Family Support
Treatment Organizations & Locations
Childrens Oncology Group (COG)
You will see this group listed under CureSearch as well. COG is the world’s largest pediatric cancer research group. With a few exceptions, all hospitals participating follow the same protocols and offer the same clinical trials…in other words, if you contact one of them, you’ll get the same information from all of them. You can follow the link to find the closest hospital to you, as well as who to contact at that hospital.
COG
Memorial Sloan Kettering Cancer Center
OLocated in New York City, MSKCC is the nations oldest and one of the largest Cancer Centers in the nation. They are part of the COG network, but often run independent clinical trials. A substantial and well-qualified team of researchers and doctors give you another option. Follow the link for more information on how to contact the MSKCC team.
Sloan Kettering
St Jude Children’s Research Hospital
St Jude is an independent research facility, and is a leader in studying leading edge treatment for pediatric cancer. Many leading edge treatments originate at St Jude. They are located in Memphis, TN. Click through for more, including their unique “admission acceptance” policy.
St. Jude
Dana-Farber Cancer Institute
In conjunction with Children’s Hospital Boston, DF provides expertise in Pediatric Cancer, with particular success rates in ALL. DF is located in Boston Massachsetts. Click through for more information on your specific diagnosis, and contact information.
Dana-Farber
Are there Cancer Centers you think should be listed? Contact US with their information, and specifics on why the should be listed. Thanks!
My Child is Diagnosed, Now What?
Emotions
As a parent or family member, the day your loved one is diagnosed is the worst of your life. I will never forget the day our son was diagnosed. For us, it seemed like each time the doctor opened her mouth, the news kept getting worse and worse. We were numb with fear for Nicholas. We were not given a very good chance at survival. We were scared about what the journey of treatment will bring. We were so angry that your son has to endure this monster. We were sad for the loss of innocence. If you haven’t had to live this day, it is hard to put a word on. For those that have…you know.
As parents, it’s important that we don’t let our kids see that we are angry, scared, or sad. They feed off of us. If we are scared, they will be too. If we are arguing (which will happen given the stress of the situation), they will feel responsible. We are their emotional rock, and your loved one needs your support…needs you to be their rock.
Oddly enough, they will be your rock, your foundation too. You will find yourself drawing strength from their tenacity, courage, grace, and attitude.
It’s also important to remember that your Cancer Journey is a marathon, not a sprint. It’s important not get too high on good news, or too low on bad news. Expect bad days…they will come. Hope for good days…they will come as well.
Emotions are a major part of your journey. Managing emotions make an impossible situation bearable…for you and your loved one.
It is helpful to talk with someone about your emotions. You may be comfortable speaking with a professional, a member of your church, or a family member. We also offer a way to talk to others living through what you are through this site. Feel free to contact us for additional support options.
Separation
As a family, treatments are a difficult time. Hospital stays are common. In some cases, treatments are in another city or state. Parents and siblings are separated at certain times for extended periods. It is a strain on the family, and is a difficult part of a child being diagnosed with Cancer.
It’s not easy, but making time required away special helps. One solution to the cancer visits was making it special time for our son and each of us. “Hospital Hotel Sleepovers” were special times for Nicholas, with one on one time with his Mom or Dad. For siblings, especially younger ones, this can be traumatic as well. We have found that minimizing change in brother or sister’s life was the most beneficial. Our solution was bringing a family member in to live with us during the most difficult times of treatment. Others have brought a nanny into their home. Some have used babysitters and friends to help. There is no one right answer. Whatever makes your loved one going through treatment comfortable, and the rest of the family comfortable is the right solution for you. Your treatment center can help with this, and it may help to get help from a professional for you and your kids. Again no right Answer. Check our web forum, or contact us for additional information.
Treatment
Ws parents, you have probably heard what Cancer treatment (chemotherapy, radiation) side effects are. The truth is, each child has a different experience. Some have many side effects, some have only a few or limited side effects. Advancements in anti-nausea, growth factor, and anti-fungal medicines have also helped. Here are some of common side effects you may see, and what you can do to help:
Fatigue
Fatigue is the most common side effect of chemotherapy. Your child may feel very tired, even after sleeping and resting. Fatigue may last for days, weeks, or months, but it does go away once treatment is over.
Encourage your child or teen to rest and sleep as often as possible - even if it doesn't immediately result in more energy - because rest helps the body recover from chemotherapy. Short naps or breaks from activity may be more beneficial than longer ones. Your child may need to reduce or eliminate all but the most essential activities during chemotherapy treatment.
Discomfort and Pain
There may be some initial discomfort when a chemotherapy catheter or IV needle is placed in your child's vein. Certain anticancer drugs also cause mouth pain, headaches, muscle pains, and stomach pains. Chemo medicine may cause temporary nerve damage, which can result in burning, numbness, tingling, or shooting pain in the fingers and toes.
If your child is taking pain medication, he or she should not skip doses - waiting until pain is felt can make it harder to control. If your child's pain persists or worsens at any time, talk to your child's doctor. Also, be sure to discuss the use of alternative or over-the-counter medicines with your doctor. There may be drug interactions you'd want to avoid.
Skin Damage or Changes
Your child's skin may be red, sensitive, or easily irritated in the days, weeks, and months during and after treatment. If your child had radiation therapy prior to chemotherapy, the treated skin may turn red, blister, and peel once chemo begins. This condition is known as "radiation recall."
If your child has sensitive or irritated skin, he or she should wear loose, soft clothes and avoid using lotions or other commercial products on the affected area. Your child's doctor may recommend an ointment or cream to reduce irritation.
Hair Loss and Scalp Sensitivity
Hair loss (alopecia) and a sensitive scalp are common side effects of chemotherapy because anticancer drugs often kill the healthy cells responsible for hair growth. Your child's hair may become thinner and then fall out completely or in clumps. Hair thinning and hair loss may occur all over the body during treatment, including the head, face, arms and legs, underarms, and pubic area. Kids undergoing chemo may lose their hair for a while.
Losing hair can be scary for kids, especially if they're at an age when being different isn't cool. Getting a shorter haircut may make it less traumatic for your child once his or her hair starts falling out. Your child may also feel more comfortable wearing hats, bandannas, baseball caps, scarves, or wigs until the hair grows back. And it will grow back. Most children experience hair regrowth before treatments end or within 3 months following the end of treatment, though it may be a slightly different color or texture than it was before.
To protect your child's head from sun exposure, have your child wear a hat and sunscreen while outside. If your child doesn't lose his or her hair, mild shampoos and hair products are still recommended to avoid scalp irritation.
Mouth, Gum, and Throat Sores
Chemotherapy may cause sores in the mouth, gums, and throat or cause gum tissues to become irritated and bleed. Your child's doctor may prescribe a mouth rinse or other products to reduce pain, dryness, and irritation. Be sure to take your child for regular dental checkups and follow the dentist's advice on how to brush your child's teeth during chemotherapy. If your child has mouth or throat pain, soft, cool foods may be easier to chew and swallow, and acidic foods and juices should be avoided.
Gastrointestinal Problems (including loss of appetite, constipation, diarrhea, nausea, and vomiting)
Gastrointestinal upset is a potential side effect of chemotherapy treatment, although medications can be prescribed to prevent or reduce nausea and vomiting. Talk to your child's doctor about medicines or dietary changes that may alleviate your child's upset stomach, prevent weight loss, or combat constipation.
If your child doesn't feel like eating during treatment, try offering several small meals rather than fewer larger ones. And be sure to offer foods high in nutrients to prevent weight loss. Avoid serving fatty, sweet, spicy, or fried foods. And even though your child may not feel like drinking, clear broth, juices, and sports drinks can replace fluids lost through vomiting and diarrhea. Room-temperature beverages may be easier for your child to drink than hot or cold liquids. A registered dietitian or your child's doctor may offer suggestions for ensuring adequate nutrition and hydration.
Urinary System Problems
Some chemotherapy drugs can irritate or damage the bladder or kidneys and can cause the urine to change color or take on a strong odor for a day or 2. Your child's doctor may ask for a blood or urine sample before beginning chemotherapy to evaluate kidney function.
Giving your child plenty of fluids to drink will ensure good urine flow and help to prevent problems in the urinary tract. Be sure to let your child's doctor know if your child experiences symptoms that may indicate a problem with the urinary system such as painful or frequent urination, reddish or bloody urine, or an inability to urinate.
Central Nervous System Problems
Chemotherapy may cause temporary confusion and depression, which should go away once your child's chemotherapy treatment is completed. You should talk to your child's doctor if your child experiences these side effects.
Anemia
Low levels of red blood cells, the blood cells that are made in the bone marrow and carry oxygen throughout the body, may also result from chemotherapy. This is known as anemia. Your child's doctor will monitor your child's blood counts regularly. Red blood cell transfusions may be necessary.
Blood Clotting Problems (or thrombocytopenia)
Chemotherapy drugs may inhibit the body's ability to produce platelets, which help blood to clot. Your child may bleed or bruise more easily than usual because of a reduction in platelets. Platelet transfusions can be given to treat low counts.
Increased Risk of Infection
In addition to changes in the red blood cells, chemotherapy may cause lowered numbers of white blood cells, which are part of the immune system and help the body to fight infection. Therefore, your child is more vulnerable to developing infections during and after chemotherapy treatment.
But you can take steps to prevent infections. Remind your child to wash his or her hands before eating, after using the bathroom, and after touching animals. If friends or family members have contagious illnesses, such as a cold, the flu, or chicken pox, they should refrain from visiting your child. It's also a good idea to avoid crowds and children who have received certain vaccines such as chicken pox or oral polio - these are called live-virus vaccines and they may spread disease to children with low blood cell counts. Your child also shouldn't receive immunizations without the OK from your child's doctor. To prevent food borne infection, your child also shouldn't eat raw fish, seafood, meat, or uncooked eggs.
Long-Term Side Effects
Chemotherapy also has the potential to cause long-term side effects (sometimes known as late effects). Depending on the type and dose of chemotherapy and whether it was combined with radiation, some children may experience late problems. These may involve any organ including the heart, lungs, brain and nervous system, kidneys, liver, thyroid gland, or reproductive organs. Some types of chemotherapy drugs may also increase the risk of cancer later in life. Receiving chemotherapy during childhood may also place some children at risk for delayed growth and cognitive development, depending on the child's age, the type of drug used, the dosage, and whether chemotherapy was used in addition to radiation therapy.
Seeing such a long list of potential side effects in black and white can be frightening, but remember that despite the side effects that they may cause, chemo medicines are designed to not only help your child stay healthy in the long run, but to help save his or her life. In the meantime, be sure to tell your child's doctor about any side effects your child is experiencing so he or she can help treat the problem and make your child as comfortable as possible.
Caring for Your Child
Depending on your child's age, he or she might have many questions about cancer and its treatment. Be honest when talking with your child - discuss your child's disease in age-appropriate terms and encourage your child to share his or her feelings. And remember that you and your child aren't alone: Doctors, nurses, psychiatrists, psychologists, social workers, and other members of the cancer treatment team are there to reassure you and your child before, during, and after chemotherapy.
If your child or teen is scared about starting chemo, here's a tip: Arrange a tour of the hospital or clinic beforehand or join a support group for families coping with childhood cancer. These activities may make the treatment seem less frightening. As a bonus, you may find that meeting other cancer patients and survivors helps your family develop a network of friends and supporters who are dealing with the same issues.
Once your child has completed chemo, it's still important for your child's doctor to monitor your child's health and progress in follow-up appointments. During these checkups, the doctor will want to know how your child is feeling, whether he or she is experiencing any continuing side effects, and whether there are any signs of the cancer recurring.
Most parents find it difficult enough to cope with their child's cancer diagnosis, let alone to take in facts, figures, and statistics about chemotherapy and its side effects. Some people find comfort in the medical knowledge, whereas for others, too much information is frightening and counterproductive. Whether the former, latter, or something in between is the best approach for you and your family, keep in mind that, despite the side effects they may experience, the majority of children are cured of their cancer and can enjoy happy, productive lives.
Life at Home
As a result of the treatments, life at home is impacted. Medicine becomes part of life. Addressing the needs of a sick child become the new priority. And decisions on interaction with others is a topic you will face.
Some parents (as we did) choose to keep their child in isolation to limit the risk of infection and illness. Others try to continue life as normal as possible. There is no right answer. Consult with your doctor, check our Forum, or contact us for more information
Helpful Hints
Living through treatment for pediatric Cancer is tough enough. We have addressed some helpful hints for treatments, here are some other basic helpful hints to make life a bit easier for you!
Clinical/ Hospital Vists
In many hospitals, clinic visits are long days and frustrating visits. We wanted to avoid as many we could. Since our son had a central line in, we could draw our own blood, and take that to a predetermined laboratory. We still had to go to the clinic for draws, but our visits reduced dramatically by doing our own draws. Check with your oncologist team to see if this is an option for you.
Medical Records
You will likely have to reference your files often. To avoid confusion, keep your records organized in a way that makes sense for you. It made sense for us to use a large binder, and created tabs for each type of billing document.
Billing Errors
Billing errors happen frequently. For us, it seemed the billing company got it wrong more than they got it right! Christy created a simple document that she could print and send with our insurance information, citing where they missed something. It only took a few minutes every time a mistake was made!
Prescription lists
Emergency room or hospital visits are unwelcome but necessary in many cases. One of the questions our hospital asked each visit was to list out current prescriptions that Nicholas was on. Since he was on so many medications, We created a spreadsheet that listed each medication, strength and frequency. It made admissions MUCH easier!
GCSF Injections
GCSF injections are unpleasant. The benefits are great. Giving a shot to get those benefits are dreadful. Here’s a few hints to make the shots go a little more smoothly:
- Try using EMLA cream to numb the injection site. EMLA is a prescription product that comes in a tube, and is generally prescribed with clear bandaging patches called Tegaderm to go over it. A nickel sized dollop of EMLA, covered with a square of Tegaderm, will numb the spot within an hour and a half or so.
- Warm the Neupogen in the syringe to room temperature before giving it--it stings MUCH less that way. (At any other time, Neupogen MUST be kept refrigerated!) We just set the syringe out of the fridge at the same time we put the EMLA on, so they're both ready at the same time.
- Make sure and put a new needle on the syringe after drawing up the Neupogen. The needle is dulled going through the rubber stopper at the top of the bottle, and a fresh, sharp needle will go through the skin much more easily and less painfully.
- Pinch up a good sized area of flesh on the thigh to put in the shot. Insert the needle, inject a tiny amount of the GCSF into the area and then pull the needle back slightly and inject the rest. You've created a little space in there with the initial poke, and when you pull back, the medicine fills the empty space
- If the medicine still seems to sting, try injecting it v-e-r-y s-l-o-w-l-y
Communication
With all the hospital visits, doctors appointments and other daily responsibilities, it can be difficult to find time to return the many phone calls and emails from family and friends who are there to support you. Many times they simply want to know how your child is doing and how your family is holding up. In our experience we found that many families turned to the internet to help relieve that stress.
Two secure and confidential, free services exist on the internet to create a webpage for your child. These services allow you to create the page in privacy and you only give out the address to those you would like to stay in touch with. They are easy to set up and use.
For an example of these types of webpages visit our Caring Bridge page.
