Download printable version here: 0304 Special Issues with Stem Cell Transplants
Puttinga child through a stem cell transplant (SCT) is one of the hardest decisionsparents have to make during a child?s treatment for high-risk neuroblastoma.Transplant can be a relatively smooth (albeit never ?easy?) experience for somechildren, but extremely difficult and even life-threatening for others. Thissection is not intended to offer guidance in making this very personal medicaldecision?but aims instead to provide tips for coping with the transplantexperience for those undergoing it.
Various transplant protocols
First,some background. Currently the majority of children with high-risk NB in the US are treatedon the COG Phase III trial that randomizes children to one or two (tandem)transplants (COG-ANBL0532).Other hospitals treat children according to other protocols, which are notrandomized and may include a single, double, or triple transplant; anallogeneic (donor) transplant; or notransplant (MSKCC in NYC). Parents may also decline to enroll their child onthe Phase III ANBL0532randomizing single vs tandem transplant and opt for single only. The currenttransplant ?options? are thus complex and varied. For a brief discussion ofcurrent transplant trials and the history of phase III trials leading to the?standard? use of transplants, see Chapter 2, Overview of High-Risk Treatment.
Becausea stem cell transplant for NB does not usually involve the use of marrow orstem cells from a donor (although there are exceptions to this), it is moreaccurately thought of as a ?rescue? -- the child?s own previously-harvestedstem cells are infused (in the same fashion as a blood transfusion) afterhigh-dose chemotherapy causes so much damage to the bone marrow that the childmust be ?rescued.? The ?transplant? term is prevalent because the cancercenter?s ?transplant? team cares for the children undergoing this treatment.Occasionally you will see the term ?stem cell rescue? or SCR.
? Althoughlots of little knick-knacks can get dusty and are usually discouraged, bring afew favorite items from your child?s room or your home.
? Considerlaminating posters of your child?s favorite characters or movies to put up inthe transplant room. Laminate familyphotos (easier with a copy printed from your computer if you have digitalphotos). Laminated items are easy toclean and make a better choice than framed items (usually not allowed on thewalls because of nail holes).
? Ifit is not provided, consider bringing a small lamp with a soft light. This can make any room more comfortable.
? Investin a portable DVD player or CD player if the transplant room will not contain aTV. If you?re staying for a couple ofmonths, consider bringing a small TV if it is allowed (it may not be because ofnoise control).
? Bringyour child?s favorite towels, sheets, pillows, and blankets.
? Bringwashable stuffed toys for your child?s bed.
? Considerbringing an area rug or play mat for the floor to soften up the room. Make sure it is easily washable.
? Ifit isn?t provided, bring a shower squeegee. You can get one of these at Target, Wal-Mart, or the like. It will help control mildew in the shower.
? Sincefood for caregivers is usually not allowed in individual rooms (to avoidgerms), bring plenty of familiar snacks and foods to keep in the communalkitchen. Check with the medical teamabout any food since some are prohibited during transplant.
? Insistthat you be allowed to inspect your child?s isolation room before he/she isclosed in. Check that every surface hasbeen properly cleaned, sanitized, and repaired. Look in the corners, closets, etc. (Some hospitals go so far asto clean these rooms with toothbrushes and re-paint the walls and re-wax thefloors between each patient.) Don?t be afraid to point out any dirty ordamaged areas of the room. Check thatyour child?s bed is comfortable, safe, and clean. You don?t want to have to break isolation toget your child a new bed or have something repaired later.
? Allyour child?s clothing will need to be freshly washed and completely dried in adryer (no air drying) and placed in plastic sealable bags. This is for germ control. Hefty and Glad make oversized bags that makethe transport a little easier. Once youget to your child?s room, these clothes will probably need to be removed from bagsbefore entering the room.
? Youwill also need to be freshly showered and dressed in freshly laundered clotheswhen you arrive at the hospital. Somehospitals will require you to shower again before entering your child?s room. Some will allow you to shower at home but askthat you not make any stops (gas station, grocery, etc) before arriving. If you do, you may be asked to showeragain. Leaving the hospital may meananother shower (even if it is to just get a Starbucks). Remember, it?s all for your child?s safety.
? Yourchild?s toys will probably need to be new or sanitized. Toys that can be completely submersed inwater by either washing them in a sink or a washing machine can usually come inthe room. Some hospitals will purchase new toys for children undergoingtransplant, so check with your transplant coordinator before you run out to buyall new stuff.
? Rememberto sanitize and wipe down anything you plan to bring into the room. If it can go in the washer, put it in thewasher. If it can go in the dishwasher,put it in the dishwasher. If not,seriously consider whether you need it or not. Check with your team about electronics, as anything electronic or withbatteries will probably need to be cleaned by the environmental department ofyour hospital or otherwise may not be allowed. (Think laptops, DVD players, portable game devices, etc.) Notebooks, books, and other paper materialswill probably need to be new or cleared by your transplant team.
? Yourchild?s meals will need to be specially prepared, and the hospital will have aspecial menu for your child. Make sureyour child?s meal comes wrapped in plastic. Check to see whether or not you can have a meal delivered for yourselfas well, since you probably won?t want to leave your child to get a bite. Also check before you order any takeout. Some foods may be prohibited altogether inyour child?s room.
? Asnoted above, try to surround yourselves with familiar things -- photos,posters, pillows, blankets, towels, etc. It may mean a little extra laundry for you, but it will help your childfeel more comfortable. Rugs willprobably not be allowed.
? Makesure you purchase new toiletry items for your child- and COMPLETELY discard theold ones -- don?t save them at home for use after transplant, because yourchild?s immune system will not be normal for a long time. These items include toothpaste, hand soap,toothbrush, nail clippers, lotion, deodorant, etc. Anything that has touched your child?s skin,hair, mouth, nails, etc. should be replaced, unless it can be washed or totallysubmersed in water (like a comb).
? Bringa lot of straws and disposable cutlery for yourself, and don?t share with yourchild from your plate!!! This is not atime to be environmentally conscious or conservative. Don?t keep leftovers orleave food out for more than an hour. Don?t save a napkin from your takeout bag that wasn?t used. Germs are a totally different thing for yourfamily now.
? Considerbringing your own Swiffer and pads. Bring lots of anti-bacterial wipes and go over the computer keyboard,phone, door handles, counter tops, bed trays, buttons, blood pressure cuff, bedframe, and thermometer handle several times a day. Although the room should still be cleaneddaily by the custodial staff, you may want to go over it yourself. The room CANNOT be too clean!
? Asconvenient as it may have been during your child?s initial rounds of chemo, DONOT share bathroom facilities with your child. Use the parent restroom outside your child?s room when possible. If your child does not use the toilet, makesure you wipe the toilet/sink after every use.
? Beextremely selective about visitors, especially children. Your hospital willhave special visiting policies during transplant, but be extra vigilantyourself. NO ONE (including you) shouldbe in your child?s room if not feeling well. Young children (even siblings) should not be in the room at all (as theyare less likely to report not feeling well). The smaller number of people you allow in, the better. Your child can get sick very easily duringthis time.
? Insistthat cleaning staff, food service staff, nursing assistants and any visitorsentering your child?s room wear gowns and/or masks. Anyone entering your child?s room shouldALWAYS wash their hands with soap and dry with a paper towel. If ANYONE coughs, sneezes, or sniffles inyour child?s room, insist that they leave immediately. Small germs can cause big problems duringtransplant.
Keeping your family together during transplant
It?shard to keep your family together during this difficult time, especially if youare traveling to a distant cancer center, if there are other children in thehome, or if one or both parents still need to work. Having a support system is very important. Many times neighbors, relatives, and friendswill take turns with your other children. As much as you would like to help them with their every day activities,it may not be the best solution at the time. Because there are so many disease-control issues with your transplantchild, you want to try to minimize the number of people who come into contactwith him or her during this time. Asmuch as possible, your child?s only contact other than the medical team shouldbe you and your spouse. Many hospitalswill also not allow young visitors when your child is in isolation. Keep this in mind, and be sure to talk withyour team before bringing siblings to visit in the hospital.
Whileyour child is staying at a facility, hotel, or friend?s house near the hospital(either before or after isolation) consider bringing siblings to these placesto visit and/or stay the night. Most ofthe time accommodations can be made, although not usually every day, whensiblings want to visit.
Alsothink about trying a web-cam service to keep your child in touch with siblings,other family members, or friends. Someone at the hospital may be able to help you hook up this service,either on your own laptop or on one loaned by the hospital. This way your child can chat live with his orher family and friends. It works outgreat for Grandma, too!
Oldersiblings might enjoy keeping a journal or tape-recording themselves for yourchild to read or hear. If your child isold enough, he/she may want to journal back or tape-record a message back. Hearing familiar voices is also good for littleones, as they are very responsive to familiar voices.
Keeping yourself busy in the hospital
Thereare many things that you can do to keep your sanity while you?re inpatient withyour child. Although not always thecase, some children sleep A LOT during transplant and may even be unconsciousfor periods of time. Although this may be scary for you and your child, it isgenerally normal and will pass. In themeantime, you?ll have to find something to keep your mind busy. Since you probably won?t want to come and gofrom the room very often (minimizing contact with germs), you should bringalong lots of stuff to keep you occupied. Some suggestions are:
? Magazines,books, crossword puzzles
? Laptopcomputer with internet access (sometimes hospitals will loan one to you)
? Sketchpad or journal
? Crochet,knitting, or scrapbooking
? Handheld game system (may sometimes be loaned by the hospital)
? Healthymunchie snacks (nuts, popcorn, etc.)
? Anew address book to fill out
? Rememberthat your child?s toys can also be therapeutic for you- coloring and craftinghave actually been shown to reduce blood pressure and quiet the mind!
? Bringnew board games or puzzles.
? Buyor rent new movies or movies your child has been wanting to see.
? Encourageplay that gets your child moving and out of bed -- bubbles, window markers,floor activities, tents, ball pits, video games like Wii, anything that mightencourage your child to move! Mosthospitals are supportive about bringing whatever you think might help yourchild. Just make sure it is either newor properly sanitized first.
? Manyhospitals will stock your child?s room with age appropriate activities, newtoys or games, and other favorites based on information you provide about yourchild. New things are always a nice distraction!
? Talkabout the view with your child and encourage him or herto get up and look out the window. Evenif you can only see a wall, sunlight and a busy alley can even beexciting.
? Keepa calendar of your child?s activities and status each day. Display a large classroom calendar (you canget one at a teacher supply store, make one yourself from a poster board, oreven ask the hospital for one) and keep track of your child?s daysinpatient. Encourage him/her to decorateit too.
? Rememberto be happy and upbeat as much as possible around your child. Even on the toughest days, being positive canhelp your child feel better.
? Atthe very least, have all carpets in your home shampooed, steam-cleaned andsanitized. If you are financially ableand your carpets are more than a few years old, you may want to considerreplacing them. If you do this, don?tforget to vacuum the floorboards before new carpet is laid. Usually the carpet-layers won?t do that. Fumes from new carpets may be an additional concern--discuss with your team.
? Haveyour duct-work professionally cleaned if possible and change the filter in yourfurnace. Buy enough filters to changethem every month for the next year, and if you?re financially able, buy thereally good ones.
? Haveyour home cleaned top to bottom. Whetherthis is done professionally or by you, family, and friends, be very picky abouthow your home is cleaned.
1. Wash all draperies,throw rugs, throw blankets, pillows, sheets, and towels.
2. Wash any stuffedanimals.
3. Vacuum or dust behindand under all furniture, including appliances.
4. Clean out yourrefrigerator and freezer. If you have adoor-front water dispenser, change the filter.
5. Discard or give awayany house plants. Ask your team ifyou?re really attached. Some plants canjust be moved to other rooms of the house.
6. Put away or discardyour portable humidifiers. You probablywon?t be able to use them in your home for at least 6 months.
7. Wash out all cabinets(inside and outside) in the kitchen and bathrooms.
8. Clean all blinds.
9. Scour all bathrooms.
10. Clean all lightfixtures and fans.
11. Vacuum or dust allceiling corners and vent covers.
12. Wash all windows andwindowsills.
13. Scrub floors andgrout.
14. Clean your child?s toyswith an alcohol/water solution. Addessential oil or lemon juice for a better smell!
15. Dust, sweep, mop,clean, vacuum and scrub everything in sight! Again, your home CANNOT be too clean.
16. Have your chimneyswept.
? Don?tforget to insist that everyone who enters your home be healthy. Anyone with a sore throat, cough, sneeze, orsniffle should not be near your child until it is okayed by your stem cellteam. This includes grandma, siblings,and even you!
? Askyour transplant team about pets. Eventhe cleanest of pets carry germs, shed hair, and create bacteria in yourhome. Your team will be able to help youmake the decision that is right for your family regarding your pets. At the very least, your pets should beregularly bathed and up to date on all immunizations.
? Ifyou haven?t yet established this rule, insist that anyone who enters your homeremove their shoes at the door or in the garage. They should also immediately wash their handswith anti-bacterial soap. This includesservice professionals, nurses, family members, friends. This should become the new normal for yourhome. Shoes and hands carry way too manygerms.
? Donot put hand towels in your bathrooms for about six months. Although it may seem wasteful to use papertowels, this is again an easy way to stop the spread of germs in your home foryour child. Bath towels should be washed after every usefor at least a few months. Same withbath mats and washcloths.
? Forat least six months, wash everything your child wears, even if it doesn?t?appear? dirty. Don?t ?re-hang? anythingyour child has worn. Wash or cleanfavorite toys as often as possible.
? Replaceyour child?s toothbrush every week or two for about six months.
? Buyanti-viral tissues (Kleenex makes them)
? Wipedown all kitchen and bathroom surfaces daily with anti-bacterial wipes forabout three months.
? Neverleave a snack or cup (especially milk) sitting out for more than an hour. Again,what is normal bacteria for us can harm your child after transplant. Also, don?t save an uneaten portion from yourchild?s plate or cup. Be wasteful!
? Finally,as cruel as it may sound, be careful about how you and others touch, kiss and hug your child for a while. Kisses on the mouth should be limited, andmake sure that anyone who touches your child is healthy and has washed theirhands. If your child touches someone orsomething that you?re not sure about, break out the anti-bacterial wipes. Again, it is difficult to think aboutlimiting something as essential as human contact, but unnecessary contact withgerms will definitely affect your child?s recovery.
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Download printable version here: 0304 Special Issues with Stem Cell Transplants