him for He careth for you." Will continue to pray for wisdom for the doctors in Patrik's continued treatment......God Bless-Lanette

[Don]

So very happy for you and your whole family!!!!! Good news like that is not heard often enough!!!!

[LindaM]

WOW !!!!!!! Tears of Joy for Patrick and his family. I will continue to think about him everyday . Regards, Linda

[Ryan]

Glad to hear the good news! You and your family will be in my thoughts and prayers!

[lost parent]

Hi everyone,
Its been a while i just got home its 8.37 pm Friday i have been away from home 2 weeks now and miss all our kids so much its been so hard being away from home.Patrik over the last 2 weeks has had his kidneys fail and has had to have stints put in both kidneys to the bladder .We almost lost him last Saterday night at 1.00 am in the morning and every thing is going wrong the tumor was pushing every thing to the left and right side of his stomach.and pushing on the stomach its needing more room to grow ,the bowl is twisted and he has thrown up for 16 days strait now they put in a feed tube but he still throws up.Tuesday they told us the tumor is starting to shrink and things where slowly getting better.But Wed night he could not breath he is now on oxegen and now we have a heart team working with the cancer team as the heart is now inlarged and the valve which pushes the blood into the body is nowpushing the blood out and taking the blood back into the heart they dont know why this is happening and are trying to fix the heart as they dont know how much more strain the heart can take.We have had every thing go wrong i dont have time to fill yous in but when i do i will.
Thanks Kay

[Fish]

Kay,

You, Patrick, and all your family remain in my thoughts and prayers.

Jim

[Karen]

Kay,
I can't tell you how sorry I am to hear of Patrik's condition. My prayers are with you, your family and Patrik.

[Scott]

I wish you the strength to carry on at this very difficult time.

[dadmo]

Kay:
I'm sorry.

[Chris'Mom]

Kay, I pray for you to have the strength to sustain yourself as well as your family....God Bless.....Mary Ellen

[jdunn]

Kay,
I will continue to pray for your family.

[Don]

I am truly sorry to hear this news!!! Praying for better news the next time you update.....

[lost parent]

Hi eveyone,
Thank you for all your posts Patrik also has a tumor in his right lung now we are hoping the cheo will kill that one as well.Will keep yous updated .
Thanks Kay

[justinsmom]

Again, you are in my prayers, we don't understand the evil in this world, of which cancer is definitely one of.......of course I pray for healing, but also for freedom from pain, and wisdom for the doctors in Patrik's care. Also that you will rest in the Lord, for He alone offers us a peace beyond any this world can offer.....God Bless, Lanette

[swg03a]

Hola,
I just wanted to let you know that there is still lots of hope! I was diagnosed with Dialated Cardiomyopathy in 2001. Basically my left ventricle started to fail as a pump. So there was great concern with chemo and my heart. The first oncologist i saw would not treat me, because he said the chemo would send me into heart failure. At different times, it was scary and almost died with many trips to the hospital, but i pulled through! If i can help with any questions regarding heart stuff, just let me know. I can actually get technical with the heart problems more than the cancer problems. My thoughts are with your son, and have shed a tear for his return to health!
sincerly,
scott

[Pam Archer]

You all are in my thoughts and prayers. I continue to pray that God would heal Patrik.

Pam - forever Jason's mom

[lost parent]

hi everyone this is patriks dad (again)
well finally we have bought Patrik home. (Tuesday 21st March)
since my last reply things went wrong! Patriks heart was enlarged due to the work it had to do over the last few months and as a result the muscle was basically worn out. He suffered cardiac attacks on Sunday at approx 0200hrs and 2000hrs however he seemed to take it in his stride and on Monday the cardioligists said his heart was starting to shrink to its normal size and his vital signs were improving.Today his signs were great therefore his availability to come home.
Over the last 3 weeks i have been to hell and back and hope to never go there again. Being an ex serviceman (Australian Army) I thought that I could take an awfull lot of strain however even the toughest of us have a sensetive side, especially when it comes to our kids! Kay has been the rock of the family however I have just read all the streams on this forum and realised how stressfull it has been for her. Thankyou for your support to her over the 3 weeks and if I can be of help to anyone in the future I will be more than happy to try.
Sincerely
Paul Oakes.

P.S. I realise that this is just the beggining of a long journey for Patrik. The doctors hope to operate on him in 13 weeks and then complete the chemo and radiation therepy to hopefully eliminate most of the cancer in him. They have advised us that he probably will never be cured however hope is a very strong positive, afterall we would not have come this far without it. No doubt Kay will keep you updated, I think i will go off and have a private cry!

[dadmo]

Paul:
Congratulations on getting Patrik home. I know your focus is on your son but please make sure you and Kay rest while you can.

[Fish]

So glad to hear that Patrik is doing better. You all continue to be in my thoughts and prayers.

Jim

[Karen]

Paul,
Thanks so much for the update and encouraging news!! So glad to hear he came back from the heart problem and is HOME :D Patrik sounds like one tough guy! Your family continues to be in my prayers for strength and healing. Have a good cry, exhale a bit and rest up!
Best wishes,
Karen

[jdunn]

Hi Paul,
Was so glad to hear that Patrik is home. Your family has been on my mind alot. Thoughts & Prayers Daily for the Oakes Family.
Jane

[Chris'Mom]

Great News! Mary Ellen

[Don]

Good news has not come your way for a while.. Hopefully this will be the start of an ongoing trend of continuing good news for your family!!! :)

P.S. I don't think your alone in your private cry!!! Many of us our wiping tears away right now!!!!!!

[lost parent]

Hi everyone ,
Thank you for all your posts.
Patrik is doing ok he loves being home .
Patrik will have cheo on the 28 March and again on the 4 April and again on the 11 of April.He is only 35 kg he lost 1.5 kg in 3 days just cannot put any weight on him .We need his weight up for the cheo hits just dont know how to get weight back on him?I will keep yous posted on how we are doing.
Thanks Kay

[Karen]

Kay,
So glad to hear Patrik is at home and doing OK!! What a tough road he's been on, and you along on the ride. Is there a nutritionist at the hospital that can give you suggestions for hie diet? Hope you've been able to rest and take care of yourself as well. You family continues to be in my prayers.
Karen

[dadmo]

Kay:
Your doing a wonderful job, what a great Mom you are to Patrik. If you get a chance pamper yourself a little you desereve it.

[lost parent]

Hi eveyone,
its wed 29th Patrik went in for cheo yesterday they had to double the cheo as the tumor is not shrinking now he will have cheo again today .He is very sick and will be even sicker after todays hit of cheo.They are hoping his heart does not inlarge again with the cheo.I dont know when he will be home soon i hope well have to go i will keep yous updated.
Thanks Kay

[Eric]

Hi Kay

I wish the best of luck to patrick and my prayers will be for you today.

[LindaM]

I will continue to pray for Patrick and I will be thinking of him every minute of the day until he recovers. As a mother I can only imagine how hard this is on you and your family. You and your family will remain in my thoughts and prayers to give you the strength to get thru this . Regards, Linda

[Fish]

Kay:

I hope things go well.

You are all in my thoughts and prayers.

Jim

[Karen]

Kay,
Appears as though you didn't have much time to catch your breath. My prayers and thoughts continue to be with Patrik and you. Thanks so much for keeping us posted at such a difficult time.

[Chris'Mom]

Kay, you are all in my thoughts and prayers...Mary Ellen

[justinsmom]

Thanks so much for trying to keep us posted on Patrik's treatment, I know that's difficult with being consumed with his illness....being 1/2 way around the world yet keeping you & your family in thought and prayer-May the good Lord give you strength to face whatever tomorrow holds-
God Bless-Lanette ><>

[lost parent]

Hi everyone,
Patrik is home now the cheo is making him so sick his brothers and sisters are doing ok .
They love having him home Patrik went last Saterday and watched his older brother play Football and on Sunday got to watch his under 14 team play all his team mates came over to say hi.He was so happy to see them and hopes to watch more games but not this weekend as his white blood count is very low.We have our good days and bad days but we take every day as it comes well have to go for now but we will chat soon.
Thanks Kay

[dadmo]

It good to hear that patrik is able to get out and around a bit. You and your family are in a lot of thoughts and prayers. Stay strong. If anyone on this forum can help just let us know.

[Scott]

Enjoy the good days especially, Kay, and feel free to complain about the bad ones.

[lost parent]

To Scott and dadmo and everyone
Thank you for being there i know my worst days are to come but with the help of my partner, children,family ,friends and all you guys ,i can get though this .Patrik is having a ok day today its Sat 1st April he is still very weak and sick but still has a smile on his face .Well have to go Patrik needs me .
Thanks Kay

[Scott]

I hope Patrik knows that there are a lot of people out here thinking about him and his family!

[lost parent]

Hi eveyone,
Patrik had cheo yesterday 4/4/06 he is doing ok.His cheo drugs are Vincristine,Actinomycin,cyclophosphamide,ifosfamid e and etoposide he has weekly cheo.The doctors said the tumors are not shrinking now they hoped with double hits last week it would start to shrink again but no it has not.They will keep to the 13 week cheo plan and they said they mite try to take out the tumor in his testical but thats a big mite.They cannot take out the other larger tumor he has .He has three more small tumors in his the lung and two in the chest glands that we know of.We know the out come but we will keep fighting this battle with all we have.We have not told Patrik all the details or the other kids but they know how sick he is just not how much time we have.Well better go and thank yous for every thing Kay

[dadmo]

Kay:
I think of you every day. Stay strong. Hang on to hope it is a powerful force.

[Karen]

Kay,
Patrik, you, and your family remain in my thoughts and prayers.

[jdunn]

Kay,
Stay strong. You have alot of people who are pulling for Patrik. The power of prayer is a powerful thing. My thoughts are with you daily.

[lost parent]

Hi everyone,
Its 9.00am Thursday Paul had to take Patrik back to the childrens hospital last night temp was 39.2 he has a infection some where.He is going to have a blood transfustion today,all his blood counts a low and his hands are cold the blood is not getting around the body .For the last year his older sister Jade age 15 has been unwell like Patrik we thought it was a change in her body as she is in her teens but she has been unwell like Patrik.For 4 years the doctors where treating Patrik for sinus infections now we know it was not that as this cancer was mistaken for that.The doctor sent us for a CT scan yesterday on Jade but the Radiology service would not do one Paul got in a big fight with them he explained about Patrik and if 4 years ago we had a full body CT scan we mite have found it at a smaller stage.Jades doctor called the radiology service and he got in a big fight to but still no scan.We now are going to a diffrent radiology service today,and i hope they will do it the chances are rare that she will have the same cancer but its not uncome for a brother or sister to have a diffrent cancer when its to do with the makeup of genetics.But we need this for the peace of mind we never thought any of our children would get cancer but one did and so its not inpossible for his sister to have it.We just wont to be sure Jades ok and that we dont miss any thing so i keep yous updated when we know some thing.
Thanks Kay

[dadmo]

Kay:
I'm sorry to hear about this new complication. I'm pulling for you and yours.

[huckchef]

i said a special prayer for you guys! continue the strength that you have shown. My thoughts and prayers, brian!

[Karen]

Kay,
So sorry to hear you have other worries at this time. I hope that Jade is just adjusting to teenage years and the stress of what's going on with Patrik. Please keep us posted if you are able.

[jdunn]

Kay,
Your family has had enough pain.
I pray for you all....

[justinsmom]

I too will pray on this situation. Hopefully the stress of all this is what is causing Jade's illness, I know stress can play a major factor with the body's immune system. Yet if she's been unwell for the past year that doesn't make sense, I don't understand why they won't do the scan? May the Lord give you all strength to face each moment and I will pray that they will do the scan soon.....Isaiah 43:2 "When you go through deep waters and great trouble, I will be with you...." With the love of Christ, Lanette

[TOP]

Dear Lost parent, I'll offer my petitions and prayers in mass on palm sunday and easter, may St. Peregrine (patron St. of cancer patients) intercede and petition our Lord. Tim

[lost parent]

Hi everyone
Patrik came home on easter sunday after having 5 days of Ifosamide & Etoposide. He seemed to take the chemo well as there was no side effects that the hospital could detect. Unfortunately the tumor has not shrunk since the first course 4 weeks ago and pat is getting weeker by the day. The Oncologists have stated that 3 months is a reasonable time for life expectancy with Pat however I keep stating that as long as he is still with us then there is always hope.
He now has a week off and we do it all again in a weeks time. Hope u r all well, until next time
Paul Oakes.

[sylvyrwulf]

lost parent
i'm sorry to hear about that. it toke me weeks before i got my mom and my girl to belive that there was some thing wrong and there was like 2 weeks that i belived that they wasnt beliveing me till one day i went to get up and i couldnt move my legs and we found out that i had tc and i went thought the surgey and chemo and i tell you now some of the young bogs out there that are scary to tell their parents. they thing that they wont belive them all yall can do right now is stay by his side and help him


earl

[Karen]

Paul,
Glad you had Patrik home for Easter and he did not have problem with the chemo. Saddened that the tumor did not respond. Never, ever, give up hope and keep him surrounded by love. I continue to pray for Patrik and your family.

[Scott]

I'm really glad you posted. I was thinking about your family on Easter.

[justinsmom]

I'm so sorry that Patrik's prognosis is not good, I know there is nothing I can say to alleviate your burden...As a born again Christian all I can do is offer hope through my risen Savior, Jesus Christ. With the observance of His resurrection just yesterday, it seems appropriate that I direct you and your son into the Bible, God's word, that offers the promise of eternal life beyond this one in His kingdom where there is NO suffering and pain.......... Without "preaching" to you on this forum, I really would love to share with you how to make the CHOICE where you will know beyond all doubt that you and Patrik will see each other again in Heaven. I apologize to anyone I may have offended by using this forum to share my beliefs but God has layed it on my heart to reach out to this hurting family. Please e-mail me Paul, Kay and anyone if you want to know more about the choice God gives each of us. God Bless you in the days ahead.....I WILL be praying for all of you-Lanette

[dadmo]

Lanette:
I am not a religious person and found no offense in your words. At times like these it is important to find a way to gather your strength and be able to comfort yourself and your family. If belief in a higher power can give a person solace what right would I have to take that away? I struggle daily to calm my inner restlessness, my way may not be your way but that doesn’t make either path to inner peace less valuable.

[justinsmom]

Thankyou Dadmo, did you mean to say "my way may NOT be your way"?.....I didn't want to offend anyone but yet feel so strongly about my relationship with Jesus that I felt I have to reach out to a family hurting so deeply, God gave the 2 thieves on the crosses to his left and right a gift more profound than anyone has ever given, His life in exchange for their sins...but the 2nd gift he gave them and ALL of us was choice....He did not make us puppets, forced to love Him and accept His gift, but gave us free will and the choice of whether to accept that gift, and He is the ONLY thing that got me through a parent's dreaded nightmare, and delivered me from fear and anxiety so deep that it almost destroyed me (literally), so thank you for letting me share.....

[jdunn]

Lanette,
I will have to admit after my son's diagnosis last year my husband and I were devastated. After his surgery we were told that his tumor markers hadn't dropped but were rising. Without the knowledge that I have today, (thanks to this site) we were left without answers. My only comfort was knowing that God would take care of him and that he would heal him. I'm now a firm believer in prayer and the power of Jesus. I will be forever greatful.
I know this isn't everybody's belief and I respect that. It was my faith that got me through the tough times.I would only hope that everybody has a higher power to turn to in times of need. We all need peace.

[Scott]

Kay and Paul, I just wondered how you all are doing.

[lost parent]

Hi everyone,
There is still know change in the size of Pats tumor and the other small ones are still there to ,we just have to keep to our 13 week plan of cheo.If still know change in size then the doctors are not sure what to do and dont know if they can do any thing at all,so we will just have to wait and see.The right kidney is not working and the left is just working,his liver is starting to play up now its over worked ,but Pats still strong in the mind.We are still fighting and will never give up hope and thats all we can do for now.
Thanks Kay

[Scott]

Just know that we think of you regularly.

[justinsmom]

Praying for your family and Patrik at this difficult, confusing time....Matthew 11:28 "Come unto me all who are weary and I will give you rest" Love, Lanette ><>

[lost parent]

Hi everyone,
I have been in hospital with Pat for the last 6 days as he had a high temp but he is ok now.
We seen Dr Ashley yesterday (Wed) and in 5 weeks we will know if they will do other 13 week cheo plan again,if the cheo is not working at the end of the next 5 weeks Pat will not have any more cheo , we will be taking Pat on holidays and letting him in joy what time he has left with us.
Thanks Kay

[Don]

I'm not a real religous person but I pray for your son and family everyday!!!!! DON

[jdunn]

Kay,

Please know that you, Patrik and his family are in my daily prayers always.

[Karen]

Kay and Paul,
My prayers are with you and your family, especially Patrik. I hope the concerns with Jade's health has turned out OK.

[justinsmom]

Does anyone have an update on Patrik and his family, they have been on my heart alot, it has been over a month since we heard any news.....Lanette ><>

[dadmo]

I received a private message about 3 weeks ago indicating that they were planning on bring Patrik to the US for a vacation. Since then nothing.

[justinsmom]

Thanks Dadmo, I will keep checking in - I'm glad we could be there for them for a time and only hope Patrik has some quality time with his family- Take care, God Bless, Lanette ><>

[lost parent]

Hi everyone
sorry i havent posted for a while but with work and kids, time just seems to dissapear. Patrik has finished his 13 week program and now we wait for the final scans. He has defied the 3 month life expectancy and i think he is doing well on the outside. He is walking by himself and the old Patrik is back at times. All we know since talking last is:
1. the tumour in his testicle has shrunk substantially.
2. the tumour in his stomach has shrunk enough to now detect 2 other tumours in the lymph glands on the left & right side of the chest.
3. this leads the oncs to believe it has progressed into the blood stream.
4. the oncs think that they may not be able to remove the tumour from the stomach as it is too close to major blood vessels and orgins.

when the final ct scans and all the other scans are conducted we will know more. Kay has been staying in the RCH with Patrik so that would be why there has been no new posts, however we r thinking of bringing the whole family to the U.S. if the oncs allow it. we will have to wait for the final results before we can do anything.
best wishes to all of u
Paul Oakes.

p.s. Patrik lost a friend in hosp today, a young boy (5yo) in terrible pain with tumours. it has once again hit home how devastating this thing called cancer is. the sooner govts start spending more money on research and less on politicians our kids would be better off!

[amorgan74]

There are a lot of us here thinking of your family and we are glad you posted to let us know how it's going. April :)

[Karen]

Thanks for the update Paul. Continued prayers for Patrik and family.

[justinsmom]

Just saw your post and am glad for the update-so good to hear Patrik can move about-will keep praying Patrik's pain is minimal and definately for all the family-God Bless, Lanette ><>

[lost parent]

Hi everyone
we have now had meetings with the head of the cancer ward and the leading surgeon at rch but had somewhat conflicting reports.
The oncs say that they want the tumour removed from pelvic area and down but they cant touch the rest as it is wrapped around the main blood vessels running thru the trunk. a cure may be possible but they need to reconsider a new chemo regime with different drugs to see if the tumour will shrink any more.with treatment they believe patrik will survive up to 2 years.
The surgeon stated they will only remove the tumour in the testicle as this cancer is not currently cureable and due to this they do not want to put patrik thru any major evasive surgery. they will not touch the tumour above the testicle as they see that there is no point.
Kay and I feel that we r back to square 1 and thank god patrik refuses to give up as we feel that the oncs and sugeons have.

what do u guys think as im sure u have had just as much frustrations with ur oncs as we r now having.

Patriks op is on 12th July at around 1330hrs Australian time.

sincerely
paul Oakes

[Hopeful]

hi.

I've been following the posts and my heart goes out to you and your family. Your family is an amazing group of people.

Have you ever heard of a procedure called Cyberknife? It's a direct beam of radiation used to kill the tumor only and not any cells. You may want to to look into it and see if it could do anything to your son's tumors. My husband had it done on a 5 inch tumor in his lung and 6 small tumors in his brain. They all became dead masses and didn't start growing again. I know other people that have used it and it's been successful.

It's just an idea. If this procedure can help shrink the tumors, the the other chemo and radiation can concentrate on the other stuff.

patti

[lost parent]

hi everybody
last wednesday Patrik had the tumour in his right testicle removed. it was approx 20cm long x 12cm thick. he is still a bit sore however they let him come home on saturday as long as he takes it easy. on wed arvo the oncs sat down and told us that they have been a bit contradictory on his future due to the size of the tumours in pats body. they dont know which way to go until the removed tumour is tested so once again we have to wait until the head onc returns week after next. i hate waiting!
patrik is doing well and is slowly starting to come to terms with the tumour removal, he can finally wear jocks comfortably again! i will keep u all updated as soon as we hear from the proffessor.

sincerely
Paul Oakes.

[Karen]

Paul,
Thanks for the update on Patrik. Glad he's resting up at home and minus one big tumor! I hope his spirits are still strong and that the oncologists can come up with a path forward for you. I don't know if you were able to follow up on Patti's advice to look atthe Cynerknife procedure. It is done in the hospital we use and is an impressive procudure. Take care and best wishes to Patrik and family.
Karen

[Scott]

it was approx 20cm long x 12cm thick.Wow, Patrik must be awfully happy to have that gone! Best wishes to you all.

[lost parent]

Hi everyone,
We just found out that the Tumor that was removed,still has active cells.
We dont know what happens now we are to see Prof Ashley on Wed 26 july we will keep yous posted.thanks Kay

[dadmo]

Kay:
Patrik will be in my thoughts. Good luck on the 26th.

[jdunn]

Kay,
Thinking of you, Patrik and the rest of your family this week.....
prayers to you all.

[justinsmom]

Kay, Any news yet? I've been thinking of you all and just wanted to let you know that-God Bless, Lanette ><>

[Don]

Was just curious if you have any news from your last appiontment on the 26th.. Best wishes to your family Paul!!!!!!!

[dadmo]

I don't think this situation is far from any of our hearts.

[lost parent]

Hi everyone
The meeting on 26th was a mixed one. The oncs wish to proceed with more chemo and after another 4 week intensive treatment the surgeons want to operate on the trunk to debulk whats left of the tumours. The tumour in his left side has shrunk to 3.6cm*6.5cm.The one on the right is 11*7cm. we r a bit worried as the surgeons stated that the trunk debulking was far to dangerous however now they want to give it a go. we have not yet met with the surgeons but when we do some hard questions will be asked. Patrik is worried as well because the other day after the meeting with the oncs he stated that he wanted to organise his funeral if anything went wrong. A very big statement from an extremely strong young boy. I went for a further meeting with the oncs last friday and stated my concerns over quality vs quantity of life.They still believe they can now stabilise him for some years if all goes well however my concerns over surgery could not be answered. I am extremely upset at the moment just typing this so I will try and complete some more later.
Paul Oakes

[dadmo]

Paul/Kay:
I wish I had words that could comfort you both at such a difficult time. Just know you are in my heart.

[Fish]

Your son is an amazing young man. I'm praying that they can stabilize him and give him some quality time.

[Karen]

Patrik's strength is amazing. I can't imagine what you all must be going through. I pray that you keep hopeful and Patrik is comfortable and surrounded by love. Patrik is in my prayers and thoughts, as are you and Kay.

[jdunn]

Oh my heart aches for you all. I pray for Patrik daily. I pray for the surgeons to give Patrik what he so deserves...A long, happy life! I pray for you as parents to keep strong.

[Joe's Mom]

I am praying for you and Patrik during this most difficult time.

[Mom]

If they truly felt they could stabilize him and give him some quality years, I'd give it a go. If they are experimenting on him then that is a different story. It seems like these docs really want to save him. Maybe our prayers will give these docs the skill and Patrik, you and Kay the strength. We so much want a miracle. Dianne

[justinsmom]

Dear Paul and Kay, As the others have stated-we all think of Patrik and you guys alot-you are never far from our thoughts and prayers....Even though Patrik's cancer has turned out to not be TC, I feel God led you here to get some support and maybe to teach US something in the process-Our mortality is something most people don't want to deal with (although no one stays on this earth forever) and the fact that someone as young as Patrik is forced to deal with it could be a good thing- he can talk to his family about his wishes, and I pray that you all would take the time to listen to him and search out what God's Word has to say about the peace He can give you at this time-God alone knows ALL our tomorrows so I pray that He would grant the Dr's wisdom for Patrik's treatment and not put him or your family through any unneccessary procedures but yet allow you all to trust Patrik's days to Him and give you peace about any medical decisions you have to make....please e-mail me if you want -God Bless-Lanette ><>

[dadmo]

Paul/Kay
If there is anything we can do or help with please feel free to ask. Are your doctors still in contact with Sloan, can we help with anything on that side, really I mean anything. Would the children like another load of toys? I'm sure they have worn out the first bunch.

[justinsmom]

Dadmo-did I miss something-I don't follow things as closely as I once did-but isn't Patrik & his family still in Austrailia? Did you send things to them? And if there's anything you think of to help I'd sure like to contribute-Lanette ><>

[dadmo]

Lanette:
In the dark of night a package was sent to Australia. You didn't miss anything I guess I was busy at the time and forgot to mention it. But Kay and Paul know that it is from their tc forum family and little bits of love from each of us was included. I didn't actually hear it Lanette but I know a prayer was in there from you.

[Scott]

It's so hard to know just what to say. I'm so sorry that you all are suffering, Patrik especially.

[justinsmom]

Dadmo, yes I do hold them in my prayers and I guess that is the best gift I can offer them....isn't it amazing that God keeps all our prayers? Sometimes that is all we can offer those who are hurting-God Bless-Lanette ><>

[Ras Joe]

Patrik and his whole family have been and will continue to be in my prayers. Let him know he is one bad*ss little man for fighting like he has and he has a big fan across the world, in me, who looks at his strength for inspiriation in my recent hard times-- he is helping many by fighting like he has/does even though he may not know it. Thanks buddy.

[Don]

Your son and family are in our thoughts and prayers daily !!!!! Your journey has been truly inspirational to us all and shows true strength,courage, and love... Please let us know if there is anything we can do!!!!!

[justinsmom]

Just wondering if anyone had an update on Patrik's progress.....Lanette ><>

[dadmo]

Lanette ><>
Sorry, I haven’t heard anything in quite awhile.

[lost parent]

Hi everyone

Patrik is now half way thru another chemo program which consists of Vincristine and irontecan (sry if i mispelt that one!) every week day for 4 weeks. He has his good and bad days but the diaharea is the worst. For the first two weeks he was constantly "firing" from both ends which made him dangerously dehidrated. the vommiting has stopped but the diaharea is still persisting. He lost 2 kilos which was depressing considering it took us nearly 10 weeks to put those 2 kilos on him. The pain at times is unbearable in his left side however he is still fighting as best he can. We have a meeting with the surgeons on Tuesday the 22nd Aug so after they explain themselves I will update u with more. I am quite moved when I read the posts on the site, and yes lannette ther was a prayer in the box, the thing nearly jumped out and smacked me in the mouth!!! :) Best wishes to all of u

Sincerely
Paul Oakes.

[Karen]

Thank you for the update. He's am amazing young man who exemplifies courage and strength. I hope that once the chemo is through his pain is eased. As always, Patrik and family are in my prayers.

[Don]

Thanks for keeping us posted Paul!!!!! Hopefully the meeting with the surgeons will go well!!!!!

[lost parent]

gday evryone
kay & i spent 6 hrs in hospital today and had our questions answerd to a degree. the reason for surgery is that they believe the chemo is now inafective and the bloody tumour will regrow, when it does it will be quicker than before and will take him from us suddenly. there is a small window of opportunity and they believe it must be done soon.his chance of survival is not good without surgery and yes it is dangerous and evasive. the surgeons can not guarantee success however they believe they can prolong his life if the operation goes well. they stated that he can die on the table and the other risks are damaged bowel and bleeding into his stomach but that is a risk they must take for him to survive otherwise christmas is his only expectancy. he will have the 3 top surgeons on his case during the 6th September and it is expected tp go for 6-10hours. he is a fighter so i hope this will help him thru the procedure. Hope is the only thing i have left so i am riding on this thru the next 3 weeks. thanks for the support and prayers even though we are not practising christians we do appreciate the extended family we have aquired.

bye for now
Paul Oakes

[Rory (UAE)]

Paul and Kay, I have only just joined this site today and could not believe what Patrik and you have been through! I can't say anymore than I hope that everything goes well on 6th Sep. A work mate's wife was diagnosed with cancer 6 weeks ago and as they could not find the primary site they could not treat it. 4 weeks ago she was given two weeks to live, she is still with us and they have now found the primary site (breast) and she is improving everyday. Remember there is always hope, easy to say I know but Patrik sounds like an amazing boy/man and very strong.

I have everything crossed for you all.

[dadmo]

Paul/Kay
Pandora, the first mortal women, received from Zeus a box that she was forbidden to open. The box contained all human blessings and all human curses. Temptation overcame restraint, and Pandora opened it. In a moment, all the curses were released into the world, and all the blessings escaped and were lost - except one:
hope.
Without hope, mortals could not endure.

[Fish]

You will all be in my thoughts and prayers as you face the days ahead.

Hope is indeed a powerful thing.

[Scott]

Paul, we'll all be thinking of Patrik and family on September 6, especially.

[dadmo]

Kay/Paul
I just sent your information to the Australian Make a Wish Foundation. I don't know if they can do anything to comfort Patrik in the next few days but I thought it was worth a try. I know it was forward of me and I'm sorry if it's something you don't want. I just didn't know what else to do.

[Joe's Mom]

I'm at a loss for words ... but, please know that you and Patrik are in my thoughts and prayers. Nancy

[Lori]

Hope is very powerful - embrace it with all you have. My thoughts are with you and your family!

[Ras Joe]

Patrik,
You are as tough as any man could ever hope to be. You show us all how to be strong and deal with the problems that we are faced with. I wish I had half of your courage. You and your family will always be in my prayers. Joe

[dadmo]

Kay:
I received an email this morning from a Ms. Chelsea Clampit of the Make a Wish Foundation. She wanted me to inform you that they will be in contact. Hopefully they can make the next few weeks a bit less stressful.

If you should need to get in contact with Ms. Clampit here is her information

Chelsea Clampit
Wish Services Administration & Wish Box Co-Ordinator

Make-A-Wish Foundation(r) Australia National Office
383 Swan Street/PO Box 5006
BURNLEY VIC 3121
Tel: 03 9426 0728
Fax: 03 9421 5870
Mob: 0413 251 602
cclampit@makeawish.org.au
www.makeawish.org.au

Wishing you and yours nothing but the best
Bill Moses
(dadmo)

[lost parent]

Thanks Dadmo
Patrik has already applied to the make a wish people and we r waiting for an approval. his wish was to go to disneyland an CA so hopefully he can go. the oncs stopped the chemo last week when he still has a week to go. i believe it was due to the chemo not working however only scans can show us. the oncs said it was so he could rest up for the operation, however they had already stated that he could have the chemo up to 2 days before and it wouldnt affect his chances. we keep getting mixed messages from the oncs however we will have to wait. thanks again and best wishes
paul oakes

[dadmo]

This past Sunday a group of bike riders, led by Scott (the tc forum admin) rode 70 miles. My wife and I dedicated the ride to Patrik.

[Scott]

It was great to ride with Bill and Nancy. You'll find a photo taken at the end of our 70 miles at this link (http://home.comcast.net/~scottjoy/). I think we look pretty good for having just been drenched; our last four miles were in heavy rain. That minor suffering was trivial compared with dealing with cancer, and we were all glad to be out on the road, enjoying the ocean view and riding in honor and memory of friends and family affected by the disease.

[lost parent]

Hi everyone,
Patrik had his ct scans on Friday 1st Sep,we dont know the results yet.
I would like to thank everyone for all there posts and a big thank you to Dadmo and his wife ,for dedicating the bike ride to Patrik.THANK YOU.
I dont post any more as i am finding life realy hard to get though each day,and it takes alot just to get up each day and deal with life.But i do read this site each day and i think of yous all,i smile with every post i read and cry . 2 days to go for Pats big op i will be in hospital with him until the 15 Sep,i cant wait to read all post when i get back.Thanks Kay

[Joe's Mom]

Kay - I will be thinking and praying for Patrik, you and your family. Joe's Mom - Nancy

[dadmo]

Kay:
I am not the praying type but on the 6th I will pray. I promise I will give it everything I've got.

[Eric]

I don't put a lot of comments on this thread but i read it and i think about patrick every day and wishing the best for him. I will keep my fingers crossed for the operation. All the best of luck kay, there is also people in canada praying for you.

[Karen]

Kay and Paul,
My heart and hopes are with you and Patrik on the 6th, and you are always in my prayers.

[Mom]

Kay, I have tried three times to post something here but nothing I can say seems adequate enough. Please know that I will be thinking and praying for you, Patrik and your family tomorrow and the days ahead. You and Paul need to be strong for Patrik and your other children. Dianne

[Fish]

All my hopes and prayers are with you this week.

[Lori]

My thoughts and prayers are with you this week.

[QuantumSheep]

Kay,

I'm not sure if you will read this anytime soon but I wanted to add my voice to those that are wishing you well and you can be certain that I will be praying for you and Patrik as well. Today will probably be very difficult for you as "the waiting is the hardest part" but I have faith that soon things will finally begin to change for the better. You have been through hell but I am now visualizing you and your family on the road back. You are amazing people, and I don't know how these challenges and this heartbreak fits into the general scheme of life but maybe, just maybe it will bring you even closer together and make you cherish life even more once Patrik comes out of all of this.

Dare to hope. Miracles happen every day.
My deepest and most profound thoughts of joy and well-being go out to you this week and beyond.

[dadmo]

Because of the number of time zones Patrik is probably being operated on now. If anyone has any positive karma or prayers this would be the time. Thanks everyone.

[Karen]

As I tucked my healthy daughter into bed tonight I can't imagine the emotions Kay and Paul are dealing with. Prayers, hope and miracles for you, sweet Patrik.....you are very loved.

[Lori]

No doubt our thoughts and prayers are with you

[Scott]

I've been thinking about you all and hoping for the best.

[jdunn]

Keeping only the best thoughts and continued prayers for Patrik and your family.

[Mustaine]

Maybe i was a quite selfish with my posture last weeks, but here`s my thoughts and prayers for someone with courage to face this kind of problem.
You and your son will be in my mind for the next times, i hope you can find some piece. Take some rest, please.
You can be sure, im learning a lot with you...

- Marcelo

[dadmo]

Marcelo:
Yes Patrik is an amazing young man who we can all learn from, but you weren't selfish. You have every right to be mad as hell, you were delt a rotten hand, but you too have the courage to win and move on.

[lost parent]

The 6th of September was the hardest day that Kay & I have ever endured but it is finally over. We arrived at the hospital at 0930hrs and proceeded with blood tests etc for the op. After everything was done he was admitted into surgery at 1.30pm. At 7.30pm Patriks surgeons had succesfully removed him from the cancer in his trunk but not without its complications. The amount of tumour removed was approx 20cm in 4 spots, not 2 as previously thought, and his right auroter(prob mispelt!) was removed from the Right kidney after tests showed it was full of cancer. He was able to keep his kidney as it showed neg to any abnormal cells. They had to move his kidneys closer together and sewed the right to the left so as the urine would now use the left auroter.We were able to see him at 09.30pm however things started to go wrong in the recovery room. At midnight I left with our eldest for home and Kay stayed while they were starting to transfer Pat to a ward however they were pumping fluid into him but no urine was discharching thru the kathida(prob mispelt!).At 3.00am his vitals started to decline rapidly and he was rushed back into surgery to try and save him. Kay called me at 3.30am to tell me what was going on however they indicated to her 45min max to fix the problem, at 5.15am she called me to come back to the hosp as Patrik was still in surgery and no one would tell her what was going on! I arrived at 6.10am to find that once again he had pulled thru and was finally stable back in recovery. The staff indicated he was in serious trouble but the original surgeons came back to the hosp to save him. Kay said they started to panic and were in such a rush to get him into surgery they wouldnt let her go into the "sleeping room" with Pat as would normally occur. He was released from recovery at 0930hrs today and is finally, with Kay, trying to get some sleep. Kay took some pics while in there so if i can sort out how to put them on the forum for u i will. Best wishes and thankyou for all those prayers.
Paul Oakes

[Karen]

Paul,
Thanks you so much for taking the time to post...we have been on pins and needles waitng for good news. Patrik's one hell of a fighter!!!!! I pray for a smooth recovery from surgery and hope you can all rest a bit easier today.

[Ras Joe]

I am so happy that Patrik made it thru the operation and made it into recovery where he can finally get some much deserved rest. He is absolutely amazing-- a world champion bare knuckles fighter is a ***** cat compared Patrik! I would love to see some pictures-- show some people at the hospital what a real bad *ss looks like. You are all in my thoughts and prayers and it is good to know how you are all doing. Thanks for keeping us updated.

[dadmo]

Paul:
Thanks for posting. At least that's done. Give Patrik and Kay a kiss for me. I hope now you can really begin to plan that trip to NY. Several people here would love to meet with you and the family. Hopefully now some happiness can begin to come back into your lives.

[Lori]

Paul, thank you for posting! So happy to hear Patrik is through with the surgery and doing well!

[Fish]

I'm so glad Patrik made it through the surgery. I hope and pray things will go smoothly from here on. You really do have an amazing son!

Best wishes.

[Mom]

One step at a time. It seems that Patrik has a group praying for his life and another group fighting for his life, let's hope the two create a miracle.

[justinsmom]

Kay, Paul, Patrik and family,
I too, have been at a loss for comforting words to send your way at this difficult time. Prayers for a peace that surpasses anything this world has to offer are at the top of my list for you and your family. I most certainly pray for a miraculous healing, but if that is not God's will, I pray for your trust in Him to provide comfort and His strong arms to surround you in your time of uncertainty. God Bless, Lanette ><>
John 3:16, Romans 10:9 & 13

[Don]

Patrik is a truly amazing young man.. I wish there was something we could do--if there is please say the word!!!!!

[QuantumSheep]

What an incredible, brave and strong young man -- ! A true fighter. And what a wonderful family he has as well -- I will continue to send thoughts of love, healing and peace your way across the (many) miles -- thanks for the great (albeit mentally & emotionally draining) news ... !

[Davie]

Paul,

What can I say, you have been through the most traumatic times imaginable, but your son, Patrik, is a true fighter. I was almost scared to read your post, but was thrilled to hear that Patrik came through the surgery.

Keep on fighting and I know Patrik will pull through this. You have all the support of everyone on this site.

Davie

[Sans rt1]

As a father, I have had tears in my eyes many times reading the posts in this string. Patrik is a very brave boy - an inspiration to us all. Kay and Paul, your strength through all of this has been amazing. Thank you for sharing it with us. You have people from all of the world thinking of you and praying for Patrik and your family. I will continue to pray for you and for miracles.

[lost parent]

hi everyone
Patrik is doing well. he has had some pain relief removed and has actually hopped out of bed,tubes and all! he is determined to getout of the hospital and come home which at the moment we dont have a date. he still has a kathida,kidney tube and stomach tube. the kidney tube we think is to stay in for up to 8 weeks. the stomach tube will be removed when his stomach and bowel start working and the kathida is in for up to 6 days. Kay is in there with him all the time, what a woman! i am very proud of both of them.
any thats all i can tell u at this time, i will keep u all updated
sincerely
paul oakes

[Fish]

Paul:

Thanks for the update. I think you are all amazing. It's great to hear how well Patrik is doing. You all continue to be in my thoughts and prayers.

[Lori]

Paul, thank you for the update. Your whole family is amazing! My best to Patrik and you continue to be in my thoughts and prayers.

[Joe's Mom]

Thanks for the update. I think of Patrik and your family often. I continue to pray for all of you. Nancy

[Karen]

Paul,
Thanks for the update! I am in awe of Patrik's determination and can't tell you how happy I am that he is feeling better!

[Scott]

It's good to hear from you. Keep it up, Patrik. We're all rooting for you.

[amorgan74]

Good to hear Paul and I sincerely hope he continues to get better. April

[lost parent]

Hi everyone,
Patrik went back for other op on Thur 14 Sep as one of his stents fell into his bladder.He came though this one ok,i came home Friday as i needed to see the other children,Paul stayed with Pat, today is his 14th birthday he did not make it home for it so we will have his party on the 23 Sep,he should be home then.Our onc wont Pat to start chemo and radiation on the 25th Sep,he is to have chemo everyday and Radiation everyday for 5 to 6 weeks they say he needs it ASAP.Radiation is to be his lungs,abdomen and his pelvis.We cannot get to speak with anyone until Wed 20th Sep to get any answers on why such a intence treatment.Pat will come home with kidney drain bag and will be feed by tube again as his weight is only 36.5 Kg he was 40Kg 2 weeks ago.We are not sure when we will get to go to disney land,but when we do we would love to meet up with yous all,we will post the dates when we know,iam hoping to get the children to a wrestling match if we can ,i dont know where one will be or how to get tickets so if any of yous know, when i have the dates could yous please let us know.well i have to go as iam going in to stay with Patrik again.Thanks Kay

[kmom49]

Hi Kay and family

I don't usually post on the forum but I have been following your posts and always check to see if you have updated everyone. My prayers are also with you and I think of Patrick every day. You have so much support here. It's wonderful isn't it, to be able to have this site to "talk" to so many, many people who care deeply for anyone going through such a hard time. My son was 25 when he was diagnosed. He's now 28 and healthy and I thank God every day. My heart aches for the pain your family is struggling through and I will continue to pray for Patrick and your family. God Bless!!!

K

[TimsWife]

Please tell your son Happy Birthday for us and are thoughts and prayers are with you all.
Kelly & TIm

[Lori]

Kay, please tell Patrik happy birthday and I pray for him and your family everyday!

[Joe's Mom]

Wishing Patrik a Happy Birthday 14th Birthday. Praying for all of you. Nancy

[justinsmom]

A belated Happy Birthday wish for Patrik (I've been out of town) Continued prayers for you all, and especially for wisdom for the Drs. in his treatment-God Bless....Lanette ><>

[lost parent]

hi everyone
well patrik is finally home and loving it. he has a bag attatched to his left kidney and a cathida but he doesnt seem to care as he just wanted to be home. his pain level is low with a sore tummy but after what he has been thru if thats all he complains about then he has come out of it very well. i took him in for a full ct scan on thursday and we r going in to see the surgeons on tuesday. the radiooligists want to see him on wednesday so a plan can be set up for radiation. at this point we believe he is to have 5-6 weeks of daily radiation and chemo. the chemo is vincristine and irontecan with the vincristine given every monday and irontecan every other day. the only dissapointment i have is that the surgeons believe they may have prolonged his life for up to 2 years however the oncs still believe his current prognosis of 5% survival rate exists. they say the problem with rhabdo is that they dont quite know enough about it and they believe a bit has been left behind and that because his diseased area was so great his chances are small. but as i have said from the start while theres life theres hope and patrik is showing the oncs that they have been wrong before so they can be wrong again. the area that they are worried about now are the mets in his lungs, which they told us that the mets were gone a few months ago! once again they were wrong. we r having a large party for him tomorrow and i will make sure he knows that u r all here with us. once again best wishes
paul oakes.

[dadmo]

Paul:
How wonderful that Patrik is home. What a joy to hear that news, and yes you are right as long as there is life there is hope.
On the recent Livestrong challenge ride, that Scott and I did, I took a survivors rose for Partik. As soon as it's dry enough to stand the trip to Australia I will get in the post along with some other mementoes from the day.

[Karen]

Paul,
What wonderful news! Have a great welcome home/Birthday party for Patrik. We are all celebrating with you!!!!

[Sans rt1]

Glad to hear Patrik is home and doing better. I am actually off to Perth, WA on business tonight. Don't remember if I read where you live, but when I am flying across your beautiful country Sunday afternoon, I will definitely be thinking of Patrik and your family. Patrik's bravery and your family's strength through all of this are inspiration to us all. Will continue to pray for continued miracles.

[jdunn]

Great news that Patrik is home. Enjoy the party.
Peace to you all.

[Don]

Very glad to hear he is home...Enjoy!!!! :)

[lost parent]

Hi everyone,
I will be posting again more ofen as this is what got me though the past 7 months,you guys are what helps me get up every day and deal with Patriks cancer(Your posts and prayers).
Patrik starts chemo on the 9th Oct everyday for 6 weeks,then on the 16th Oct he starts radiation everyday as well for 6 weeks.The side affects of radiation is his spine will be hit and his growth will be affected,how much is unknown, his right kidney will be damaged (it only has 33% working power now) his bladder will not grow as much as it should.His left kidney will be damaged as well.At the end of this 6 weeks he will start more chemo VAC instead of irrateacan and vincristinefor 6 months, after that we do not know. How much damage from chemo and radiation to the kidneys is not known until we finish.Patrik will not get back to school this year or next from what we know at the moment,we are still hoping for Disney land in April.Patrik does not wont any treatment yet he wonted 2 or 3 months off but that is not possible,he is not happy but he is ready to go round 2 with this cancer.Well have to go as the other kids will finish school soon.Thanks Kay

[Lori]

Thanks for continuing to update, I look forward to hearing from you and knowing of Patrik's progress. Keep up the fight!

[Karen]

Kay,
Thank you for the update. He's got quite a treatment plan ahead. What's Patrik's favorite hobby or thing to do when he's resting and recovering?

[jdunn]

Hi Kay,
Thinking of you alot. Keep strong. Prayers for Patrik and his upcoming treatments!

[Don]

I am in AWE of the courage and will of Patrik!!! Please know that we are thinking of your family everyday !!!!!

[lost parent]

Hi everyone,
Patrik is doing ok,the hospital call yesterday Tues 3/10 and said Patrik starts Radation and chemo on Mon 9/10 now and wonts us to stay in the hospital,as the side affects will hit him hard ,they wont him close by so now we will live at the hospital for 6 weeks.Patrik likes to play computer alot he plays call of dutie 2 on the internet.He gets to play with people all over the world,he has head phones so he gets to talk to them as well.So does his dad they play for hours and all hours of the night.Thanks Kay

[lost parent]

Can someone tell me how to put a photo on here so i can put one of us on it.Thanks Kay

[Karen]

Kay,
Can you share with us the hospital name and mailing address? I suspect many of us here would love to send Patrik cards and "care packages" to help the 6 weeks go faster for all of you. Stay strong! Karen

[dadmo]

Kay:
Underneath the area where we type you will see a small section with the title
Attach Files. In that section you will see a button that says manage Attachents. Click on that button. That will bring you to a screen that allows you to laod a picture. What you need to do now is click on the Browse button and locate the picture file inside your computer. If you double click on the drawing file it will get the picture ready for uploading. Now all you need to do is click on the upload button and wait, and wait, and wait, and wait. Then like magic the picture will be attached to your post. Good Luck.

[bryan_w]

Your son sounds like a very strong and determined kid.This is very good. He should strong to face it all. Hope it all goes well for him and that there are positive results from the radiation.
Our thoughts are with you.

[lost parent]

Hi everyone,
We will be at the Royal Childrens Hospital,
Flemington Rd,Parkville,3052
Melbourne Victoria
Australia.
c/o Day Chemotherapy Floor 2
I will be adding some photos later today of us all.
Thanks Kay

[lost parent]

Hi everyone
here is a recent picture of most of the oakes family, patrik is in there somewhere! cheers
Paul Oakes

[keysi]

They all look so cute and young!!!.. My prayers and best wishes to your son! :)

[TOP]

Good looking bunch. Patrik and your family are in my prayers. Take care, Tim

[justinsmom]

I know your time is ahead of ours but where I am (in Washington State) it is Monday 10/9 or 9/10 Austrailia date but no matter the difference in our time zones, I am a mother of a son with cancer and I wanted to remind you I am still here praying for ALL of you.....With Christ's love and my sincere prayers, Lanette ><>
Romans 10:9-13

[lost parent]

Hi everyone,
Patrik got though week 1 not to bad,today is Monday and Pat got diarrhoea on the weekend,he was sick the first week now he has both.I think the side affects will kick in this week,if he gets to bad they will put him back in hospital for the rest of the treatment.he still has a smile everyday and he does not ever complain about what has to be done,i dont know how he does it.Well gotta go Thanks Kay

[dadmo]

Thanks for the update. Patrik is an amazing young man.

[jdunn]

Courageous for sure! Patrik you are one exceptional young man.

[Fish]

That tough little guy continues to be in my thoughts and prayers.

[justinsmom]

Thinking of and praying for each of you..........Lanette ><>

[lost parent]

hi everyone, well its week 3 and patrik is struggling. The diarrhoea and vommiting is daily, sometimes hourly and we r finding it hard to put his weight back on. He is down to 36 kilos and falling so I hope we can fix that problem soon. His pain in his torso at times is unbearable. The radiation targets his entire torso so u can imagine the amount he is copping. I think it is around 7 mins of radiation with a 15 minute stay each day. The oncs said if he gets too bad they will stop the chemo. He recieves Vincristine on a monday with irotecan, and irotecan every other weekday, all this before radiation which is usually around an hour after chemo, however he continues with the treatment, i dont know how though!
hope u r all well

Paul Oakes.

[Scott]

I'm so sorry that Patrik's treatment is so debilitating. I hope he can be made more comfortable. Best wishes to the whole Oakes family in this struggle.

[dadmo]

Paul/Kay:
You are in my thoughts always. Give patrik a kiss for me and please let him know that all of us here are thinking of him.

[Karen]

Paul, Kay and family,
I pray he can be comfortable....what a road you've all been traveling and Patrik's determination is awesome. Please let him know his extended family here is with him in spirit.

[Fish]

I certainly echo everyone else's thoughts. I wish there were something I could do to help Patrik feel better. You all continue to be in my thoughts and prayers.

[jdunn]

Dear Oakes Family,
Just know that you are in my daily prayers. Wishing all of you peace, hope and love! Patrik you are my hero.

[Megazoid]

Reading this really upset me. This is a really sad situation and i feel really bad for the little guy. He will be in my prayers tonight and i can only hope someone is listening and will give Patrik the extra stength needed to pull through these difficult times. Take care buddy and stay strong!

[lost parent]

hi everybody

week 3 is finished and he is still fighting hard. He is still home everyday and taking whatever drugs are needed to ease his pain and other side effects from the treatrment.The irotecan chemo is being stopped on Monday and they are reducing the amount of radiation hits from 28 to 23, therefore he has 8 more to go. He has a nasalgastric tube inserted but we are hoping to have a peg surgically inserted soon so he doesnt have that tube down his throat. Ive finally finished his caringbridge site so if u would like to have a look the site is
www.caringbridge.org/visit/patrikoakes.

Have a good week
Paul Oakes.

Paul:
I had to fix the link.
Bill

[dadmo]

Paul:
Great job with the site. Thanks for sharing it with us.

[lost parent]

Hi everyone,
Patrik is doing realy bad now,his nasalgastric tube came out yesterday when he was being sick.The vommiting and diarrhoea are so bad now,today (Monday) we went back to the hospital and had his nasalgastric tube put back down.Then went for radiation he has not got any better,at 7.30 pm tonight his temp went to 38.8 and still very sick.Called hospital at 9.00pm and they said they are short staffed on 6 floor which is the new 23 millon dollar cancer unit ,built 4 weeks ago.they said take Pat to emergency they will have to get his vommiting and diarrhoea under control,as they are short staffed and cant deal with Pat.When Paul told me this i was so mad i called them and i got told they had no beds ,i told them to call Pats dr Ashley and speak to him,they never called back.At 10.30 pm Pats temp went down so we called the hospital, they said he is due in tommorrow so leave it till then.Well its 1.00am now and just got Pat back to bed again,had to turn off nasalgastric feeds to see if it makes adiffrence,i be puting fluids down his tube hourly so he does not dehydrate,we are told we have one of the best hospitals in the world i dont think so.we put Pat though this harsh treatment and they cant help him when he needs it.i dont know how much more i can make him go though.where do we draw the line and say enough is enough does any one have a answer?he is about 35kg now and droping.thanks Kay

[Karen]

Oh Kay and Paul, through tears my herat is breaking for all you are going through as parents and all that Patrik endures, and with such courage. Deciding when enough is enough is something no parent should ever have to face. Sending you my prayers, my hopes and a hug. How I wish there was something more I could do.

[dadmo]

Kay:
I know the decisions that need to be made are almost impossible to make but in this instance I believe you will need guidance from Patrik. He may be young but in this battle he has proven himself to be every bit a full grown man. As awful as it may be he will need your support with this, whatever he decides. If Sloan Kettering in New York is even an option Nancy and I will take you and Patrik is as if you were our own. Kay, I’m sorry.

[Lori]

My daily prayer for your family is that your prayers are answered.

[kmom49]

Dear Kay and family - as so many others have posted, you and your family are in my prayers as well. Where do you draw the line?? What a frightening thing to even have to think of, but how long do you watch your child go through so much, I just don't know. My heart hurts for all of you. Patrick is certainly an inspiration with his continued fight. Love and prayers, Kathy

[justinsmom]

Paul & Kay, Please email me, you can offer Patrik a choice and you some comfort, what have you got to loose? morgan_mom@hotmail.com I can actually say my Dad's cancer & death from Melanoma in '96 at the age of 57 brought our family a gift unlike any other. I would love to tell you about it...Please

[lost parent]

Patrik has been admitted into the RCH today. His weight was 33kg and dropping, he has lost 3 kg in 3 days. They have placed him on fluids and he will be recieving tpn this evening some time. He is a mess and is now refusing any more treatment as his quality of life is deteriorating rapidly. He is a stick of a boy, ne energy, lots of pain, no interest. Hopefully over the next few days he will pick up. The oncs want to cease treatment for a few days and then continue as normall, I can see a fight about to start, with Kay in Hospital u might hear it from the USA! I will keep u guys in the loop,

Cheers
Paul Oakes

[dadmo]

Paul:
Your families strength is inspirational. Stay strong.

[justinsmom]

Sending love, prayers and tears across the miles.........Please tell Patrik hello
God Bless, Lanette ><>

[lost parent]

Patrik is still in hospital but is getting better. His weight has stopped dropping and is now on the rise, from 33kg to 35.8kg. The oncologist, Prof Ashley, is slowly getting him stronger so they can resume the 7 last radiotherapy treatments on Wednesday the 8th Nov. We have good news though and this is that the last scans have showed NO, YES NO traces of cancer in his body, anywhere. This is great news considering the cancer once occupied nearl 40% of him. Instead of stopping treatment as they have overseas the Oncologist is going to continue treatment for a further 6 months which will consist of intense chemo. This is to stop any relapsing of this beast as it has in other children overseas which eventually ends their fight. If it works it will be a first in the world so we are keeping our fingers, and whatever else we can, crossed..

Sincerely
Paul Oakes

[dadmo]

Paul:
I'm speachless. I guess sometimes prayers do get answered.

[Lori]

Paul, wonderful, wonderful news. I'll keep the prayers coming your way.

[TOP]

Awesome!!! Praise God. I'll keep doing the rosary and divine mercy chaplet for Patrik and your family. Tim

[Scott]

That's so great to hear, Paul! Best wishes to Patrik and all his family.

[TCLEFT]

Incredible news! I'm speechless.

[Mom]

I have the goose pimples... I asked Pope John Paul II for a miracle...maybe this is it. Dianne

[Sans rt1]

I am so happy for you all. What great news. A lot of us have been praying for a miracle - and whatever you believe - in God or science - this is nothing short of a miracle.

Sounds like some rough treatments still to come, but man, what awsome news. Keep strong, and remember that Patrik will continue to be in many people's prayers.

[justinsmom]

Thank you Jesus!!!!!!!!!

[Eric]

It's the best news i heard since a long time. It's a great step against this terrible disease. I just want to say YAHOOOOOOOOOOOO!!!! :D

[Don]

I dont think words came explain how happy I am to hear that the cancer is gone... Your son and family are truly amazing!!!!!

[Karen]

I was afraid to open this thread but am grinning from ear to ear!!!! I'm absolutely amazed, once again, by Patrik. What an amazing spirit he has and your hope has not faltered. I am SO happy for you all!!

[jdunn]

I too am speechless but so greatful. The best news I have heard in a long time!!!! The power of prayer !

[Fish]

I've been out of town, and this was the best news in the world to come home to! I'm so happy for all of you, but especially your amazing son. I hope all continues to go well, and as always, my thoughts and prayers are with you.

[DianeE]

Wonderful news!!!

[SahmIam]

I am so happy for your whole family. I have been following your story on here since Easter when my best friend's 8 year old was diagnosed with Rhabdo. I am so thrilled for you and can only imagine the joy and elation you are feeling.

There must be something about Nov 6th. My friends son is done with his chemo and radiation and had tests done on the 6th. They showed that he is cancer free as well!

Tell Patrik to stay strong and that he will beat this monster. I am glad they are going to continue treatment for preventative reasons.

Elizabeth

[lost parent]

Hi everyone
Patrik is home and in good spirits. He is on nasal feeds for the time being to bring his weight up and the radiation therapy is continuing. He only has 3 more hits to go and then he will have two weeks off all treatment. After these two weeks he starts on VAC & Eptosimide with Ifosamide for 6 months to “mop up” any remaining microscopic cancer cells. Lets hope there is none left as the Oncologist believes.

Paul Oakes
Father to Patrik dx 28/2/06 Paratesticular ARMS 32cm*12cm*8cm Trunk 38cm*24cm*12cm.
Given two weeks to live and still going strong!

[dadmo]

Paul:
I'm in Jamaica in the Caribbean and only wanted to check this one thread. Thanks for post the wounderful news.

[DianeE]

Paul, the only news that will be better than this is
when you tell us Patrik's treatment is finished and
he is cancer free! This has been a story of courage,
hope, and love and as hard as it's been for Patrick, you and
your family, it has been an inspiration for those of us
who have followed it. What an amazing spirit of survival
Patrik has! He has shown me how precious life is and
though I've never met him, he is on my mind and
in my heart each day. I appreciate life more because of
his will to live.

My prayers will continue to be with you and your family.

Diane

[lost parent]

Hi everyone

Patrik is going in for further surgery today to have his stents removed and have a peg inserted for his feeds. He hates the nasal gastric tube so the peg should enable him to be more comfortable and help with the next 7 months of chemo. He should be coming home on Thursday.

Paul Oakes
Father to Patrik dx 28/2/06 Paratesticular ARMS 32cm*12cm*8cm Trunk 38cm*24cm*12cm.
Given two weeks to live and still going strong!

[dadmo]

Patrik must be thrilled to get that tube out. What a great sign that he's getting better.

[Karen]

Paul,
What a relief!!! I like your signture.....sounds like a warrior! Can't wait to see another photo of Patrik at home with his family gettign stronger with this behind him. :D

[lost parent]

Hi everyone
Patrik had his last radiotherapy today, what a relief. We then came home, picked up Kay and travelled back into the city for Patriks operation only to be told that he wasnt going to be operated on today. Their reasoning was due to the radiotherapy has not had a chance to work and if they operated he would not heal properly. So home we came and will get ready for the op next month. He will have to put up with the tube for a little while longer, what a stuff around!

Paul Oakes

[justinsmom]

What fortitude and strength God is forging in such a young man!!! It must be devastating to face these setbacks and Patrik sure has been through so much! But how awesome to have this hope after thinking he would not survive 2 weeks?! I pray you can all focus on the positive news of a remission and not be defeated by medical setbacks, there is always a reason....God Bless, Lanette <><

[nlferraro19]

Reading your story has brought tears to my eyes! My fiance is being treated for TC and I have been soo worried. But, I have done my best to think positive and fight this with all my might, and encouraging him to do the same!! You seem to have a very strong mind and that is one the key issues in fighting this!! Your son and your family are in my thoughts and prayers! I wish the best for you! Best wishes!

Lisa & Nick
(nlferraro19)

[justinsmom]

Just thinking of all of you, praying Patrik is still home, (do you guys celebrate any kind of "Thanksgiving"?) We celebrate on Thursday and I will definitely say another prayer of Thanks that Patrik is doing better....God Bless, Lanette <><

[lost parent]

Hi everyone
Patrik has been home now for 2 weeks and he seems to be getting stronger. He goes in to get a check up at Peter-Mac today so that should be painless. He is in good spirits and is eating well. Hopefully we can put some weight on him before he starts his chemo treatment. That starts again on the 4th December. He still has the gastric tube in and is getting a fair amount of feeds during the night so he should be right to go by the 4th. Hope everyone is well

Paul Oakes
Father to Patrik dx 28/2/06 Paratesticular ARMS 32cm*12cm*8cm Trunk 38cm*24cm*12cm.
Given two weeks to live and still going strong!

[justinsmom]

Paul, checked this yesterday and you hadn't posted so was glad to see this info today. How awesome that Patrik has been home now for a couple weeks----even though he didn't get that tube out ): You know the drill by now....I WILL keep on praying!!! God Bless, Lanette <><

[dadmo]

Paul:
What a relief it must be to have him home. Thank you for posting.

[Karen]

Paul,
Thanks for the update! I am so happy to hear of Patrik's progress and can't wait to see a new photo of him when all this is a thing of the past. He continues to amaze me, as do you with your strength and support for him!

[nlferraro19]

Paul,
Glad to hear Patrik is home! Hope all continues to improve and our thoughts and prayers are with you.

Lisa & Nick

[jdunn]

Paul,
Such good news about Patrik. Still praying for that brave young man.

[lost parent]

Hi everyone
Well another week has passed and Patrik is getting better. He has put on weight, now up to 38.6, and his hair is growing rapidly! He id going into hospital on the 11th for a week to have Ifosamide and Eptosimide so he should be out by the 17th and ready to PARTAY for Christmas. He wont have any chemo after next week until the first week of the New Year. We found out yesterday that he is week 26 thru treatment of 54 weeks, still along way to go. The main thing is he is cheerful and looking better.

All the best
Paul Oakes
Father to Patrik dx 28/2/06 Paratesticular ERMS 32cm*12cm*8cm Trunk 38cm*24cm*12cm.
Given two weeks to live and still going strong!

[jdunn]

This is the most AWESOME news!
Enjoy your Patrik.

[Already Bald]

Paul,
Please tell Patrick that he has inspired a great deal of people here in the USA, and across the world I'm sure.
He is a true hero!
I hope he really enjoys the Holidays this year.

[Scott]

Great news, Paul. Give my best wishes to Patrik!

[lost parent]

Hi everyone

Patrik has started his treatment, last one before New Years. He was not looking forward to a hospital stay but its one closer step to the end of treatment. He is looking better and much more cheerfull so lets hope this week doesn’t dampen his spirit.
All the best

Paul Oakes
Father to Patrik dx 28/2/06 Paratesticular ERMS 32cm*12cm*8cm Trunk 38cm*24cm*12cm.
Given two weeks to live and still going strong!

[dadmo]

Thanks for posting. Tell Patrik hello from all of us.

[petep]

Dear Lost parent -

I usually tend to stay on one of the other sections within this board and just came across your thread for the first time.

I read through every post. It is a great inspiration to read and I will share with a co-worker whose wife has been going thru a cancer battle for the past 2 years...also intially given a couple months...she is struggling but will truly be inspired by your story.

I will never understand why some are faced with such challenges - especially a child - I have been told that asking "why" is a bad path to go down...but one can not help ask this question.

I will be thinking of you and praying for your brave son.

pete

[lost parent]

Hi everyone

Patrik came home on Saturday after a week of Ifosamide and Eptosimide. Started to get sick on Friday but by Saturday morning he had stopped and hasn’t looked back. Hopefully his counts will remain fine and he wont have to be admitted during Christmas, we remain positive and so does he, he will be fine.

I would like to take this opportunity in thanking everyone, and I mean everyone who has posted on this forum over the last 10 longest months of my life, and wish all of you
A VERY MERRY CHRISTMAS AND A SAFE AND HEALTHY NEW YEAR.

All the best
Paul Oakes
Father to Patrik dx 28/2/06 Paratesticular ERMS 32cm*12cm*8cm Trunk 38cm*24cm*12cm.
Given two weeks to live and still going strong!

[Scott]

I hope the whole Oakes family enjoys their holidays together. Best wishes to all!

[dadmo]

Paul:
It has indeed been a long 10 months. I remember the day you guys first signed in. The progress Patrik has made from that day to this is nothing short of a miracle. Give your whole family a hug for me and wish them them a very merry christmas.

[jdunn]

Dear Paul and Family,
Wishing you all a very merry christmas!!

[Karen]

Merry Christmas and a HEALTHY, happy 2007 to the Oakes family!!!!

[Mom]

We have had a difficult year with losses of our friends or their loved ones on this forum. When I think of Patrik and all you have gone through I think of hope. Enjoy the holidays, you deserve it. Dianne

[Sans rt1]

Oakes Family -

Have a wonderful holidays. I just wanted to thank you for sharing Patrik's journey with us. Following this chain has touched my life and I am sure others here as well. For me just reading the posts was an emotional roller coaster ride - but I can't even begin to imagine what it was like for you all to actually live it. I hate to admit it, but sometimes I start feeling sorry for myself for whatever reason I might have - but then I remember this brave young man named Patrik and what he has faced - and my problems start looking pretty insignificant by comparison.

Have a Merry Christmas and I hope Patrik is feeling much better soon. I'll echo your wish for a safe and healthy New Year - for the Oakes Family and everyone else on this wonderful Forum!

[lost parent]

Hi everyone

Patrik had a great Christmas day, nausea and pain free!! He is eating well and we are also feeding him on overnight liquid feeds. He was 40.3 kilos when we left hospital and I reckon he has put on more since, which is great news. His next appointment is on the 3rd of January for VAC so it’s only an overnight stay. His only issue is that the hair that has grown back is starting to hurt him so we have to shave it off. This will then stop his headaches and let him wear his beanies more comfortably. Anyway not much has been happening and I hope you are all well..

All the best
Paul Oakes
Father to Patrik dx 28/2/06 Paratesticular ERMS 32cm*12cm*8cm Trunk 38cm*24cm*12cm.
Given two weeks to live and still going strong!

[Karen]

Hi everyone

Patrik had a great Christmas day, nausea and pain free!!!

Paul,
Thanks for the WONDERFUL update!!!!!!

[kmom49]

What a wonderful update!!!! You all continue to be in my prayers. All the best for 2007 for all of us. Hugs to Patrik! :

[dadmo]

Thanks for the update. I used to be anxious everytime you posted now I look forward to them.

[jdunn]

So glad to hear Patrik is feeling good and that you all had a nice Christmas.
Your familiy deserves only happiness from here on out.

[lost parent]

Hi everyone

Well Patrik has finished another week of chemo. Got through it alright with only a small bout of vomiting on the Friday. His weight is progressing well and especially his outlook. He still dislikes going into the hospital but does it with a smile on his face, not nearly as big as the one when he leaves! Hope all is well.

All the best
Paul Oakes
Father to Patrik dx 28/2/06 Paratesticular ERMS 32cm*12cm*8cm Trunk 38cm*24cm*12cm.
Given two weeks to live and still going strong!

[Karen]

He still dislikes going into the hospital but does it with a smile on his face, not nearly as big as the one when he leaves!

I have a smile on my face as well lately reading your updates on Patrik!!!! He continues to amaze me! :D

[kmom49]

The updates on Patrik are so wonderful. You are always being thought of and prayed for from everyone on this website. God Bless and my very best wishes for a great 2007 to you, Patrik and all your family as well as everyone going through this challenge.

Kathy

[dadmo]

How wonderful these updates are. I guess you're now to the point that you can really start thinking about that trip to disney world.

[lost parent]

Hi everone,
Its 12.08am and just wonted to say hi,Patrik is doing good so is the rest of the children.
We are hoping to do disney in July and meet as many of you guys as we can.
Well i chat again soon.Thanks Kay :)

[jdunn]

Kay,
So wonderful to hear such good news about Patrik. Keep in touch.

[Joe's Mom]

Patrik is an amazing person. He is an inspiration! So happy to hear the great news. Keep it coming. Nancy

[lost parent]

Hi everyone,
Its 9.34pm here Patrik just went to bed,he had a hit of chemo today vincristine.He is not doing so good he just wants to sleep,Paul had trouble waking him up Paul got a real scare.When he did wake up Pat just said he wanted to sleep.His temp went high and he has no colour in him,we spoke to the hospital they said keep a eye on him.If his temp gets to high he has to go into hospital.I know Patrik is a realy strong boy but how much can his little body take.We know how quickly things can turn for the worst,Patrik had a new chemo drug last week 3 in total in 48 hours, one of them was 5ml a hour for 48 hours,as he has never had it before we dont know what side affects it will have on him.His hair,eye lashers and eyebrows are falling out now.Next Monday patrik has chemo 2 chemo drugs every night for 5 nights strait and that wrecks him.Its so had i cant help him in any way, he gets so sick and theres nothing we can do to help him.Its been such along battle and its far from over.Well i better go i have to check Pat .Thanks Kay

[lost parent]

Well everything went wrong today subsequently Patrik is not in hospital. He was due to have the eptosimide and Ifosimide. Apparently he wasnt well enough to have Chemo, only blood tranfusions so he will be back home this week and we will try again next week. The oncs were greatly concerned at his lack of energy and especially the situation when i couldnt wake him however they r hoping the bloods help. Time will tell.

cheers for now

Paul Oakes

[lost parent]

Hi Everyone,
Paul has just posted about how Patrik is doing.
I am posting for some advice from anyone on this site if its possible>
We know that with Rhabdo there has been children who the doctors have given the all clear.No Rhabdo on scans nothing they can pick up anyway.
But then u read their post to find out how things are going only to find out they are Rhabdo angles,with no warning this cancer takes them after they get the all clear scans.We are following the road map the onc have said to do,i know we have to do what they say to give Patrik the best chance of making 5 years and beond,but i cant live with the thought of Patrik not getting a chance to enjoy life at all,To go back to school and just be Patrik again hang with his friends,go to the movies just do what a 14 year old boy does at that age.I dont know if i could live with myself if i put him though all this chemo and this cancer turned for the worst and took him.And he never got to have any happy and fun days.I dont know how to deal with that iam just so torn apart by this.Thanks Kay

[Scott]

The first thing that came to mind are these lyrics from a youth musical we're starting rehearsal on next week.The present is a gift from God,
This day, this hour, this moment.
The present is His gift to you.
What will you do with the present?Hang in there, Kay.

[huckchef]

Sending my prayers and all good thoughts your way. I hope things get better soon for your son and the family.
Many thoughts and prayers,
Brian

[dadmo]

Kay:
I wish I was smart enough to have an answer. All I can do is let you know that I'm here for you if you ever need anything. Give Partik a hug and kiss for me and let him know I will be waiting at Disney World.

[Karen]

Kay,
So sorry to see another setback for Patrik...your posts had been sounding good and I hope this is temporary and's he'c back on his feet. This past year has been so very hard for all of you and Patrik. Kay, is there someone at the hospital you can talk to about this...a social worker or somebody? How are Patrik's spirits now?
Patrik is in my thoughts and prayers every single day. Sending a long distance hug to you Kay...and always one for Patrik.

[petep]

Kay,

The hardest part for most is the constant tug of wanting to think about the future, and sometimes questioning what you have done in terms of treatment. It is natural.

As scott's post suggests, you can only be in the present. You are doing everything you possibly can medically and your son is loved by his family. Feel security and comfort in that and cherish each day as you go forward.

We will continue to pray and think of Patrik and your family.

pete

[lost parent]

Hi everyone

Another couple of weeks have gone by with treatment and tomorrow Patrik is being scanned again to see if anything has changed. We r looking forward to good results. My only concern is his weight at the moment as he seems to lose it easily. My biggest fear is that this demon is slowly returning and as Kay has posted the Oncs cant always find it. Your all correct in saying we must live in the present and that is exactly what we r doing however we r finding it difficult when u watch a loved one slowly deteriorate. He still has his character and at times is very happy however I think he is missing his friends and his old life in general. He stated the other day if it wasnt for the photos on our pc he would have forgotten what he was like 12 months ago, for me I will never forget. Well thats enough babaling, hope u r all well.

Paul Oakes

[dadmo]

Paul:
Stay strong my friend and remember if there is anything we can do or help with just ask. As always you and your family are in my thoughts.

[Karen]

Give Patrik a big hug from me, and stay strong. Thansk for the update and we are looking forward to good news from the scan as well!

[jdunn]

Paul,
Thanks for the update on Patrik. He is on my mind alot as are you and Kay.
Your family is going through some tough times right now. Keep positive thoughts. As always, prayers going out to your family!

[lost parent]

Hi everyone
just a quick one... patrik is not well, pain is back and his left kidney (the only good one) is badly swollen. Oncs wouldnt say why but you could see it in their response. Patriks pain is in his left side and his throat is very sore. Next wednesday we will hopefully find out what the hell is going on

Paul Oakes.

[Marco1975]

"We are not given the burdens we deserve, we are given the burdens we can bear."

Patrik IS strong.

[Savin16]

Paul,
My heart aches for you and your family. Patrik is always in my thoughts and prayers. How he goes on is amazing. I pray for some good news for him, and your family. This is a terrible disease, I HATE IT HATE IT HATE IT. Stay positive as you have been, how I don't know, but thank god you do, for your son's sake, good news has got to be around the corner.

[lost parent]

Hi everyone,

well we have recieved great news, Patriks scan was clear apart from a 3mm lump in his right lung. The Oncs are not sure what it is at this time but they r going to leave it until after his chemo has finished, which at this stage will be aroung July-August. The only way to determine what this lump is to take it out. I know Patrik has been thru alot these past 12 months but Im leaning towards taking the thing out at the end of his treatment. Peace of mind! His pain was due to the stent blocking the kidneys. This is to be taken out next Wednesday. This is the stent that should have been removed months ago! when Kay Pat & I turned up but the Oncs sent us home. If they had done it then he wouldnt be having the trouble now. Im just glad that the scans did not show any cancer in his main areas, what a relief...

Hope u r all well
Paul Oakes

[Eric]

Very good news !!

I wish the best to patrick for the rest of his treatment

[Scott]

That is terrific news, Paul. We'll keep sending positive thoughts your way each day.

[jdunn]

Oh Paul,
What great news! I love good news like this. Give Patrik a bug hug and kisses.

[AdrianB1971]

Great Great Great

[dadmo]

Paul:
Finally a successful ending is in sight. Thank you for that post. Give Kay and Patrik a kiss for me and shake your own hand (if that's even possible).

[petep]

what great news...I'm very happy for your entire family.

[lost parent]

Gday everyone,
well its been 12 months to the day that Kay posted on the forum, and what a terrible 12 months it has been. Patrik has gone form a cheerfull 13 y/o to a quiet 14 y/o however he is alive and at this time winning the battle. To Scott & Dadmo who both came to Kays rescue while i was in Hospital Hell - Thankyou. To Lynette and everyone else who sends their prayers and best wishes i thankyou all as i do believe these little things have helped all of us thruought this struggle. We still have a way to go but we r on the home straight.

Once again thankyou

Paul Oakes

[dadmo]

at this time winning the battle How wonderful it is to see you write that. Yes indeed he's on the way to the home straight.

[lost parent]

Hi everyone
its Sunday night and unfortunately we have to rush Patrik into hospital. not good, cant swallow right side of face is badly swollen and we dont know why, I guess we will soon find out. Ill keep you informed

Paul Oakes

[Scott]

Wishing you good luck today and every day...

[Savin16]

Praying your visit is ok today. I think of Patrik often. Lots of love and prayers coming your way!

[dadmo]

Paul/Kay:
You guys are in my thoughts every day.

[icoe]

you are in my thoughts
Irene

[lost parent]

Patrik has stabalised and is now back on the same planet as us. His vomitting has ceased and his face has finally come back to normal. It seems that he attracted a bad infection and it threw his system all out of whack however I dont know when he will be back on line. He is recieving alot of anti biotics and blood transfusions at the moment. Thanks for the prayers

Paul Oakes

[Scott]

I'm very glad to hear that the situation has improved so much.

[petep]

Paul/Kay,

I am very glad to hear this...

I will call my wife now to let her know - since I shared your story with her, she asks daily how Patrik is doing. Your are a long way from florida, but Patrik's continued fight for life and your strength has touched so many of us.

pete

[justinsmom]

Patrik and Kay and Paul, Just letting you know I am still praying.....In Him, Lanette <><

[lost parent]

Gday everyone
Patrik is home and doing well. What a roller coaster, one minute everything seems to be going well and the next the whole situation changes with the unknown starting to get a little scary! We like to think that these "hickups" are just that and we can continue to plan for when Patrik is off treatment. He still is cancer clear in all but the right lung, but as I said before the Oncs dont quite know what it is yet so it could just be scarring. Thanks for the replys and as I also wrote before what a roller coaster. I thought we were over this but obviously not.
best wishes
Paul Oakes

[dadmo]

Paul:
Thank you for the updates. I know it's hard to picture but there are really hundreds of people who wait for every update. Many of us really do feel your pain.

[justinsmom]

Praise the Lord he is back home!!! God Bless, Lanette <><

[justinsmom]

It's been nearly 3 weeks since you've posted, is everything ok? I know it's difficult sometimes posting updates, but just wanted to know how Patrik and the family is doing....if I could get you to private message me with your address I would love to send Patrik a card just to let him know someone's praying for him in Washington State...God Bless, Lanette <><

[lost parent]

Gday everyone

I know its been a while but no news is good news. Patrik is doing well, he is holding his weight finally and the nasal gastric tube has come out. He has had 2 more hits of VAC in that time and seems to be coping. A little bit sick for the first few days but nothing out of the ordinary. He is spending Easter at home this year and we are all pleased with that! He started to go back to school which he wasnt to fond off to start with but now has a smile on his face when he comes home. He has another hit in a week and this continues for at least 4 months with Irotecan thrown into the mix for a few weeks at least for good measure. Things have calmed down a bit since the last "issue" and his general cancer health is fine.

Hope everyone is well and I sincerely wish everyone a Happy Easter.

Paul Oakes

[justinsmom]

Paul, It's so good to hear that Patrik is doing good (as good as can be expected, having to endure all he's had to)!!! Easter is a perfect time to hear from you, as Patrik has hope and so do you all. It's great to hear he is able to attend school!! Another reason to celebrate! As you celebrate Easter this year may you remember God's gift to us all.... that we can have hope for a future with no sickness or pain because of His gift, in the life , death and ultimately the resurrection of His only Son.....I am SO happy to hear of this news and will continue to pray for your son's renewed strength!!! God Bless, Lanette <><

[Karen]

Happy Easter to to the Oakes family! So glad Patrik is back at school and regaining normalcy. Take care!!!!

[dadmo]

Paul:
Thanks for checking in. It's great to hear that things are beginning to get back to some normalicy.

[lost parent]

Gday everyone

Patrik is still continuing with VAC treatment and is now entering another intense stage. He has been having a week off in between hits but is now going back to weekly and then in two weeks daily treatment. This is to continue until July. His general cancer health (as i now call it) is fine and he had a treat last week with his siblings as at chrissy we bought them tickets to Pink's concert here in Melbourne. They went last week and ended up in the moshpit! His aunty jodie took them all as Kay was unwell and arranged a chair for him to the left of the stage in case he got tired. The organisers were very obliging and he reckoned he had the best seat in the house! They all loved the concert and Kay & I were happy that finally Patrik got to enjoy life during treatment.
We are all looking forward to the end of treatment and are still enquiring with the make a wish people about Patriks trip to disney land in CA. When we find out more we will let you know.
I hope our extended family is all well and Im sorry I havent been awake enough to post sooner.

Best Wishes
Paul Oakes.

[kmom49]

Hi to you guys

How wonderful to hear from you and especially the good news that Patrik is doing well. Awesome, awesome news that he was able to get out and enjoy himself. Hope you and Kay are able to do that as well now and then. Think of you often with lots of prayers too.

Kathy

[Karen]

Excellent news! I look in on Patrik's Caring Bridge site and saw this as well!

[dadmo]

Paul:
It's great to see that Patrik is doing better but how are you and Kay doing?

[lost parent]

Gday everyone
Another 3 weeks of chemo and Patrik is struggling again. He is getting sick even before he has it now, a massive bruise (or what we thought ) has appeared on his left foot. The oncs arent sure what it is. First they thought it was lack of platelettes however they now say this is not the case, blood clot was one thought however now more tests have to be done to determine what it is. He seems to be having more and more blood transfusions to try and top him up. We have been thru this all before but they are becoming more frequent now and no one is saying why. We know it is to help his bloods recover faster however it is the oncs concern that has us concerned. He was able to go fishing last saturday and caught a sand crab, he was wrapped that he actually caught something, all the other kids enjoyed themselves as well. He still has his sense of humour but the unwell ness is starting to get him down a bit, but as usual we will continue on towards the treatment end. Hope everyone is wee

Paul Oakes

[Fish]

Sorry to hear Patrik is having a rough time again. Hopefully it will pass soon and he'll be feeling better. You all continue to be in my thoughts and prayers.

Fish

[lost parent]

Gday everyone,

Another couple of weeks and Patrik has picked up again. The oncs never did tell us what the bruising was all about so we just moved on. They seem to um and ah a bit and procrastonate so we are just getting on with life. Ive taken the kids fishing again and patrik seems to enjoy the peace & quite of the sport. I can see why they call it Fishing & not Catching though! Weve watched the sun set on a couple of occasions and hes remarked how nice it looks. I think he appreciates everything around him now more so than before. I know I do!
I hope everyone is well

best wishes
Paul Oakes

[kmom49]

Hi Paul

So good to hear from you and that Patrik is "getting on with life" like you said. That's just the best thing to hear. I was thinking about Patrik and all of you as I do many days, hoping things were ok. Always great to hear an update. Thanks for that and remember you and your family are in my prayers daily.

Kathy

[justinsmom]

Paul, Patrik, Kay,
I too continue to pray for Patrik's situation & for all of your families....you have faced this battle for a long time now...we had a scare this past couple weeks that my son's cancer was back, and I praise God that we found out it wasn't but at the same time a dear sweet lady in our church found out she has a brain tumor...and a friend I met through Justin's cancer whose husband passed on from lung cancer, then she was diagnosed with ovarian cancer & now she found out hers is back......so I am elated at our news, yet continue to turn to God & lift up my friends Mary & Joan & always Patrik...God is truly the one who carries us in His arms (the footprints poem is so true)
Thankful you have been able to enjoy some family time, fishing is great and God's creation is so awesome there really aren't words to describe how beautiful He has made it !! I can't look at a flower & not think of His handiwork & how much more He cares for us than the flowers!!!!
...................Prayers for Patrik in Washington State............
God Bless, Lanette <><

[lost parent]

Crikey Lanette!

your life is busting at the seams. I hope your friends get through their problems and that you can be there for them as best you can. Life seems to throw all sorts of issues at us and here in oz we have a favorite saying.. "Life wasnt meant to be easy"!!

Keep on keeping on Lanette and If we do make it to the U.S. you will be one person we will definately call on!

best wishes

Paul Oakes

[Scott]

Paul, it's so great to hear that you are all "getting on with life." No better thing to do! Best wishes from this corner of the globe for continuing good news.

[justinsmom]

I would love that!! We could take Patrik fishing for Walleye or Sturgeon on Lake Roosevelt (Columbia River) .......And I told you before we own a Burger Restaurant & I'd fatten him up with burgers, fries, ice cream, root beer floats, fish & chips, onion rings...........need I go on? Lanette ><>
.......................Prayers from Washington State.........................

[laidback93]

I just read this entire thread and all I can say is WOW! What a brave 14 year old! Simply amazing.

Any luck on the Disneyland trip? I hope that it comes through for you. I haven't been there since I was 6 so I'm about due. It would be great to meet all of you if you did make it.

Sending my thoughts and prayers from California.

Bill

[lost parent]

Gday everybody

well another 2weeks has passed and Patrik is coping well. Only just started getting the trots but apart from that he is cruising thru the treatment. He now has a week off and then starts the last two weeks of Irotecan daily with Vincristine every monday. When that is finished we have scans on the 24th of July and if all is well, which i reckon it will be, he will have his port removed in September after they remove that thing in his lung. Hopefully the scans will show that the thing has gone, whatever it is.

Once again hope all is well and life is being generous to you all

best wishes

Paul Oakes

[jdunn]

Paul,
Thanks for the update on Patrik. So happy to hear that he is doing ok. Think of you all often.
jane

[Karen]

Hi Paul,
I hope Patrik is getting his strength back for another fishing trip! I visit Patrik's Caring Bridge site for posts and photos as well!
Best wishes for the Oakes family!

[lost parent]

Gday everyone

Patrik hasnt had chemo since my last post, his counts have been down and he has been down generally. Its winter here now so fishing is a rare family outing but weve managed to fit one trip in. He starts chemo tomorrow hopefully for 2 last weeks. We are counting down the days.

Hope everyone is well

Best wishes

paul Oakes