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Thread: He is only 13 years old

  1. #1001
    Join Date
    Apr 2012
    Location
    Los Angeles, CA
    Posts
    45
    I am so sorry for your loss. May you find comfort and peace knowing that Patrick is in a better place, and he left this world surrounded by love. We can all only hope for the same.

    With loving thoughts and prayer,
    Celeste
    loving girlfriend to 39 year old cancer survivor


    march 2010 R/T stage 1A seminoma
    surveillance
    march 2012 recurrence, right inguinal lymph node 3cm
    stage 2B seminoma
    april 2012 BEPx3
    august 2012 cancer free

  2. #1002
    Join Date
    Feb 2006
    Location
    Australia
    Posts
    195
    Today I woke and my son was gone,stayed in his room last night and heard his dad talking to him this morning. Woke up only to find I was dreaming.

  3. #1003
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    Mar 2012
    Location
    Italy
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    There is a part, a dimension, where dreams are real too, I don't know where it is, but I'm sure that exist! May my strongest, warmest and friendly hug travel through the ocean and the lands and reach you!

  4. #1004
    Join Date
    Mar 2009
    Location
    Lehigh Acres Florida
    Age
    26
    Posts
    109

    May God be with you and your family

    I am so sorry for your lost. Your family will always be in my prayers.

    Jeanne
    Frank
    Diagnosed 01-2009
    Right I/O 02-2009
    Stage lll Seminoma, spread to lung and lymph nodes
    Chemo started 03-16-2009 (3 x BEP)
    5/18/2009 First All Clear
    7/21/2010 All Clear continues
    10/27/2010 All Clear
    01/26/2011 All Clear
    04/20/2011 All Clear
    04/19/2012 All Clear
    12/31/2012 All Clear
    2/25/2013 Going to be a first time father - Girlfriend due 8/2013

  5. #1005
    Join Date
    Jan 2007
    Location
    Raleigh, NC
    Posts
    621

    Keep talking

    And listening. That Angel you made may be offering you the peace that you so deserve. He guided you through the long, long, fight. He won't stop leading you now.
    Stage III Non-Seminoma- 7/11/06
    Right I/O 7/12/06
    Completed 4x BEP 11/06
    Bi-Lateral RPLND (Dr. Shenifeld)- 11/27/06
    Surveillance since then

    When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell.
    Lance Armstrong.

  6. #1006
    Join Date
    Oct 2009
    Location
    Anchorage, Alaska
    Age
    56
    Posts
    140
    Quote Originally Posted by lost parent View Post
    Today I woke and my son was gone,stayed in his room last night and heard his dad talking to him this morning. Woke up only to find I was dreaming.
    There will be those moments. I felt Vince giving me a hug one night. It felt so real it woke me up. I thanked him and went back to sleep. Had to be a dream...or was it? Cherish the moments.

    15 Dec 08 Son Vincent diagnosed with TC
    20 Dec 08 RT I/O, 85% EC,15% Teratoma
    3XBEP Feb to April 09
    18 Aug 09 ct scan,massive tumor in lymph nodes
    23 Sept 09 RPLND, 80% Immature Teratoma, 20% Mature Teratoma
    21 Dec 09 scan shows neck, abdomen and groin node enlargements
    21 Dec 09 Amended path report, Metastatic Primitive Neuroectodermal Tumor as well as Metastatic Teratoma
    29 Dec 09 starts 6X VAC/IE
    7 March pet scan shows new disease, chemo stopped
    Hospice 5/11/10
    Passed away 5/15/10

  7. #1007
    Join Date
    Apr 2012
    Location
    Brooklyn
    Posts
    33
    I am very sorry to hear about your loss! Such a long struggle you all had.
    How brave you all are!!
    God bless!

    Son diagnosed April 9, 2012.
    Left I/O April 19, 2012.
    Biopsy- pT2, non seminoma. 100% Embryonal.
    Bx shows Lymph and vascular involvement
    HCG 5/14 334.2 6/11 8.1 <2
    AFP 5/14 111.2 6/11 31.1 4/2013 8.6
    Chemo finished 8/10
    RPLND- 9/20/12 DC home 9/26/2012
    Bx Report: 2 Teratoma. No active Cancer found!
    Monthly Xrays- October until April 2013- ALL Clear
    Monthly labs- October until April 2013- All WNL
    Winner of College Poetry Contest!! April 2013~~

  8. #1008
    Join Date
    Oct 2010
    Location
    UK
    Posts
    108
    Dear Oakes Family,

    I'm sorry to hear about the lost of your beautiful son, my heart goes out to you and your entire family. No words can express the grief and sadness felt by people on this online community, I would like you thank you and Patrik for being open and sharing your experiences, it was truly heart breaking reading your posts. He has had a great effect on us all and he can never be replaced. R.I.P Patrik! Gone but never forgotten.
    Malignant teratoma undifferentiated (MTU), teratoma differentiated (TD); and classical seminoma.

    Size of testis: 45 x 25 x 25 mm
    Spermatic cord: 80 mm in length
    Location of tumour: Testicular parenchyma
    Size of tumour: 25 mm
    Surface of tumour: irregular and nodular

    ‎"Yesterday is history. Tomorrow is a mystery. Today is a gift. That’s why we call it the present!
    "

  9. #1009
    Join Date
    Feb 2009
    Location
    SE PA
    Posts
    237
    I am so sorry and send my deepest sympathy to your whole family. I, too, wish you comfort and peace.
    Mother of a great son
    Diagnosed Dec 2008, Stage III poor risk
    4xBEP Jan - March 2009
    RPLND - April 10, 2009
    Reoccurence Sept 2009
    4xTIP Jan 4 - March 30, 2010
    Follow ups-Tumor markers, xrays/MRI's normal

  10. #1010
    May his memory be eternal!

  11. #1011
    Join Date
    Apr 2006
    Location
    Chester County, PA
    Posts
    369
    Dear Kay, Paul and Oakes Family,

    I am so sorry for the loss of Patrik.
    He showed such courage during
    his battle and his memory will provide
    a beacon of hope for all who are fighting
    cancer, especially children with rhabdomyosarcoma.

    I believe Patrik is in a place
    where there is no pain or illness.
    Only peace, and happiness.
    And maybe he got his wish
    and he is ten again.

    With love in Patrik's memory:


    Today I will be ten again
    and maybe climb a tree.
    When I reach the highest limb,
    Some clouds will visit me.

    They'll tell me secret things
    that only clouds like them would know.
    A gentle breeze, a whispered sneeze,
    and off I'll see them go.

    Today I will be ten again
    and walk along a stream.
    I'll skip a stone and look for frogs
    all wiggly and green.

    A nearby rock will be my throne
    and I will rule the land.
    I'll be the king of consequences
    I can't understand.

    The troubles I had yesterday
    will all be far away.
    I won't have to think of them
    if I am ten today.

    Today I will be ten again.
    I'll grow strong wings and fly
    just like the eagle who asked me
    to join him in the sky.

    A painless, peaceful feeling
    comes with being ten today.
    So if I can be ten again,
    that's how I'm going to stay.

    Diane Ewing (c)2012
    Last edited by DianeE; 08-04-12 at 07:30 PM.

  12. #1012
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    Australia
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    That is beautiful DianeE

    If we have room may we use that in the service?

    Paul Oakes

  13. #1013
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    Apr 2006
    Location
    Chester County, PA
    Posts
    369
    Of course Paul.

    I would be humbly honored to be a small part of
    the celebration of Patrik's life.

    God Bless You and your family.

    Diane
    Last edited by DianeE; 05-23-12 at 09:29 PM.

  14. #1014
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    May 2012
    Location
    Knoxville, TN
    Posts
    17
    Dear Oakes family,
    I'm new to this site and to the heartbreak that cancer can cause. I finally got to read your blog and am truly astounded how the date started in 2006 at his diagnosis and he fought so hard and so bravely for six years after being originally told six months! My heart breaks for the loss of your son! I am so glad you got to spend those extra years with him! The picture of your family on the couch together is so incredibly wonderful! I will be praying for you all and wishing peace to be found to live every day to its fullest! Big hugs from Daniel and Nikki in Tennessee!!
    FONT] ~Nikki
    Daniel's gf, caregiver
    2-23-12 Diagnosed TC S1 seminoma
    3-09-12 RT Orchietomy, pre-AFP 22.0, post- 19.6, re-classified S1S non-seminomaous carcinoma
    4-18-12 RT Shoulder Port placemt
    4-23-12 Start 3xBEP, AFP 21.0, HcG <1.2f
    5-16-12 AFP 18.9, HcG <1.2f

  15. #1015
    Join Date
    Feb 2006
    Location
    Australia
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    195
    The live stream for Patriks funeral is:

    http://live.spectruproductions.com.au

    A test pattern will be available from 2200 hours Friday 25th May AEST and the service starts at 1330 hours Saturday 26th May AEST.

    Paul Oakes

  16. #1016
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    Feb 2011
    Location
    Perth, W. Australia
    Posts
    365
    Dear Kay and Paul, my heart aches for your whole family. Patrick has been a true fighter and an inspiration to us all. May he rest in peace and may you all find comfort in each other. Sending much love from Perth. xxx
    Son (James, age 17):
    12/1/10 - TC confirmed
    HCG 80, AFP 156
    12/3/10 - Left I/O
    70% Mature teratoma, 30% EC/yolk sac. 41 x 37mm. Multiple foci of vascular invasion, negative spermatic cord margins.
    1/12/11 - HCG 7, AFP 4.6. Surveillance.
    2/7/11 - Tumour markers elevated - HCG 18, AFP 14.5
    2/15/11 - PET and CT scans show at least 4 lymph nodes affected (abdomen and base of neck).
    3xBEP completed April.
    Celebrated 18th birthday.
    6/30/11 - All Clear!

  17. #1017
    Join Date
    Mar 2012
    Location
    Houston
    Posts
    246

    Sorry for your loss.

    I am sorry for your loss. I will pray for your family that you will be comforted in this time of sorrow.
    03/16/2012 Ultrasound Diagnosis TC (Tumor 5.5 cm)
    03/22/2012 Right I/O Pre-IO markers normal
    03/28/2012 Pathology Classic pure Seminoma, pT1/N?/M0/S0
    04/05/2012 CT Scan--Clear? (single 1.2 cm node External iliac)
    05/03/2012 PET Scan CLEAR. All markers Normal.
    05/04/2012 1 X CARBOPLATIN INFUSION (Chemo Lite)
    09/02/2012 CT All Clear! (1 cm External Illiac Node)
    04/04/3013 CT All Clear!

  18. #1018
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    Feb 2006
    Location
    Australia
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    Sorry the url address was mis spelt. it is
    http://live.spectrumproductions.com.au

    sorry

  19. #1019
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    Mar 2010
    Location
    Northern California
    Posts
    1,395
    That was an amazing service, now the hard part begins, healing.

    Please drop in now & again & let us know how you're doing, if you feel up to it.

    Dave
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP

  20. #1020
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    Feb 2011
    Location
    Rockville, MD
    Age
    35
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    So sorry to hear, but glad that Patrik no longer has to suffer. He was so brave.
    Steve - http://www.caringbridge.org/visit/stevep
    February 2011 - DX Stage IIB, 90% Embryonal Carcinoma, 10% Yolk Sac
    Mar-May 2011 - EPx4 per Dr. Bosl at MSKCC, administered locally in DC
    6-Jun 2011 - post chemo CT shows one lymph node at 1.4cm remaining
    22-Jun 2011 - RPLND with Dr. Sheinfeld at MSKCC, all 51 nodes removed negative
    Dec 2012 - 1.5 YEARS ALL CLEAR!

  21. #1021
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    Jul 2008
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    Huntington Beach, California
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    45
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    1,233
    Paul and Kay I just wanted to let you know that we are continuing to think of you and pray for your peace.

    Hugs from across the miles.

    Mary Ann
    CaregiverSon Josh 23yr Dx 3/5/08 IIIC NonSeminoma affected lung, kidney liver back & tumor/clots in vena cava & celiac artery 3/7/08 L I/O 3/30/08 PostOp surgery 4XEP (VP16 & Cisplatin) 3/12-5/25 LDH > 5000 & AFP 145 (3/5 pre-op) LDH 563 & AFP 4 (5/26 after 4Xchemo) off blood thinners 3/18/09 Surveillance per Dr E 8/4/08 *1/2012 ALL CLEAR!

    Self 1/29/09 dx thyroid cancer metastasized to right lung 2/10 thyroid removd 4/17 rx RA131 5/11/10 &7/16/10. 1/12survellience

  22. #1022
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    Apr 2006
    Location
    Chester County, PA
    Posts
    369
    Dear Paul, Kay and Oakes Family,

    It's hard to describe something as being both wonderful and heartbreaking
    at the same time, but that is just how I would describe Patrik's funeral.

    It was wonderful to hear about your lives and how you came together and
    expanded your family. Wonderful to hear the words that Patrik wrote
    to each of you, but heartbreaking to know they were the last words
    you each will have from him. I don't really know any of you, but couldn't
    help but smile and even chuckle a bit at some of the truly funny things
    that Patrik had written.

    Paul, as I watched you say thanks to the various people and organizations
    I couldn't help but wonder how on earth you found the strength to stand in
    front of family, friends and the world who were watching, but then I thought about
    how much courage Patrik had shown through six years of treatment and I
    understood where his fortitude came from.

    I couldn't keep my tears from falling when "Oh Very Young" was played.
    All the music was perfect, but that song was especially powerful.

    I wish for all the Oakes Family healing peace in the days ahead and hope
    the pain that must be so intense now, will ease as the days pass.

    Diane Ewing
    Last edited by DianeE; 05-28-12 at 09:08 PM.

  23. #1023
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    Aug 2007
    Location
    South Florida
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    50
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    546
    As with many of us, our daily grind tends to make us numb to what's really important. A nagging feeling all weekend to log on after some time brought me here today. Now, I know why.

    Like many others, I have followed Patrik's journey for many years and my prayers have included him ever since. The love and guidance the Oakes family provided to Patrik while the Lord allowed him to share his life with them is truly sincere and a testament to human relationships and the importance of family.

    I mourn with you but I also pray with you. I know he is sitting at the Lord's table together with so many (too many) others who have had to endure the same walk of life.

    May God Bless Patrik and the Oakes Family now and always!


    "Now is your time of grief, but I will see you again and you will rejoice, and no one will take away your joy". John 16:22
    "Faith is being sure of what we hope for and certain of what we do not see". Heb 11:1

  24. #1024
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    Sep 2011
    Location
    Texas
    Posts
    143
    Dear Oakes family and friends,

    I have followed Patrick's fight since last year. As a parent of a son currently fighting this disease, I have only my deepest and most sincere condolences to offer you. I wish I had something more profound to offer but I just don't think any words are good enough. I can only hope that you all can get through this time.

    Cheryl

    3/8/11 Dx., age 21
    3/11/11 Rt I/O, chorio/teratoma. Stage IIIb
    4/11/11 BEP
    8/30/11 RPLND
    9/7/11 CT- mets in lungs
    9/28/11 HDC 1, HCG 62,247
    10/26/11 HDC 2, HCG 843
    11/29/11 HCG 3375, spread to liver & kidney
    11/8/11 Gemzar/Taxol began- G/Tfailed 3/5/12
    3/12/12 MEA-5 cycles, ended 6/15/12, HCG 54
    7/4/12 Etopiside started
    7/9/12 2 seizures, one brain met found
    7/26/12 radiation for brain met
    8/29/12 right lung surgery

    http://www.caringbridge.org/visit/matthewmartinez

  25. #1025
    Join Date
    Feb 2006
    Location
    Australia
    Posts
    195

    Thankyou

    On behalf of Kay and Myself I would like to say thankyou to everyone on this site for the compassionate words over the last few weeks.

    We are still trying to come to terms with what has happened and are finding it difficult to comprehend why this has happened. I know this will only be answered when its our turn however that doesn't stop us from wondering.

    I have heard it said that all wounds heal with time but with what we are feeling at the moment I find this a difficult statement to get my head around.

    We will pop in from time to time as you all feel like family however please understand if we are gone for a while, it is all so raw now and we need to get our heads into something else.

    Once again thankyou from the bottom of our hearts.

    Paul & Kay.

  26. #1026
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    Mar 2010
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    Northern California
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    Absolutely take all the time you need. This place & it's residents aren't going any where soon, so feel free to say hi whenever it feels right to you.

    Dave
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP

  27. #1027
    Join Date
    Feb 2006
    Location
    Australia
    Posts
    195
    Hello Everyone , it's been alittle while since we posted.
    Paul and I still take one day at a time and our children are doing ok.
    Patrik asked us to still go ahead with the pub just before he passed, well
    We did go ahead and brought a pub and motel in one. Should be taking over in Aug
    will let you all know when we move in. Hope you are all well . Love Kay Paul

  28. #1028
    Join Date
    Apr 2012
    Location
    North Carolina
    Posts
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    So thankful to hear from you guys. Here is looking forword to more pub news.
    Tony

    Diagnosed 4/12/12
    AFP 31, HCG 32
    I/O 4/25/12
    Nonseminoma Stage 1S
    Embryonal Carcinoma 95%, Yolk Sac 5%
    Lymphatic Invasion, Markers did not normalize
    BEPx3 Finished 8/5/12
    Post Chemo APF 2 HCG Undetectable

  29. #1029
    Join Date
    Feb 2010
    Location
    Ireland
    Posts
    603
    Hi Paul and Kay,

    It is nice to hear you doing ok and the family also. The very best of luck with the pub.
    Val

    Brother (23 when diagnosed) : Dianosed 14/09/2009, testicle removed, Non sem diagnosed. Tumour markers 36000 before op and dropped to 17000 after operation.. Chemo started end of september 4 x BEP. Tumour markers normal at end of chemo. RPLND 26 Feb 2010 No cancer found.

    Latest Appointment May 2013- CT and markers normal

  30. #1030
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    Jul 2009
    Location
    Austin, TX
    Age
    32
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    Dear Paul and Kay---As always, thank you so much for taking the time to give us an update, and letting us know what's going on with your family. I know that a lot of us here think of you both, and Patrik, and your whole family, every single day. I heard some Queen on the radio the other day and thought of Patrik's excellent taste in music. :-)
    Kat
    _______________________________________________
    Caregiver
    DX 5/15/09
    Left orchiectomy 5/22/09
    60% embryonal, 40% seminoma, w/ VI, LI, T2 (CS-IB)
    CTs clear, X-rays clear, blood markers normal
    L-RPLND 7/14/09, San Antonio
    3 nodes positive, 100% embryonal, N1 (PS-IIA)
    2 rounds BEP August 24, 2009, Austin
    Enlarged lymph nodes Oct 09, Dec 09, Jan 10, Apr 10
    All clear 10/01/10

  31. #1031
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    Feb 2006
    Location
    Australia
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    Gday everyone

    well its been 3 months now since Patrik passed and Kay and I are still finding it difficult without him. Its just not the same anymore, however we just keep going and take each day as it comes.

    As Kay mentioned we should be taking ownership of the pub in the next few days so this will be a start of a new life for us.

    The kids are doing fine, every now and again his sisters have a bad day but this is to be expected and over time they, as we, will learn to live with what has happened.

    Work has taken some of the rawness of Patrik away and I have had to complete my contracts as I am a Project Manager in the construction Industry. Unfortunately most of my work is away from home so Kay and I have had to deal with things in our own way which is not ideal but we seem to make it work.

    Anyway I thought Id just pop in and say hello and hope that everyone is winning their battle with the cancer.

    best wishes
    Paul Oakes

  32. #1032
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    Good to hear your update Paul! I hope things get easier for you as time goes by. Good luck with your pub.

    Dave
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP

  33. #1033
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    New Jersey
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    Thank you for checking, Paul. Getting back to work and leading a busy life always poses a dilemma in a situation like this: you want to give yourself and your family the time and the attention to grieve together, but at the same time being busy can actually offer a respite from the pain. I know people who for whatever reason stayed home and I got the sense it was actually a lot harder for them, spending so much time alone with their pain and grief.

    Alex
    TC1: 1996, right orchiectomy, seminoma stage I 3.5 cm mass, radiation therapy (peri-aortic & pelvic 27.3 Gy)
    TC2: 2008, left orchiectomy, seminoma stage IA 5 cm mass, left & right prostheses, AndroGel TRT, surveillance at MSKCC

  34. #1034
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    Hi Paul and hi Kay,

    My opinion is that, after a dramatic experience like you have had, the only remedy to feel "better" is to try to start to do the usual things again. Losing a son is a shocking and painful event, I know, but we have to find inside ourselves the mental strength to continue our lives, in memory of the beloved one we have lost.

    Good luck with your pub !!!!

    A sincere, friendly and strong hug !!!!

    Frank

  35. #1035
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    Jan 2006
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    E.H., CT
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    159
    You are blessed to have a strong family unit, for sure even if you are away from each other from time to time! I can't even imagine the whole left in a parent's heart after losing a child. My prayers and thoughts are always with you! Kathy

  36. #1036
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    Aug 2007
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    South Florida
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    Good thing I popped in for a quick "visit" and see a recent post from you. My prayers are with you and the Oakes family always.
    "Faith is being sure of what we hope for and certain of what we do not see". Heb 11:1

  37. #1037
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    Sevenoaks, Kent
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    Really Great to hear from you Paul. Wishing you all well and good luck with the pub.
    Dave Hanson
    Found lump 18/02/2011
    Ultrasound confirmed mass 23/02/2011
    CT Abdomen, pelvis, chest (clear) 24/02/2011
    Left I/O 1/03/2011
    99% Seminoma <1% Unknown germ cell 10/03/2011
    Staging T1 - 1A 10/03/2011

    2 month - 27/04/2011 - All clear!
    5 month - 16/07/2011 - All clear!
    9 month - 22/12/2011 - All clear!
    14 month - 22/12/2011 - All clear!


    Yesterday was history, tommorrow a mystery, but today is a gift. That's why it's called the "present"

  38. #1038
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    Feb 2006
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    Australia
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    Hello everyone, not sure what to say , life with out Patrik is still so very hard. We still have the pub and is doing good. Every day I drag my self out of bed and help Paul run the pub, it does not get any easier it gets worse as time goes on. I hate having to face the world just want the world to go away, miss Pat so much so don't want to do Xmas day . Love Kay

  39. #1039
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    So sorry I can't write any thing nice in this post but truth is life does not get any better over time

  40. #1040
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    Quote Originally Posted by lost parent View Post
    So sorry I can't write any thing nice in this post but truth is life does not get any better over time
    It's just too soon, Kay. It will get better, but it will take longer than this. This first Christmas will be difficult, I don't think there is a way to sugar-coat that. Next year should be a bit better. It takes time to grieve, & the closer the person, the more time it takes....

    I wish I could be more help.

    Dave
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP

  41. #1041
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    I am so sorry, Kay. Have you sought bereavement counseling to help you? As hard as it is now, I'm sure Patrik would want you to find happiness.
    Scott, scott@tc-cancer.com
    right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


    This year, I recognize my 10th cancer anniversary by joining Team LIVESTRONG for RAGBRAI, a weeklong, 406-mile bicycle ride across Iowa.
    Your sponsorship donation funds LIVESTRONG Foundation services for people facing cancer today. Please give now!

  42. #1042
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    North Carolina
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    When I was first diagnosed with TC I was not worried about myself but those that would be left behind. My prayers are with you and all of our TC family that have lost their loved ones this year. As impossible as it seems please remember how blessed it was to have Patrik and how blessed you still are with an awesome family. We know this from how you have shared Patirk's story and the family was always there for him. I know you will not see him again on this side of eternity but the other side is for...........eternity.
    Tony

    Diagnosed 4/12/12
    AFP 31, HCG 32
    I/O 4/25/12
    Nonseminoma Stage 1S
    Embryonal Carcinoma 95%, Yolk Sac 5%
    Lymphatic Invasion, Markers did not normalize
    BEPx3 Finished 8/5/12
    Post Chemo APF 2 HCG Undetectable

  43. #1043
    Join Date
    Apr 2011
    Location
    Oxford, MS
    Age
    35
    Posts
    1,134
    Kay, I am so sorry. The "firsts" are so hard. I wish I had some magic words, but Scott's suggestion of bereavement counseling is a good one.

    Our love and good wishes are with you and Paul and the kids,
    Tracy
    Tracy
    Cancer pharmacologist, caregiver blog here

    Wife to Kel, dx 12/30/11 Stage IIIc (poor) embyronal, AFP 13700, 10x11 cm retroperitoneal mass, 1 cm^2 lung met
    Left I/O 12/31/10.
    4xBEP 1-4/11, AFP=22, 5*7 RP mass, tx failed
    1.5 x VeIP 5-6/11; tx failed, AFP/b-hCG rising
    Salvage RPLND @Indy 6/29/11, metastatic mixed germ cell tumor with yolk sac, seminoma and teratoma
    Remission! AFP steady since 9/2011; 1.5 years ALL CLEAR

  44. #1044
    Join Date
    Dec 2006
    Location
    Gaithersburg, MD
    Age
    38
    Posts
    5,280
    Kay, no doubt this is really difficult, and I am deeply sorry about these struggles. Definitely seek help if needed. Talk to people. Don't keep the feelings packed in.

    As always, we are here backing you all.
    "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
    11.22.06 -Dx the day before Thanksgiving
    12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! Final follow-up: 07/2014.
    Please support my fundraising efforts for the 2013 Austin LIVESTRONG Half Marathon!


  45. #1045
    Join Date
    Oct 2007
    Location
    Charlotte, NC
    Posts
    1,062
    Kay, I am sitting half way around the world from you and saying and feeling the same things. People especially mommas that have not experienced what we have dont understand the depth of the pain. I will do the only thing I know to do and that is hold you in my heart today as I know you will do also for me.

    much love,
    Pam
    Son Les diagnosed 5/7/07-Right I/0 5/9/07-Stage 3C Non-seminoma Mixed Cell Germ Tumor-Tumors in liver, lungs, lymph nodes, brain-4XBED Finished 7/31/07 HCG 9 tumors smaller, brain lesion gone-9/30/07 HCG 999-TIPx4 started 10/2/07, IU 11/29 Told he had Choriocarcinoma Syndrome HDC and Stem Cell Transplant to begin 1/3/08 Finished Transplant 3/1/08 HDC and Stem Cell Transplant Failure 3/20. 4/17 RPLND & Liver resection, Molecular profiling of tumor, 6/2 Hospice Services- Passed Away 12/12/08

  46. #1046
    Quote Originally Posted by Scott View Post
    I am so sorry, Kay. Have you sought bereavement counseling to help you? As hard as it is now, I'm sure Patrik would want you to find happiness.
    Please heed Scott,s advice, sometimes it takes someone with training and experience to help overcome what you have endured.
    You guys have touched countless lives, best wishes.
    Bruce

  47. #1047
    Join Date
    Jan 2006
    Location
    Delray Beach, FL
    Age
    49
    Posts
    387
    Hi Paul and Kay -

    It has been a while since I have been on the forum. I am so sorry to just now learn of Patriks passing. I feel blessed that I had the opportunity to meet you both and patrik while you were at disney in CA. The other day I happened to be looking at the footy that you brought and gave my son. Maybe that is why I thought of checking the forum. I don't have any words, other than a sincere thank you for providing such inspiration to me over the years and I'm certain many others.

    pete from florida
    - lump first noticed 11/20/2005
    - I/O right Dec 8, 2005
    - 95% embryonal / 5% seminoma
    - normal markers PRE surgery
    - no vascular invasion, tunica free of cancer, epididymis free of cancer, lungs free, lymph free
    - Stage I diagnosis
    - surveillance
    - mid feb '06, beta hcg slightly elevated = 4.6...small enlarged lower node seen on CT scan...
    - 3BEP began feb 20, 2006
    - finished 3 BEP, last bleo, april 17, 2006
    - CT scan, blood markers, chest..all clear
    - back on surveillance

  48. #1048
    Join Date
    Feb 2006
    Location
    Australia
    Posts
    195
    Hi Everyone

    Just thought Id pop by and say hello. Its been nearly 12 months since Patrik left us and it hasnt been easy. We bought the pub and I retired from the construction industry. Needed to spend time with Kay & kids and just take each day as it came.

    Thanks for all the kind words, we seem to have got through most of the bad times and are starting to pick ourselves slowly up. Pub keeps us busy and we have met some really nice people who took Pat to their hearts as we named the public bar after him.

    Time just seems to go on and its hard to believe that its been nearly 12 months but we just keep taking each day as it comes. I think the hardest thing was cleaning out his room but we have kept mosy of his prized items and have given other items to people who meant alot to him during his short life. They were extremely happy to get them.

    Anyways I dont know what to say really, just that we are still here and starting to cope better. I think the next few weeks will tell though...

    Paul Oakes

  49. #1049
    Join Date
    Apr 2012
    Location
    North Carolina
    Posts
    130
    Thanks for the update Paul. We will be praying for you guys over the next few weeks.
    Tony

    Diagnosed 4/12/12
    AFP 31, HCG 32
    I/O 4/25/12
    Nonseminoma Stage 1S
    Embryonal Carcinoma 95%, Yolk Sac 5%
    Lymphatic Invasion, Markers did not normalize
    BEPx3 Finished 8/5/12
    Post Chemo APF 2 HCG Undetectable

  50. #1050
    Join Date
    Apr 2013
    Location
    Iowa
    Posts
    20

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