This may be the first visual sign that your child is battling something medical. It is completely normal to be sad and scared. I wish I could tell you this would be the only visual sign but very likely won’t be.
Each port access brought its own heartbreak as Mary was terrified of the access needle. She couldn’t feel it (just pressure) due to scar tissue and being numb but oh man could see she it and we often said it looked like a really mean fishing hook. We got good at distractions during this time which usually included some form of an electronic, stuffie loves and Luke Bryan music. We made de-access as “fun” as we could by letting her bring an array of Band-Aids to choose from with her favorite colors and characters and again lots of electronic time. It often ended in a sticker and a gift shop trip too. Parent guilt during a child’s cancer treatment is real and it is ok to spoil them. Do whatever you need to for you and your child to be able to coop and enjoy what time and experiences you can- there is no “right” way to do this, only what is “right” for your family.
We found in our journey that it wasn’t just-wham-cancer diagnosis grief but everything compounds on itself and we ended up experiencing new types of grief with each small change. The PICC line for Mary was the first visual sign and it was this grief of no way to hide her medical issues- she became the “sick” kid. The port brought a grief from the scar Mary had to forever remind us that this treatment was serious and the end we would likely reach wasn’t one we wanted. Feel what you need to feel, share it out loud, get help if you need it and remember it isn’t just you grieving- the whole family is especially your warrior.
Until next time- hug your kid and those you love a bit more today and Mary- love you, miss you, mean it.
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