• Phone cards were so awesome since our treatment center is 3 hours away and our family is all out of state.
•The day we got the diagnosis a friend from school contacted Candlelighters, then went and picked up the huge amounts of gifts from them. Also included were gas and phone cards. Most importantly, the delivery included helpful books and their card with information on who to contact for support. My friend also organized yard work crews to continue the yard project I was working on when this all happened. They mowed, weeded, got plant donations and made a special new gardent for my daughter (and family) to enjoy. I have rekindled my love of gardening--since we are home alot more and I can control the flowers! I am grateful to the friends that have stepped foreward to "check in" almost daily to ask what I need now. I don't hesitate to ask for simple things now (plant a flower, organize my daughers toys, make some soup, I even asked for a Margarita delivery!!) I have felt I have collapsed in a canapy of loving friends.
•Gift cards to discount stores, gas stations, pre-paid phone cards, etc. These really help defray the extra expenses involved when your child is sick. It's one less thing to worry about, having money to buy laundry soap when you have to spend $50 on presriptions.
•My friend put up our Christmas lights for us. What a welcoming sight it was to see the lights blinking when we came home from the hospital for the holidays.
• I don't want to hear anyone's stories about the cousin of their friend who's "just fine now." I feel like you are dismissing my child's suffering. Even if survival were guaranteed, how would you like to go through port implantation, chemo nausea, hair loss, at least 15 spinal taps and several bone marrow aspirates, plus about 100 or more finger sticks and port accesses?
•Provide the parents with a journal. Sometimes it's nice to be able to let it all out! A journal serves as a reminder of the faithfulness of family, friends, hospital staff, and God through this painful journey.
•I have a lot of good people helping me cope, and when they asked what they could do to help, I thought about it for a while. Since the New Year was starting, I thought it would be nice to have a Mary Englebriet calendar and asked them to write words of encouragement or prayers for my daughter, Julie. I was so pleased to see all the love on those pages. I will save this keepsake for Julie so that she can see how many people were pulling for her. One of the quotes that I found to be helpful was (and I apologize for misquoting): " Courage is not the absence of fear, but the ability to move forward in spite of the fear... " Loraine
•One of the greatest help for me was when the teachers of my children's school volunteered to prepare lunches every day for the boys while my 2-year old daughter was being treated for hepatoblastoma. Another thing that helped was every week a family would bring a hot meal (often enough for several days) and another brought breakfast groceries. It is amazing, even when you have good insurance, one can get nickled and dimed to death with co-pays and medications. Therefore, when people brought food it helped reduce my food bill.
• Choose one person to tell the up to date information to and let them disseminate the status information to everyone else that is asking. That way you don't have to repeat the same thing over and over again and can concentrate on the issue at hand. During emergencies, this relieved quite a bit of stress for us. You can also rotate to different people daily/weekly least someone feel left out of the loop. All those people care and yet, during such chaotic times, it saved us from rehashing the same thing constantly. We made one phone call and that was that.
- Related to that, so often there is an outpouring of help from community and friends. While everyone deserves a special thank you note, families often do not have the time, energy or the sanity to remember to do them-no matter how much they want to. It would be very helpful for someone to keep track of all the nice things that people do and acknowledge them on behalf of the family. Also for people to realize that if they don't receive a thank you note, that it wasn't because the family is rude and ill mannered, and that their thoughtfulness really was appreciated.
- Our daughter was diagnosed with ALL shortly before school started and we had not shopped for her brother yet. My husband's best friend and his wife bought our son everything he would need (they had two kids of their own to buy for also). Another friend put out donation canisters around our town; she fed our cats and kept an eye on the house while we were away also. Many other friends and family members kept our son so that he could attend school which allowed dad to be with us in the hospital. The hospital volunteers were absolutly awesome; they kept Michele entertained for hours and let us do whatever we wanted or needed to do.
- Friends can listen when you're scared. They can be the leaning post when you are weak. I know that just talking on the phone with my closest friends cheers me up.
- Call every day, no matter what. It's a small thing, but it lets you know someone is with you in your time of trouble.
- When our son was first diagnosed with
ALL, our neighbors pitched in and hired someone to mow our
lawn for the remainder of the summer which was a HUGE help
and one less thing for us to deal with. Also, my husband's
co-workers collected money and had a caterer bring full meals
to our house for a week. Each nightly meal was enough to
feed an army and there was plenty to freeze and save for
another day. I'm not sure if we would have even remembered
to eat during those first weeks if not for those daily deliveries.
- Be innovative in coming up with ways to include the the child in activities when counts are low and they can't be out and around. A friend took my oldest son to the mountain for a day of sledding, and they brought back a sled full of snow for my younger son to play with (in the living room) when they got back. The older child got a much needed break and had a great time, and the younger one did not feel left out; he played with his brother in their pile of snow with fingerboards and Hot Wheels® until their fingers were stiff!
- When our son was first diagnosed with ALL, our neighbors pitched in and hired someone to mow our lawn for the remainder of the summer which was a HUGE help and one less thing for us to deal with. Also, my husband's co-workers collected money and had a caterer bring full meals to our house for a week. Each nightly meal was enough to feed an army and there was plenty to freeze and save for another day. I'm not sure if we would have even remembered to eat during those first weeks if not for those daily deliveries.
- The hospital I worked for hired a house cleaning service to come in for 8 weeks while my daughter was going through daily radiation treatments. It was wonderful!!!! Home cooked meals were another huge help....
Carol Dean
- Keep sending cards and well wishes! Even though the hospital stays are not as often, or the major part of treatment is over, there is so much more a family goes through during remission. Just getting back to life the way you used to know it requires support. When Katie returned after her surgery and first chemo treatment we were bombarded with gifts and well wishes. After that the support dwindled. The treatment continued, as the cards and phone calls deminished at a rapid pace. It would've been nice if phone calls, or cards continued for a longer time. Things didn't get easier for Katie and the hope of mail became an added disappointment.
- Also fathers seem to be forgotten, perhaps because they are more private. As the mother, I got cards and conversations, but my husband needed it, too.
- Gift certificates for gas, calling cards, food brought to the house for the siblings, food brought to the hospital for the parents or child or simply just stay at the hospital with the sick child so the parents can get away for a short time...together. These are all the things that our family and friends did for us.
- Stop asking, "How are you feeling?" I don't want to keep answering that question!!!!
- While my step-son was in the hospital for a week long visit, we enjoyed the home cooked meals that people would bring to us. Although we were at a hospital about one hour away, they still brought us whatever he ordered.
Another big help a roll quaters for the vending machine and the toll road on the trips back and forth to the hospital.
- My daughter & son-in-law have really appreciated phone cards. My graddaughter's treatment has taken them far from home and making calls to keep family and friends informed is costly.
- The best thing our friends did for us was to make sure that we always had a hot meal waiting for us the day we would return from the hospital. With unpacking, medical supply deliveries, home nurse visits and the usual night's activities, a good meal is still very important but easily lost in the chaos. A good home cooked meal was a welcome change from hospital food and good nurishment for body & soul.
- Jared's teachers gave him a gift certificate to the local resturant. When family came to visit, he was so excited that HE could take them out to eat and pay for the meal with his own money. Gift certificates to fast food restuarants are really nice. After we finish his chemo, he is always ready to eat out, this was he can decide where to eat with his coupons...
- Be sensitive. As a parent of a 3 year old with ALL, the best thing a friend can do is don't make your child's illness an introduction to a conversation.
- Parents feel so lost and overwhelmed in the weeks following diagnosis. We came home from the hospital with many HUGE decisions to make. The thing that helped us the most, was not having to be concerned with planning meals and going to the grocery store. Our friends and neighbors made a list, and had our evening meals (home cooked!) delivered to us for a month! They made enough for leftovers for lunch the following day. This was a lifesaver as I was free to do all the research, and planning needed before treatment began, without the added pressure of making sure my family had nutritious meals.
- Our neighborhood Post Office started a blood drive for my co-worker's son—now it is an annual event in our town. Everyone contributes by bringing food to sell for the family to have a little extra money and for the donors to eat. We have managed to make this a "fun" family event at our town park.
- I find that, after being in the hospital for several days, coming home to quiet time or a nap does wonders to re-energize. So, family and friends should be thoughtful not to call with lots of questions until later or even the next day.
- One of the most creative things a friend did just after my son's ALL diagnosis was make and deliver all we would need to quickly pack his brother and sister's school lunches (they go to a school where buying hot lunch is not an option). My friend made individually wrapped p b & j's and put them in our freezer, brought chip bags, apple sauces/fruit cocktails, and Little Debbies that we could just throw into bags for them to take. What a relief it was to know they had lunches as my husband and I did shifts at the hospital and relatives were in and out of the house.
The "Care & Comfort" people at our church also gave me a list of people that were scheduled to pick up the kids from school unless I called them that we would be able to do it. They took it all on themselves to do this - a great weight off our shoulders since we were never sure if one of us would really make it out of the hospital in time to get them (no school buses at our school).
I remember early on that it bothered me that I rarely had time to talk to my very closest friends because I was inundated with people I knew superficially who felt it their duty to come visit. Of course my best friends carefully called before coming and tried not to let me be overwhelmed with visits so I rarely saw them as I spent my time comforting those who felt they needed to show they cared. This may sound sort of harsh, but I think that especially in the initial days, people that are superficially friendly with the family should not come (especially unannounced) and try to talk deeply with the family that they have never talked deeply with before! Let the family have time with those closest - do meals and things at a distance if you care, but time with others is precious and I hated "entertaining" many people instead of paying closer attention to my son and talking to close friends.
- Out-of-town friends and family pooled money to hire a housekeeper (instead of sending 300 more beanie babies:-)).
- As stated before, we had so many visitors at the very beginning, but Ally our daughter stated she knew that later on during treatment that that would decrease. And it has. We as parents need to remind her friends that she still needs them and that even a call would be nice, especially since she is unable to be in school all that much at this time. We were and are very lucky to have a wonderful church family, we have had wonderful meals and I know I can call any one and ask them to bring meals when we are really overwhelmed!!
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