When your child is diagnosed with Cancer…..

I receive many messages from parents or family members who have gotten that awful, unthinkable news….your child has cancer. I get asked many questions and I try to be as honest and open as I can. It’s a scary place to be especially when mom is supposed to “fix” all of your kids problems and you can’t. You feel like you can’t breath and that life will never be the same again. You are right….it won’t but trust me when I say you adapt to your new normal. It takes some time and those first few weeks and months are the hardest but you will get to the point that you can cope and make it no matter what is thrown at you. Why? Because your baby is depending on you to do so. This is just some advice for parents whose child has been diagnosed with cancer that I could give you at the beginning. I’m no expert but I guess the 14 months I’ve spent beside my sweet Addi helping her fight for her life, kind of gives me some insight and perception.

1. First and foremost just take one day at a time and try not to overthink because it is overwhelming in the beginning and you have a lot to learn. Life changed drastically with the word “cancer” and you just need to live in the moment right now. Just give yourself time to soak it all in, adjust and take one day at a time without trying to figure out tomorrow.
2. Ask questions and don’t be afraid to say you don’t understand or that you need more information. Get a notebook and write down questions that you think of when you are alone. Take notes of what your child’s doctors/team tells you or have someone there to take notes for you. Also keep a record of every procedure, every hospitalization, doctor appointment, blood transfusion, etc. Keep a list of doctors names and phone numbers. This will be your lifeline during this journey. I’ve referred to my notebook a million times and my team knows I’m informed and keep good notes so if they have a question about dates, they know I have them! 
3. Be an ADVOCATE for your child. You are your child’s advocate and you know your child best. Go with your gut and YOU make the decisions about your child’s care. You can say NO and you can ask for another opinion. You have the right to ask questions and be informed and I highly recommend you do so. When someone comes in to give your child medication, ask what it is. Know what your child is taking and ask the questions….what is this for? How often will she get this medication? What are the side effects? You know your child better than any doctor, nurse or health professional and if you don’t feel something is right, make it known. I believe Addi would be dead if I had not asked the questions and had not advocated for her. 
4. Your nurses will become very knowledgable about your child. Ask for a primary care team….this means your child will have the same nursing team each time they are admitted. Consistency and continuity of care is crucial for your child and she/he will begin to trust the nurses they see often. The ones your child trusts and bonds with….request on your team. If your hospital offers primary nurses, utilize this. The nurses are amazing and will make a world of difference in your child’s journey….treat them well!!!
5. Research your child’s cancer and know the facts. Know the treatment options and treatment plan and get informed. Being informed and educated is imperative. Remember….your friends and family are not doctors. Everyone wants to give you advice on how and what to do. Your child is on their own journey and will be different from all the others. Addi has not followed anything by the book! I follow very few cancer journeys of kids with the same cancer as Addi for a reason. I’ve learned about Addi’s disease and know it well. I highly suggest that you do NOT go and follow every child that has the same cancer as your child on social media. Trust me on this. You can’t handle it emotionally and every child is different so don’t determine what may or may not happen to your child based on everything that happened to another child. Knowing the future is not always best. Your journey will be different and learning as you go is really the best way. Again….trust me on this. It’s scary but it’s ok that you don’t know everything. Learn, ask questions and be educated but don’t panic. It’s going to be ok that you aren’t an expert and don’t know everything that may happen along the way. Join a cancer support group but again…..talk to your doctors and be on your own journey. 
6. Ask for a detailed plan of care for your child. Each cancer diagnosis has it’s own protocol and your team will have that detailed plan. Make sure you get that plan and the names of each chemo and then do your research. For a child with Neuroblastoma stage 4……It’s probably going to be be chemo, tumor resection, 2 stem cell transplants, radiation and immunotherapy, if you go by the COG protocol. Addi had complications so we left the COG protocol and are now at MSK in New York participating in a trial study specifically for Neuroblastoma. Addi’s oncologist in Atlanta is great and he was not afraid to say we need to refer her somewhere else due to her delicate situation and the inability to continue on their protocol. I am thankful for a doctor that cared enough to send her somewhere that could help her when he felt he couldn’t any longer…get you a doctor that cares that much!!
7. Talk to the social worker at the hospital about any financial assistance you may need to pay bills, insurance needs, etc. There are many organizations out there that can help. Your child may qualify for Medicaid or other government assisted programs. Social workers are a great resource to help you navigate during this process. 
8. Utilize the Ronald McDonald House close to your hospital to get some rest, take a shower and eat a meal…….when someone is there to sit with your child. It is the next best thing when you can’t be at home. Taking a step away from the hospital even for just a few hours makes a world of difference and can help you mentally get your thoughts together and recompose yourself. Take care of you too because if you are down, you can’t be there for your child.
9. Start a Facebook page or Caringbridge to update friends and family. Don’t try and update everyone. Ask everyone, even family to read your updates. You have to focus on your child and it’s too hard to try and personally contact everyone with updates. 
10. I know not everyone can quit their job to stay home with their child during treatment but it is important that there are 3-4 people (if you can’t be at the hospital) that know you’re child, her health history and is educated on what is going on that can stay at the hospital when you aren’t there. Don’t let someone stay with your child that doesn’t know specifics especially during treatment. 
11. Get a calendar – you will need it for doctors appointments, planned hospital visits and to keep track of when you give injections, medications, etc. Being organized with information is crucial. Keep a notebook with everything in one location with all of information.
12. Never leave home without all of your child’s doctors information/numbers and hospital contact numbers, list of medications, important documents and emergency kits. Keep an emergency box in the trunk with a change of clothes, towels, wipes, vomit bag, garbage bag (for stinky clothes) and anti-nausea medication. You will be glad you did this. A child on treatment is inclined to get sick at exactly the time you are not prepared. I purchased a clear plastic container and kept it sealed in my trunk so it was there when I needed it. 
13. Going home for the first time after your child has went through chemo is pretty scary. You now have a central line/port to take care of, medications to administer, shots to give, etc with an immune compromised child and an entire new way of life. Don’t panic! I was terrified when they came in to train me on everything we had to do at home but it is amazing how easy it came to us once we were home. Just watch the nurses closely when they are doing all of these things while in the hospital and RECORD the training on your cell phone so you have something to reference to when you get home. You’ve got this….it is not as hard as you think!
14. Take care of yourself and let others help you. People want to help and as hard as it was for us to take help from others, we could not do this without the support of so many. If someone offers to cook a meal, clean your house, give you a monetary donation…..let them. My pastor told me to allow people to help because when I say no I’m robbing them of their blessing because they want to bless us! It’s hard to let others help and do for you sometimes but during times like this, you will need all the help you can get. People ask all the time…..what do y’all need? That is so hard for me to answer because it is hard for me to accept and tell people what I am needing so if you are like me…..respond with…I don’t even know what I need right now so whatever you feel lead to do will be appreciated. 
15. We choose not to ever tell Addi she is sick. She knows she’s going to the hospital and she knows she doesn’t like it but I NEVER want her to have the mentality of being sick. We always tell her when we are going to the hospital that they are making her better so she can be big and strong. Of course this is a personal choice and depends on the age of the child.
16. We hate for Addi to spend a lot of time on an iPad but if you don’t have a tablet – get one. A kid with cancer can’t do much during treatment and doesn’t feel like doing much after treatment, so having a tablet with movies, music and games can keep them distracted and help with the boredom when laying in a bed for days at a time. We have numerous educational games on the iPad and she loves to play those and it’s helped keep her brain stimulated and she’s constantly learning.
17. Be prepared – Keep a suitcase packed for you and your child and ready to go to the hospital at any time. Pack for at least 5 days. This is imperative! When your child comes home from the hospital after chemo treatment, they will more than likely start running a fever in about 5-7 days and will be heading back to the hospital. Pack toys, pajamas, clothes and hygiene items. You will be glad you did this. It’s saved me many times in emergency situations especially since we live 2 hours from the hospital. Also being married to an Eagle Scout, I have learned to ALWAYS be prepared!
18. Just try and be as NORMAL as possible when you are home. Yeah, I know….what is normal about having a child with cancer?? We now have a new routine…..we don’t get up and go to work or daycare anymore but we started a new home routine so that she can experience as much consistency and normalcy on a daily basis as possible. Learning is huge for us so everyday has some learning time in it and we try to get her outside for fresh air when possible. If she has friends she is missing…..have FaceTime dates. We have kept Addi in a bubble for 13 months and just now started letting her around other kids but several times a week we would FaceTime with some of her favorite friends. It helped her stay connected and was something she looks forward to. FIND your normal as much as you can.
19. You will get hundreds of people giving you advice and telling you what you need to try to cure your child of cancer. As far as I know there is not a cure for cancer. I have been contacted about water, juice, asparagus, oils, transfer factors, marijuana, and everything in between. Yes, eat as healthy as you can and try some of these for symptom purposes but do your research and consult your doctor! 
20. If you find yourself getting depressed or not coping well, do not hesitate to reach out for support from people you trust and can be honest with about your feelings, fears and struggles. You have to talk about it and release the emotions you’ve been holding in. Hold on to your faith and seek counsel if needed. Don’t hold it all in…talk to someone, cry, be angry but then turn it over to God and find JOY! It’s a long journey and it’s hard but our kids are worth it. It becomes easier as you learn to cope with this new life. It will become your new normal and you WILL adjust. You will learn how strong you are but even more, you will learn how strong your child is and what they can overcome. Choose JOY and find it daily. Take the pictures, go on the trips, take the walks, eat the ice cream, play with the dolls and make every single second, every single memory……matter. 
21. Be positive and NEVER EVER GIVE UP!!! As hard as it can be, you must stay positive, know there is HOPE and just have faith in the journey that you are on with your child. It’s not a doom and gloom feeling all the time. At first it feels that way and the devastation is real but there is joy, fun and blessings even in the midst of a cancer diagnosis. You will find the peace and you will see how blessed you are in the middle of the most difficult time of your life. You will be more thankful for the smallest things and appreciate life like never before. It’s going to be ok even on the days it’s not ok because truly this is out of our control and we just have to do all we can then trust God with the rest. It’s ok to cry but after you’ve cried…..pick yourself up, shake it off and go FIGHT! This is a war and you are here to fight for your child’s life. Not a time to be weak and feel sorry for yourself. Be strong, be courageous and always, always have HOPE!!

You can do what you never thought possible when it comes to caring for your child. You are now mom, nurse, advocate and your child’s support system. It’s not going to be easy to see your child in pain and sick but mama this is the time to put on your battle clothes, keep it together, be strong and fight for your child. He/she can’t get better if mom is falling apart. You’ve got this and you WILL get through it. It won’t be easy but it’s more than worth it because our babies are worth more than anything we have to go through to get them better. I hope some of the things we have learned during our first 14 months on this journey helps you. If you have any questions please feel free to reach out to me at addisjourney1@gmail.com

Much love – LaLa

Helpful things people did for us that you may want to do at some point:

-Meal Train – people sign up to bring meals after you are home:
https://www.mealtrain.com/start/

-Start a GoFundMe or have a friend do it and share.
https://www.gofundme.com/

-Design your child a t-shirt so others can support you. I highly recommend you use Bonfire. You don’t have to purchase shirts up front. They do everything, including taking payment and shipping.
www.bonfire.com

I have transferred everything from my calendar into one spreadsheet that I keep with me all the time.

Being organized will make life easier with all you have on you. I bought this shelf and containers and keep all of Addi’s medicine and supplies organized in one place for easy access.

I keep a calendar in my purse and write down everything. I have my phone too but I keep this in the kitchen when I am at home so anyone can see when she needs meds and when she has an appointment.

This is great to have and we keep it on our refrigerator. I took a screenshot and it is on my phone as well.