Why I am on Inspire

• By meichner
• Posted April 26, 2009 at 1:35 pm
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Hello and welcome to the Georgetown Hematology/Oncology Parent Link web site. We hope to provide support and current information about Childhood Cancer. It is always encouraging to hear from Childhood cancer Survivors and their families. My daughter, Danielle, was 11 when she was Ddx and treated for T-Cell Leukemia. As parents of Childhood cancer Survivors we have a wealth of knowlege to share with families traveling down this road. And as that old saying goes, "To know the road ahead ask those coming back."
Marilyn

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• By BJsmom
• Posted September 13, 2009 at 6:17 pm
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My son has been diagnosed with chondroblastic osteosarcoma since Aug 2009 and is due for his second round of chemo this week. He is scared to death and since I have Kaiser they have fought me tooth and nail rather than give him some thing for anxiety. How did you deal with your son's fears? Any advice is so welcomed. BJs mom

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• By Lub1
• Posted September 13, 2009 at 9:20 pm
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What exactly is chondroblastic Osteo? How old is BJ? Where are you being treated? I know at Georgetown if the child is anxious they treat the anxiety with meds. if needed. Greg only had anti-anxiety meds occasionally. Greg was very angry. He had just turned 14 two weeks prior to diagnosis. Greg is here with me now and I asked him about this. He told me to tell you to tell BJ to be "positive". We found the positive attitude really helps. He/we never thought he was going to die. I told him "to think of his illness as a terrible inconvenience for him , but we would get through this" and we did. We never told him there was anything he couldn't do because of his arm. Also, marilyn who spoke about her daughter ,Danielle, in the first response knows more about Kaiser than I do. She will answer your questions. But, it will really help if you answer the questions I asked about BJ's age and where you live. Also where is his Osteo? Thinking about you .
Lub1 (Patty)

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• By BJsmom
• Posted September 27, 2009 at 4:43 pm
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Sorry it took me so long to reply-just finished third round of chemo. Brandon 's cancer was in his right proximal femur. He had the tumor removed and a metal prosthesis inserted into his hip. Because of the total hip replacement, he has been told by his doctors that he will have alot of limitations as far as sports and daily activities. He's angry and scared about the loss of control and the total change this diagnosis means. He was going to tryout for the high school baseball team, was active in football and track and now the doctors tell him that he should think about golf. I know in the scheme of things this might seem petty but to my son this is devastating.We live in California and have been going to Kaiser in L.A. Thanks for letting me vent. Tanya

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• By Lub1
• Posted September 28, 2009 at 12:20 pm
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We never told Greg there was anything he couldn't do. The things he could do he just compensated. Like swimming. He was told he could not play baseball or ice hockey again. He has taught himself to drive the ball and use his woods left handed and one armed in golf. He does not want to have another limbsparing surgery since he had issues with the last (2nd) one. He has a cadaver bone in his arm. Greg was supposed to be at ice hockey camp in Canada the weekend of his first chemo treatment. So , I know the anger you are dealing with. Let me get in touch with Marilyn (above)because as I said she works for Kaiser in MD. The Dr. put me in touch with Marilyn and her daughter Danielle when Greg was very, very ill and i was loosing my mind. I needed to talk to someone. I hope things will get better for you soon. Football is definitely out for BJ. What about biking? Paty

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• By meichner
• Posted October 4, 2009 at 11:05 am
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Hello Tanya ~
It's very nice to meet you and sorry it's because your son, Brandon, has been diagnosed with cancer.
My daughter, Danielle, was a competitive swimmer when she was diagnosed with cancer. She was a very angry girl when she realized that a future involving competitive swimming was not going to happen.
I remember wanting an anxiety drug for Danielle.
I needed an anxiety drug for myself! However, I was informed because of the stress that the chemo drugs were putting on Danielle's liver ~ her onc doc would not okay a drug to help her with anxiety or her anger. What helped Danielle was the therapy she received from the art therapist at the clinic. In hindsight and knowing what I know now ~ I would have had Danielle in one on one therapy in addition to working with the art therapist.
In hindsight, I would have had myself, my husband, and my other children, in family therapy from the very start. I strongly recommend this for Brandon,for you and your family. It would be best to see a therapist that has knowledge about cancer. However, if this is not available, remember therapy with or without cancer knowledge is better than none. We found an organization that had camps for the patient, camps for the sibs, and family weekend events. Knowing that Danielle would most likely hate any camp, I didn't hold much hope that she would connect or even go. I believed this especially since she was almost a teen and a very angry teen to boot. I was wrong. The camp was fortunately/unfortunately filled with young kids and also many teenagers who had been diagnosed with cancer. There is an unspoken understanding when children/teens/young adults in treatment for cancer or cancer survivors come together as a group. I have been so inspired and amazed at how they support one other. Danielle has made life long friends from her camp experiences. These kids talk to one another, they share stories, they compare, they understand that their world is now different. I would recommend that you investigate camps in your area, even if Brandon is totally against this. Also, there are web sites for teens and young adults ~ another place were one can vent and gain insight from others. The "Stupid Cancer Show" is aimed at teens and young adults and can be found on the web. I did learn early on that we (Danielle's parents) had to remain positive through everything. Danielle looked at us for answers. So, if she could pick up that we were concerned, fearful, or worried, than she became even more fearful. Her thoughts were, if mom and dad are worried and upset than I must be really sick! This is not to say that I didn't cry and have angry break downs, I did, I just didn't do the heavy stuff in front of Danielle. She knew it was okay for her and her family to cry, be sad, be angry.
However, on the flip side, Tom & I knew we had to be her positive side. Danielle was a vey sick kid. We were pulled into an office in the middle of the night and told she would not survive through the weekend. Danielle went into multi organ system failure. I refused to believe that she would not survive. I painted a picture of survival in my mind and kept it there. I'm one of the fortunate parents ~ in that my daughter survived. Cancer diagnoses for any family changes everyone's life in that family forever. Tanya ~ there are many of us out here who are willing to listen, willing to offer advise, willing to offer help. You are not alone and neither is Brandon ~ even though you probably feel quite the opposite at this moment. You are Brandon's advocate, so explore every angle and every corner. If one thing doesn't fit or doesn't work than find another. Connect with another family in your area that is going through what your family is going through. Help Brandon connect with another teen who has successfully completed treatment. Most know that one of my favorite sayings is, "To know the road ahead ask those coming back".
A personal friend had his leg amputated as a young teen. I will honestly have to tell you that "Larry" can dance, run, ski, better than most with his one leg. I'm not kidding. Once when I was at camp for a family weekend ~ I saw a group of guys running and amidst the group was Larry running with one leg. Amazing!
www.lessthanfour.org and www.laf.org are two web sites that Brandon might want to explore. I will say, Danielle, did not care much about exploring web sites when she was sick and didn't feel good, so I explored for her. FYI ~ Danielle is now 24 yrs of age. Danielle is currently living in Chicago and working on her Master's degree in "Art Therapy". She will graduate this Spring. Danielle also returns every year to Camp Fantastic as a camp counselor ~ loving every minute.
Amazing ~ there is life after cancer!!!!
Our gratitude is boundless.
Marilyn

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• By BJsmom
• Posted October 27, 2009 at 10:44 pm
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Marilyn, thank you so much for replying. I am trying to keep it together for Brandon and my family but sometimes I feel so alone. I've finally asked to be transferred to a new oncology group because the one Brandon was with didn't seem to care. All I want is compassion from the people caring for him and all he seems to get is avoidance. Besides hy have him on a regula pediatric unit and I am so afrais he will get an infection. He needs to be somewhere where there are children like him. We live 70 miles away from the hospital he's going to now and I have never been offered a Ronald McDonald room or any other type of support. Here I go venting again when my kids are waiting for me to play monopoly with them. So thanks again for listening and I will fight to make this better. Tanya

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• By Lub1
• Posted October 28, 2009 at 12:12 am
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Hi Tanya, I know how Brandon feels. Greg was very angry for a long time. Greg just tried biking with his friend and his arm hurt because of being in the same position for so long, so that's out. He is playing in a no contact ice hockey league this season. I went to his game last week(11:15pm) to watch. I never thought he would play ice hockey again. I sat with tears in my eyes watching him.He uses his left arm to hit the puck just like he does in golf. Unbelievable. Like us your lives have been turned upside down with the Osteosarcoma diagnosis and nothing will be as it once was. How is BJ doing with school? Is he going? Greg missed all of 8th grade because he was so ill. How is the anxiety? I had Greg talk to Drs. after treatment. He said it didn't really help, but I don't know if he opened up or not. I think he needs to see someone now because of Post Traumatic Stress. He agrees and puts it off. Tell BJ that Greg went to college and pledged a fraternity. I was very worried about the pledging, but Greg said they were mindful of his arm. Remember there is no right or wrong way for you, Brandon or your family to be feeling right now. Whatever you are feeling is perfectly normal under the circumstances. Brandon is mourning his past life that he once led. That is perfectly normal for him and for you. So vent all you want. I never got upset in front of Greg because if I did he knew things were bad. The car or the shower were my crying places. It is up too you? Greg's treatment was very difficult at times. He had an allergic reaction to Methatrexate and suffered renal failure. We never gave it to him again. Greg compensates for what he can't do with his arm , but he is alive. Would BJ like to email or talk to Greg? When Greg was in treatment I often wondered if there would be life after cancer? A normal life, one where we laughed again. And yes there is. Now we see things differently and don't sweat the small stuff anymore! Take care, thinking about you as you fight the battle. Patty

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• By meichner
• Posted October 28, 2009 at 10:06 pm
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Hello Tanya ~

How old is BJ?

I'm posting several web sites at the end of this message about camps in the CA area for the patient and also the siblings.

Also, check out ~ Imerman Angels ~ which is a wonderful organization, not only for the patient but also for you, the care provider.

www.imermanangels.com

Imerman Angels connects a person fighting cancer today ("cancer fighter") with someone who has beaten the same type of cancer ("cancer survivor"). The relationship provides a fighter the opportunity to ask personal questions and receive encouragement from someone who is uniquely familiar with the situation. The relationship provides a survivor the opportunity to personally help a fighter as he or she battles the disease.

The nature of the 1-on-1 relationship is up to each fighter-survivor pair. Perhaps the survivor will go to the fighter’s first chemotherapy treatment, or maybe the pair will simply speak on the phone from time to time. In other words, the fighter and survivor determine the depth of their own relationship.

In addition, Imerman Angels also connects “caregivers.” A caregiver is a friend or family member who is supporting a cancer fighter. Like fighters and survivors, they wish to be paired up with another caregiver who relates to and understands their situation. For instance, we have introduced the mother of a three-year-old cancer fighter to the mother of a four-year-old cancer survivor.

Although Imerman Angels is based in Chicago, we help cancer fighters and survivors across the United States and the world. While sometimes a cancer fighter and survivor live in the same city, we have connected people from different cities, even different countries. We have found that the 1-on-1 relationships are not limited by geography. For example, we paired up a cancer survivor in northern California with a cancer fighter in Guatemala.

Whether you are a cancer fighter, survivor, or caregiver, our service is 100% free. Imerman Angels does not turn anyone away.

Imerman Angels is a federally registered 501(c)(3) not-for-profit organization. All donations are tax deductible.



[CALIFORNIA]

Camp Okizu, 415-382-9083
16 Digital Dr.
Novato, CA 94949
Provide recreational, respite and peer support programs to meet the needs of all members of families affected by childhood cancer.
AGE RANGE: 6-25
COST: FREE
[website] [email]

Camp Reach For The Sky, 800-ACS-2345
2655 Camino del Rio N Ste. 100
San Diego CA, 92108
The American Cancer Society is proud to offer free summer camps for children with cancer (in treatment or remission) that provide a peer-supported place to become kids again see that they are not alone in their struggle.
AGE RANGE: 4-18
COST: FREE
[website] [email]

Camp Ronald McDonald For Good Times, 800-625-7295
954 Cotner Ave.
Los Angeles, CA 90025
Offers activities of a 'normal' camp, adapted to meet the special needs of young cancer patients and their siblings to promote self-esteem, confidence and friendship.
AGE RANGE: 0-19
COST: FREE
[website] [email]

Camp Sunshine Dreams, 559-353-5443
PO Box 28232
Fresno, CA 93729
Designed to offer the child who has cancer a camp experience as similar as possible to the typical summer camp experience enjoyed by well children.
AGE RANGE: N/A
COST: FREE
[website] [email]

Camp Tuolumne Trails, 209-962-7534
22988 Ferretti Road
Groveland, CA 95321
A nonprofit camp in Groveland California for children and adults with special medical needs. We provide year round camp and programs for them and their families at a low cost. AGE RANGE: ALL
COST: Varies
[website] [email]

Dream Street Foundation, 323-951-1227
6399 Wilshire Blvd. Ste. 721
Los Angeles, CA 90048
Giving children with cancer the opportunity to make special adjustments to new and different people, learn responsibility, and often gain new skills that increase self-esteem.
AGE RANGE: 4-14, 18-24
COST: FREE
[website] [email]

World's Greatest Camp, 949-855-1972
PO Box 6023
Orange, CA 92863
Through recreational and social activities, we bring together families facing similar struggles in a relaxed, comfortable environment where they can share burdens and offer each other support and hope.
AGE RANGE: N/A
COST: FREE
[website] [email]

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