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proton pediatric

Hints, tips and what to expect at treatment

 
At this point, you will have already been cleared and accepted from the insurance company and the proton center respectfully. Also, prior to arriving for treatment, any and all necessary living arrangements should have been made as you will have to live near the center for about five to seven weeks while your child is being treated. Please see our sections on “kid friendly places to stay and transportation”. Treatments will typically be administered on a routine schedule M – F. You will be notified of any holidays on which your child will not receive treatment. Though the treatment itself only last minutes, typically, you will need to plan for 2-3 hours for treatment.
 
The following information will help you understand what to expect during your child’s treatment. 
 
Your child’s professional proton team:
Before any treatment is administered, you’ll be greeted by your child’s treatment team. Unless someone is out of the office, your child’s team will usually consist of the same employees through the process. There should be a clinical nurse to take vitals, a doctor for anesthesia, gantry nurse, doctor of radiation oncology, radiology technicians, etc… and hopefully a child life specialist.
After meeting the treatment team and before treatment can begin, your child will go through a 3-D “simulation”. This is the process where they make the apertures (a cooper piece that controls the beam’s area) and compensators (a thick acrylic plastic piece that controls the depth of the beam.) The simulation appointment will typically be your first appointment and take longer than your normal treatment sessions. This is because a new ct scan (computerized tomography) and/or x-rays (simulation film) will be taken so that your doctor can map out the area(s) to be treated.  Treatment can only begin after the mold(s) are completed. The process of making these molds usually takes about five to ten days. Also, they have to determine how to keep your child in exactly the same position so they sometimes make masks for brain tumor cases and other types.  In addition you may notice small marks, or “tattoos”, placed on the body. This is so that the team can align your child exactly for each treatment.  These marks or “tattoos” will need to stay on the body until a team member says it is ok to wash off. Also, these marks might stain clothing so it is a good idea to bring or wear old clothing to treatment. 
 
If your child requires any type of port dressing changes, shots, etc…, now is the time talk to the medical team to see if it can be done while your child is under anesthesia; this will eliminate the anxieties if it was to be done while they are awake. (We did this with our son, Jacob, and it was a wonderful thing.)
 
In most instances, chemotherapy can be administered during daily proton treatments, check with your oncologist and proton doctor to determine if any chemo. drugs can not interact with proton radiation (for example, doxorubicin makes children more sensitive to light so many times this will be excluded during radiation treatment). Also, be sure to check to determine how you child will be transported between the children’s hospital and proton center if chemo and proton are going to be done simultaneously. Many times this will be done using an ambulance.
 
Will your child need anesthesia for proton therapy?
It is very critical and important that a patient remain very still during treatment to ensure the most pinpoint accuracy. Most children are unable to remain still for very long, so as a precaution, most centers will administer anesthesia to patients from 8-12 years and younger. In consultation, you and the proton radiation oncologist will make the decision of whether anesthesia is necessary for your child after your first meeting. There are many factors involved in the decision such as:
  • Child’s age
  • Location of child’s tumor
  • Time needed for each treatment
  • Position in which the child will need to stay still to get to the tumor
 
If your child is in the process of receiving chemotherapy, he or she will more than likely have a Hickman’s catheter/ port, a CVL port or similar in which anesthesia can be administered. Each center uses different types of anesthesia. Be sure to review to your options. Currently, propofol is the drug used most frequently because it has a good tolerance for most children and is fast-acting and quick to leave the body, versus for example, nebutal which is long lasting. It is very important in the beginning to determine how your child reacts and to determine if this is the proper anesthesia medication. There are many types available, don’t hesitate to discuss options with your Anesthesia Doctor.
 
 
Getting ready for treatment day:
There are the eating and drinking restrictions on treatment day. If anesthesia is being administered before treatment, your child must have an empty stomach. This means that your child is NPO; cannot have anything to eat or drink for a determined number of hours before anesthesia can be administered. Generally, the rules about not letting your child eat or drink includes
  • All children – 8 hours prior to treatment, no solid food
  • Children younger than 6 yrs old – up to 6 hours prior to treatment, dry toast (no jelly, butter, etc…) or a little dry cereal
  • Infants – up to 4 hours prior to treatment, breast milk if breast feeding
  • All children – up to 2 hours prior to treatment, may have fluids referred as “clear liquids”. These liquids include:
    • Water
    • Pedialyte
    • Apple juice
    • Cranberry juice
    • White grape juice
 
Jell-O, popsicles, clear soda’s are not considered as “clear   liquids” and therefore they are not permitted.
 

Your nurse will go over with you on exact and specific eating and drinking restrictions for your child to eliminate any confusion. If unsure, always ask for a print out listing these restrictions and the times. If your child has anything to eat or drink after the allowed time, it is very important to inform your nurse as the treatment will be canceled for the day for your child’s health and safety.

 
What should your child wear during treatment:
During treatment, most children are allowed to wear their own clothes. Clothes should be loose fitting and comfortable. Some centers may require that the clothing have no metal accessories, i.e., snaps, chains, buttons, jewelry, etc… Please check with the center to get a list of detailed requirements or what is and is not permitted. Recommended and most commonly worn are t-shirts, sweat pants/ shorts, stretch pants/ shorts, pull up shorts, etc… For infants, “onesies” are usually permitted. Items such as hooded sweat shirts, jackets, turtlenecks, etc… are not allowed.
 
  
Should you bring anything for your child for treatment:
For any child’s doctor office visit, here are a few suggestions:
  • Books, games, toys, etc… to keep your child occupied if treatment time is running late
  • Familiar “comfort” blanket or toy
  • Snacks and beverage for your child to have in the recovery room. Most centers require that your child to be able to eat, drink and be able to keep it down before they are released
  • Something to keep the parent(s) occupied while waiting in the waiting room; laptop computer, book, newspaper, magazine, etc…
 
What to expect during your child’s treatment:
Typically, most centers try to treat the smallest and youngest children first as they are on the food and drink restrictions. Keep in mind that your child’s starting time could fluctuate periodically. This may be due to a child’s age, location of tumor, any special equipment that may be needed, equipment adjustments and the number of children being treated each week whether it is new patients or patients finished with treatment. Your proton center will notify you ahead of time of any time or schedule changes.
 
Your length of time at the proton center during each treatment will usually be about 2 -3 hours. This includes
  • Arriving 15 -30 min. ahead of scheduled treatment time or 45 min. ahead if a port dressing change is needed
  • Administering anesthesia
  • Proton treatment process, usually about 45 min. – 1 hour
  • Recovery time from anesthesia
  • Scheduled appointments with any doctors
 
Staying with your child during treatment:
Most centers have different policies on who can be with and go with their child into the treatment area. Typically on the first day of treatment, both parents will be permitted to go back with their child and then thereafter it will be only one parent. Other children or siblings usually are not permitted at all into the treatment areas and most centers also ask that you do not leave other children or siblings in the waiting room unattended. If you are going into the treatment area with your child, you may be asked to hold and comfort your child to ease with any anxieties. During the actual proton treatment itself, parent(s), family member(s), etc… are not allowed in. During the treatment process, patients are monitored by closed-circuit TV. 
In some centers there is a separate recovery room area for the children.
 
Each day before treatment:
Your child will be assigned a nurse that you will meet with each day of treatment to take vitals; temperature, blood pressure, weight, height. The nurse will also flush out the port, get any blood samples and begin any I V’s, if needed. You will have to answer a series of questions with each visit. Ex: list of all medications w/ dosage, last time they ate or drank exposure to chicken pox, any coughing or any other symptoms and also to answer any question you may have. A good idea is to have a list of medications already listed on paper that you can hand to the nurse each day.
 
The anesthesiologist will meet with you and will explain step by step what will be done for administering the anesthesia. 
 

Starting anesthesia:

  • When it’s your child’s turn for treatment, your child’s nurse or treatment staff will walk back to the treatment area with you and your child. You will be met by the remaining staff who will watch and care for your child while being treated. Do not hesitate to ask any questions as the staff will be happy to answer any questions or give explanations about the equipment or any concerns.
  • Proton centers will usually allow you to hold your child, stay close and comfort them prior to getting the anesthesia.
  • As you are holding and comforting your child, the anesthesiologist will begin administering the anesthesia. Rather quickly, you will begin to notice your child falling to sleep. 
  • Once your child is asleep and positioned on the treatment table, you will have to return to the waiting room.
 Recovery from anesthesia/ treatment:
  • Some centers have separate recovery rooms areas but all the centers will not allow the treatment areas to be used for recovery purposes. 
  • Typically the gantry nurse will bring out your child or call for you after the treatment is over and while they are still asleep.
  • Have a snack and something to drink ready for your child when they wake up
  • Children come out of anesthesia differently; grumpy, happy, confused, crying, slowly, etc… As a general rule, your child will act like they would if they were being woke up very early in the morning from a deep sleep, be prepared!
Your child will be allowed to leave from recovery when:
  • Your child is awake, alert and coherent
  • Temperature is normal
  • Is able to move comfortably
  • Does not show any signs of pain
  • Is able to drink fluids
  • Is able to eat a snack or food item

Once your child has been cleared to leave for the day, go and try to enjoy the day!

 
Instructions following anesthesia/treatment:
Unless otherwise directed by the nurse or a doctor with special directions, your child should be able to
·        Return to eating a regular diet
·        Take any prescribed medications
·        Return to normal activities
 
When should the doctor be called:
The doctor or emergency number should be called right away if your child experiences any of the following
  • Not eating or drinking in normal routine
  • Nausea or vomiting
  • Decreased urine output
  • Severe headaches or pain
  • Seizures
  • Temperature of 100.4 degrees F (38 degrees C) two times in 24 hours or 101 degrees or higher
·        Any sudden changes in activity level, increased restlessness or sleepiness
 
Care for a central line:
The doctor should be called right away if your child shows the following signs or symptoms of infection
  • Redness or swelling around the central line site
  • Bleeding or drainage from the central line site
  • Pain from the central line
  • Anything unusual
After the proton treatment process has ended:
Upon completion of proton radiation treatment, there could be some potential short term side effects that usually go away a few weeks after treatment stops which typically include
  • Red, itching and irritated skin – This will typically occur in the treated area about 4 weeks into treatment and have the appearance of a sunburn
  • Fatigue – Your child may feel more tired than normal, make sure that they get plenty of rest and that they do not overexert themselves