new to this 29-08-10

snipeford
snipeford Member Posts: 3
hi guys my name is jason and im 39 yr old solo dad with a 13yr old daughter who live in new zealand.8 weeks ago i was diagnosed with follicular lymphoma and its ben pretty full on since then had every test under the sun.I started r-chop on the 8-9-10(wont 4get that date got hit by a big aftershock jus b4 bein hooked up)it all went pretty good not many side effects.Im headin back in today for round two hope it goes as well.My daughters mother passed away when she was two so you can imagine she as had a lot of questions and worries her wee mind out.what can u do to reassure them everything guna be ok?Neway il leave you to it hope use can give me sum answers keep on smilin....

Comments

  • allmost60
    allmost60 Member Posts: 3,178
    Welcome
    Hi Jason,
    Glad you found this group and I hope we can answer most of your questions. In my opinion, with your daughter being 13, she is old enough to understand what this cancer consists of. I'd share with her what your treatments are like and what side affects will be the hardest on you. Make sure she knows that there is nothing you two can't conquer together, and tell her you will always be honest with her about everything. Kids can handle alot as long as they arn't put on any guilt trips or expected to handle more than necessary. Sorry for the delay in responding, but if memory serves me right, the U.P.S guy showed up here yesterday right after I read your post. I hope you will keep posting and let us know how things go with you. I am 60, with F-NHL stage 3-grade 2-indolent, diagnosed in June 2010.. Just had my 2nd round of chemo last week...CVP-R. I don't know alot about this cancer or what to expect, but I'm always ready to listen and learn and above all lend support.
    Best wishes...Sue
  • merrywinner
    merrywinner Member Posts: 626
    Hi Jason
    Welcome. Glad you found us. It sounds like you are on your way treatment wise and also sounds like things are going OK. Best of luck. As to your daughter bring her to an oncology appointment with you. I brought both of my daughters, one who was still in high school and the MD was great with them and opened up the floor to them, allowing them free reign to ask all the questions they wanted. He was great with them and I know it helped them tremendously. Hope this helps some and all the best. Mary
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    Welcome
    Jason,
    Glad you found this site. I do not have any children at home, but I have 2 boys 30 and 27. I know you need support with your young daughter right now. Try to assure her that everything will be ok, because it will. They have come so far with this hodgkins disease. I have follicular nhl stage 4 and just finished my last treatment of r-cvp, at least I hope there won't be a round 7 and 8. You will have up and down days all during treatment. You can read some of the post and see that. You may want to let your daughter know that. Just let her know that all will be ok in the end after all the treatment. Keep posting so we will know how you and your daughter are doing. We will be here to help and support you in any way we can. Someone here can always help you with any questions you may have. John
  • miss maggie
    miss maggie Member Posts: 929
    COBRA666 said:

    Welcome
    Jason,
    Glad you found this site. I do not have any children at home, but I have 2 boys 30 and 27. I know you need support with your young daughter right now. Try to assure her that everything will be ok, because it will. They have come so far with this hodgkins disease. I have follicular nhl stage 4 and just finished my last treatment of r-cvp, at least I hope there won't be a round 7 and 8. You will have up and down days all during treatment. You can read some of the post and see that. You may want to let your daughter know that. Just let her know that all will be ok in the end after all the treatment. Keep posting so we will know how you and your daughter are doing. We will be here to help and support you in any way we can. Someone here can always help you with any questions you may have. John

    Hi John
    So very glad you finished your last treatment of R-CVP. Of course, wishing no round 7 and 8.

    Question: Was your original DX, follicular nhl, stage 4? Still learning, many thanks
    Maggie
  • Sparkyz
    Sparkyz Member Posts: 17
    Hello
    Hello Jason, I am very Sorry for your Diagnosis. I am also 39 years old. I am married with 3 kids. I was diagnosed last October 09 with Stage 4 grade 1-2 Foll B-cell. I was put on Treand plus Rituxan for 6 months. I am now in Maintenance for 2 years.

    My two daughters are 18 and 15 and my son is 11. When I was first diagnosed my son would not leave my side. My middle daughter asked allot of questions and my oldest daughter didnt want to talk about it or she would get upset. Even within the same family all kids are different so you are going to have to try what's best for your daughter dependant on the type of personality she has. For my son I actually took him to a chemo session with me along with my Father. Once he saw I was not being hurt in any way the mystery went away and so did his fear. He learned to accept it as part of life and not focus on the sadness or mystery involved. On chemo weekends if I was really out of it friends would come over and hang out with the kids. So if you have family or friends that can help and take up some of her time. This will help I think to keep her mind off things when your down.

    Always be honest with your daughter when answering questions and even if a question is hard to answer try and put a positive spin on it if you can. For anyone dealing with Cancer there is so much anxiety and fear and so many questions. I can only imagine it would be more for a 13 year old daughter. Be as positive as you can be but at the same time always be honest and just continually show her Love.

    I do applaud you for joining this website right away. Proactive is definately the way to go. I waited until just the other day to join and I wish I joined a long time ago. I know you are a solo Dad but please remember you are not alone. You have thousands fighting the same fight every day and winning and you will win as well.

    Best Regards,

    Mark (Sparkyz)
    Connecticut, USA
  • COBRA666
    COBRA666 Member Posts: 2,401 Member

    Hi John
    So very glad you finished your last treatment of R-CVP. Of course, wishing no round 7 and 8.

    Question: Was your original DX, follicular nhl, stage 4? Still learning, many thanks
    Maggie

    diagnosis
    maggie,
    Yes, my original diagnosis was follicular NHL grade 1 stage 4. I get my scan Oct.13 to see what,if any activity is left. Hope its none, but will have to wait and see. John
  • truckingalong
    truckingalong Member Posts: 445 Member
    Getting warmed up
    Hi,

    I understand what you are going through. What I find helpful is to talk and sort out my own emotions with my family members or friends who I feel close with then I prepare myself better to talk with my kids about my condition. I have Hodgkins Stage IV over a month ago and began ABVD chemo 8/23. My kids who are college aged surprised me and expected me to be positive all the time, smile.. they became more caring. As in your case, your daughter may be going through challenging teen years and has a lot on her mind so follow her lead. I lost my (also single) mother to ovarian cancer when I was 17 and I remember being preoccupied with my friends. People were watching her so I knew and appreciated that she was being taken care of (even though I could have visited her more often, I was not emotionally mature or ready to do that). One thing I liked was that I lived with mom so I had a lot of quality time with her while she was ill. But today we live longer and expect to be in remission with this condition. I have learned to think positive. Good luck! Hope this helps. Keep me posted - we have a lot to share. Take care, Liz
  • miss maggie
    miss maggie Member Posts: 929
    COBRA666 said:

    diagnosis
    maggie,
    Yes, my original diagnosis was follicular NHL grade 1 stage 4. I get my scan Oct.13 to see what,if any activity is left. Hope its none, but will have to wait and see. John

    Hey John
    John, I always thank you for your input. To tell you the truth, aside from getting a DX of NHL, I was a bit relieved to hear my DX was stage 1, low grade, marginal B Cell NHL. I suppose this is indolent. But, then the more I did research, I came to find out this is chronic, there is no cure. Yes, yes, I do realize it is treatable. I am very scared at this time. Don't get me wrong, I am not depressed. I am very hopeful. Thanks again.
    Maggie
  • 711tom
    711tom Member Posts: 44
    jason, sorry to hear about
    jason, sorry to hear about the DX but I am glad CHOP is ok so far. I was DX in 1993 at 34 years with the same. Had CHOP and was in remission until 2001. Have had a few other treatments since (rituxan, Trenda) but I never really got sick except for a little from the treatment. I went to my ONC yesterday and they are going to start me on Bexxar in two weeks. My ONC is confident that I will get a good durable response as he stated you are the healthiest sick person I know. Anyway the point of my rambling is tell your daughter that we all react differently and with the new drugs out and whats on the horizen, you could be around for a long long time. My last few treatments (since 2001) were fairly easy as they can mitigate most of the nastyness. Stay strong but let your daughter help in her support, she, like my wife, need to be a helpful part of the process, lots of hugs and love. Stay strong