The Leukemia & Lymphoma Society - Fighting Blood Cancers
12 Replies Latest reply: Nov 10, 2011 12:48 PM by robbieh RSS

What was the best "help" given?

pennington Registered Users
Currently Being Moderated

First...I hope that it will be OK to post this here, I don't won't to upset anyone.

A dear friend, co-worker, and neighbor just found out that her two year old son has Leukemia.  I found these boards searching for answers to my health issues and now need your wonderful caring help for her. 

 

My question is....  What has someone done, given, etc. that helped you the most?

 

We have just started two fundraisers to try and help with some of the financial burden.  I have also started a "travel bag" that I am going to have ready when she gets back Friday (she is having to travel for his treatment).  We have a large bag that some of us have been adding to for the trips, just little things you would need in a car on a trip.  If anyone has something that really helped or WOULD have really helped please let me know.  I feel so helpless.......

 

Thank you all!!!!!

  • Re: What was the best "help" given?
    MomofNicholas Registered Users
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    Meals are a big help - reduces the stress and time spent meal-planning, shopping, cooking.  Or if they are inpatient, buying meals gets expensive and the options can be limited.  I was part of a large playgroup/moms group and someone made meals for us on all clinic days (2 times a week) during the first month - enough for 2-3 meals - and others gave us freezer meals.  We needed some help with picking up our daughter from the bus stop a couple times, luckily a neighbor was able to do that.  ~Theresa

  • Re: What was the best "help" given?
    kimmeebee Registered Users
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    You are very welcome here and I hope you pass along the link to your friend in case she finds that she needs some support. How sweet of you to do your homework and find out what she might need.

     

    There is a post that we can bump that lists the things that are helpful and I will see if I can find it. But here's what I can think of off the top of my head:

     

    1. By far the most important, she needs someone like you to field offers of help and to communicate to the supporters what she needs. When people say 'what can I do?' it often gets ignored because we don't have the time or energy to find chores for people. We also can be reluctant to say out loud 'I need money, gas, food, etc.' Having a point person is invaluable!

     

    2. Money. Lots of it! Even thought my daughter's treatments were covered 100% by St Jude we still needed money for groceries, gas, clothes, toys, etc. because their bodies and appetites change while on steroids/chemo and you're driving back and forth to the hospital a LOT.

     

    3. Help with practical matters - cleaning the house, doing laundry, walking the dog (or fostering the pets if necessary during the worst of it), yard work, frozen casseroles, etc. Don't ask if it's needed because she'll likely say no. Just say 'We're going to hire a maid once a month to clean your house, which day would work best for you?' You can also offer to make the trip with her, come over to play with the kid(s) so she can rest, etc. And don't forget the siblings if there are any! They get swept under the rug sometimes.

     

    I hope that helps. You're a really good friend for doing this.

  • Re: What was the best "help" given?
    robbieh Registered Users
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    First of all, you are a wonderful friend for being so eager to help.  Your ideas are great.  Bless you for being so caring and concerned.  One of the big things to remember is this is a marathon battle.  People outside the family tend to be concerned for a few months, then kind of "assume" things are good.  I don't know what kind of leukemia your friend's son has, but my daughter has ALL and the first three months were brutal, then changed to some good days/weeks alternating with bad days/weeks.  She was able to go to school very sporadically and was too tired to last a complete day.  After about 9 months of treatment she was able to go back to school (just in time for it to end).  Even though my daughter now has hair and can go to school unless her blood counts crash she still has 13 months of treatment left.  And parents can never truly "relax", we must be on guard all the time.  Sometimes I feel like screaming "Just because she has hair and is back into the world doesn't mean everything is OK.  She still has to have chemo pills every night and those dreadful spinals and iv chemo once a month!"

     

    I recommend a web site called lotsahelpinghands.com.  I did not use this for my daughter's treatment, but I wish I had.  I used it recently when I needed surgery that banned driving for a few weeks and  lifting restrictions for 6 long weeks; and no bending over, vacuuming, etc. for many weeks.  You can set up "tasks" such as meals, driving somewhere, help with housework, etc.  What I found so convenient is you can enter in information and it then is emailed to all participants and the coordinator  can then mark tasks as completed. 

     

    Don't ask to do something, just tell her you are going to do it.  Pick up laundry from the hospital and take care of it.  Come over and clean her house, or take up a collection and hire a house cleaning service. 

     

    Bring meals to the home or to the hospital.  Meals that can be frozen and tucked away are a great idea. 

     

    Go to the clinic with your friend on some treatment days for company, backup relief when she needs to go to the bathroom, get lunch, etc.  Some of the days in the clinic are REALLY long, and as soon as Mom runs to the bathroom something happens!

     

    And like I'm sure others have already said and will say---don't ask.  Just tell her you are going to do something and ask what day, time, etc. works best.

     

    Your friend is lucky to have you and I wish her and her family the best on this journey. 

  • Re: What was the best "help" given?
    work-at-home-mom Registered Users
    Currently Being Moderated

    Something that helps the parents who cannot leave the hospital room some hot coffee in the morning. 

  • What was the best "help" given?
    pennington Registered Users
    Currently Being Moderated

    Thank you all for your wonderful answers!!!!!  I have printed it out to so I don't forget anything.  We (a group of friends/co-workers) have a meeting Friday and I will bring this along so keep the ideas coming!  Thank you all for your warm wishes, I will pass them along also.  I will be sure to give her the website.  I cannot take credit for the whirlwind of people that have surrounded her and her family, this was started by many.  Again thank you and best of luck to you and yours!!!!!

    • Re: What was the best "help" given?
      sdbrogan Registered Users
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      I'm sure this has been said, but I'd like to reiterate it... It is SOOOOO important for you (or someone you designate) to be the One Point of Contact for the parents regarding meals, help, etc Everyone needs to know who that is.. It was very helpful for us to have a very type-A friend take over...print out a schedule of meals, bring it to the house so the grandparents could know who was coming and when.. Also, leaving a cooler on your front porch for deliveries so other people don' t have to be home is helpful.

       

      Also, (and enough people don't do this)...please remind friends to check the latest on their Caring Bridge or other site before asking "how are things?" ... It shows you care and keeps the parents from repeating everything!!

       

      I could go on...but thanks for stepping up for your friend.

      • Re: What was the best "help" given?
        SweetPotato Registered Users
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        I second checking the caringbridge or blog for updates.  I hated having to explain over and over again what we were going through to different people every day.

         

        Gas cards were a huge help.  I was gifted some for various gas stations and it was wonderful to have them in my wallet. I was able to pull over and fill up without much thought.  There is a lot of travel in leukemia treatment and much need for gas money.

  • Re: What was the best "help" given?
    burmang Registered Users
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    Everyone has offered such great suggestions and I agree with them all! The things that helped us the most were:

     

    - Frozen meals! I hate cooking and it was wonderful to have a month's worth of food in our freezer for the first couple of months.

    - I personally have a very hard time asking for help. My most helpful/appreciated friends just said, "I am doing such-and-such for you. There. Don't thank me. Take care of yourself and your baby."  A friend came over and cleaned our bathrooms/vacuumed - didn't ask us - just showed up, did his job, and left. The night we came home from the hospital after diagnosis, a distant acquiantance had ordered an absolute feast to our house from a local restaurant - it arrived just as we pulled in the driveway. It was wonderful to have people figure out creative ways to help us feed ourselves/clean without really consulting us. That way, we were able to focus all our energy on Elsa.

    -Send her here to the boards - it is so helpful to have a community of other parents/families going through the same thing.

     

    All that best to your friend.

  • Re: What was the best "help" given?
    annie.zz Registered Users
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    Meals are great, but check with the family periodically about what they would like.  My daughter went through phases where she'd want a certain food over and over, and then wouldn't want to touch it.  We got lots of pasta dishes, and with mouth sores it became difficult to eat.

    Be consistent and commit to the longhaul.  Plenty of people were around at the beginning, but the one that meant the most was the one friend that consistently dropped off a meal or a cake once a month or so - all the way til we were OT.

     

    Set up a calendar - the LLS site here has a good one, where you can coordinate meals, help with other kids, etc.

     

    Help with yardwork.  You don't need to even announce it, but raking the leaves, cleaning out the gutters - arranging for things like that to just get done can be a huge help.  (single mom here, so those were biggies for me - my brother came one day and cleaned up my yard and it was a huge relief!)

     

    Keep posting to the guestbook on their caringbridge page, or posting to the FB page.  Having that ongoing support was really helpful, and it let us know that people cared enough to keep checking in.

     

    gas cards, giftcards for the local pharmacy, giftcards for nearby restaurants with takeout (but not too much on any one card.)

     

    It can be so hard, but understand that the family is living each day - they have a child LIVING with cancer.  Celebrate the life, don't get maudlin, and take your cues from the family.  Some days your friend will just want to cry.  Some days she will be sick of crying.  Some days she will just want to focus on what's ahead.  Always cancer will be on her mind, and everything else going on in the world will pale in comparison to what she sees her child dealing with every day.  Being the friend who is there to lend a hand, an ear, a shoulder - can make a world of difference.

  • Re: What was the best "help" given?
    harrisms Registered Users
    Currently Being Moderated

    What a wonderful friend you are!  I agree with all that's been said--household tasks, meals, coffee in the morning (a group of my dear friends still call themselves the Coffee Brigade--they were there every morning of our long initial hospital stay with good, strong coffee for me). 

     

    Also, what I found helpful were friends to run errands, like grocery shopping, picking up dry cleaning, etc.  There will be months on end when something as simple as running to the store can be very risky for her son's health.  And if he's not an only child, having friends willing to play with and care for other kids will be invaluable.  Also, parents need a little time off, so having friends you can trust to leave a sick child with for a couple of hours is so important.

     

    Finally, send your friend our way.  She's sure to have a million questions, and this is a great source for a parent whose child has just been diagnosed.

     

    Suzan

  • Re: What was the best "help" given?
    kimmeebee Registered Users
    Currently Being Moderated

    The great thing about bringing meals is that they can be frozen. My sister has a large freezer so she would take a week's worth at a time and store them in her freezer so she could bring me two or three at a time. When the freezer was empty, she'd put out the call for more.

     

    Of course, the patient often can't eat certain foods or doesn't want them due to nausea or steroid cravings, so it's more for the family than anything. Fast food gift cards and pre-packaged snacks are great for the kids. Every month they crave something different, it seems, so you really can't predict it. I'd call my friend (who works in the restaurant biz) crying every month saying 'all she'll eat is mini cheeseburgers!' and she'd bring me a case of mini cheeseburgers. That was so helpful.

     

    Someone else mentioned this but I'd like to reiterate. Many cancer parents actually find it almost rude when people say 'how's your kid doing?' because to us it says 'I don't bother taking 5 minutes a week to keep up with caringbridge and have instead chosen to inconvenience you by asking for information that you've already taken the time to distribute.' A MUCH better greeting is 'I read on caringbridge that ______. That must be so tough/that's great news/how are you handling that? Can you tell me more about __________ in particular because I don't quite understand.' If you do nothing else, please communicate this to the supporters. They sound like an awesome group!

  • Re: What was the best "help" given?
    robbieh Registered Users
    Currently Being Moderated

    I highly second and third the comments made about taking the time to read Caringbridge.  I hate repeating stories over and over that I posted on there.  It hurts when you're coming off a brutal inpatient stay,  ER run, or a time period where you haven't been able to leave the house for days on end to have someone ask what's going on, and it's emotionally draining to tell again and again.  I found myself just saying something like we're doing pretty well, even if we weren't!

     

    My husband and I are lucky and have managed to have alone time because Lauren's dad came to town at least once a month  to be with her.  If we hadn't had some breaks it would have been really draining on our relationship. We have a wonderful adult babysitter who will stay with her while we go out, and an OT student we pay to spend time with her every weekend as  a form of respite (and they adore each other).  We are fortunate that finances are not an issue for us, but leukemia can be financially draining leaving no wiggle room in the budget for anything "extra."   And families aren't comfortable hiring a neighborhood kid to babysit; we want adults who are reliable, etc.  Volunteering to stay with him for a few hours so the parents can have some alone time, run an errand, get a pedicure, whatever is a huge help.  Parents may turn it down in the middle of a really rough time with vomiting, etc. but will accept when it's kind of a "stable" time. 

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