Feeling like family is useless

Hello all, this is my first post. My son (19) was diagnosed with ALL this last may. He went through several chemo treatments but then one day all of a sudden he was feeling pain in his side and was feverish. I called his doctor and he said to take him to emergency which I did, and they said he had an enlarged spleen and a higher then normal white count but that it was no big deal and to just bring him to his appointment Monday (this was the tuesday before). So we take him home and his pain just gets worse each day but they said not to worry about it, so we DONT...and friday comes with his BMT consultation appointment at our states best Luekemia/childrens hospital (OSHU).

They found his white cell counts to be so high and his spleen SO big that he was in PICU for 5 days and we didn't know if he would make it. I am so mad at our local hospital it isn't even funny (NEVER take your child to Salem Hospital for ANYTHING).

Ok.....to the main point of my post:

He is receiving excellent care at OSHU. The staff is incredible in making you a part of the team. They really make you feel supported. Which got me to thinking that it would be wonderful if family was equally supportive.

All Max seems to have are Me and My mother and his brother. The family on his fathers side quite frankly are beginning to infuriate me. None of them have called or visited (and they LIVE IN THE AREA OF OSHU !!!!!)

I've read so much of family helping the patients immediate family out, sending cards to offset food, gas etc. But we haven't even been asked if we need anything. I hope I'm not sounding entitled. I'm really NOT, but I would think that NOW would be the time to come forward and do your job as grandparents.

They never came to hospital in salem because of numerous weak excuses (such as I don't like to drive in cities), they haven't visited in OSHU.....but I tell you what they ARE good at. Foisting yet MORE on me...trying to make me feel guilty for not calling with every single update etc etc.

Don't they GET that quite frankly, I don't have the energy sometimes to make phone calls. Being with and helping Max is all I care about OR have energy for. Why don't they understand that they aren't helping me with their non-communication. It would show Max they care if they just made the effort to visit. It would help ME if they would offer food or ANYTHING (they have money) so that I wouldn't have to keep leaving Max to go get it.

You really get nickel and dimed eating every meal in hospital. And I won't even go into the costs of lodging so that I can stay near to him (me and my mother take turns staying in room with him and the other goes to motel for a good sleep). Ronald McDonald house isn't a help at all. They won't take us because my son is 19. Which is infuriating because what does THAT mean ??? That he's not special anymore because he isn't under 18 ???

Sometimes I just want to collapse from the stress. I love my son to pieces and nobody out there seems to care (with the exception of hospital staff). I even recently left a message board in which I was a member for 2 years because some incredibly mean-spirited people told me that "this isn't your support group, if you want to vent, do it elsewhere".

I was shocked that people can be so insensitive. In fact, its a good thing I don't know where the person lives who said that, because I would probably be in jail right now for what I would have done to her. I try to deal, the best I can in front of my son and show none of these angry feelings, but you guys, sometimes I feel I will expode at the sheer callousness of people.

Anybody else here experience this with outsiders and family who doesn't seem to care ? If so, how do you handle it ?

By Saraannesmom
Posted October 25, 2009 at 2:51 pm
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I understand how you feel. We've had some instances where certain family members haven't been there for us. Like my mother-in-law. Everytime she is in Houston (that's where my daughter is being treated) she always comes up with an excuse for not being able to see Sara (and that was whole purpose of the trip!!). She has helped us financially but Sara wanted to see her... Sometimes just being there helps. I feel like my mother doesn't want to bother other relatives or friends about what her granddaughter is going through and hasn't reached out to them. But for the most part, the community, friends and most of the family has been real supportive of us. My 7 year old daughter was diagnosed with Acute Lymphoblastic Leukemia this past January at OU Children's Hospital in Oklahoma City. She received a cord blood transplant in May at MD Anderson Cancer Hospital in Houston, TX and is doing real well.
I don't know if you have the time but maybe setting up a website like on the caringbridge website can help with keeping everyone up to date. We have one for Sara and have even put info on there for anyone that wants to donate to Sara's medical expenses. It is real easy to setup. When we transferred Sara's treatment to MD Anderson, a social worker was assigned to Sara and she gave us all kinds of resources for financial help as well as places to stay.
I've learnt to just move on and accept that some people are not capable of being supportive. I can't change them and for me, it is a waste of my time to get upset over that because it's not doing me any good. I've got more important issues to deal with. It was hard in the beginning though. And I try to be positive. This whole ordeal has been an emotional rollercoaster and still is for us.
I hope some of what I wrote helps you. You are doing the right thing about talking/writing about it. I hope you can find some relief! My prayers are with you and Max!

By monahan1
Posted October 26, 2009 at 8:35 am
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I am so sorry to hear about your son and glad to hear you were able to get him stabilized with his spleen problem. Dealing with local hospitals are enlightening! Dealing with cancer makes you realize how medicine isn't so much a science at times and more like witch medicine. You just have to find the right witch. Glad you were able to get to the right place.
As for the family issues, I am sorry to hear that you must go through that too. Like Sara's mom, I didn't have the family support during my daughter's treatment for ALL. Cancer is very isolating. It is the big elephant in the room. After the initial period of well wishers, people fade away. They don't understand how long the treatment takes. They don't want to know how difficult it is. They can't wrap their heads around it. My elderly parents lived far away, as did both my sisters. My parents came for one visit; then my dad got sick. My sister that lives in Japan came over the second year for a drive-by. My in-laws showed up occasionally but they don't like hospitals. It was my husband's siblings that were reprehensible in their behavior. They held a fund raiser then never gave us the money. What I discovered was that I had to make a new family. That family was the people who were going through treatment with their own kids. They understood, they could make suggestions and they were always encouraging. I would encourage you to talk to as many other parents at the hospital as you can. Do they have a parents' support group there? (Candlelighters has one at my hospital. But I live too far away.) Even if you can't meet at a regular time, you can always meet online. I also felt it helpful to maintain a blog. CarePages or CaringBridge are free. If you don't have one, start one. It will help you to not only reach out to others, but also to vent and even educate people about what your son is going through.
Cancer care is incredibly expensive. Even if you have excellent insurance, the gas, the meal money and for some, the cost of housing, just keeps adding up. It is overwhelming. I understand who frustrating it must be about the Ronald McDonald House. Have you spoken with a social worker? There are other resources out there. Since he is older, there are still options out there to help "adult" cancer patients like housing. Additionally, he should still qualify for CHIP because it is a catastrophic illness. Even if you have other good health insurance, all the co-pays add up. The CHIP would help alleviate some of the stress. It sounds like you really need to sit down with the social worker and get some relief.
Sadly, you are not alone in your feelings, frustration and fear in dealing with your son's cancer. There are lots of families out there (42 kids a day diagnosed) and many of us aren't the poster families who handle it with so much grace. The more you are able to talk to other families, the better you will feel. It won't make his cancer go away or shorten the treatment. But you'll be able to connect with others that get it. And just that feeling makes it all so much more tolerable.
My daughter finished her treatment for ALL in June. Of course, it's not over. We still have a long way to go with monthly testing for a while, then easing off. Then there is the clean-up on Aisle 8 for the side effects of the drugs. But I want you to know that there is the other side. You can get there and it is a good place to be. You just have to work hard to do it.
Wishing your son lots of strength, courage and healing. Wishing you lots of strength, courage and healing too.
Sherry
PS.
If you want to check out my daughter's site to give you an idea:
www.caringbridge.org/visit/fionamonahan

By alclmom
Posted October 26, 2009 at 12:09 pm
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Oh, I can relate...I won't repeat what the previous 2 posts say about Caringbridge or Carepage and talking with your social worker about resources, that's is exactly what I would have responded with. Those have been blessings.
My daughter dx at 12 last year with Anaplastic large cell lymphoma (Non-Hodgkins) just finished a 12 month treatment with chemo. One month after she was diagnosed, my mother (her grandmother) dropped off the face of the earth. I also did not have the energy or time to be calling everyone, i hoped she would have called me more, but it never happened. I begged her to come stay with us (only 2 hrs. away) and no response. I have not spoken to her since then, I have forgiven her but only for my own purposes. If I hang on to that anger and resentment it would only add to my level of stress which I cannot afford. Priorities, you know. Unfortunately for her, she is missing out on all of her grandchildren's lives because of her stubborness. At the time that we needed it most, she chose to back out, maybe she just couldn't deal.... i don't understand either why some people react that way, but the reality is everyone handles things different, and just because your family isn't doing what you thought they should, I am sure they still love and care.
Definitley set up a caringbridge or carepage, or have a friend do it. It's easy to send the link to friends and family and at least that would help take out that communication factor on your end.
I hope and pray for your son for a full recovery and successful treatment, there is hope.
Peace to you in your daily struggle.

By jennm
Posted October 28, 2009 at 11:56 am
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I'm glad your son is doing better after his emergency nightmare. We learned that the oncology dept/doctors practice/think completely differently than the standard doctors. EVERYTHING is a big deal when you are undergoing chemo. there is never a "don't worry about it" it seems. Whenever we have heard that in regards to our son (Diagnosed with ALL at 2 1/2yrs. Just finished treatment this summer at 6yrs and doing well) the warning bells go off immediately. Unless they deal with the uniqueness of the different cancers and patients they don't quite get it. On the several occasions where we have had to see a Dr. other than his regular one I will call first thing to his regular docotr to update/consult them on the previous night's problem. I find that usually they will want to see him and it works better to help alleviate our apprehension as well on the diagnosis that the "temporary" Dr. gave. Talk with your son's Doctor & nursing staff about your concerns. If they make you feel like you are being overly concerned maybe you should consider changing doctors. We found it SO important to be able to comfortably talk to the doctor and staff without being made to feel like we were being paranoid/silly with our questions.
This whole cancer gig is a MARATHON. You'll finish in better shape if you build a good team.
As for the family thing... every single parent I have sat next to has had similar problems. Including myself. Fortunately my mother has been like a god send for helping with babysitting when he was small so I could continue to work (so we at least didnt loose the house) and my dad also. My husbands family(he is one of 8) are more the sprinter types. They all showed up at the hospital at diagnosis (when we asked them not to especially with small kids that have colds) . Two of them did small fundraisers which helped alot witht he inital copays etc. They all called alot the first month/or so. Then it all slipped into the "by the way" catagory or how is Mike? There are 2 brothers out of the 8 that have stayed until the end with regular phone calls and actually visiting when he has been in the hospital. But otherwise even with the grandparents it dwindled off very early. It seems that most people can not wrap their mind around the treatments & complications. As the mom you just don't get the break anywhere. And we really need it! Even if it's only for an hour once in awhile. I would pull to the side of the road sometimes for a fewminutes to listen to a song really loud or just sit so I wouldn't waste too much time getting it together before going back to my son.
It will all work out. It does help if you can let go of the family expetations. It will only continue to frustrate and anger you. Right now you only need people who are positive and helpful around you and your son. Not everyone can be there now. For what ever reason. (I've never figured it out why some can help some can't)Just be glad for who you do meet. You will find in time this cancer gig will have you meet some amazing people. Hopefully you will soon realize you yourself are amazing too. It's alot to handle and you are not alone. The help you will find may not be from who you expect but it will come from somewhere. Good luck with treatment and take care of yourself. It's very important and we tend to forget that while taking care of our sick child.
Stay strong,
Jenn

By KayEm
Posted October 28, 2009 at 12:54 pm
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You guys SO make me feel like I'm not alone, thank you for your kind replies.

It really sucks though. To be part of a club you never want to be a part of. But here we are and I'm glad this site exists.

You guys are right. I really don't have the excess energy to spare feeling resentful over what relatives do or don't do.

It's weird. The people you expect would be there oftentimes are the ones who end up not being able to handle it (I hate when people say that, I'VE had to handle it and most especially Max HAS..so I think they could as well..but I'm not gonna go there ) and then others you never would have guessed come forward and really show their stuff.

Maxs dad and I divorced over 20 years ago when he was still a baby and so Max has never really known his father. We divorced on good terms, remained friendly just lost contact over time. So one day I walk back into PICU (where Max was after the swollen spleen episode) and I see a man in there with a face mask on.

I was like "Who the Hell is this guy and what is he doing in my sons room ???" So I asked a nurse and she said he was his dad. We hugged so hard, he had been crying seeing his son laying there in an ICU bed and I could tell by his eyes that he felt such regret over not being there in the early years. I told him simply that yesterday was gone and what matters is what you do today. I told him I held nothing against him, we are who we are and God knows I've made my own stupid mistakes. Since that time he has been to hospital several times and been in contact with his son on the telephone. It's like Max knows and understands and is accepting of his dad anyway. I try to leave that all between them.

And so many at the hospital are incredible, you guys are so right. One of his nurses especially (even though they were all great), Mikel....who saw me crying on my bed late one night in the PICU, scared to death, actually came and sat next to me and listened to me blubber and was just so awesome for doing that ONE little thing. Listen.

Then there is Rowena, his social worker who has done everything under the sun to help us. Finding the funding (Katys lemonade stand) so that we could eat and stay in a motel down the hill after RMH wouldn't accept us.

And even some of his doctors. Real people the doctors at this hospital are. They don't talk down to me or intimidate (as old school docs usually do)...there were even two of them sitting with me when Max was being dealt with in PICU and we weren't sure he would make it. They actually HUGGED me because honestly I was losing it. A hug from a doctor, can you guys believe it ?

So yes, I definitely have met some wonderful people, so I'm trying not to dwell on the ones who are just not there. It sounds weird though, but sometimes it's easier to get pissed off at people for little stuff then to think about my sons condition all the time. I feel ashamed to admit this but more then a few times I've wanted my car to turn into a bulldozer and get people off the road who were driving too slowly so that I could get back to my son. I want to scream "My son has Luekemia, can't you get out of my way ???"

I really try not to do this though, it usually happens on particularly tense days. I also try not to look at happy people I see in public and think "Everyone else has happy normal lives, and I don't" Sometimes it's hard putting on that socially acceptable (and expected) happy face.

But I'm dealing. Sorry my posts are so long, it just helps so much talking about this to people who KNOW.

By Finny
Posted October 29, 2009 at 7:51 am
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Hi. I hope your week is getting better. My 15 year old son was dx in May with ALL T-cell. My husband and I are also surprised at some of the responses, or lack of that we received from family. But we found a wonderful social worker at our hospital and were "adopted" by a neighborhood family and reunited with a distant cousin. What started out with an occasional phone call, frozen pizza and hospital cafeteria coupon has turned into a flood of community support that leaves our family humbled and thankful. We believe that God was called and intervened for us. Several people in the beginning asked if they could put Caleb on their church's prayer log. We have heard that he is being prayed for all over the U.S. On chemo days, my husband and I feel totally drained, but not forgotten. Please set up the caring bridge, find one person who will make phone calls for those who insist on not using the computer, ask neighbors to pray for your son and family, find a social worker at the hospital, call your local health dept. and tell them you need support, contact your local charities or ask someone to contact them on your behalf, go to the library and rent as many funny movies as you can find for your son-tell the librarians about your son-this will help...these all help and may lead to bigger things...When someone would offer my husband and I help in the beginning we hestitated to accept. We weren't used to having people we barely knew reach out to us. But then we realized that these people felt the need to give just as strongly as we needed the help. It was a blessing to them as much as it was to us. We have learned so much and look forward to helping others in the future.
Praying for your son, Finny

By njs
Posted November 3, 2009 at 7:26 pm
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KayEm and Finny,

I wanted to mention that there is a parent group for ALL and its been a lifesaver for me.( and others.) You can find it on the www.ACOR.org site, which is for all things cancer. Then go to groups and then ALL parents. I would really recommend it.

Finny,
My son was also diagnosed with T-cell ALL, which is much more rare. My son is now 13, was 12 at DX. Its hard to find older kids/teens who have this as most are in the up to age 7-8 age. Teens have a whole other host of things to deal with. Any way we are in long term maintenance and while its not been what I would have ever chosen we are surviving.

Been there with the family who just doesn't get it. I have no family living in our area, and even then my sisters have no idea and don't really want to understand. As you've been told, you need to find and surround yourselves with those who love and care for you and your family NOW, not when its convenient for them.

Hang in there.

Nancy, mom to Dale, 13 diagnosed with high risk T-cell ALL on 4/16/08 on AALL0434 now in long term maintenance. www.carepages.com daletall

By Loviya
Posted November 9, 2009 at 2:24 pm
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Oh my goodness my heart goes out to you and your son and mother, im shocked to hear about what you are going through. My son 10 yrs old has AML and, we (myself , husband and older son) has been living at the university of chicago comer childrens hospital on and off for 10 months now. Please don't let what others are not doing get next to you, you will need all your emotional, mental and physical streghth for your son in the months to come, to help him get through this battle he's going through. The money will come to help you. There are help for familes with cancer paitents especially leukemia. Have you tried the Leukemia and Lymphoma foundation? If not talk to the hospital social worker she can put you in contact with them. also apply for federal funds from your state. keep me posted I am also looking for funding to cover medical bills when I run across them I will email them to you. Please take a look at this web site call www.normalmoments.com

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