This week I am going to dive into the pros and cons (from a caregiver’s perspective only) of choosing to have a Port placed into your DIPG/DMG child. Please always consult doctors and take their best medical advice but my hope is this will help you to be prepared and have questions for your doctors ready.

Pros of a Port:

• It’s permanent, probably, more than likely it will be surgery once and can stay in then (more often than not). If years down the road your child is no longer using it they may take it out- this is the dream and goal of all DIPG parents!
• Ports require virtually no at home maintenance other than simply monitoring your child to make sure they don’t have signs of an infection.
• If you are not actively being accessed for medical care, it will only need to be flushed and HEP locked every 4 to 8 weeks by your medical team (if not familiar ask your doctor for details and their time requirements).
• There is no outside line so once your child is healed from surgery there is much less concern about it being damaged (or pulled out) by kids just being kids.
• Talk to your doctor about the medical benefits for your current situation.

Cons of a Port:

• If the port ever does need to be removed it will require surgery.
• Accessing it can be scary for kids as they can see the needle being used to access it- Mary always said it looked like a fishing hook. Although you will have them numb before accessing them, it is still visually scary for kids. Be prepared with distractions!
• If it does get infected, you will have a hospital stay.
• If accessed for more than a few days it will need dressing change, cleaning and possible re-access which again means seeing the needle which can cause anxiety and be uncomfortable.
• I have seen A LOT of ports and not many have ugly scars- we weren’t so lucky with Mary. She was tiny and the port stuck out and the scar was very visible, but she referred to it as her “booby” and wasn’t concerned about it but other children, especially older kids, may have an issue. This is not a reason to decline one but an issue to address.

Questions to Ask:

• What is the likelihood in this trial they will need an IV as well?
  • Please don’t make this a deal breaker but it would be great to prepare your child on all possibilities and have a game plan for how you all will navigate it.
• How often will it need to be accessed if not regularly being accessed?
• What type of Port will my child get?
  • You will get asked A LOT what type they have- especially during MRIs- so always good to know. Medical staff don’t always read and search in the chart.
  • Also, great follow ups to ask once they get the port are: what gauge needle and what amount of Heparin does it need? Again, you will get asked this A LOT even though it should be in the chart.
• How long will surgery/recovery take?
• Signs of infection to watch for?

Always talk to your doctors but I hope this has helped prepare you as much as it can. Nothing can ever fully prepare you for medical issues with your child.

Until next time- hug your kid and those you love a bit more today and Mary- love you, miss you, mean it.