The First Month off Treatment for Non-Hodgkin Lymphoma (NHL)


After your child’s “end of treatment” date, there will be a period of transition medication is not longer given regularly and follow-up appointments become fewer or farther between. Otherwise, there will be few immediate changes, as it will often take several weeks for blood counts to return to normal, and several months for the immune system to recover.  Some families may find this transition period awkward.

Does My Child Still Need to Take BactrimTM (Septra®)?

Yes, if your child has been taking BactrimTM (Septra®), this medicine is usually continued 2 to 3 days per week for several months after treatment ends.

What Do I Do if My Child Develops a Fever or Becomes Ill?

In the first few weeks after treatment, your child may still have low blood counts and a central line. During this time, you need to contact the treatment center if your child develops a fever, and your child may need to come to the hospital for antibiotic therapy. Please talk with your healthcare team about what to do if your child becomes ill.

What Happens if My Child is Exposed to Chickenpox or Shingles?

You should call the treatment center if your child is exposed to someone with chickenpox or shingles. Your child may need medicine to help prevent infection with the chickenpox virus. If your healthcare provider has told you that your child had enough of his or her own immunity against chickenpox during treatment, there is no need to take any action if exposure occurs after treatment ends.

When Can the Central Line or Port be Removed?

Children with cancer often have the central line or port removed soon after treatment ends. Most health care providers recommend that children treated for a solid tumor maintain the central line until the final scans or tests are completed and remission is confirmed. The central line or port is usually taken out in a procedure or operating room as a day patient. This is a minor surgical procedure and children generally have minimal discomfort during the first one or two days after the central line or port is removed.

What Happens When a Blood Test is Needed after the Central Line or Port is Removed?

If during treatment your center drew blood using a central line, central port or PICC line, your child will have blood drawn using a needle after the line or port is removed. Most children handle venipuncture (blood draw) well, but an occasional child may become distressed by the thought of having a “poke.” Your child life specialist or social worker can teach you some evidence-based behavioral strategies to help reduce your child’s distress.  If these techniques are not effective, you can use ice or a local anesthetic cream or patch, such as EMLA Cream®, to numb the area. Your nurse will help show you where to apply the anesthetic.

It is important never to be dishonest with your child about an upcoming blood test, as not doing so can lessen their trust in you. At the same time, there is no need to discuss an upcoming blood test weeks before the event. You know your child best.  Some children like a longer period of time to prepare, but others do best with a shorter timeframe.  If your child is concerned and you are worried, plan in advance.  By scheduling an appointment with a child life or behavioral health specialist prior to the blood test, you can learn new strategies with far less pressure.  These evidence-based strategies should be taught to your child with you present so you can coach your child for the actual blood draw.

Why Does My Child Still Feel Tired?

When children end treatment, fatigue is not uncommon. It takes time to rebuild strength and stamina. Most parents find that this can take several months. You can also observe your child’s sleep habits and see if there may be things you and your child can do to improve his or her quality of sleep.

How Often Will My Child Need to Come Back to the Hospital?

When your child completes treatment, monthly visits generally continue for the first year off treatment. Children treated for a solid tumor may have longer intervals between visits, generally between 6 and 12 weeks for the first year. Your healthcare team’s preference and the policy of your clinic or hospital may be slightly different.

The main purpose of follow-up visits is to check for continued remission. Children will usually have a complete blood count to assure bone marrow recovery and may have blood tests to assess the health of organs, such as the liver and kidneys. A general check up is done by the healthcare provider, including a physical exam and questions about how your child is doing.

Children who were treated for a solid tumor may also have scans performed on a regular basis to check for continued remission. The frequency of CT scans, MRIs and other tests depends on the type of cancer and treatment plan. You will usually be given a schedule or calendar of the planned follow-up visits and scans at your first follow-up clinic visit.

What Can My Family Do to Celebrate the End of Treatment?

Parents and patients find that friends and family members are often overjoyed for them at the end of treatment. You may be greeted with big smiles and told how well your child looks, and you may be asked, “Isn’t it great that your child finished chemo?”

For many families, but not for all, a celebration feels very appropriate. Your child and family have just gotten through the huge challenge of treatment. That is a great achievement. The celebration might be low-key, such as going to the park on what would previously have been a clinic day. Some families choose to have a family party or celebration at school. Some find that planning an enjoyable vacation gives them something positive to focus on.

Is it Okay if I Don’t Feel Like Celebrating?

While some parents want to celebrate the end of treatment, other parents find that their own reactions are much more cautious, because they are worried about the future. Planning a party might be premature for these parents.

Even if there are a lot of challenges ahead, you and your child have done something pretty amazing, by getting through all the weeks, months or even years of treatment. Give yourself a moment to acknowledge this milestone. Whatever you and your child choose to do will be right for you.

 

Two to Six Months off Treatment
Six to Twelve Months off Treatment
One Year off Treatment and Beyond
Young Adults Transitioning to Adult-Focused Care
Long-Term Follow-Up Care 


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