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He is just 7 Years Old

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  • He is just 7 Years Old

    I wanted to post this for my forum family- I ask those of you who are friends with me on Facebook not to comment there about this at this time. I just do not have the strength to respond to all those people and listen to my phone chirp.

    We are at CHOP, Children's Hospital of Philadelphia. My son Thomas is sedated and in MRI now. On Monday he had surgery to remove an infected and inflamed lymph node right groin. It was unresponsive to various iv antibiotics.

    We just met Division Chief oncology Dr. John Maris. He said pathology came back a rare atypical soft tissue sarcoma. They do know it it NOT rhabdomyosarcoma, Ewing or Ostero or Desmoid- Desmoid is what Majbritt my wife had. They will get a firm diagnoses tomorrow. They are sending the slides to HUP and Dana Farber for second reads.
    None-the-less, the treatment does not change for the different atypical sarcomas. He will either have chemo, radiation or additional surgery.

    They do know that they did not get a clear margin during the last surgery, and best we can expect is another, more intense surgery that may have lasting effects. It may also be curative. He said the removed mass was the primary. They did not know it was cancer then, just an infected inguinal lymph node.

    They do not believe it is metastatic, but MRI and tomorrow's PET Scan will be definitive.
    He may be a candidate for the proton therapy if radiation will be required.
    Also, we- as a family are going to look into the genetic testing program they have here to see if Hannah is at risk- and to determine what else we may be up against.

    Getting Thomas healthy is priority and WILL happen.
    We just have some work to do to get there.

    This team at CHOP is really good, I feel good about this and we think Thomas will have a complete recovery and live a perfectly normal life.

    I can tell you the care and support services we are receiving here are exceptional.

    The chest is clear, he had a CT this morning. See attached.

    Next year my LiveSTRONG Team will have 3 survivors from my family leading The Already Balders.
    Attached Files
    Stage III. Embryonal Carcinoma, Mature Teratoma, Choriocarcinoma.
    Diagnosed 4/19/06, Right I/O 4/21/06, RPLND 6/21/06, 4xEP, All Clear 1/29/07, RPLND Incisional Hernia Surgery 11/24/08, Hydrocelectomy and Vasectomy 11/23/09.

    Please see a physician for medical advice!

    My 2013 LiveSTRONG Site
    The 2013 Already Balders

  • #2
    Lots of thoughts and prayers from north of the border. This is unfair but you are all fighters and will destroy cancer again.
    Seminoma stage 1b
    Surveillance
    8month scan shows 15mm by 16mm deciding on treatment
    Radiation 10 treatments 34gy begin Aug 21
    all clear december 2009

    Comment


    • #3
      Sending every positive thought your way, my friend.
      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


      Your donation funds LIVESTRONG Foundation services for people facing cancer now. Please join me!

      Comment


      • #4
        I know how difficult it is to have a child with a serious medical condition. The love between you and Thomas is incredible in that photo. I am sending my best wishes to both of you.

        Diane
        Cook/Maid/Chauffeur/ATM Machine/Personal Asst. to Austin

        12/07/11 I/O AFP: 291 hCG: 151
        12/08/11 CT Scan, Xrays - clear
        12/15/11 Non Seminoma Stage1-B
        EC, Teratoma, Yolk Sac, Intratubular
        4/21/12 Relapse- Start 3XBEP
        6/25/12 Finished BEP
        7/02/12 Markers and CT Scan normal
        10/3/12 3 month post-chemo check-up - All Clear!
        2/28/13 8 month post-chemo check-up - All Clear!
        6/30/13 ONE YEAR- ALL CLEAR!!
        2/14/14 20 month post-chemo check-up - All Clear!

        Comment


        • #5
          So hard for parents to go through a serious illness with a child....especially 7 years old. Youre all in my thoughts and prayers...

          Lori
          Eli s mom
          6/15/12 left i/o
          50%yolk sac 35%embryonal 15%seminoma
          No lvi markers back to normal
          stage Ia surveillance
          8/12 chest xray markers normal
          9/12 ct scan enlarged retroperitoneal lymph nodes 3cm
          10/12 markers elevated
          Stage IIb
          10/15/12 bepx3
          Lori
          Eli s mom
          6/15/12 left I/o
          50%yolk sac 35%embryonal 15%seminoma
          No lvi markers normalized
          9/12 ct several enlarged retro peritoneal lymph nodes 3cm
          10/12 markers elevated
          10/15/12 3xbep
          1/13 complete response
          Surveillance

          Comment


          • #6
            Your attitude is awesome and I am sure that strength will transition to your son. Prayers and best wishes to your family.
            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

            Comment


            • #7
              Hi,

              Thinking of you all at this time and will be saying lots of prayers for Thomas's recovery.
              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 November 2013- CT and markers normal http://www.tc-cancer.com/forum/core/...es/biggrin.pnghttp://www.tc-cancer.com/forum/core/...es/biggrin.pnghttp://www.tc-cancer.com/forum/core/...es/biggrin.png

              Comment


              • #8
                I send healing thoughts and prayers to your son, and strength to your family.
                Heidi

                Husband - age 51
                10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; -HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
                11/1/10 4X BEP
                12/7/10 End Cycle 2 - -HCG = 2; AFP = 4.6; LDH = 139 ; 4XBEP changed to 3 as tumor now 2.1 x 3.7 cm
                2/15/11 - Post-chemo PET ; residual 8 mm x 2 cm
                6/29/11 - Lung nodules stable or smaller, chest mass continues to shrink & markers all normal
                Surveillance since 6/11

                Comment


                • #9
                  Here is the latest on Thomas, 11/1/2012 All Saints Day:

                  So, preliminary review of his MRI report is good, there does not appear to be sign of spread. Today's PET scan is postponed until tomorrow because they made a mistake with his iv yesterday (They were gracious enough to admit it)- and gave him sucrose which interacts with the PET drugs.. the PET can be concerning, and if anything lights up that tissue will have to be removed.

                  We just met with the surgical oncologic team, and he is going to schedule the second surgery for 11/8/2012. They need to remove the tumor bed and any sarcoma tentacles.
                  We may be discharged tomorrow after the PET to rest at home. We hope so, he is so Homesick.
                  We still do not have a pathology report yet.


                  Best we are hoping for right now is the next surgery (going straight to chemo would mean advanced spread)- and this surgeon is a rock star- John Dormans, so it might take a couple of days to get on his schedule.

                  I hope we will go home over the weekend.
                  I can tell you the care and support services we are receiving here are exceptional.
                  We are going to be strong and beat this thing right back to the devil. I've already faced him and won three times, he is afraid of me. Going after my son is a cheap shot, now I'm pissed and I will rip his heart out and give it to Jesus when I'm good and ready.
                  Last edited by Already Bald; 11-08-12, 01:20 PM.
                  Stage III. Embryonal Carcinoma, Mature Teratoma, Choriocarcinoma.
                  Diagnosed 4/19/06, Right I/O 4/21/06, RPLND 6/21/06, 4xEP, All Clear 1/29/07, RPLND Incisional Hernia Surgery 11/24/08, Hydrocelectomy and Vasectomy 11/23/09.

                  Please see a physician for medical advice!

                  My 2013 LiveSTRONG Site
                  The 2013 Already Balders

                  Comment


                  • #10
                    My heart goes out to you all, Joe. This has got to be so hard, and I know how strong you are after all you have been through. You will be strong for Thomas and we will all be here for you. I am just a drive up the Schuylkill if I can help you. I know Penn and CHOP and would be glad to make the trip if you need something. Fight on, Thomas! Praying for you all.
                    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

                    Comment


                    • #11
                      From My Sister, who is Dir of Curriculum PENN Medical School

                      Hi everyone-
                      good news from the pet scan, the only hot spot was the tumor location. the only thing needed now is the surgery and surveillance over the next five years. Pathology is still unknown, but Dr. Maris assures Joey and Majbritt that the pathology is irrelevant as to treatment.

                      Thomas was so motivated to come home tonight, he chose to do the pet scan without sedation and stayed 'still like a statue' for the entire procedure. What a trooper!

                      Best,
                      Anna
                      Stage III. Embryonal Carcinoma, Mature Teratoma, Choriocarcinoma.
                      Diagnosed 4/19/06, Right I/O 4/21/06, RPLND 6/21/06, 4xEP, All Clear 1/29/07, RPLND Incisional Hernia Surgery 11/24/08, Hydrocelectomy and Vasectomy 11/23/09.

                      Please see a physician for medical advice!

                      My 2013 LiveSTRONG Site
                      The 2013 Already Balders

                      Comment


                      • #12
                        Here's to rapid recovery from surgery, and may every surveillance check bring more good news!
                        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


                        Your donation funds LIVESTRONG Foundation services for people facing cancer now. Please join me!

                        Comment


                        • #13
                          You have a brave son, Joe. I'm just so sorry that this has entered your lives yet again but with parents like you, Thomas will get through this. Sean and I are thinking of all of you. Thank you for keeping the forum family in the loop.

                          Hugs,
                          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

                          Comment


                          • #14
                            What bravery you all have shown, i am happy that surgery should knock this outta the park. Sill sending thoughts and prayers you way for a speedy recovery after surgery.
                            Seminoma stage 1b
                            Surveillance
                            8month scan shows 15mm by 16mm deciding on treatment
                            Radiation 10 treatments 34gy begin Aug 21
                            all clear december 2009

                            Comment


                            • #15
                              Only just picking up this thread. Your strength during all of this is an inspiration to us all. Our thoughts and prayers are with you at this difficult time.
                              Diagnosed Jan 2008 - primary retroperitoneal tumour and slight spread to lungs. AFP-400+ & BHCG-4000+
                              1/30/08 - Began 4XBEP.
                              4/25/08 - Chemo finished - AFP normalised and BHCG-3.
                              6/19/08 - Left I/O & RPLND. No active cancer found and small amount of differientiated teratoma. Markers normalised.
                              12/14/12 - Latest markers normal.

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