Your child will require specific care as part of their daily routine after a blood and marrow transplant. This section will help you understand how to provide the best care possible for your child.
Bathing
Your child has to take a bath or shower each day. Remember to:
- clean the bath tub with a cleanser before every use.
- use any non-irritating mild shampoo or soap to wash the hair or skin. If your child’s skin becomes dry, use moisturizers such as Keri-oil® or Vaseline®.
Mouth care
To minimize infection, your child also needs to take special care of their teeth and gums. Remember to tell the doctor if your child develops any white patches or cuts inside the mouth.
While brushing, here are some points your child should to keep in mind.
- Brush teeth at least two to three times a day. This can usually be done after meals or before bedtime. Along with toothpaste, use a soft toothbrush, such as a baby toothbrush. Once your child’s platelet counts have recovered, they can also use an electric tooth brush.
- A clean damp wash cloth wrapped around a finger can also be used to gently clean the teeth and mouth.
- Make sure to also brush the area where the gums meet the upper and lower cheeks.
- Sometimes the gums start to bleed after brushing. Use a baking soda mouth wash, two to three times a day until the bleeding stops.
For more information, please see the page on Baking Soda Mouthwash.
Skin care
Your child’s skin needs to be protected against the sun, especially if your child:
- is taking medicines that make him more sensitive to the light
- received total body irradiation (TBI) as part of his conditioning regimen
- develops graft-versus-host disease (GVHD) on his skin. This usually appears as a skin rash.
To protect your child’s skin from the sun, he should:
- cover the skin as much as possible with clothing
- wear a hat, until the hair has grown back. A hat will also protect the face.
- apply sunscreen with SPF30 or higher all year round, even in the winter.
If your child gets bitten by a mosquito, do not use non-prescription 1% hydrocortisone cream. Instead, to relieve the pain and itchiness, apply:
- calamine lotion
- polysporin®
- aloe-vera
- ice
Try to avoid being outdoors at dusk and dawn, when mosquitoes are most present. To prevent mosquito bites, your child can apply some insect repellant to the clothing or any skin that is exposed. There are DEET products which are formulated for children. These mosquito repellents contain 10% or less DEET. Remember that your child is at more risk from West Nile virus and that mosquitoes can be one means of catching it.
Food and nutrition
As your child recovers from his transplant, it is important to maintain a healthy diet. The dietitian in the hospital can help you with nutrition information when you visit the clinic. Keep track of your child’s nutritional intake. Write down what your child eats and drinks every day. For example, you can draw eight glasses on the fridge. Your child can cross off each glass as he consumes more fluid throughout the day. He should take fluids in smaller amounts, gradually during the day.
Taking medicines
Your child may need to some medicines after his transplant that he may continue to take at home. He takes these medicines on a schedule determined by your child’s protocol. Usually, most children stop taking transplant related medicines one year after the transplant. Doctors will re-evaluate your child's medicines at every clinic visit.
Some medicines may include:
- Cotrimoxazole, which is an antibiotic to reduce the risk of developing pneumonia. If your child’s blood counts are low during clinic visits, some children may take a drug that also prevents pneumonia, called pentamidine. This drug is inhaled or intravenously (IV).
- Penicillin to prevent infection
- Electrolyte supplements, such as magnesium and potassium, which help the cells in our body work properly. Our kidneys keep the levels of electrolytes constants in our bodies. After treatment, the kidneys may become temporarily ‘leaky’ and have a harder time balancing electrolytes in the body. Your child will no longer need to take electrolyte supplements as his kidneys recover.
Children with an allogenic transplant will take the immunosuppressant drug called cyclosporine by mouth. They usually take this medicine between three to six months after the transplant.
While taking medicines at home
- Get the drugs before you go home. You can get them from the hospital pharmacy or any pharmacy recommended by the treatment team. Your local pharmacy may not have all these medications in stock. It could take several days to order them.
- Make friends with your local pharmacist. They can tell you about the services they offer, and whether they can make drugs for filling future prescriptions. Some medicines are specially made for children, particularly liquid forms of medications.
- If you do not have drug benefits, your discharge planner, social worker, or nurse can help look into drug programs for you.
- Check how much medication you have remaining. You may need to reorder some drugs during clinic visits so that no doses are missed.
A community nurse will arrange for visits to your home. She will help with your child’s central venous catheter and intravenous (IV) fluids.
Returning to the clinic
Your child will also come into the hospital to receive blood work at least once weekly for several weeks. As your child continues to recover, he comes to the clinic less frequently.
During clinic visits, doctors will run blood tests to check the level of certain drugs in your child's blood. This will help them adjust the dose of the drug, if required. The blood tests also help doctors closely monitor your child’s blood counts and electrolyte levels. These will gradually return to normal levels as the body recovers.
During clinic visits, make sure to bring with you:
- your child’s daily nutritional and calorie intake
- all of your child’s medicines for that day
- any questions or concerns you want to discuss with your child’s doctor