| "Do not go where the path may lead, go instead where there is no path - and leave a trail." ~ Ralph Waldo Emerson ~ |
| Practical Support. |
| ORPHANS OF THE CANCER STORM |
Don't say "if there is anything I can do, let me know". The family is likely to be overwhelmed with caring for their sick child and simply keeping the home life ticking over. A vague offer of help requires the family to remember who has offered, and then contact those people when they need support. Take the pressure off the family with a proactive approach. Ask them specifically what needs to be done, then do it. You could also offer to do something helpful. Don't be offended if the answer is "no thank you" this time, and remember to ask again. |
| Disclaimer This information page has been prepared by an individual who does not have medical training. Contributions have been shared by the parents of children diagnosed with retinoblastoma or optic glioma. Orphans of the Cancer Storm cannot make any assurances relating to the validity of medical information contained within this page. The OCS website is intended for information purposes only and should not be used as a guide to diagnosis or treatment. If this information raises any concerns about your child’s condition or care protocol, discuss them with his or her paediatrician, oncologist, or other appropriate medical professional who has knowledge of the case. |
| "When we first told people Sara was sick, they would often say 'let me know if I can help', but we never had the time to sit and think who those people were when we needed something. It was much better when people came to us and offered to do or give something specific." "Sometimes we had people offer to do something and then they didn't deliver. It didn't happen very often, but when it did we felt so let down. It would be better not to offer if you think you won't be able to do it, or at least let the parents know ahead of time that something has come up." |
| "It was so good to come home at the end of a long clinic visit, to find dinner ready and waiting. It took a load off our minds, and enabled us time to unwind with each other at the end of the day." "When we finally arrived home from a long hospital stay before Christmas, I found a card on the freezer, saying 'Father Christmas has remembered you'. I discovered the freezer had been filled with delicious ready-made meals by our church friends. They lasted us two months." "We were very grateful for all the meals people made for us. Sometimes they even brought meals to the hospital so that we didn't have to eat the bland hospital food. They were always in foil containers so that we didn't have to worry about returning dishes afterwards." |
| Provide accommodation Offer lifts if you have a car Baby-sit Invite the children out Give gifts Practical gift ideas |
This is especially helpful on clinic days, or for the rest of the family, when the child is hospitalised. Find out when the child regularly visits the hospital, and take ready prepared meals to the house, or prepare individual portions which can be frozen for future use. |
Taking a shopping list from the family when you do your own shop is a simple way of helping, especially for families who do not have their own transport. Shopping is particularly welcome gesture when the family is returning home from hospital. Making a note of what things the family needs, uses and likes will help to ensure that useful items are bought and replenished. |
| "When my husband was away on business, our neighbor did the grocery shopping for us, so that I didn't have to worry about dragging a sick, tired little boy through the store. She always slipped in an extra little treat for each of our children, and that was a nice little surprise for them." "Every time we came home from a stay in hospital, our neighbors - who looked after the dog - would fill our kitchen with food, not just the basics, but all sorts of extras that made life much easier. Their gesture was always a real blessing." |
This may be especially welcome when the family is returning from a stay in hospital, however short. Vacuuming, polishing, dusting, washing dishes, doing laundry, laying out fresh bedding etc. will all help to make homecoming a more pleasurable experience. When the child is home, offering to clean the house will allow parents to spend more time with the child and any siblings, deal with paperwork, or simply have a little time out. |
| "We had to go out of state for our son's treatment, and that meant lots of travelling. Our Pastor's son looked after our two beloved collie dogs whenever we were away. Knowing they were in good hands helped us all to focus on our son." "We have a beautiful kitty, whom the kids adore, but when they were young, he would sometimes use his claws when they annoyed him. We told our boys that kitty had decided to go to the neighbor because he didn't want his claws to make anyone sick during treatment. They were very sad, but comforted to know he was only across the street. We are so thankful that our neighbor offered to look after him for those eight months. It helped the kids to be able to see kitty, to know he was well and that he would eventually come home." |
This will be particularly helpful during a child's chemotherapy treatment, when a suppressed immune system would make the child more vulnerable to infection, or during hospitalisation, when the family is likely to be spending much time away from home. |
| "We didn't have a yard so much as a mess out back. When we went away one time, our church friends came together and carried out a surprise make-over. We came home to a heaven of a place to relax, and it has been so ever since." "We have a pool in the yard, and it is shaded by lots of trees. It is lovely, but it needs lots of work to make sure the water is clean and it doesn't get full of leaves. We were so consumed with looking after our sick children that the pool kind of fell into neglect a little, until a friend offered to come over regularly to tend to it. He also cut the grass and weeded - he never asked, he just did it. We were so thankful." |
General garden maintenance such as mowing the lawn, weeding, watering plants, clearing leaves and shovelling snow can really help. A well kept and inviting garden often provides a peaceful refuge to escape the stress. |
| "The first time we traveled to Los Angeles for treatment, we planned to stay in a motel because the Ronald McDonald House was full. When my son's kindergarten teacher heard this, she called us up to tell us that she had spoken to a former neighbor about it, and the neighbor insisted we stay with her. We were unsure at first, but we appreciated the offer, and the hospitality we received from this total stranger was amazing. Being in a family environment helped us cope better, and as we saved on motel bills, my husband was able to fly out at the end of the first week to be with us." "We travel to London for treatment, and the train journey is about three hours. Sometimes we stay the night with friends, but we almost always go to the home of a friend for dinner before taking the train home. It helps us to be among people we know on the trying days, and allows us to celebrate with them when the news is good." |
Many families find their expenses mount up quickly when staying close to their child during hospitalisation. Very often, they may be forced to stay in one room at a basic motel, or in hotels full of busy people and happy tourists. This experience can be extremely draining and isolating at such a hard time. If you live near the hospital, consider offering a place to stay during the child's hospitalisation, or invite them to stay overnight if the family has to travel long distances to clinic appointments. |
| "My boss and his wife have a house on Grand Bahama which they offered to us for a week last summer. We so needed a holiday, but the treatment had hit us hard financially. Staying at the house made things much more affordable, and we were able to share eight glorious days together as a whole family. I don't think the couple will ever realize how much that time away helped us to refuel and face the next set of challenges." "Our neighbours offered us use of their weekend cottage in Devon for a holiday. At the time, we could not think about going away, but the offer gave us something to look forward to during the darker days. In the 19 long months which followed that initial conversation, we made grand plans with our children, and when the time finally did come, we enjoyed every moment of it." |
| The financial burden of childhood cancer means that families often cannot afford to take a vacation, even though it is greatly needed. Frequently, they simply do not consider going away, as the child's care is all consuming. If you have a holiday or weekend cottage, think about inviting the family to use it to allow them some quality time away from the rough. Let them know the offer stands if now is not a good time to go away. |
| "We don't have a car, so getting to hospital would be a nightmare without the rides many people give us." "My husband uses our family car to get to work. Our neighbor works too, but he cycles in, so one day he added my name to his insurance policy, gave me the keys and told me to use the car any time I needed it. I was amazed that anyone would be so generous, but it has made life so much easier for us when our own car is not available." |
Hospital trips, shopping, school runs, kids clubs and activities…all can be extra difficult during the serious illness of a child, especially if the family does not have a car. Even if they do have their own transport, it may not be available for hospital trips if one parent needs it for the commute to work. Also, sometimes parents appreciate being able to sit in the back with their sick child whilst someone else worries about the driving. |
| "We have many friends who look after our other children when we are at the hospital. It reassures us to know they are with people who care about them." |
Whilst parents go to the hospital - be it for a short clinic visit, unexpected emergency or long inpatient admission - knowing that the family's other children are being well looked after will take a great weight off their mind. Siblings are also likely to be calmer if they are being looked after by people with whom they are familiar. Looking after the sick child will allow her parents free time to eat out, unwind with a walk or exercise, run errands or simply escape the hospital or house for a while to just be. |
| "On one occasion, when Tim was very sick and required a huge amount of attention, friends of our family took our four other children to Six Flags for a day of fun. They had a fantastic time and really regained something of what 'childhood' should really mean." |
Offer to take the family's children out, be it to the cinema, bowling alley, the park, or for a simple meal at your home. This will allow the parents time with their sick child, or even time alone if the child is well enough to join the trip (both parents and child will tell you what the child's limitations are). It will also give the other children something special and fun to do, allowing them the opportunity to do normal childhood things. |
| "Our children love the gifts and cards they receive from people. It gives them such joy to know they are all being remembered in such a generous way." "Our daughter was featured on the Make A Child Smile web site, and so we set up a post office box for her. She always squeals with delight when we find that the 'angels' have been at work thinking of her." |
Gifts can help boost the child's emotional wellbeing. However, be sensitive to their needs. Don't buy cut flowers when the child has a low immune system, as these can pose a threat to health. Choose something you know the child can use. If she is confined to bed, choose a gift that can be used in such a situation. If the child has an external catheter, don't buy bathing toiletries as the port imposes restrictions on baths deeper than several inches. Also, if you bring a gift for the sick child, include the sibling(s), too. They will appreciate the thoughtfulness. |
| "On many occasions, our family was divided as I left my husband and children at home, to be with our little girl in hospital. We communicated every day by telephone, and the 'phone cards people sent me were so helpful in keeping us close in those times." "When Tim is in hospital, our other children must often stay with friends as my husband works shifts. The telephone bill mounts up fast, and we have been so thankful to friends who help keep us together in spirit through their donation of pre-paid minutes for our cell 'phones." |
| "During Tim's second round of chemo, he was very sick. We were in hospital for 10 days. When we came home, we found the house had been cleaned from top to bottom. All the beds had fresh sheets and the laundry was washed and ironed. We even found cupcakes in the kitchen with letters on each one spelling out 'welcome home'. I was so overwhelmed with the kindness people had shown that I cried. Timmy was able to sleep right away between fresh sheets, and my husband and I were free to just sit and enjoy being home." " Letting someone else take responsibility for running the house for a while is such a relief." |
| "Abby (15months) was released from a hospital stay of several months on Christmas Eve (my husband's birthday). I remember sobbing that last day, wondering what we would do for Christmas - I had bought and wrapped some presents for the girls, but nothing more. Out of the blue, the wife of one of my husband's work colleagues telephoned, saying 'we are on our way to collect you. You are spending Christmas week with us'. I tried to protest but, knowing what my response would be, she had already informed Corie, and of course, I couldn't disappoint a 3.5year old who adored this couple. Despite having no children of their own, our friends had dressed the entire house with brightly coloured decorations which thrilled both girls. Their hospitality was outstanding, and our Christmas was a magical time." |
| Even being home can present a challenge. Holidays such as Christmas, Easter and Thanksgiving are especially hard on many families, as they often lack the energy and time needed to cook, prepare decorations or shop for gifts. Think about inviting the family to stay at these times, to relieve the extra stress which comes with the occasion. |
| "A friend paid for me to have a hair-do and massage. It was really wonderful time out." "Our church friends pooled donations and booked us into a swanky hotel for the night whilst our children stayed with friends. We had a wonderful romantic meal together, and enjoyed relaxing in the spa. That brief time away from the reality of our son's cancer therapy was bliss. We will be forever thankful for our friends whose generosity and thoughtfulness made it possible." |
| The adults need some pampering too. Consider giving something just for them. |
| "We have to pay fees each time we visit the city. One day I was travelling in with a friend to visit my wife and son in the hospital, and mentioned what a drag it is to constantly be saving pennies to pay. When I came home from work a couple of days later, I found an envelope on the doormat, containing a tollway pass valid for six months. It has been invaluable." |
| Toll Passes: If the family has to travel along a toll road en route to the hospital, they will appreciate a pre-paid toll pass. This will mean they do not need to worry about having correct change, and will also ease the little travel expenses which can quickly mount up. Most US States provide passes, and some can be pre-paid on-line, as can UK fees such as the Central London Congestion Charge. |
| "Two items that we found helpful were a talking thermometer and marked syringes for giving medication. These items helped us feel more independent, not having to rely on sighted assistance just to give medicine or take Sarah's temperature." "My mom gave me a portable bottle warmer which helped tremendously since Sena was only 4 months old at diagnosis." "Diapers, wipes, gloves from my work. You don't know the number of diapers a child goes through when on chemo!" "We were given a sun shield to fix on our double buggy, to shade the girls. That was really helpful." Travel-size toiletries: These will be immensely helpful for overnight or unexpected hospital stays. If you travel regularly, consider giving hotel toiletries to the family for such use. "People give us little bottles of things like shampoo and soap. We keep them ready in an overnight bag so that we don't have to go hunting for things in the bathroom when we need to get going fast." "They mean the difference between spending time with our daughter and having to shop when we are admitted to the hospital unexpectedly." |
| Mecical And Daily Use Items: |
| "Eating away from home is a real expense for us because we have two children with Rb and one who still has to have check ups to ensure it's caught early if it develops. Feeding three hungry kids and two stressed out parents does hit the bank after a couple of times. Some of our friends give us gift certificates for meals out, which helps to ease things financially. |
| Food Vouchers: Mealtime can become an expensive business for the family of a child in hospital. Constantly eating out or at the hospital restaurant is costly, but hospitals often have a fridge for parents to store snacks and simple meals. A voucher will help with the cost of grocery shopping whilst in the hospital. |
| "My sister always packs us a hearty lunch in a picnic hamper when we go to clinic. The kids love to explore what is inside. Sometimes we play guessing games. It's full of goodies and lots of love." |
| Picnic Meals And Treats: In a similar vein, picnic meals may be very welcome on clinic days which often involve long hours waiting to see the doctor, get results or receive treatment. Preparing a selection of savoury and sweet snacks is a helpful gesture. To ensure the picnic is appreciated, be aware of any allergies, food restrictions, particular likes and dislikes within the family. If you take a picnic to the hospital during a child's hospitalisation, check with the parents for any eating restrictions before offering food to the child. |
| "When our son had his class picture taken, he told the photographer that his little sister would be in the picture too, but she was not in school because she had cancer. One of the other mothers overheard his comment, and later gave us the gift of a private sitting, to use for the family when our daughter was well enough. We made a big event of the day when we eventually went. It had been a long time coming, and we all dressed up and had our hair done for the occasion. The photos we now have from it are very, very special to us." |
| Photographic Gift Vouchers: Professional photographs can create special memories for the family of a sick child, in the outing itself, anticipation of the results, and the permanent snapshot of a moment in time when the family were all together, doing something fun. |
| "We spent the first few weeks of treatment at a motel because there was no place to stay at the hospital patient houses in town. One of our friends brought up his portable stereo for our use there. It really helped us put our little girl to sleep at night as we were able to play quiet music. We were also able to use it in the hospital when she was admitted." |
| Cd Players, VCRs etc.: Loan or give the family such items if they don't have any. They will help to entertain children who are confined to bed or low in energy. |
| "When my employer replaced its computers, I was given one of the old laptop units. It has been great when our daughter is admitted to hospital because I can stay in touch with everyone." "Our friends loan us their laptop when we go into the hospital. Having access to the internet, and staying connected with friends and other cancer kid parents gives us much comfort." "When we had to be away from home for our daughter's plaque treatment, our friends loaned us their web-cam equipment. That enabled us to have video conferencing with our other children back home, which they really appreciated." |
| Computers And Internet Access: A brief look through this website shows that many cancer resources are now available on the internet, from information pages to support groups and organisations. If the family does not have internet access, consider the gift of connection, paying a monthly fee, offering your own computer for use so that the family can access this information, or researching for them. |
