#1 Ranked Children’s Hospital by U.S. News & World Report
MyPatients provides referring primary care providers with secure access to their patients’ information.
Boston Children's has launched the world's 1st program dedicated to offering hand transplants to children who qualify.
Innovation insider is a semi-monthly e-newsletter analyzes innovations at Boston Children’s, other academic medical centers and from industry.
Read the latest blog by a Boston Children's doctor, clinician or staff member.
There are many ways you can help children and their families get the care they need.
First line therapy is usually surgery, with the goal of removing as much of the tumor as possible. Ideally the entire tumor is removed. In some situations, depending on where the tumor has spread, complete removal may not be possible.
The initial treatment of JNA has two components:
Sometimes surgeons will not be able to remove the entire tumor, such as when the tumor has expanded into the cranial cavity and is impacting the brain or carotid artery. In such instances, remnants (pieces) of tumor tissue will remain. Because it’s possible for these tumor remnants to regrow, your treatment team will discuss additional therapies to treat this residual disease with you and your child.
This additional therapy may include angiogenesis inhibitors – medications that inhibit the growth of new blood vessels. Sometimes, these medications can shrink the JNA tumor sufficiently to allow surgeons to further resect (surgically remove) the tumor. Other times, the patient will need to continue to take the medications until the disease resolves in early adulthood.
Radiation therapy is very rarely considered, as radiation, particularly so close to the brain, can have long term side effects. Medications can often control the disease with fewer side effects than radiation.
Even if the patient’s tumor is fully removed during surgery, there is the possibility a new tumor may reoccur. For this reason, patients with JNA will need to have annual follow-up appointments, during which doctors will perform endoscopic examinations and take new imaging scans to monitor for possible recurrence.
If the tumor cannot be fully resected and adjuvant therapy is required, more frequent visits with a hematologist/oncologist will be necessary to monitor blood work, assess for side effects, and adjust medication dosages as needed. These visits will be in addition to the endoscopic examinations and periodic imaging studies mentioned above.
If your child is not able to return to Boston for follow-up care, our doctors can partner with physicians in your local area for such monitoring.
Although JNA is a complex condition, the long term outcome is usually very positive. There could be side effects from surgical or medical treatment, but these are minimized by an experienced multidisciplinary team. JNA should not ever be fatal.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”