As I read these tips on their son's caring bridge page, I thought I would post them here on this blog. Cancer isn't something only older people get, but it is something that crosses all age groups. When a child receives a pediatric cancer diagnosis it is a devasting diagnosis that many cannot wrap their minds around. Here are Katie's 10 tips to moms and dads with a newly diagnosed pediatric cancer diagnosis:
1. School work and being smart is super important. But when you have a child fighting for their life and you need to focus on one thing, make sure you keep reading to them. Read as many books with them as you can. Try to make it fun and funny so they stay interested. It’s beneficial on many levels.
2. You can never have too many thermometers. During chemo treatment, you will be checking for that magic fever number of 101.5 over and over and over. Make sure you have 2-3 solid ones. Take the temp with each one, then average. Trust me, you will go crazy if you only have one and it’s not accurate. And you might end up in the ER with a temp that’s 1-2 points less. Better to be safe than sorry.
3. Don’t forget to take care of yourself. In the beginning, you are going to get depressed, overwhelmed, crave junk food or not crave food at all, scared and completely physically and emotionally exhausted. Do not forget to focus on keeping yourself healthy. The first 5 months of this, I forgot about myself and making sure I was getting what I needed. I always remember on airplane flight safety instructions they say “make sure to secure your own life jacket before assisting others”. Why do we as moms and dads totally forget that rule??! I started making my health a priority again three weeks ago and joined a great new gym. I feel stronger and more capable of being a cancer warrior mom. I even had to carry Jake from the car through the hospital last night, into the ER. We were in a hurry and I couldn’t find a wheelchair. He was so weak he almost laid on the floor when we got out of the car. So... On my back, he went! Thank God I’m strong enough again to do that.
4. Your child is going to feel like they might not be able to relate to their peers while going through treatment. And they might not want to see even their closest friends. They are going to get stared at constantly in public. Kids will look at their bald heads and feeding tube with a look of confusion and fear. Keep pulling them along and distract them. It’s nothing you can try and explain to any random child at Target, so don’t focus on it. Suggest play dates when they are feeling good, but don’t push. They barely remember what “good” feels like. Continue to encourage friends to stop by and invite them to things. And if they want to be alone, that’s ok too.
5. You are going to see things and do things that will break your heart over and over. You will have thought you knew what a bad day was before this. But you will have never seen days like you will see going forward. You will catch vomit in your bare hands, dry a million tears, reason and convince them over and over to let Drs poke and prod them in all areas of their body, squeeze their bloody nose that won’t stop, and sometimes hold their weak bodies in your arms. Unfortunately, your heart is going to break over and over. Don’t let it stay there because u might miss the good day coming tomorrow. Rejoice in all those days. Take a walk when it’s sunny. Stop and stare at a sunset. Don’t look too far into the future and take it one day at a time. Find the hidden blessings in people, nurses, relationships formed with other cancer families and strangers. It’s God showing up and it’s really pretty awesome.
6. You are going to screw up. You aren’t God. You will forget meds, you will lose a lot of sleep, you will forget to make dinner, you might even forget appointments. At some point you will argue with your partner, you might even snap at your kids on a day with little to no sleep, you might not be able to attend to all your other kid’s needs. Unfortunately, your job will suffer, and you might even lose some friends. The real ones and the right ones will always be there. And if you marry the right person and put God first, your marriage will survive. Your kids will all continue to love you and your job will be understanding if you work for a company that’s of moral and ethical decency.
7. Constantly give thanks and praise to the amazing people saving your child’s life. Thank them when they leave the room. Send them care treats along the way to let them know how much you appreciate them. The good ones especially, fall in love with your child and your family and treat them like you are one of their own. You will never be able to repay them enough, but don’t give up trying.
8. Find joy in the journey. Continue to “live”. Continue to “date” your spouse and see your friends. Try and send your child to school on days they feel good, and days where counts are “safe”. Accept invites to fun things that maybe you are only invited too because you are part of the “families with cancer club”. There are some amazing organizations out there that spoil the heck out of our kids going through hell. Let them!!
9. Don’t be afraid to fight with insurance companies to get the best care covered for your child. Even a middle-class family should not have to lose all their savings because their child is sick.
10. When people ask to help, let them. Let them pick up your other kids from activities. Let them bring you dinner. Let them buy you gas cards and shower you with cozy blankets and pillows. This journey is hard, lonely and unpredictable. Push your pride aside and let people help in any way they know how. It makes them feel good too.
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