The Leukemia & Lymphoma Society - Fighting Blood Cancers
75 Replies Latest reply: Dec 6, 2011 3:02 PM by SheebaKersten RSS

WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????

jaredsdad Registered Users
Currently Being Moderated

I've been playing around with this web site and other cancer sites. Where are all the 19-22 year old adults and  their parents? I am frustrated that either discussions and  support (not just here but other sites and Cancer Organizations) are for  young children or older adults.  I have a 20 yr old son, a Jr in  College, he can't be that unique.  There have to be other people this  age and their families dealing with this.  I know there are similar  things we all go through (during this journey), but, there are things  that he and we as parent's are dealing with that are unique to this  period in life. The parent of a 10 yr old, doesn't really understand  what it's like to be dealing with school issues of a college student.   Speaking with a parent who had a  20 yr old in 2006 (and is now 26, and  finished with treatment) is not the same as talking to someone dealing  with this issue NOW.  Having my son matched up to a 32 yr old survivor  who was DX 12 years ago - cannot really relate.

 

While I truly appreciate all the threads and support,  I've come into contact with (and it's been very helpful and you've all  been wonderful), it seems there is a huge void here, like we don't  exist.  I/we/he, need to be able to reach out to people with similar  issues.  WHERE ARE YOU????

 

I'm going to post this in some of the other forums,  to see what kind of comments I get -

 

Thanks for  understanding

 

Jared's Dad (Mark)

  • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
    mtbikernate Registered Users
    Currently Being Moderated

    Fact is, someone who is 32 is still classed as a young adult, especially in the sense of cancer diagnosis and survivorship.  And especially if that 32y/o was DX 12yrs ago, the person has BEEN THROUGH many of the things your son is going through now.  Okay, so they're going to give a slightly different perspective on things that some years have brought on, but that person is no less qualified to be there to offer support when they went through many of the same things.

     

    I'm 29 and a 1yr survivor.  I can't speak for everyone else my age-ish, but I'm busy living.  I'm finishing graduate school, riding my mountain bike, and enjoying the time I now have as a result of achieving remission.

     

    My parents have their own situations, and are not terribly web-savvy to begin with.  They received the support they needed in person.

     

    I think the situation you find yourself in is mostly explained by the life stage people find themselves in at the "young adult" stage.

     

    I know I find more young adult survivors (and fighters) elsewhere on the internet, and not here.

  • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
    danswife Registered Users
    Currently Being Moderated

    Jared's Dad,

     

    Go to www.ulmanfund.org

    One of their representatives came to the hospital to speak to my husband.  H is also considered a young adult...although there is a huge difference between your 20 y.o college student and my 33 y.o husband and father of two .  This organization has some really great information, access to one-on-one support, scholarship info for cancer survivors, university outreach...you'll have to check out their site.  Their services are too numerous to mention.  I hope you and your son are able to find some support!

     

    Darcy

  • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
    mommabear Registered Users
    Currently Being Moderated

    Hi Mark....My daughter was recently diagnosed a couple of months ago with AML....she's 19.....I understand your frustration with the limitation of networking and support for these young adults....In the area that we live in, our city is great with the very young...and the senior population living with cancer, but there is certainly a big disconnect for the young adults.  I feel that for my daughter's sake, it would be great to connect with other young people that are going through the exact same diagnosis as herself..because truly, who else can understand the emotional roller coaster ride they're going through....I mean as a parent we are dealing with our own emotions having a child with cancer, but it's different.  We're the adults that have the maturity and the forsight....at 19.....they have today....and that's pretty much all they can comprehend.  How is your son doing now?....I just started on this site...so I've not really navigated my way through all these threads....We are in the process of waiting for a confirmed doner for a stem cell transplant.  My daughter also has another blood disease that she was born with...congential neutropenia.....the drug she's been on for 19 years to keep her healthy for this blood disease..is actually the drug that has now caused the AML. A double edged sword you might say....Both of these blood diseases are life threatening but currently, it's her neutropenia that's been causing more harm to her, as we had to cut back on the drug to treat this...to keep the cancer cells at bay.....It's so frustrating because we also can't start chemo until they find a doner.....She will only be able to have the chemo prior to transplant as her marrow is too comprimised with her other condition..the concern is that regular rounds of chemo used normally to treat AML..poses too much risk to her wellbeing...she just wouldn't be able to recover between the sessions.  If you've had some luck in other forums meeting up with other parents/young people our kids age....would you mind passing the information along?.... Cathy

    • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
      jaredsdad Registered Users
      Currently Being Moderated

      Cathy

       

      Very sorry to hear about your daughter.  It's sad that we have to meet new people due to struggles like this.   I haven't really had much luck finding any site for young "adults".  The best so far is i2y.com . If your daughter is into FACEBOOK, then that's that way to go.  It seems like most young adults don't seem to deal with their situation with others on a physical one to one relationship, they mostly do it via the internet.  I2y also has a link to IMERMAN ANGELS, they are an organization that can possibly match you to a survivor as a mentor, who has gone through similar treatment, etc.  A lot of the support I've gotten is just floating around here.  While most of the parents here have smaller children, the parenting part of this doesn't really change no matter how old they are.  As far as Jared's condition, right now he's good.  Our Onc.  has been holding up his treatment until his abscess heals, which is just about there.  So, starting Friday he'll start a new series of Chemo, hopefully he won't have any major complications.  We've located a Dr. out in Ohio (where Jared goes to school) who's willing to take on his case and work with our Dr here to coordinate treatment, problems, etc.  So going back to school is now possible.  Jared has some good support at school, so hopefully he'll be able to deal with it.  But, we all agree that 1 major hospitalization, or the inability to deal with issues, he's coming home (for the semester).  With T-Cell, the 1st 2 1/2 months are the hardest, we're just starting month 2.  He'll be at school and my wife and I will be nervous wrecks.

       

      Feel free to contact me anytime, wish you luck

       

      Mark

  • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
    tamithurman Registered Users
    Currently Being Moderated

    Hi Mark. I am completely at the same place you are. My 21 year old son was diagnosed on March 26, 2010 with AML. We are still shocked and stunned. Although he left college and was working full time, he has only been out of the house for maybe nine months, but living a few minutes from us.  It has been a rocky road. My son has complex cytogenics, which meant he had to have a stem cell transplant.  Luckily, we found a match within a month and he had his transplant on June 29 and stayed in the hospital for 28 days. Unfortunately, he was home for two weeks when he developed some Graft versus Host disease and was hospitalized again last week.  Hopefully, he will be coming home on Wednesday.

     

    We can compare notes if you like. It's been the most difficult thing in our life. Watching my strapping son who has never been sick in his life go through this is almost unbearable. I hope Jared is doing well.

     

    Tami

    • Mom in Canada out there as parent of 22 year old - looking for a connection too
      Kim-Zack'sMom Registered Users
      Currently Being Moderated

      Tami and Mark-

      This is my first attempt at trying to connect with anyone on line and I too am having trouble finding any resources that target our family's needs.  My son, Zack, was diagnosed on March 11, 2010 with B cell ALL.  He was in college in Arizona at the time.   His diagnosis came totally out of the blue after a week to 10 days of feeling  feverish and tired.  We thought the worst it could be was mono...how wrong we were!  After stabilizing him in Arizona, we flew Zack home to Canada for treatment here.  He is on the pediatric Dana Farber protocol.   Zack had been in Arizona for over 3 years so he has been summarily yanked out of his new life and has returned home with few friends or connections with peers as most of the kids from his past have moved on.   There are days I am not sure I can stand watching him suffer another moment.   The worst, by far, are the steroids.  He is on them now and is very agitated.  He feels as though he is crawling out of his own skin and for the one week out of three that he is on steroids, he is anxious and depressed.   I am struggling with how to support him and it is heartbreaking to watch.  Any suggestions that anyone out there may have on how to support young adults during the steroid weeks would be greatly appreciated.  He has a follow-up appointment with the psychiatry department at the cancer hospital where he is being treated in two days.  I have heard that some ALL patients respond well to potassium supplements and I will ask them about that.  He doesn't want to go on heavy duty anti-depressants but he has another 17 weeks to go in the consolidation phase so he has many rounds ahead and I am uncertain whether he will be taking steroids during the maintenance phase of treatment that will be another 15 months.    I feel so alone in this at times.  We have a huge support network but there is not a whole lot other people can do because Zack is only comfortable with very few people when he is on the steroids, in particular.  Hoping you are still out there....

       

      Kim-Zack'sMom

      • Re: Mom in Canada out there as parent of 22 year old - looking for a connection too
        jaredsdad Registered Users
        Currently Being Moderated

        Kim

         

        How is Zack with using Facebook, is he willing to talk to people there.  If yes check out  I2y.com, he might be willing to talk to someone via that.  Also, through i2y they have a link to Immerman Angels, they possibly can find a mentor for Zack.  Jared, my son, doesn't want to talk to anybody via facebook, and unfortunately, due to Jared's type of lymphoma it's been difficult finding a mentor.  In, my research, I've found that the 18-25 year old cancer patients tend not to talk to others about their situation.  I've asked Jared to talk to someone, but, his response, is "why would I want to talk to a complete stranger, who has no idea what i'm going through".  Someways, he's right, someways he's wrong. 

         

        Jared has been off the steroids for a couple of weeks, but, is going to start them up again shortly.  That's going to be a lot of fun.

         

        We're going to take Jared back to college this Wed, we've been lucky and found a really good Ped. Oncol, 20 min from school, so he can continue his treatment with an office that knows what they are doing.  He has a lot of friends at school, and we have some family friends in the area that can look in on him.  So hopefully he will have the support there he needs.  His mom and I will be stressed, but, he'll be ok.  I guess that's all we can ask.

         

        Stay around this site, even though we are dealing with a young adult and most of the caregivers in the CHILDREN'S FOrum have young kids, I've still learned a great deal from the people here.  And it's a great place to vent.

         

        Hang in there

         

        Mark

        jaredsdad

         

         

        Date: Sat, 14 Aug 2010 19:57:58 -0400

        From: communityreply@lls.org

        To: msilverman73@hotmail.com

        Subject: Re: Mom in Canada out there as parent of 22 year old - looking for a connection too New message: "WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????" Re: Mom in Canada out there as parent of 22 year old - looking for a connection too

         

        jaredsdad,

         

        A new message was posted in the thread "WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????":

         

        http://community.lls.org/message/66662#66662

         

        Author  : Kim-Zack'sMom

        Profile : http://community.lls.org/people/Kim-Zack'sMom

         

        Message:

         

        • Re: Mom in Canada out there as parent of 22 year old - looking for a connection too
          Kim-Zack'sMom Registered Users
          Currently Being Moderated

          Thanks for the response and for the Facebook suggestion.   He seems to be reticent about reaching out to other young adults with cancer, although it is a link to his Arizona friends he had to leave when he returned home for treatment.  I will pass along the website information you provided.  I also picked up the phone and called the Lymphoma and Leukemia Society today and was given information about an organization created for and by young people with cancer.   Zack linked into the site and it had lots of video clips and seems to be pretty interactive so hopefully he will be able to use that as a resource.   The woman I spoke to at the Leukemia and Lymphoma Society e-mailed right away with information about a mentor she is lining up.  She also offered up some volunteer opportunities that would allow him to get out of the house and engaged with the world outside our front door.  He still needs pushes to follow through which is unusual for him but, for now, I'll keep doing that as this disease zaps him of his energy and initiative much of the time. 

           

          Glad to hear that Jared will be returning to school and that there is support there.  Returning to a more normal existence will undoubtedly help.

           

          Be well,

          Kim

  • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
    _Kim_ Registered Users
    Currently Being Moderated

    Hi! Im 19 and was diagnosed with ALL on June 25.  I am a sophomore in college but cannot go back until later in treatment.  Im here if you have any quetions or just want to talk but Im relatively new at this whole thing too At least we know we're not alone!



  • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
    queenbee Registered Users
    Currently Being Moderated

    hi jaredsdad,im 23 yrs old and i am a 1 yr & 3 mos. ALL survivor. i was diagnosed when i was 21. i too felt the same way. i felt like all the attention was towards older adults and children fighting cancer but what about me? what about us? we (obviously) can get cancer too! this board really helps me, this is where i come when i just need someone to understand. One thing that ive learned is that even though we are all different ages the one thing we have in common is CANCER!  we all have had cancer! we ALL know how it feels the first time we were told "you have cancer", we've have/had the same fears, cried the same tears & so on. Ive dealt with things that i didnt think some would understand because they may not be around my age but i was wrong because i have been given some of the best advice and encouragement like no other.

  • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
    Ayame Registered Users
    Currently Being Moderated

    I'm 29 and I was diagnosed at 24 with APL. I go to a lot of young adult survivor retreats. I find that more meaningful than going on the internet. The two that I have been to that helped are:

     

    Minnie Pearl Retreat in Tennessee- this one was most awesome because there were people of different ages at diagnosis and we all met in our respective groups to deal with our specific problems. Like they had people diagnosed as babies, young children, teenagers, and young adults. All of us were now young adults and had different issues but it was nice to have our small groups that we were closer in age at diagnosis and still be accepted in the larger overall group.

     

    Camp Mak A Dream in Montana - this one was a longer trip and I feel the isolation and the time spent together allowed us to get to know one another better.

     

     

    There aren't a whole lot of young adult retreats but there are for those who want to be active (like rafting and rock climbing), just have to google it. Livestrong has retreats, planet cancer has retreats, and others.

     

     

    Hope this helps!

     

     

    Dawn

  • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
    MomtoRose Registered Users
    Currently Being Moderated

    Just wanted to add another  piece of back-to-school experience.  My daughter, then 19, was dx at the start of her 2nd semester/soph year with Burkitt's Lymphoma. Her wild ride included a couplete course of Hyper-CVAD+R, followed by an allo stem cell transplant.  She returned to college 2 years after her exit.  Since she returned to school severely immuned repressed due to steroid treatment for graft versus host disease there have been some lessons learned.

     

    For two years we had been in a medical / support / caregiver enviornment - you know what I describing here.  So when my daughters went to check out the house that she would be sharing with 2 other soroity sisters, they found an undisclosed cat, and a household eviornment that was not even close to clean.  This doesn't mean anyone committed a crime...but we finally got face to face with the fact that our daughter needed control of her envoirnment.   The reason we had considered the house/roomates, was because we thought she would need others for support and one of her housemates was pre-med, but it was totally unrealistic on our part to think living with others....their colds, flus, etc or the colds, flus of their friends, could be a safe decision.  So we did bite the bullet and fortunately found a small super clean apartment with her own washer/dryer and close to school that she calls her "cave."  This sounds nice and rational now but it was all rather emotional .... and a bit hysterical (on mom's part)  .  A college campus is germy enough and she does go out with friends etc but has a safe place to return to and to stay in when she is not feeling well.  She did catch one infection that landed her in the hospital overnight but lysol wipes and the hepa filtered vac have been fighting the good fight.

     

    As to illness....my daughter has learned that "hit it hard and  hit it early"  is the way to go on any symptoms.   As a bmt patient she  has 24/7 hour access to her bmt team - so she can call whenever she has  a concern.  I know access to a knowlegable medical type was not this  easy in oncology.  But if your young adult is like mine, they are really motivated not to return to a hospital - and staying in connect with their docs/PAs etc is something they can control - and we have found it is really respected by their medical team.  She was also Rx some anti-biotics and anti-virals to have on hand - to use (only if) BMT gave her the go-ahead.

     

    My daughter also signed up with the disabilities office on campus (there are probably forms for your campus that you can access online) with letter from her doc explaining her health requirements ie - extended time for testing (exams are proctored in the disabilities office) & excused absences due to illness/medical treatments - or the presence of anyone in the classroom hacking/sneezing - she sits close to the door.  In addition there are note takers that can be accessed.  At my daughter's campus, the professor makes the announcement in class that a note taker is requested and they can acquire 1 unit of credit for community service.  My daughter is not "identified" to the class.  Some note takers are better than others - mixed experience on this.  Over time she hopes there won't be a need for assist but having the backup at this point has been helpful.

     

    Our daughter has much more to manage now than pre-cancer but we have a different student today than three years ago.  The former lackluster/party student has had to go to hell and back to sit in that classroom....she is not inclinded to let much stand in the way of her education as every professor who has her in his/her class eventually finds out

     

    The toughest part has actually been returning to a college campus looking so physically different.  She took strength training and yoga to fight the metabolic effect of the prednisone....and while some days were better than others, it really helps to have a structured workout.  Through the disabilities office was able to get some one on one work out sessions so she wouldn't be exposed to the gym germs.

     

    Hope there is a thought or idea here that helps someone else.  Wishing your families and your young adults strength for the journey - m

     

    --- as to where she goes for support.  This was really friend/family based during initial treatments that were largely in-patient.   We found all kinds of "friends" after transplant because they would go for frequent out patient treatments and there was time to talk with one another.  But even here it  was much easier for the families to make the initial contact and pass on the introductions.  Ultimately, as mentioned by others, our daughter is much more about getting back into her life than giving illness one minute more than necessary.   She is more than happy to talk - visit - or hang with anyone who needs a friend.  But when asked to join a "survivors" group she was NOT open to the idea.

    • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
      jaredsdad Registered Users
      Currently Being Moderated

      We got Jared back to school last week.  9 1/2 hours away from home is tough to deal with.  We met with the Onc. that will be taking care of him, looks like we made a good choice, she's already on top of things.  So, if anybody needs an Onc in the Toledo, Oh area use Dagmar Stein, she's the head of Ped Onc/Hem for Toledo Childrens.  Jared is living in a townhouse complex (he's a Jr.) with his own room and bathroom, so I'll know he'll keep it clean.  His roommates are somewhat neat freaks, so, I think they'll help to keep the apt clean.  I agree that his physical appearance is a tough situation, he went from a muscular 2 hour a day in the gym, athlete to a skinny frail young man.   He's one of them managers for the school men's basketball team, he got his travel packet (hopefully he'll be able to travel), and they told him they have a "NO HAT" policy at games, when he told the operations mgr, about his situation, they said don't worry, the coaches will make an exception for him.  Right now he's still having stomach issues, the chemo and stress he developed a couple of small stomach ulcers.  So eating at time tough, some meals he can eat some he throws up.  Dr's are trying to find the right mix of stuff to deal with it. It's going to be a very long year or more for mom and dad

  • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
    vlebret Registered Users
    Currently Being Moderated

    hi Mark,

     

    I have just started looking into sites.  My 21 year old daughter was diagnosed with Large B-cell non-hodkins lymphoma on September 1 and jsut finished her third treatment last week.  She has three more to go in this round.  What type does your son have?

     

    As another parent, I am sorry for the anguish and heartache it brings, there is nothing like it.  We are learning each day how to deal with new things.  Feelings, symtoms, side effects and to try to live life all at the same time.  We are coming along and are taking things one day at a time.  I think the hardest question that I can't answer for my daughter is "Why me?".  She is a very strong person, but this even breaks her once in awhile.  She is not the type that really dwells on bad things.  I thinkmost o the time she tries to forget and live her life daily to the best she can.  She says she "just wants her life back".

     

    I notice there hasn't been a lot of activity lately, have you found other sites that you have found?

     

    Take care of yourself too.

     

    Vicki

    • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
      jaredsdad Registered Users
      Currently Being Moderated

      Vicky

       

      Firstly, I'm very sorry to hear about you daughter. This is going to be a very long, and somewhat lonely journey for your Daughter and your family.

       

      Statistics show that young adults 18-29 are not supposed to get Cancer. Cancers when they happen are usually in younger children or older adults. But, when ot strikes in a young adult, it's usually an odd type and must be treated aggresively. Also, because of this small instance of cancer in 18-29 group there is very very very, little formal support online or even with the major Cancer groups. I've been in contact with Cancer Care, the Leukemia/Lymphoma Society, and others. Trying to get support for my son and my family - it's just not happening. People are very helpful, and caring, but, trying to find people and other in our situation and experience is very difficult. The closest place your daughter can check out is www.I2Y.com.

       

      I will say, that the people here in the LLS forum (I usually read in the MY CHILD HAS CANCER forum) - are absolutely wonderful - they are an incredible source of support and information -

       

      Jared was dx on June 14 - with T-Cell Lyphoblastic Lymphoma - his protocol is 15 months Chemo, then a year of maintainance. He's just about done with his 3rd cycle - he's a little behind because a bunch of complications that happened.

       

      I do have decent amount of advice/experience so far (I learn more and more everyday).  A lot more than can be put into emails, etc and I'd love to be able to help if I could.  If you wish to contact me, send me an email and we can either email, or I'll give you my cell # and we can chat.

       

      Please pass this message to your daughter for me,  you are not alone, there are others like you.  You'll have good days and bad days, and you'll never be able to answer the "WHY ME", nobody can. Unfortunately you'll never get your "old life" back, cancer changes you and your loved ones forever.  It puts lifes priority in order, you find strength in the strangest of places and times and with the oddest of people. When you feel the worst is when you have to try to fight the most.  Yell, scream, cry, laugh, don't let the feelings and emotions inside, the side effects of stress are terrible.  Keep a journal, this way you can have a place to put voice what's happening to you.  People say that that there is a light at the end of the tunnel, we'll for some of us we still can't see the tunnel no less the light at the end.

       

      Good Luck and stay strong

      Mark

      jaredsdad

       

      Message was edited by: InfoSeeker

  • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
    Hope_Floats Registered Users
    Currently Being Moderated

    My son was dx'd with T cell lymphoblastic lymphoma 12/2005 at the age of 20.  At the time of his diagnosis I too found there was no support for young adults.  It was so frustrating....At that time this forum did not exist.  It was I who contacted LLS to create this forum.  I also requested from and helped our local Gilda's club to start a young adults group.  Since that time because of the increase of young adults being diagnosed, I have been told that more and more Gilda's clubs have developed a group for young adults.  In my experiences I have found that young adults usually don't talk about their cancers much.  I don't know if it's because they just want to be accepted and be like everyone else.  Or because their peers really don't have the life experience to relate to someone so ill. In our case the chemo buddy system didn't work because my son's dx was rare they never found him a match.

     

    For anyone looking for a young adult to talk to my son said you can look him up on facebook---Chad Kirkmon....Albany NY area.

     

    As far as us parents, well, I have been all over the place.  I have a child who had cancer---so I go to to the My child has cancer forum.  I was also his caregiver so I go to that forum.  Since his diagnosis was a cross between a lymphoma and a leukemia I visit those boards. He had a stem cell transplant---so I go to that forum.  Since it's been four years since his transplant I go to the life after cancer forum.  He can't have children due to his treatment so I visit the fertility forum.  I visit this forum because like I stated it was I who requested it back in 2006.  Never the less after all this time, I really haven't found a forum that I completely "fit in"....

     

    There is residual issues...My son has never really gotten back on top of his game like he was just before diagnosis.  There are dating issues for him, to tell or not to tell, when to tell someone.  His confidence has been rocked and he's not as confident as he used to be becaue of the scars and physical changes from all the treatment.

     

    A cancer diagnosis for my son was the most devestating thing that ever happened in my life.  I was stunned, shocked, he was in the best physical shape ever as he was getting ready to play college football.  It has financially wiped me out as I couldn't work for two years and the expense of two homes during the transplant.  We had absolutely no family history of cancer, or any friends who had ever had cancer.  It was a world I didn't know a thing about.  My family and friends couldn't even begin to understand as they had no experience either.  I've learned a lot, we've come a long way, and by the grace of God my son is able to continue on life's journey.  Now, I appreciate life so much more than most.

     

    Now we try to give hope, and spread awareness for young adults with cancer.  My son bought a sports car and put a lot of money into it and he takes it to car shows to raise awareness for young adults with cancer.  We also try to raise awareness for bone marrow registry as the general population still thinks that to be a donor it hurts.  When in reality it's just like giving blood.

     

    Anyways, anyone can feel free to look me up on facebook as well....Suzie Leveille.

     

    Take care,

    Sue

    • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
      jaredsdad Registered Users
      Currently Being Moderated

      Sue

       

      We really have a lot in common, I'm dealing with the same struggles and lack of support now that you went through 5 years ago.  It hasn't changed. I've been wanting to talk to someone for a long time that's going through the same experience and nobody has been able to help find that resource.

       

      Your son and mine have a lot in common, before he was dx'd, he was also in top physical shape.  He was a 2 hour a day gym rat, manager of his College Men's Basketball Team.  Since his DX, he hasn't been able to work out, dropped 30 lbs, lost all of his muscle, very depressing for him.  I agree this age group doesn't know how to reach out for help, they internalize it. For Jared the stress has had tons of effects.  Fortunately, he has a girlfriend who has stuck with him (so far) and really has been a godsend.  I think if it wasn't for her, Jared wouldn't be able to be at schoool (we live in NY he's at college in Ohio).  I agree that his peers really don't understand.  He spent 2 days in the hospital last month, and nobody came to see him (his girlfriend was there when she was able).

       

      I've been wanting to try to find a way to get the word out for YOUNG ADULTS, but, don't know how, or where to go.  I've emailed with Mathew Zachary the founder of I2Y and he's just a frustrated.  I'm absolutely thrilled to finally see a comment from someone who has been in the shoes I'm in now.

       

       

      Please feel free to contact me.

       

       

      We did the LIGHT THE NIGHT WALK, and TEAM JARED was our team, we raised over 11,145$ for LLS.

       

       

      Mark

      jaredsdad

       

      Message was edited by: InfoSeeker

    • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
      mtbikernate Registered Users
      Currently Being Moderated

      In going through the treatment myself prior to the age of 30, and dealing with survivorship issues now, I can agree that nobody my age knows how to handle it.

       

      I didn't start reaching out until after my treatments were completed.  I had the resources I wanted, and I simply wanted to focus on kicking AML's @$$.  Everything else would come later.  And that's how I approached it.

       

      My focus initially was on handling the treatment process as well as possible.

       

      Once the treatment phase was over, I began the process of getting back into my life.

       

      That meant returning to school (scheduled to finish my master's degree in less than a year).  It has meant getting back into shape.  Some of it I've done on my own (starting mountain biking again).  Some of it I've had help (hiring a personal trainer and getting into the Cancer to 5k program).

       

      Planet Cancer was a big help.  I attended a Planet Cancer retreat in Austin, TX and met a bunch of other survivors my age.  I still talk with them - we're all good friends now.  The Planet Cancer website has MyPlanet, which is a social networking site for young adults.  I've found a group there for other graduate students, and we discuss issues that are common to our experiences returning to school.  Some groups aren't so active, but others are and a lot of support happens there.

       

      There's an enormous amount of extremely varied support out there.  We shared a TON of those resources at the retreat.  Some of them have been mentioned already.

       

       

      1.       LIVESTRONG Resources:

      a.       LIVESTRONG SurvivorCare

                                                                     i.      Free confidential one-on-one support for emotional, practical and financial concerns

                                                                   ii.      Your gateway into all things cancer support at LIVESTRONG (including the other LIVESTRONG resources listed below)!

                                                                 iii.      ACCESS:

      1.       Phone: 866-673-7205 

      2.       Web:www.livestrong.org/get-help/one-on-one-support

      b.       LIVESTRONG Guidebook

                                                                     i.      A two part informational journey that will help guide and organize you through the cancer experience

                                                                   ii.      ACCESS: www.livestrong.org/guidebooks

      c.       Living After Cancer Treatment Brochures:

                                                                     i.      Adolescents and Young Adults

                                                                   ii.      12 other culturally specific brochures available!

                                                                 iii.      ACCESS:  www.livestrong.org/brochures

      d.       Podcasts:

                                                                     i.      Also available on YouTube and for free download on iTunes

      e.       LIVESTRONG Action

                                                                     i.      Get more involved with LIVESTRONG

                                                                   ii.      ACCESS: www.livestrongaction.org

      f.        LIVESTRONG Leader Program

                                                                     i.      Way to make cancer a priority in your community

                                                                   ii.      ACCESS:  www.livestrong.org/take-action/livestrong-leaders

      g.       Community Program Grants

                                                                     i.      Cancer Transitions: Moving Beyond Treatment

                                                                   ii.      The Creative Center: Arts in Healthcare

                                                                 iii.      SuperSibs!

                                                                 iv.      ACCESS:  For more information about how you can advocate for the programs to be in your community go to www.livestrong.org/community

      h.       LIVESTRONG at the YMCA

                                                                     i.      ACCESS: www.livestrong.org/ymca

      i.         LIVESTRONG at School

                                                                     i.      Curriculum and resources for teachers of K-12 students to education about cancer and how to support those with cancer

                                                                   ii.      ACCESS: http://www.livestrong.org/What-We-Do/Our-Actions/Programs-Partnerships/LIVESTRONG-at-School

      j.         MyPlanet

                                                                     i.      On-line community for young adults affected by cancer

                                                                   ii.      Must be 18 or older, if you are you can find groups, chat, post etc with other young adults affected by cancer

                                                                 iii.      ACCESS: myplanet.planetcancer.org

      k.       LIVESTRONG Survey

                                                                     i.      Tell us about what your cancer experience has been like so we can better advocate and create supportive programs. 

                                                                   ii.      ACCESS: www.livestrong.org/2010survey and pass along to others for the young adult voice to be heard!

      2.      Dancing on Baron Land

      a.       Christian support group for fertility

      b.       Hope Ministry-Lakewood Church in Louisiana

      3.      Breast Cancer Circle of Strength

      a.       Previously known as “Why Me?”

      b.       24 hour hotline staffed by survivors who are willing to talk

      c.       ACCESS: http://www.circleofstrength.com/hallmark.html

      4.      Sisters Network

      a.       National African American Breast Cancer Survivorship Organization

      b.       ACCESS: www.sistersnetworkinc.org

      5.      Ovarian Cancer National Alliance-Survivors Teaching Students

      a.       Program that brings survivors to talk to students in medical field

      b.       ACCESS: www.ovariancancer.org/about-us/survivors-teaching-students/

      6.      Colon Cancer Alliance

      a.       Patient advocacy organization

      b.       ACCESS: www.ccalliance.org

      7.      Leukemia and Lymphoma Society

      a.       Have individual grants for people, not based on income level

      b.       Peer to peer matching for support

      c.       ACCESS:  www.leukemia-lymphoma.org

      8.      First Descents

      a.       Kayaking

      b.       ACCESS:  www.firstdescents.org

      9.      The Ulman Cancer Fund for Young Adults

      a.       To support, educate and empower young adult cancer survivors

      b.       ACCESS:  www.ulmanfund.org

      10. Imerman Angels

      a.       Peer to peer matching for survivors and loved ones

      b.       ACCESS:  www.imermanangels.org

      11. BRICKS for Young Adults

      a.       Pittsburgh, PA

      b.       Connects young adult cancer survivors to each other and resources

      c.       ACCESS:  http://brickspgh.blogspot.com/

      12. Spirit Jump

      a.       Provide hope and support to people affected by cancer

      b.       Can give gifts or sign up to receive gifts

      c.       ACCESS:  http://spiritjump.blogspot.com/

      13. Brides Against Breast Cancer

      a.       Donate gowns and the resale funds go to Making Memories which grants wishes for survivors of stage IV metastatic breast cancer survivors and their families

      b.       ACCESS: http://www.bridesagainstbreastcancer.org/

      14. Kiteboarding 4 Cancer

      a.       Healing through living

      b.       ACCESS:  www.kbfc.org

      15. True North Treks

      a.       Free wilderness expedition

      b.       ACCESS:  http://www.truenorthtreks.org/

      16. Wind River Retreats

      a.       Wellness retreats

      b.       Free, located in Western North Carolina

      c.       ACCESS:  http://www.windriverservices.com/home212

      17. Crossing the Finish Line

      a.       Week long retreats for survivors and their families

      b.       Must live in PA, NJ or DE

      c.       ACCESS: http://www.crossingthefinishline.org/

      18. Bravehearts

      a.       Oncology camp for women

      b.       ACCESS: www.braveheartscamp.org

      19. Camp Good Days

      a.       Variety of camps for those diagnosed

      b.       Have a new camp for survivors of brain tumors and their families

      c.       ACCESS: www.campgooddays.org

      20. Hope Lodge-ACS

      a.       Free lodging while receiving treatment

      b.       ACCESS:  http://www5.cancer.org/docroot/subsite/hopelodge/index.asp

      21. Miracle  House of New York

      a.       Temporary housing, meals and advocacy to caregivers and patients in NYC for medical treatment

      b.       ACCES:  http://www.miraclehouse.org/

      22. Cancer Support Community

      a.       Local support groups and activities

      b.       ACCESS:  www.thewellnesscommunity.org

      23. Bo’s Place

      a.       Located in Houston

      b.       For children who have lost a sibling or parent

      c.       ACCESS: www.bosplace.org

      24. Cancer 180-MD Anderson, Houston

      a.       Provides social environments where young adults affected by cancer can get together

      b.       ACCESS: http://www.mdanderson.org/patient-and-cancer-information/guide-to-md-anderson/patient-and-family-support/anderson-network/support-programs/anderson-network-support-programs-cancer180.html

      25. SamFund

      a.       Funds and scholarships

      b.       For survivors 35 years old and younger

      c.       ACCESS:  www.thesamfund.org

      26. Give It Forward

      a.       Website to set up fundraisers for self or others

      b.       ACCESS: www.giveforward.org

      27. Cancer and Careers

      a.       Information for employers

      b.       Career coaches

      c.       ACCESS:  www.cancerandcareers.org

      28. Cancer Legal Resource Center

      a.       Free and confidential information about cancer-related legal issues

      b.       ACCESS: www.cancerlegalresourcecenter.org

      29. United Way-211

      a.       Help you locate local resources, including bill payment

      b.       ACCESS: call 211

      30. Young Survival Coalition

      a.       Organization focus on improving the quality of life for young women affected by breast cancer

      b.       ACCESS: www.youngsurvival.org

      31. Testicular Cancer Resource Center

      a.       ACCESS: http://tcrc.acor.org/

      32. 15-40 Connection

      a.       Raising awareness and early detection of cancer in the adolescent and young adult population

      b.       ACCESS:  www.15-40.org

      33. Bcmets.org

      a.       Support and information for those with metastatic breast cancer

      b.       ACCESS: www.bcmets.org

      34. Professional organization websites (EX: American Society for Clinical Oncology)

      a.       To find scholarly articles, conference abstracts

      35. Google Scholar

      a.       To find scholarly articles

      b.       ACCESS: scholar.google.com

      36. Financial officers at hospitals

      a.       Good resource for identifying the support your treatment center can provide

      37. Voices of Survivors

      a.       Opportunity to share what survivorship means to you

      b.       ACCESS:  http://voicesofsurvivors.org/

      38. I’m Too Young For This- i[2]y

      a.       Young adult conference

      b.       Radio show and chats

      c.       ACCESS: http://i2y.org/

      39. Team Duke

      a.       Athletic fundraising program

      b.       Free things for groups that support cancer

      c.       ACCESS: www.teamduke.org



      • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
        tamithurman Registered Users
        Currently Being Moderated

        My son just turned 22 in September and was diagnosed March 26 with AML with complex cytogenetics.  He had a transplant on June 29 and so far, other than his CMV levels not going down, everything else seems okay.  He does feel isolated and to top it off, he just broke up with his live-in girlfriend, which is perfectly okay with me, except he is reeling now.  He is lonely and feeling different.  He's afraid to go out and depressed when he stays in.  I try to help him and do things with him, but it's obviously not the same.  He is only 123 days out, but I was hoping he could get out more. He's on a lot of steroids, but I believe it wouldn't hurt him to go to friends' home, etc.  I think he's so afraid right now to do anything, but it's putting him into a tailspin.

         

        I see all the help listed, but I don't believe I"m thinking very straight right now. We definitely need some financial assistance because he also lives on his own, but so far, all we've been able to get is $200 a month for four months, which everyone knows won't pay the gas bill.  Where do I go?  What do I do? I thought a friend would have picked up the ball and run with it, but so far, no one has.  I'm somewhat let down, considering when we had a bone marrow registry in our small town, more than 1,000 people showed up to register, which we understand is unheard of.  Anyway, I guess there's no easy answers.  I will read what was just posted and perhaps try to make sense of it all.  I think I'm just exhausted. 

         

        For anyone interested in reading my sons experience through my eyes, please go to http://www.caringbridge.org/visit/brentthurman

        • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
          Hope_Floats Registered Users
          Currently Being Moderated

          I hear you and understand completely, after a few weeks after my son's dx we didn't get any support from anywhere.  I think watching your child so isolated and alone is the worst.  They have so much to deal with....should being alone one of them?  My son will be 4 years post transplant this month.  Since your son had a transplant has anyone told you about a grant for transplant patients from BMT?  The amount varies according to need.  Is your son receiving disability?  How about department of social services and your local section 8?  Is he receiving food stamps? My son lived in aptartment attached to my house (an inlaw type of apt.) so rent and things were never an issue.  My son did receive disability and food stamps.  My son has recently broken up with his long term girlfriend and he is finding the prospect of finding someone new overwhelming with his past medical history.  He now has lack of confidence and says he will NEVER find someone new....Your son maybe feeling the same things too.  If he wants someone to talk to he can look my son up on facebook....Chad Kirkmon, Albany NY area.  Sometimes, just having someone the same age that can relate helps.  One person their age, that says hey "I've been there".  Because let's face it most their friends can't relate.

           

          God speed,

          Sue

          • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
            tamithurman Registered Users
            Currently Being Moderated

            Hi Sue. Sorry it's taken so long to answer your reply to me. Since the beginning of November, my 22 year old son, Brent, has been spending every single day at UCSF (50 miles from home) for an infusion that he needs to keep his CMV undetectable. It will probably continue at least through January and possibly longer because they don't want to stop until he's completely off steroids. I go with him because he needs me there. He is exhausted after treatment and couldn't possibly drive. But I am so exhausted, I can hardly put one foot in front of the other.

             

            You mentioned food stamps. I hate to be ignorant, but how does he go about getting those? We don't know about many grants, other than the $200 a month that ended. We reapplied, but haven't heard anything.

             

            I do have another question for you, though. I've been scared to death. He is six months post-transplant and Monday will be his second biopsy. Yesterday, I was comparing his bloodwork to the previous day's report and noticed that on 12/30, there was a line underneath "Lymphs" that said immature granulomas present. I thought that was a horrible thing. Lost my composure, and I asked the nurse. She said she didn't know, but had not heard anything. A couple of hours later, she said the doctor advised it was no big deal; it's normal. But I thought immature anything is a bad thing. Did your son have a hard time the first year? Did you find any questionable items on his reports like that? I'm so afraid for him. Can't sleep, can't think of anything else. I know he's 22, but he's my baby and I am having a very difficult time coping with this.

            • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
              Kim-Zack'sMom Registered Users
              Currently Being Moderated

              Tami and all of the other parents out there -

              I have not been on this discussion board for a couple of months.  Tami's post about being so tired she almost can't put one foot in front of the other is exactly where I was over the holiday season.  My 22 year old son was diagnosed with B cell ALL in March, 2010.  He began the maintenance phase two weeks ago but is struggling now more than ever.  He is struggling with ongoing problems - depression, muscle wasting, listlessness and as of two weeks ago severe pain in his knees that caused him to collapse as we were leaving a restaurant.  He could not move without extreme pain in his knees.  About the time he was coming out of that experience, he developed a high fever and is on strong antibiotics and anti fungals until the cultures come back from his blood test late last week so they can isolate and treat the specific infection he has.  He is supposed to start college courses next week but it's hard to imagine that he will be well enough to do that.   I am supposed to go back to work tomorrow but I can't imagine how that is going to be at all possible.  I am my son's primary caregiver as his father died when he was 11 years old.  We have a wide network of friends who are willing to help but I don't know what they can realistically do.  My son isn't up for much company and it is hard for him to muster the energy to engage with people when he is feeling so low.  We have sought out support for young adults in our community.  The Gilda's Club had a support group for people in their 20's and 30's but it looks as though it will be shut down due to lack of participation.  I don't know where to turn or how to provide my son with the support he needs.  Suggestions welcome.

              Kim-Zack'sMom

              • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
                tamithurman Registered Users
                Currently Being Moderated

                Hey Kim. Our sons were diagnosed the same month/year. Brent was diagnosed on March 26, 2010, after having two separate staph infections for no apparent reason.  He also looked jaundiced, but we all thought it was because he was working more than 55 hours a week.  My son has AML, a disease I understand mostly afflicts the elderly and infants. Go figure. We have been driving more than 100 miles round trip every single day since Nov. 9 and there is no end in sight yet.  I am so exhausted, I can't even sleep. Nothing works. I feel like a zombie and let me tell you, I think I've aged ten years.

                 

                Your description of your son's problems mirror my son.  He has been increasingly depressed, admitting that he hadn't showered in a few days, which is so unlike him.  He normally takes two a day.  The muscle wasting and listlessness is exactly what he's going through.  I walk in and he's in the same spot on the couch.  I know he's exhausted, but I'm afraid he's isolating himself.  Brent is not really able to go to many activities, though.  He is very immuno-compromised, taking Prednisone and Tacrolimus, as well as Cell Cept.  He's gone to dinner and a movie before, but only during the week and the early hours. 

                 

                One thing we did do was to contact our social worker on the same floor as the clinic.  She's wonderful and gave me a lot of information about financial aide for him.  I don't know if your son was working, but Brent gets disability and one of the foundations sends him $200 a month. As well, we just received $600 for our recent transportation expenses and a $300 gas card, which will give us about three weeks worth of gas.

                 

                The other thing you may want to check out that I think would do wonders for my son is a group of young adults, approximately 20-30 years of age who are all survivors of some type of blood cancer.  They have trips for them to go on, free of charge, like riding the rapids, rock climbing, hiking, etc.  Because as you know, no one their age knows what they're going through no matter how hard they try to understand.  This is an opportunity for them to be with others that know exactly what they are going through and our kids would understand them, as well.  They may want to talk about it or they wouldn't have to; it would be up to them. But I'm hoping when Brent gets through this new phase of awful problems, he will sign up and go with them for physical and mental health. 

                 

                He broke up with his girlfriend, which I have to say I'm thrilled about, but he misses that kind of relationship.  He is in that same boat also.  Just getting his hair back; still going to the clinic daily; can't go out in crowds, is weak, nauseous, etc.  I'm exhausted just thinking about it. The most I can do is what I'm doing now; type. Only my fingers move. And dinner? Yeah, right.  We haven't eaten really well for a long time since this started.  I need to lose weight and he needs to eat healthier.  It's just a neverending story.  I assume you don't live in my neck of the woods - we're in the East Bay near UCSF.  Too bad; we could take turns driving!!!  We will get through this; I just haven't seen the light at the end of that really long tunnel.  Tami

                • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
                  Kim-Zack'sMom Registered Users
                  Currently Being Moderated

                  Hey Tami -

                  Unfortunately, a car pool wouldn't work too well.  We live in Toronto, Ontario.  Know that I think of you every day, though, as you trudge to and from your son's treatments.  We live quite close to the hospital where my son is being treated so we don't have the considerable burden of travel on top of the rest of it.   Thanks for the suggestion about finding sources of support for my son (Zack) - both mental health and financial.  I need to get moving on filing applications for grants for Zack.  I am aware of potential sources but just haven't been able to get my act together to get the applications, fill them out and get them submitted.  I totally hear you about cleaning up my eating act.  It is so hard to get motivated to do that and Zack isn't eating very well either.  He's really discouraged about his weight gain.  He was really overweight as a young child but lost all of the weight and got into shape by the time he was 18 or 19.  He has the puffy steroids look and while his hair has started to come back, it is thin and sparse in places.  I find it so hard to watch him just lying in his bed watching television.  He went to physiotherapy today and got some exercises to do and he's arranging for a trainer to come to the house at least a couple of times each week to get him back into a routine of physical activity.  I need to make that same commitment to myself and so do you.  I will commit to you to take a trip to the gym or a 30 minute walk this week.  I'll let you know how I do.   So, Tami, be good to yourself today and don't be so hard on yourself.  Try and do one thing today to be kind to yourself.   Hang in there.  I will stay in touch.  Kim-Zack'sMom

      • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
        willowbayfarm Registered Users
        Currently Being Moderated

        Hi Mike,

         

        This is an amazing list of resources you came up with.  I wonder if you should also post the list on the "Let's Just Talk" forum so more folks would see it.  Seems a shame to have it hidden here on this thread where it's not going to get the exposure it deserves.

         

        - WBF

  • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
    krisle Registered Users
    Currently Being Moderated

    My son is 20 and finished treatment for classic HL 6 months ago.  He returned to college after missing his sophomore year in treatment.  I could have written your letter.  He was scanned 3 weeks ago and had a thyroid function test.  His isn't wroking at all.  He has been having a rough time at school.  He is very tired, cold and feeling overwhelmed.  I think the medicine is just starting to kick in.

  • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
    Toms-Mom Registered Users
    Currently Being Moderated

    Hello Jared's Dad,

    My son, Thomas was diagnosed at 18 with Hodgken's lymphoma.  He just finished his freshman year at college when he was diagnosed.  He turned 20 in August this year.  He has pretty much exhausted all his options having gone through chemotherapy, autologous stem cell transplant and radiation.  He briefly went into remission this past summer but that was not to be for long.  We are now working on getting him into one of the trials.  His spirits remain strong, however it's been difficult.

     

    He is still planning to sign up for classes next semester and do the things he wants to do.  We are moving along with life and continue to pray for his healing.

     

    Hang in there Dad!  It is difficult to see your child going throught this.  My son is my only child so it is very difficult!

     

    Tom's Mom

    • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
      jaredsdad Registered Users
      Currently Being Moderated

      Jared is doing pretty good right now, with all the stress at school finished with a 3.1 for his 1st semester Jr year college.  Lately he's been dealing with the chemo pretty good.  Though he's had to have a couple of blood transfusions.  We're looking foward to next Aug/Beg Sept when he's done with his formal chemo.  For your info, I2Y started their own forums, good place for young adults to post

       

      Mark

      Jaredsdad

  • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
    Fontenrose Registered Users
    Currently Being Moderated

    Kim-Zack's mom:

     

    For my son (pre-B ALL, dx almost 17 in 2008) it took a couple of months into maintenance to really stabilize and it was depressing. It got better after that, although he does not have a lot of energy for exercising. Your son might find it quite hard to start this term. He might not be ready yet. My son registered with the disabilities office at the university -- they can offer some help, like note-taking, private study rooms, rescheduled exams.

     

    Tami: Hi! I remember your threads in the transplant forum.

     

    This cancer is so tough on young adults. They are just starting their adult lives and the rug is pulled out from under them. My son is in university and that does give the feeling of making some progress while undergoing the long treatment. He doesn't work in the summer though, he rests. Since he was diagnosed a bit younger, still at home and dependent, it has been a bit easier I think. It's so hard to go back home otherwise.

    • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
      Kim-Zack'sMom Registered Users
      Currently Being Moderated

      This board has been quiet for awhile and I worry about people who were struggling and haven't posted anything for awhile.  My son returned to a local college near home on January 10th then on January 16th was back in the hospital from an infection that ended up being a flu that he picked up from his brother.   Happily he ony had to be in the hospital for a couple of days but he lost the whole second week back at school.  He is slowly building his energy up again but once every three weeks he has another round of steroids as part of his maintenance program which causes him to struggle emotionally.  We are finally planning a trip to Florida at the end of February - our first since Zack was diagnosed last March.   I am holding my breath, hoping that Zack's health will remain stable enough to go.  Hoping all of your children are progressing mentally, physically and in spirit.  Take good care.  You are in my thoughts.  Kim

      • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
        tamithurman Registered Users
        Currently Being Moderated

        Hi Kim and Fontanrose...

        Yes, I have been away for a long time too.  We are still driving to UCSF for Brent's daily - or almost daily infusions.  They finally cut him down to four days a week, but it is definitely taking its toll on my son and on me, though I don't want to complain since I'm only driving him.  He has to do all the hard stuff.  Kim, I can't imagine my son doing anything like what your son is doing. He thought he was going to be able to go to work by now and there's just no way on earth that could happen. He was diagnosed March 26, 2010, and have had setback after setback.  GvH, BK Virus (the most horrible thing I've ever had to witness), and now the CMV virus they controlled with Foscarnet.

         

        The doctor told us last week when they cut his Prednisone down to one every other day that next week, he will only have three days, then be done with it. But then yesterday, his Nurse Practitioner, Derek, came in to say hi and mentioned that after next week, they would cut him down to three days, then two. I said, I dont think so. He hadn't heard about the doctor's plans, but it's worrying me because we've been told different things before, just to have the rug pulled out from under him.  We were very adamant the doctor said next week was our last week.  If it isn't, I don't know what that will do to my son. He is still having lows and depression, even though he says he's not. A girl he finally started to get close to after knowing her for more than five years left on Thursday to teach in Argentina, of all places.  That also depressed him. I try to be the upbeat mom, but he also does not like that because he thinks it's fake (which most of it is at this point). 

         

        Is it normal for all of these setbacks? It's like two steps forward, one step back. He hasn't had time to recuperate with this schedule, let alone trying to become social and strong again.  To top it off, insurance is trying to make it extremely difficult for us to get his two most important medications. How do you all handle that? We were told that Brent couldn't travel more than an hour away from the hospital and I read that others are traveling on vacations, etc. I guess that leads me to believe that Brent's case seems worse than others his age.  I don't know, I think I'm exhausted and still stunned after almost a year. I still can't grasp it. Never sick - ever. Completely the kid who always injured himself...broken elbow, broken thumb, split kneecap, huge gash in his head, etc.  You get the picture. Accident prone because he always took chances.  Now, I am wracking my brain trying to figure out how in the world he got this horrible disease and if there was anything I ever did to cause it. I know that's a futile mission, but it never leaves my mind.

         

        The other thing is that I wish he would get together with some others from the hospital to compare notes, but he wants nothing to do with it. As you all know, this is not just any cancer. I've had breast cancer and there's various cancers in my family.  You get the cancer, you treat it and deal only with that cancer. This is so different. You get the leukemia and it's not only the leukemia you're fighting, you're fighting all the side effects and other illnesses that come with it. No one would EVER understand unless they or their family member was going through it and they were there every step of the way. That's what's so difficult. His friends and even our friends don't really get the horrifying and excruciating pain he's gone through. No one ever saw him screaming with the BK virus. None of his friends know that he was having buckets of diarrhea with GvH for weeks. Everyone seems to think, oh, it's cancer. He'll be alright. I'm sorry if I've gotten a little too graphic, but he's gone through so much and no one knows and wouldn't know what to ask, even if they thought to ask something. My friends have even backed off. Brent will never tell his friends details of what he's going through. He wants to feel "normal" but seems to me that some of his good friends should know what he's gone through these many months. If i sound bitter, I think I am. I still just can't believe it. I'm trying to, but I just can't. I guess this is my low moment too.  I just want to scoop up my 22 year old, 185 pound adult child and run away with him to somewhere fun and forget this ever happened. Anyway, I had to get that out of my system. Thanks to those of you who are listening. 

        • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
          Kim-Zack'sMom Registered Users
          Currently Being Moderated

          Hi Tami -

           

          Your last post makes me think that maybe my son transports himself into your son's body before returning and acting just the same way back here.  My son too does not want to reach out to others at the hospital, whether they are the same age or not.  I feel like a sponge when I go with him, wanting to talk to people, provide support and gather what information I can.  My son wants none of that so I am polite to everyone there but don't push his boundaries very much as it just seems to annoy him.

           

          I am so sorry that your son is struggling.  My son is now 11 months into his 2 year protocol.  He is in the maintenance phase but has developed a couple of nasty infections so has had to return to the hospital a couple of times since Christmas for a few days at a time.  During that time I often felt like I was standing at the edge of the ocean and every time I stood at the edge, a wave would knock me down.  Each time I got back up it would knock me down again. 

           

          I also know what you mean about not having the information you need to understand what your son is going through and why.  I think there were times I was given information that I simply didn't retain.  I know that we spent nine months crawling to the day he could stop taking steroids.  The week before the 9 month mark, we were told that he would have to stay on steroids for the entire maintenance phase of this treatment (one week out of every three) - another 13 months!  We were both so discouraged for weeks because his biggest challenge, by far, has been coping with the chaos the steroids cause.  The fact that neither of us knew that the steroids would continue probably means that if we were told at all, it was in shorthand.  We really don't have any resource to give us information about the protocol my son is on, what to expect next and what might go wrong along the way.

           

          Hang in there and know that I am thinking of you.  My son seems to be coming out of his tail spin (from a health perspective) and I pray your son will do the same.  My son's emotional health is more shaky but he is making his way through that too.  He's pretty isolated which is heartbreaking to witness.  The hardest part is not being able to do anything to change any of this.  The road ahead is so long but I can't look at it that way. We can only look to today, recognizing that it is a blessing to mark one more treatment day off the list.

           

          Take care and stay in touch when you can,

          Kim-Zack'sMom 

        • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
          mamawarrior Registered Users
          Currently Being Moderated

          Tami, i am sorry to hear that brent is still struggling. His journey reminds me alot like stevens. I think alot of the difficulty with the young adults comes from the fact that they are given total body irradiation. While it seems to be the preferred method of pretransplant conditioning it wreaks havok on the immune system and every dormant virus resurfaces as well as anything breathed their way seems to find them. Steven also dealt with bk virus, and yes that was very difficult, and he had cmv too. He also had the vomiting and diarrhea daily for several months and lost 55 pounds. For several months, i gave him 30 pills a day, 7 IV's and drew blood, running that up to the hospital. He was hospitalized 12 times in the first 18 mos post transplant  along with numerous emergency room visit for various problems, infections, pneumonia. Between that, doc appts every 2-3 days, and 11 hour trips to duke every 3 mos, we were exhausted. And that was after living at duke for 5 mos. He had numerous problems. He was my sole focus. He required 1 on 1 care for a long, long time.

           

          But it does get better.

           

          We are 4 years post transplant now and still dealing with issues, mainly related to immunodeficiency and infections. It is still a challenge, and i still panic when my son calls. We rarely make it more than 2 weeks without a problem, without heading back to the doctors.  But it is not the constant hanging on the edge of the cliff by one hand, feeling we had for so long. My son is now enjoying life for the most part and doing normal things, but we do have to deal with long term complications from chemo, radiation and transplant.

           

          It is unbelievably hard tami, i know how you feel, but you are doing a great job. Hang on to the faith that it will get better.

           

          • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
            tamithurman Registered Users
            Currently Being Moderated

            Wow, mama, I didn't know Steven was still going through so much after four years. It is difficult to see how some have so many problems and others seem to not have much to deal with. However, someone (I think a nurse) told me it was actually good that Brent was going through all of these awful problems now because that shows that his body is fighting. I hope that's the case.

             

            In any event, tomorrow is our last "daily" infusion.  We've been driving to UCSF for almost four months now and after tomorrow, he will only need to go one day a week (still having IVIG infusions that day).  This sounds ridiculous, but I think I'm already having bouts of separation anxiety. Is that silly? I feel a need to be with the wonderful nurses. I'm not sure what I'll do after this. Brent's numbers are really good, although he vomits at the drop of a hat. Yesterday, he did four times. Horrible, but it's the Foscarnet he's taking, along with huge amounts of magnesium. I know it's been almost a year since diagnosis, but I'm still in a state of shock. I should be used to it by now, but I'm not. Yesterday as I was driving him home, he was on his fourth bout of vomiting in a bucket in the front seat.  I was rubbing his back as my daughter called me from Santa Barbara.  She was horribly sick...thought it was strep or bronchitis and felt awful.  She was coughing and groaning on the phone while Brent was puking next to me. I think I was just about ready to have a nervous breakdown on the Interstate.

             

            I woke up this morning and my dog was sick. Ugh.  I love my family more than I could ever express.  There are no words, but I need a Calgon moment.  I need a lounge chair, a mai tai and a pool boy bringing the suntan lotion. Maybe the breakdown will happen today and I won't have to worry about being on the road.  To top it off, I'm on Nutrisystem now and am a little cranky.  I'm about ready to break open the chocolate and scotch. 

             

            I have a sick feeling our lives are forever changed.  While I have always worried about my kids (I have a worry gene), I never thought it could be to this extreme. Everytime Brent calls me on a day he has off, I worry when I pick it up. He sees me so much that I try not to bother him on the days off and when he calls, I always think it's a health reason.  Anyway, I'm blathering away at the moment. I really appreciate everyone's input about your struggles and a lot of the similarities.  That helps me cope (can't you tell?).  I will try to update as much as possible.  In the meantime, if anyone wants to read about Brent, I have a blog for him.  http://www.caringbridge.org/visit/brentthurman  

            Thanks everyone.  t

            • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
              mamawarrior Registered Users
              Currently Being Moderated

              Tami, glad to hear your sons last daily infusion has come to an end. Hopefully things will get a little easier now. You can't let your guard down though. Infection is still a serious concern and there have been plenty of us that have ended up in the hospital with serious infections post transplant. My steven just got over pneumonia and seems like this winter has been really difficult with various strains of the flu and he has gotten them all.

               

              I don't think your life will ever be the same, how could it?  But it does get better and with your son being young, hopefully he will be like my steven and call you one day from the beach telling you he is surfing. Yikes. Not that you need any more stress. But young folks have a certain resilience and i suppose after living in the hospital over a year with mama next to him, he is ready to live.

               

              When you do get to breathe again, beware, you may go through post traumatic stress disorder, i certainly did. There is an excellent thread on the transplant forum where quite a few folks have responded about their experience with it, me, being the only caregiver and mother.

               

              http://community.lls.org/thread/9429

               

              You all take care and stay safe.

               

               

               

               

              • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
                Kim-Zack'sMom Registered Users
                Currently Being Moderated

                Tami and Mamawarrior (a great name!) -

                 

                Your courage inspires me to take one more step, one more hour, one more day living with this reality.  I really identify with Tami's concern that we are forever changed by this experience.  I know that I am still shell-shocked in so many ways.  I put up a good front but, just like Tami, I would love to spend just a few days by a pool all by myself (pool boys or not!) to just catch my breath.  I am self employed so went back to work on a part time basis only 6 week after my son Zack's diagnosis in March because, whether Zack was sick or not, the bills just kept on coming.  I am now working pretty much full time but have so much less tolerance than I did before for the stresses of my job and juggling Zack's care.  Tami, I know for you that my ability to go back to work is something you must dream about.  So far my son is not on the transplant road.  They are saving that in case he relapses which is a prospect I cannot even imagine right now.  Zack has been infection free for a month which makes me both nervous and wary.  Our family is scheduled to go to Florida this coming Saturday to spend some time there with my mom who will turn 83 next week. Among other things, I need to get down there to get her own health and dental care organized.   I am holding my breath, hoping that the sky does not fall one more time this week.  We live in Canada so we're hoping no snow storm comes our way to prevent us from going.   Perhaps it is part of the trauma but I find myself feeling like I don't deserve this break, even though I know that I will need to spend a chunk of time getting my mother's health care in order.  I even feel guilty telling those of you out there who are nowhere near even contemplating a short escape.  If we do pull this off, know that I will have a mai tai in your honor and will think of you as I take early morning walks along the beach.  You remain in my thoughts and prayers.

                 

                Kim-Zack'sMom

  • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
    Hope_Floats Registered Users
    Currently Being Moderated

    My son is  over four years post transplant and I can honestly say it just never leaves me....It's always there, ever present in the back of my mind...I can relate to needing a calgon moment.  When my son was going through his transplant we were 1,800 miles from home and we were gone 6 months...We were in one of the best cancer centers in the country who offered support and programs for the family but I couldn't leave long enough to participate.  His dad did fly down for a few days and I was able to leave then and take my daughter who was visiting to dinner, but I felt guilty...When we returned from the transplant center 3 months later I returned to work full time, however, it was a very stressfuI job, and I recently realized that I have been under constant stress since my son's diagnosis over 5 years ago...so, I quit my stressful job.  Of course now I'll have the stress of finding a new one...lol.   Last year I had 4 interviews with a company and in the end they did not hire me.  "Off the record" I was told it was the district manager who vetoed it because he was afraid I would have to go out on family medical leave at some point...Ok, so I told the truth about the gap in my employment and that bit me in the butt.  The issues seem to never end. I ask him daily "how do you feel?" So, I stopped working a week ago to give myself a stress break, and it has been nice...But Thursday I send my other son to  the dentist and she says he needs to go to an oral surgeon because he has two spots in his mouth that "could be cancer"....OMG, if this son turns out to have cancer too, I am jumping off the closest bridge....So, off to an oral surgeon today to see what he says....all weekend I kept thinking these words to that song "hello darkness my old friend"....I realize it could be something else, but when you've been through what we have, it's so hard to think positive.

     

    Sue

    • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
      tamithurman Registered Users
      Currently Being Moderated

      Hello Mama, Kim and Sue. Sounds like we are all in the same boat.  Mama, you're right, I am freaked out about infections. In fact, we ended up finishing his infusion of Foscarnet on Friday and the Nurse Practitioner said he was going to call in - I believe - Acyclovir (sp) for Brent to take everyday to keep CMV in check. Well, Brent and I completely forgot on Friday because we didn't get home until after 5. I woke up in a panic in the middle of the night and called the pharmacy Saturday morning. They had no record of this being called in and when they tried to contact the NP, they were only able to get an on-call doctor. Our doctor is away at a conference. The on-call said he would try to page the NP and email the doctor because he doesn't have Brent's file and doesn't know what dose. Needless to say, he has yet to call us back and today is a holiday, meaning Brent went three days without this medicine. Now, it could be that it isn't a big deal because perhaps we heard him wrong. But I don't think so. The on-call said that since his CMV numbers were undetectable for so long, it most likely won't be a problem because we go back to the clinic tomorrow, but I'm still freaked out about it. Ugh. You're right about the PTSD...I think I'm seeing signs, or at least my husband is seeing signs in me. Don't know what to do yet, but I worry 24/7. Not good for someone who has a predisposition to worrying.

       

      And as a matter of fact Kim, I also am self employed working from home, but have not had time or inclination to do so.  Since November, I have been rising at 5:30, on the road to UCSF until 8 (due to horrific traffic), at the clinic until 2:30, then back on the road home. I go into my son's place and clean up (he's unable to be around the vacuum or cleaning solvents - anyone have suggestions about this?), then get back home by 6. Then, it's making dinner and melting into the couch and falling asleep. I never used to do that; I used to be a night owl and a morning person, not needing much sleep, but it seems like that's the only time I can remove myself from this horror.  I am still stunned and shocked. I really am. I still sit and think about it and just can't wrap my head around it. We have had a four year reign of horrible life moments. I had breast cancer (double mastectomy) in 2007, my beautiful dog, Newman, died in August, '07 and my dad whom I was so close to died December of that year. Three weeks later, my mom had a heart attack.  I sold her house and moved her close to us....too close. We never had that relationship I had with my dad and my brother doesn't help, so it's me doing her finances and trying to help her while my son is my main concern.  It's constant resentment and I can't seem to get past it.  As well, our finances have taken a major turn for the worse and our house (we're in california) is waaaay upside down.  Couldn't sell it if we wanted to.  So I understand the "hello darkness, my old friend..."

       

      Sue, you've got it right. I am that person who asks my son how he feels constantly. I feel like a mother hen. It's like if I don't ask him, I won't know and it's a need to know about everything in his life now. We have broken down walls, let me tell you. We've talked about diarrhea, vomiting, semen, etc.  Nothing is off limits any longer because it all has to do with his health and life.  Never thought we would be there because he is such a private person, but this has pulled the rug from us in that respect. 

       

      Oh, and I also told the truth after I had cancer, about having cancer to possible employers when I believed it would be a better idea to work outside the home and get benefits.  By law they can't pass you up due to health concerns, but they will find something else to give them a reason. It is definitely better that I work from home and beginning next week, I will be revving back up.  I feel like I'm drowning but was able to come up for two gulps of air instead of one.  Wow, I just re-read this and I sound like I'm losing my mind but I'm not going to erase it. I have a feeling others feel the same way. I want you to know how much I appreciate it when you all answer my posts.  It gives me a great sense of relief, even if it is only to validate that this sucks. xoxoxo  Tami

      • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
        Kim-Zack'sMom Registered Users
        Currently Being Moderated

        Tami, Sue and Mama -

         

        First, Sue, I will hold my breath and wait for the news of your other son's results for his oral test.  Here's hoping that it is absolutely nothing!   Whatever it is, good or bad, you'll get through and we'll be there for you.

         

        Second, Tami, I so get the frantic search for a nurse, a doctor or anybody who can tell me where to get my hands on the @!#$% medication that my son was supposed to have one day ago, two days ago or three days ago, frantic but not getting anybody to respond....only to be told that it's no big deal, he can just skip that dose.  Glad you had an extra day off today, even if it gave you time to just veg out a bit.  I had no idea that you also have had your own dance with the C beast.  It's no wonder you need to zone out from time to time.  Go easy on yourself.  The pace you are keeping up is relentless.  It is hard to turn off the financial fear, or even to tone it down on some days.  I find that I also am lending towards the couch potato lately.  Tonight I find myself at home alone which almost never happens.  Zack has gone out with his brother for a few hours and my husband is out playing bridge.  And me.....sitting on my butt in front of the TV, having just packed away a half a box of cookies.  So much easier to zone out than to re-engage with the world sometimes. 

         

        So girls....I am going to try and enjoy some down time.  Hoping you can do the same tonight.

         

        Be well,

        Kim   

      • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
        Kim-Zack'sMom Registered Users
        Currently Being Moderated

        Hi Tami, Mama, Sue and everyone else on this thread -

         

        None of us have been on this thread for awhile.  I always worry when I don't hear from others.  My son is hanging in there.   Today marks the one year anniversary of his treatment starting.  You are the people who understand best what this means.   If all goes well, he will have only one more year of treatment.   We tried to take our first family vacation a couple of weeks ago.  We got Zack to Florida but he had developed a lung infection on the day we arrived and only had about 20% of his normal lung capacity so was pretty much house-bound.  We were in daily contact with his doctor in Canada.  Luckily we had extra doses of antibiotics on board and while he didn't get much better while we were away, he didn't get worse either.  My mother lives in Florida and it was her 83rd birthday on the last day of our visit so we wanted to be there for that.  Zack has gone back to school now that we're home but he still has shortness of breath and feels generally wiped out.  He is slowly getting over his lung infection which meant he couldn't have his hospital-administered chemo last week.  It left us a one week reprieve from this round of steroids but he will be back on them again on Friday....oh joy! 

         

        You are all in my thoughts and prayers.  Check in when you can and, in the meantime, take good care of yourselves.

         

        Kim-Zack's Mom  

        • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
          tamithurman Registered Users
          Currently Being Moderated

          Hi Kim.  Yes, we are still kicking here in California.  As I read your post, I thought it was great that you took it to the next level and had kind of a vacation, even though it didn't go quite as planned.  But I didn't know that he was still having hospital chemo after one year.  Why is that?  Didn't he get a transplant? We have been receiving the Foscarnet for Brent's CMV, but thankfully, that just stopped.  We are on a once a week trip to the clinic to check on the numbers.  Did Zach get his year bone marrow biopsy? Always like to know because that's what freaks me out so much. 

           

          I haven't been on this for awhile because once we stopped going to UCSF so often, I've been trying to do things like remember how to clean the house and pay bills.  That's been fun.  I can almost laugh at the ridiculous bills I see floating around on my dining room table.  We don't eat there anymore; it's more of a war room for bills.  I've been trying to figure out how to have a fundraiser in which I don't participate.  I have enough to do but that could certainly help Brent since he is living on his own.  We just couldn't take that away from him.  Everything else was, so he is ten minutes away in the same town. 

           

          I also think that I've been putting one foot in front of the other and putting out of my mind how exhausted I've been.  Sometimes he will ask me to go grab him some food and as I walk down the long hallways and onto two separate elevators, then across the street and down another bank of elevators and walk to my car, pay to get out, then drive to find something healthy to eat, it's like I'm on autopilot.  I can't afford the luxury of being tired.  But since we've stopped going everyday, I think I'm more stressed than I realized. 

           

          I drove to Santa Barbara to see my daughter and screamed and cried all the way down by myself.  I have such rage and turmoil inside and haven't been able to let it out.  Maybe I have post traumatic something or other.  I dont know.  Feels like I could be getting a little crazy, but I've been forgetting words and phrases.  That never happens to me.  I think I'm running on fumes.  Brent, on the other hand, being the guy with little to say, informed me he wants to try his hand at standup comedy. I thought he was kidding.  He wasn't.  Whenever that day comes, dad and I will be in the audience cheering him on.  He seems like he is doing really well for the most part, but after all this time, he still doesn't have any smell back.  Can't smell a thing.  Weird.

           

          I, too, hope everyone is alright and doing well.  What a weird and crazy club we're in.  I consider you all family that I get to talk to occasionally.  Hopefully more, now that I'm home.  Please tell me more about Zach.  I hate to be nosy, but would love to know more about his story.  Thanks for poking at us and getting me to write.  I needed it.  xoxoxo  Tami

        • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
          tamithurman Registered Users
          Currently Being Moderated

          Hi Kim.  Yes, we are still kicking here in California.  As I read your post, I thought it was great that you took it to the next level and had kind of a vacation, even though it didn't go quite as planned.  But I didn't know that he was still having hospital chemo after one year.  Why is that?  Didn't he get a transplant? We have been receiving the Foscarnet for Brent's CMV, but thankfully, that just stopped.  We are on a once a week trip to the clinic to check on the numbers.  Did Zach get his year bone marrow biopsy? Always like to know because that's what freaks me out so much. 

           

          I haven't been on this for awhile because once we stopped going to UCSF so often, I've been trying to do things like remember how to clean the house and pay bills.  That's been fun.  I can almost laugh at the ridiculous bills I see floating around on my dining room table.  We don't eat there anymore; it's more of a war room for bills.  I've been trying to figure out how to have a fundraiser in which I don't participate.  I have enough to do but that could certainly help Brent since he is living on his own.  We just couldn't take that away from him.  Everything else was, so he is ten minutes away in the same town. 

           

          I also think that I've been putting one foot in front of the other and putting out of my mind how exhausted I've been.  Sometimes he will ask me to go grab him some food and as I walk down the long hallways and onto two separate elevators, then across the street and down another bank of elevators and walk to my car, pay to get out, then drive to find something healthy to eat, it's like I'm on autopilot.  I can't afford the luxury of being tired.  But since we've stopped going everyday, I think I'm more stressed than I realized. 

           

          I drove to Santa Barbara to see my daughter and screamed and cried all the way down by myself.  I have such rage and turmoil inside and haven't been able to let it out.  Maybe I have post traumatic something or other.  I dont know.  Feels like I could be getting a little crazy, but I've been forgetting words and phrases.  That never happens to me.  I think I'm running on fumes.  Brent, on the other hand, being the guy with little to say, informed me he wants to try his hand at standup comedy. I thought he was kidding.  He wasn't.  Whenever that day comes, dad and I will be in the audience cheering him on.  He seems like he is doing really well for the most part, but after all this time, he still doesn't have any smell back.  Can't smell a thing.  Weird.

           

          I, too, hope everyone is alright and doing well.  What a weird and crazy club we're in.  I consider you all family that I get to talk to occasionally.  Hopefully more, now that I'm home.  Please tell me more about Zach.  I hate to be nosy, but would love to know more about his story.  Thanks for poking at us and getting me to write.  I needed it.  xoxoxo  Tami

        • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
          tamithurman Registered Users
          Currently Being Moderated

          Oh, did you have that mai tai for me????

  • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
    JLP Registered Users
    Currently Being Moderated

    Hello...I am 24 - I relapsed with ALL when I was 22, and had my transplant at 22..I am now 2 years post transplant and it honestly still feels like it was just yesterday. I can most definately relate to your son ( I think). I also went through ALL when I was 15 -18. I know what it is like to struggle with school - and now am I am coping with a return to work program. I would be more than willing to correspond with your son or yourself - it is very important to be able to talk to someone who can relate while going through this nightmare. I did not have anyone my age going through the same thing to talk to, and  believe it would have been a great help mentally. I have had trouble finding discussion/support groups for my age group. Take care, and I wish your son much luck and strength while going through  his transplant.

  • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
    Toms-Mom Registered Users
    Currently Being Moderated

    I haven't posted anything in awhile.  My son, Thomas, has been battling his cancer for two years now.  He has HL however it has been aggressive.  He went through the regular chemo regimens, stem cell transplant this time last year and radiation.  We thought he had finally gone into remission this past summer but it came back.

     

    He started a trial drug and after two months was taken off because it wasn't working.  He is currently in a 30 day 'wash out' before he starts the next trial drug, SGN35 from Seattle Genetics.  It is up for approval from the FDA and has shown promising results for HL.  We had to wait because it wasn't available earlier in the year, trials were closed.

     

    He struggles every day emotionally.  He's retaining fluid in his left arm, lymphedema.  He had fluid build up in his chest cavity creating a problem breathing/coughing.  He had that drained last week which helped alot.  I pray he doesn't get so bad that he can't start the new drug.  He will begin the trial drug April 11.  It is a 30min infusion, administered once every 28 days.

     

    Has anyone been on this trial?

     

    Debbie, 

    • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
      tamithurman Registered Users
      Currently Being Moderated

      Hi,Debbie.  I'm sorry, I am not sure what HL is. Can you tell me about it? I'm with you about the emotional struggles of our kids.  My son has had a horrible year from being diagnosed with high risk, complex cytogenetics AML.  He had a stem cell transplant in June, 2010.  It has been an incredibly rocky road and I'm afraid to jinx it by saying that it looks like it's beginning to calm down.

       

      How old is Tom? Does he live at home? I don't know the trial you're speaking of, but at UCSF where we go, they are constantly performing trials and have had an incredibly high success rate, although as I said, I couldn't tell you what they were.  I just know that in our area, unnamed trials have done well.

       

      I know how difficult it is to see your baby sick.  My baby is 22 years old and watching this has been like watching someone else's life.  It's something I can't fix and it's the worst feeling I've ever experienced.  My heart breaks when I hear that others like you are also going through this.  This has been a great sounding board for me because I don't want to vent to my husband or other family or friends.  They all feel bad as it is and my friends will never really understand until they walk in my shoes.  I assume that's the same for you. 

       

      Youth, though, is on your son's side, so that is a wonderful thing. I've met a couple of families whose sons were going through various leukemias and they both had a horrible two years.  I won't into detail, but it made ours look like a cakewalk.  Now, one of them has gone on to UC Berkeley and the other has moved several hours from home.  They are doing quite well.  That always makes me feel better to know that they came out the other end and in remission after having battled some horrible side effects.

       

      Our good thoughts and prayers are with you and your son, Tom.  Keep the faith.  Get on this site and vent when you need to, but you will get through this.  Tom will get through this.  Big hugs to you and please check in when you get some time.  I know how difficult that is, but I would love to talk more with you.  xoxoxo.  Tami

      • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
        Toms-Mom Registered Users
        Currently Being Moderated

        Thank you Tami,

        Thomas is 20.  He came home from his freshman year of college with a 'boil' like on his throat.  This is where the cancer manifested itself.  He was still only 18, he's an Aug bday.  He has Hodgkins Lymphoma (HL) and is supposed to be one of the more curable cancers but it just hasn't been for him.

         

        He is my only child too which is so difficult!  He lives at home and we're only a 10 min drive to MD Anderson.  They have been great but lately it seems like we're just a number.  There are so many patients there.

         

        His dad, my ex has been a great help in doing research and being 'in front' of his care at MDA.  Which is great because I'd rather be there for Thomas in a more caring and comforting way.  His dad can be too overwhelming and it pushes Thomas away more than anything!  Sometimes he wants to just be with me to share our 'quiet' time together.

         

        His girlfriend has been there for him too.  They have been dating for over 3 yrs and she has stayed by his side. My husband has a hard time dealing with the situation so he tiptoes around it.  He has been Thomas' step-dad for 13 yrs now.

         

        The most difficult thing to handle is Thomas' attitude.  He kind of dwells on his situation.  He was in ROTC in college and wanted a military career.  He was also in aviation studying to get his commercial pilot license.  So all of that was blown out of the water.  No more scholarship, no more military, no more flying.  He can still fly but not solo so he can't get his private pilot license.  

         

        He is taking courses here locally in criminal justice but joining the police force is questionable because of his cancer.

         

        I keep telling him to forget about yesterday, don't worry about tomorrow and just take it one day at a time.  Out of all of this, I have learned to do just that.  My husband will ask me what I want to do for the weekend and my response is generally 'I don't know.  I'll see what I feel like when I get up!'   It's actually been kind of nice!

         

        After two years, I have also learned that this isn't my battle, it's my son's.  He has to get his mind set right with himself and with God.  I've questioned God why Thomas?  but it's not mine to question but to only believe  and trust that God has a plan.  I think that is what has given me peace about this whole thing.  It still hurts, I won't deny that!

         

        One day at a time!

        Debbie

        • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
          Kim-Zack'sMom Registered Users
          Currently Being Moderated

          Hi Tami and Debbie -

           

          So glad you have both checked in.  I only have a few minutes now to respond to your recent posts as I am heading back to a conference tonight.  That conference is a whole other part of our family's story.  Both of my boys, including my older son with leukemia, have had struggles with drug and alcohol abuse.  Runs in my family big time and the miracle is that they both are in active recovery.  That involves me too as their only surviving biological parent.  I have my own part to play and I actually find that community to be a tremendously healing place for me.  

           

          To answer Tami's question about my son, Zack's, leukemia, he has ALL (acute lymphoblastic leukemia).   He has B cell type and is negative for the Philadelphia chromosome.  Both of those last two markers are actually good news for people with ALL.  Zack's leukemia is much more common in very young children.  He was 21 when he developed ALL in March, 2010.  All of the research seems to indicate that the best outcome for young adults is to follow the pediatric protocols.  Zack's oncologist uses the Dana Farber protocol which is a 2 year treatment program.  He is in remission now and will not give him a transplant unless the leukemia recurs.  Zack is being treated at a huge cancer hospital here in Toronto, Princess Margaret Hospital, but there are very, very few people his age we ever see who have this type of leukemia.  He will continue on the same three week cycle he was on for 9 months before he started the maintenance phase of his treatment in December, 2010.  He is still on almost all of the medications he was on before, just 2/3 of the doses.  Every third week he has his most potent dose of methatrexate at the hospital. This also requires him to go on and off of steroids for a week at that same time which means he is constantly having to cope with the agitation, mood swings, weight gain, face bloating and sleep disruption.   He is hanging in there but is pretty isolated much of the time. 

           

          If there is any saving grace about this whole situation it is that we live in Canada so we don't have the medical bills that you all do in the States to grapple with.   We are responsible for paying all of his prescription drug charges but my office policy covers him, at least in theory.  They cut him off about 6 months ago but we're in the process of getting all of the back-up information filed to confirm he is still disabled. If the insurance company agrees that he is, we can file all of the receipts that have been piling up over that period.

           

          Oh, and in terms of the mai tai, I didn't have one of those while in Florida....just a whole bunch of wine!  (Not to worry, I don't have the same alcohol dependence issue my kids do.   If anything, my dependence problem leans towards the Ben and Jerry's end of the spectrum).

           

          Debbie - So sorry your son is in need of another trial.  I don't know about that trial as we are on another journey but I will ask one of the nurses when I am next at Zack's hospital in case any of them do.

           

          You both take good care of yourselves.  I have to run now.

           

          Kim-Zack'sMom

        • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
          Vicki918 Registered Users
          Currently Being Moderated

          My son won't reach out either and is depressed because of this cancer changing his life so much. I need 2 b more positive but i'm scared beyond belief...  Vicki

    • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
      Hope_Floats Registered Users
      Currently Being Moderated

      Debbie,

       

          I am sorry to hear about Thomas's struggles with HL....My son was T cell NHL, when he was diagnosed they kept telling us hope that it's hodgkins and not non hodgkins....I have seen as many struggle with hodgkins, as they do with non hodgkins.  My son's lymphoma was very aggressive and classified as a leukemia.  After 8 months of aggressive treatment, he relapsed in the CNS which required him to have his SCT.  We went to MD Anderson.  I just wanted to say that we felt like a number there....But all in all, he is now 4 1/2 years post transplant, so no room for complaints.  I wanted to tell you that we met a woman we became friends with when my son was first diagnosed.  She had had Hodgkins lymphoma, she had a allo transplant and she quickly relapsed, within six months she was headed to transplant again...that time she had a MUD transplant.  That was 17 years ago, and she has very minor residual issues today.  As far as the emotional issues, they are so difficult as well.  My son was never focused on the past or the future, but rather the here and now.  To this day he still maintains that attitude.  It's so difficult to look ahead when they are dealing with so much today.  I know your son has lost a lot, my son did as well (he was getting ready to play college football).  We try not to focus on what was lost, I think if we did it would make us too sad.  People always ask me how do you manage, I really don't know, one moment at a time.  We never planned ahead for the weekends either cause we never knew if he'd be in the hospital by the weekend (even if it were Thursday already).  Even this far out the gut wrenching fear never goes away completely, a cold, a flu, always have you wondering.  If I focused on it more, I'd never be able to function, so I try not to.  Just wanted to chime in, say hi, and let you know you are not alone....We hope and pray for your son's recovery.

       

      God Speed,

      Sue

    • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
      Vicki918 Registered Users
      Currently Being Moderated

      hi i'm Vicki and my son Jake has HL. What type does your son have if u don't mind me asking? Jake has nodular sclerosing and had abvd, 76% of it was gone after that, then radiation and he has a PET scan in 2 wks. I'm losing my mind with worry and no one i know understands. I want to be strong and positive.

      • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
        Hope_Floats Registered Users
        Currently Being Moderated

        I think as parents it is so hard to see our children so isolated....otherwise popular active young adults getting to the point where you are their only friend.  That is soooo sad.  My son is going on 5 years post transplant and he is still struggling with isolation.  We are from a small town everyone knows he was ill.  He remains bald to this day, so hard for them to forget.  He's not your typical young adult who wants to go out and party either so that isolates him as well.  I wish there was  someway they could all come together.  My son never went on line and talked to others either.....to this day he doesn't talk much about it.  Sometimes there is just no good answers.

         

        Sue

  • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
    Vicki918 Registered Users
    Currently Being Moderated

    i'm here. My son Jake has stage 4a nodular sclerosing HL. He's 19 and i feel totally alone. My son won't go on these sites and i'm trying not 2 go mental thinking of the upcoming PET scan ....uggh!   Vicki

  • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
    jaredsdad Registered Users
    Currently Being Moderated

    As the originator of this thread over a year ago this whole issue is still a thorn in my side.  When dealing with young adults - 18-23 - there still is a big hole in the support system for them.  Part of the reason is that many of them are still too immature to handle what's going on and feel separated from their peers.  They can't grasp the fact that there are many just like them dealing with the same issues.  In addition if they are being treated on the pediatric level, most of the Drs, psyc staff etc, really don't know how to deal with the emotional aspect.  They just don't have the resources and experience to deal with it.  If they are with an adult group, you're just a number to them.  Bottom line there are really no support resources for young adults.  The older young adults 24-32 - have a little easier time because of maturity level and their personal support system is usually better.  I've spoken many times to the people over at I2Y, and this is exactly what they are trying to create.  But, getting their message out is a rough road.

     

    Jared was 20 when dx'd - we're now into month 13 of chemo - 2 more to go, then maintainance.  The 1st 7 months were the hardest, because of harshness of his protocol.  Somehow, he managed to go back to school, went to treatment by himself, dealt with the side effects with very little support at school.  We live in NY he goes to college in Ohio.  His girlfriend has been great but. His housemates, really never grasped what was happening and how really sick he was.   In the fall semester, we had to bring him home a couple of times so he can get a "MENTAL" break, before he actually broke down (he came close).  The spring semester was much easier medically, he got his hair back, was able to eat.  As long as he could eat and get into the gym he was happy.  The one thing that happened over the past year our father/son relationship has gotten really close.  He tells me things he won't tell him mom because she would just freak out.  Manys time he doesn't even have to talk, I know exactly what's going on just by looking at him.  Many times when he was at school, i could tell how he's doing just by the sound of his breathing over the phone.  He used school as a way to focus his energy as an escape from being sick.  Somehow he managed to get a 3.0 in the Fall and made Deans List with a 3.75 in the Spring.

     

    As a parent, how do I cope, don't have much of a choice, I've accepted the situation  The only person I can really talk to is my wife, and even then I hold back so she doesn't have to deal with my emotions. Family and friends' really don't understand what we're going through.  Only the people on this message board and at the I2Y forums can understand, we've all walked miles in eachother's shoes.  I try to get out and run or go to the gym as a way to physically relieve stress, but, I'm stressed all the time, the nightmares still continue.  Our family right now takes each day as it comes.  Right now, due to Jared's cycle, we know exactly what will happen each time he gets treatment, so we all can prepare.  He goes back to college in 3 weeks for his senior year.

     

     

    Bottom line, we all have to stay strong, we don't have a choice.  Every once in a while, we all scream and yell and ask why, but, there is no answer.  Yesterday on Facebook, Kenny Kane posted an article written by comedian George Carlin - it ends with

     

    "Remember, spend some time with your loved onces, because they are not going to be around forever. Remember, say a kind word to someone who looks up to you in awe, because that little person soon will grow up and leave your side.

     

    Remember to give a warm hug to the one next to you because that is the only treasure you can give with your heart and it doesn't cost a cent.  Remember, to say, "I love you" to your partner and your loved onces, but most of all mean it.  A kiss and an embrace will mend hurt when it comes from the deep inside of you. Remember to hold hands and cherish the moment for someday that person will not be there again.  Give time to love, give time to speak and give time to share the precious thoughts in your mind."

  • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
    BaconMeisters Registered Users
    Currently Being Moderated

    I, too, am interested in the answer to your question, Mark. One of my 17 year old boys was diagnosed w/ALL this summer and I think it would be nice to connect with others in the high school/college phase. My son may be too young still for yours to relate to, but I wanted to respond. Did your son already have cancer when he was applying to colleges or was he diagnosed more recently? All the best to you, Laurie

    Only after I posted this initially did I see the full thread (I'm still learning) along with the answers to most of my questions.

    • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
      jaredsdad Registered Users
      Currently Being Moderated

      Lauri

       

      Jared was dxd June of 2010, he was just going to start his Jr. year of college.  There are many issue with dealing with the "mental" support of young adults dealing with cancer.  From my experience in the past year and 1/2 - is that there is almost no real support.  The Ped Onc groups are really not set up to deal with this issue.  they are used to working with younger children and infants.  Adult onc groups you're just a #.   Most young adults don't want to talk about their issues even among peers.  If your son is really into Facebook, Twitter, etc, social web, the best place is I2Y.com.  I suggest you even go there.  I2y was started specifically to deal with the issues of young adults dealing with cancer.  They are a great bunch of people, their site and forums are great.  This sight is great for information, but, "no offense to some of you"  this site, is more geared to young kids and infants but, again it's a great place for information and support for parents .  Young adults, teens, are caught in a limbo.  If you want, my email it's in my profile, send me an email and I'd be more than happy to foward you Jared's email.  I'm sure that he would be willing to answer you son's questions.

  • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
    Toms-Mom Registered Users
    Currently Being Moderated

    Hello Everyone.  Well it's been awhile since I posted an update on my son Thomas.  He did go through the trial SGN-35 back in April.  Had amazing results, tumors were totally gone!  However, two months later they were back.  We just get our hopes up and then get devastated.  He knew of course because he had the night sweats again and the coughing started up again.  After a 30 day 'washout' again, he started on another trial drug.  Pills, once a week.  He's doing ok.  Still has a cough.  We know he has tumors in his lungs.  This drug suppresses his appetite so he's 110lbs at almost 6'.  He knows he needs to eat no matter what but trying to get him to is another story.  He keeps his spirits up by going to work.  He helps his girlfriend out with school and she helps him with being by his side.  I go to work because I have to and to support us.  We still just take it one day at a time.  I have started to distance myself.  After over two years of dealing with this, we know we're running out of options.  He knows it too.  We are at MD Anderson.  One of the best, right?  Well, God's plan is not ours.  Now we try to accept and understand God's ways.  And just take it one day at a time!  Blessings to all!  Debbie

    • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
      tamithurman Registered Users
      Currently Being Moderated

      Hi Debbie. I've been on a few day vacation trying to feel like a normal person after our 18 months of hell with my son, who just turned 23, diagnosed with AML when he was 21. He had a stem cell transplant in June, 2010, and up until his year biopsy, everything seemed okay, although he had horrible side effects; CML, BK Virus, and GvH. His biopsies, however, came back normal each time until June. They said he has either 2% or 4% blasts in his marrow, depending on which doctor you speak to. He is back on 5-day chemo every four weeks and is getting ready for his third time. I'm not sure when he gets another biopsy, but I've been panicked ever since. So I completely understand your feelings, although not sure how you distance yourself. I am so saturated, I'm making myself sick. We go to UCSF and even though they are very busy, I feel they know Brent so well, they all rally around him. But I'm afraid it sounds like you and your son have given up. I hope I'm reading that wrong. I hope he stays strong mentally, which is the most difficult thing to do. I dont know how you are going through this portion of his illness, as we aren't at that stage. But while he is still here, there's fight left. Perhaps a different type of transplant? I dont know if I'm just grasping or what, but your post has stayed with me all week. I kept reading the part of how you're distancing yourself and it just makes me cry each time. I am praying for both of you and always will. Stay strong. Miracles do happen. T

      • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
        Kim-Zack'sMom Registered Users
        Currently Being Moderated

        I have not been on line in a very long time and have just checked my e-mail account to catch up.  It sounds like a lot of us who have logged in lately are at or near the two year mark in our children's cancer journies.  My son, Zack, was diagnosed in March, 2010 with B cell ALL.  He is on a two year pediatric protocol (Dana Farber).  He is now 23 and if all goes to plan, he will finish his treatment in March, 2012, just shy of his 24th birthday.  While my son is in remission, he still suffers terribly every three weeks when he has to go back on the @!$%&! steroids - by far the worst drug he has had to endure.  He is quite flat emotionally and is pretty isolated too.  I know what it is like to start feeling distant.  I know that my son often doesn't want to let me in and I know that it is not the least bit normal for him to be home and seeing his life put on hold for two years. The advice I was given was to hang back so that my son has the space to come back and ask me for help.  I can bear it sometimes but other times I cannot stand to watch him spend another day holed up inhis room.  To you all, hang in there and know that I am out here pulling for you and your children.  

        • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
          Toms-Mom Registered Users
          Currently Being Moderated

          It's nice to know I'm not the only one sooooo busy!!!  My son Thomas started another trial drug about a week ago.  He had a pet scan, cat scan and bone marrow aspiration and Thank God the cancer is still only in his lymphatic system, it has not metastasized.  This trial drug makes him nauseous but not all the time.  The doctor told us to give it a couple of weeks to see results.  So far, he has seen a reduction in some of the lymph nodes so that's good.  Considering his past experience, we try not to get too excited.  He's staying busy at his job which keeps him focused on other things and not his cancer.  It's almost 2 1/2 years since his diagnosis and we all just try to live life as normal as possible.  If we get too uptight about the cancer then it becomes our focus.  I have learned through my faith and belief in God, that we should all just take one day at a time.  Don't hang on to the past and don't stress about tomorrow.  Live for today!  Love and peace to all!!  Debbie, Thomas' mom

        • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
          tamithurman Registered Users
          Currently Being Moderated

          Hi Kim. I'm so sorry about your son's isolation. My son was diagnosed March, 2010, and until about March, 2011, he was very isolated due to being unable to be around crowds, the steroids making him look like a different person and his fear of the sun for a very long time. He obviously couldn't work at that time. Now, he is back to himself, even though in July, a BMB found 4% blasts in his marrow. I'm still fuzzy on blasts. I thought some were good and some weren't. Anyway, this has been another bump in this road. He is in his third round of 5-day chemo every six weeks for a total of six sessions. I have to wait until January to find out if it worked. Freaking out. I completely understand your concern and worry. I do every single second of the day. I wake up and go to sleep thinking about it. I try not to, but it's like the big pink elephant in the room. My husband and I are wrecks. But he looks and feels good and other than his biopsy, his other numbers look good. Too confusing for me. Why do the other numbers look good if he has blasts in his marrow? Ugh. Anyway, enough of my whining, I just wanted to say hi and tell you I understand. tami

          • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
            Kim-Zack'sMom Registered Users
            Currently Being Moderated

            Tami -

            Good to hear that things have settled out with your son.  I know that we all have to get used to the idea that the cancer door will never close behind us but that we have to get used to living with it,as Debbie says, one day at a time.  We are looking forward to March, 2012 when my son finally finishes treatment, hoping that once his body isn't being bombarded by the chemo and the steroids any longer that he (and the rest of us) can lift our heads up and start looking forward a bit further.  I am thinking of getting off my duff and training for the Team in Training half marathon next May.  It could be a good thing to get me back in shape and to raise some money for the Leukemia and Lymphoma Society.  Hang in there and the best to your son.  Kim-Zack'sMom

          • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
            Kim-Zack'sMom Registered Users
            Currently Being Moderated

            Tami -

             

            P.S.  I'm afraid I don't know anything about whether blasts at any level are a good thing or not.  With my son's ALL we haven't come across that, perhaps because he is still on an active protocol.  I will pray for your son that everything be just fine and that he can go back to being a  young adult again as opposed to someone who identifies more as a cancer patient.

             

            Kim-Zack'sMom

  • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
    bobsmama Registered Users
    Currently Being Moderated

    Hello I am new to the boards, I've been lurking since July. Our son was dx July 1, 2011with Pre B ALL Ph-, normal cytogentics. He is being treated at Phoenix Children's Hospital, Phoenix Arizona. The protocal is COGALL0232. During induction he achieved less than 5% blasts on day 7 and MRD Negative on day 29. He has done quite well other than a few bumps. He had a reaction to Peg Asp. -- pancreatitis / blood clot. That wasn't fun at all, a total 5 day stay in the hospital. Doctor graded it as Moderate and will try again. He had to skip one dose. He has two more to go.

     

    He is currently in Interim Maintenance I, and will have his last high dose of IV Methotrexate on November 15th. He has done pretty well on it, and his counts have been great. He'll start DI after this in December and that means back on those dang steroids... not looking forward to that. But so far so good. And then onto Maintenance.

     

    Frontenrose and Jaradsdad can you guys give an update? Are you doing chemo only? What protocal did you guys get your kids on? How did they do during induction remission? Frontenrose, did your son complete his Peg doses? Tami I read your entire caringbridge site. Looks like your son is doing very well.

     

    I feel better already, just posting here.  I am still thinking of getting a second opinion just to make sure docs don't see anything leading towards a transplant. Its been very hard on both my Hubby and I, but mostly me. Trying very hard everyday to stay positive and adjust to the changes to our lives. Just when it seems like its getting better, I break down. I have lots of family but they are spread out and don't quite understand. I keep a lot to myself. My best friend has been so wonderful, we keep in touch often. I have a sister who lives across the street, she visits when she can. I have another one who has been by my side from day one. She comes to visit and stays for a few days. Don't know what I'd do without them. I have two neices who have made themselves distant. I just don't understand that part and it hurt so much. But I'm getting passed that. Not sure if our relationships will ever be the same though. So hard... 

     

    Anyway, thanks for listening. Hope we can start this conversation up again. I have some suggestions to get the word out. Not sure if any of you have check out the stupidcancer forums. Its loaded with young adults with cancer supporting each other. I don't see many parents. Most of those adults are like 23 and up. I'm looking for 19-21 age range. Its such a difficult age. But I am grateful my son is very social. He doesn't wait for his friends to come to him, he goes to them... and then vice versa. He's a riot. Gets along well with the nurses, they all like to request having him as a patient. 

     

    Good night all...  

    • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
      jaredsdad Registered Users
      Currently Being Moderated

      Haven't been posting much anywhere, fortunately much too busy.  Jared is doing really good.  Usually T-Cell Lymphoblastic Lymphoma in young adults is very aggressive and creates huge masses. He's had none of that. Had a really tough time with chemo for the 1st 6 months of treatment.  Just before he went back to school in Aug, he had a bad case of alopecia due to side effects from a substitute Chemo drug. Really set him back mentally, almost didn't want to go back to school.  The good news, his hair is back, he started maintenance in Oct - which is oral chemo pills daily, once a month Vincristine, and every 3 months MTX Spinal, will be doing this until Nov 2012.  He feels great, goes to the gym everyday, he's a manager for the University's Men's Basketball team, just traveled to Georgia for a tournament, going to Miami with the team for another.  Can't believe he graduates college in May - now on to Grad school for either his MBA, or Masters In Sports Management.  After reading all the stories here and over at Stupid Cancer Forums, Jared is really lucky, many others have suffered worse than him.  But, cancer is cancer, today he might be doing well, who knows what will happen in the future.  I know that he's just pushing along, but, as a parent it's always in the back of my mind.  There's not a day that doesn't go by that I don't think of the cancer coming back worse.  Whenever I have the opportunity I voice my opinion on supporting young adults with cancer.  In this months issue of HemOnc Today, there is a great article about young adults and adolescents with cancer.  A very sobering fact " Cancer is the most common cause of death in this age group 15-39, aside from homicide, suicide and accidental injury"  that's a very scary statistic.

       

      Stay well everybody, give the kids a kiss and a hug - remember you're not alone in this fight - there is some light at the end of the tunnel

       

      Happy Thanksgiving

       

      Mark

      Jaredsdad

      • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
        bobsmama Registered Users
        Currently Being Moderated

        [quote]

         

        After reading all the stories here and over at Stupid Cancer Forums, Jared is really lucky, many others have suffered worse than him.  But, cancer is cancer, today he might be doing well, who knows what will happen in the future.  I know that he's just pushing along, but, as a parent it's always in the back of my mind.  There's not a day that doesn't go by that I don't think of the cancer coming back worse.

        [/quote]

        Thank you so much for your update. I hear ya and same here. Our son did have one major setback due to grade 3 pancreatitis, reaction to PeG Asp. and as of today, will not be getting anymore in the next round. The Cancer coming back is my fear since skipping three more doses. However, our Onc seems not to be too worried about it. Don't get me wrong, he would like for Bob to have it, but its too risky. He is banking on Bob's Markers during Induction less than 5%blast on day 7 and negative MRD on day 29 - .0009, almost zero.

        I too thought about a way to bring more awareness to our community about Young Adult Cancer, and seriously thought about a Reality TV show. So that others their age will see what they go through. Plus others out there who are survivors may come forward and could be on the show for support. Its alot I know. And I haven't thought too much in detail about it, so may not be a good idea. But what I did think would be good is that the Young adults could come together to help each other. Make some money to pay for medical, educational and living expenses, and possibly onto celebrity-dom? Now I know that's pushing it... lol! And I don't mean in anyway to make light of the situation but hey Young Adults suffering from cancer have normal lives and struggles just like everyone else but have to work harder. People assume just because they're young, they are stronger, more resilient and don't need support. They need lots of support from the Community like Breast Cancer and other cancers get. Just a thought!

  • Re: WHERE ARE ALL THE YOUNG ADULTS AND THEIR PARENTS?????
    SheebaKersten Registered Users
    Currently Being Moderated

    I can relate. I am 27 and a ALL survivor. I was just stressing how there is no support for the young adult and it sucks! We need to come together to change this. we need support too...

More Like This

  • Retrieving data ...