Of our family has learned anything from childhood cancer, we have learned to celebrate!!!!

We celebrate clean scans, we celebrate holidays, and we celebrate birthdays!!

Happy birthday mommy!! May this year bring joy, health, and happiness.

September is Childhood Cancer Awareness Month. During this month, we will share many lessons that our family has learned from childhood cancer.


Our family is INCREDIBLY blessed. Patrick's Aunt Jenny is a special education administrator. So even at 2 1/2, we made sure that Aunt Jenny was VERY involved with Patrick's schooling.

When it comes time for your child to go back to the actual school it is more than likely they are going to need some type of accommodations.  They might need to take medications during the day, they might have restrictions, and they might need more intensive support.

Let’s start with the least of support that they might need.  Some important people to talk to…

1.     School Nurse – let them know EVERYTHING – sign release papers for them and let them know what the course of treatment is for your kiddo.  They can help with meds and feedings if necessary. 

2.     School Principal – they should know everything too.  My recommendation is to set up a meeting with the teacher, principal, nurse and anyone else necessary.  Let them know what’s going on and help them out with what is needed.

3.     Special Education Coordinator – okay, before we get too nervous let me explain to you what a friend these people can be (and not just because I was one).  They know the law, probably better than anyone else.  They can lead you in the right direction.

4.     Teacher – they of course are your first line of defense.  They know what’s going on in class and how to help out.

5.     Guidance Counselor – again, don’t get nervous about this – they can help out with talking to other kids, helping your little one out with concerns they have in school, and they are a great resource for you as well.

What most children with cancer are entitled to is what is called a 504 plan. The 504 Plan is a plan developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives accommodations that will ensure their academic success and access to the learning environment.

This plan is constantly reviewed and can be changed as needed. 

Here’s a great website to review what is offered under the 504 plan:

http://www.greatschools.org/special-education/legal-rights/868-section-504.gs

September is Childhood Cancer Awareness Month. During this month, we will share many lessons that our family has learned from childhood cancer.

Our family is INCREDIBLY blessed. Patrick's Aunt Jenny is a special education administrator. So even at 2 1/2, we made sure that Aunt Jenny was VERY involved with Patrick's schooling. 

Aunt Jenny here again to talk a little more about school.  This is going to be in 3 parts so consider this part 1.


When your child is in the hospital they are going to need to continue going to school.  The school district is required to provide education to your child while they are in the hospital.  Keep in mind, your little one might not be up to school work but it does keep some type of normalcy in their little world.


So what are they required to do?  It really depends on the state on when these rights kick in and how your school district is going to do this.  It is usually 10 school days before out of school help begins.  Talk to your child life specialists.  They are generally right on top of this.  They can contact the people in the hospital that help with education (pretty much every children’s hospital has an arrangement with an agency to do this).  


Where do you go to find out your rights???


State Department of Education


Local School District


Department of Special Education for your local district.


More to come tomorrow. . . . . 

September is Childhood Cancer Awareness Month. During this month, we will share many lessons that our family has learned from childhood cancer.

When Patrick was first diagnosed, I felt lost. I wasn't at the hospital. I was receiving information from my family, but I had to work. I wanted to save my time of fin case I needed to use it further into his treatment.

I'm not sure what made me email my friends Terry and Cynthia, but I did. Terry was my old boss when I lived down in South Carolina. They lost their beautiful son Henry to Brain Cancer in 2008. With all of the fear and unknown ahead of us, Terry and Cynthia were the first people to tell me the GOOD news. Patrick had a 100% resection on his tumor (that means they were 100% removed). They kept reminding me how good that was.

This couple has been two of Patrick's biggest cheerleaders throughout his treatment.

You are not the first parent to experience childhood cancer, and sadly you probably won't be the last. not every parent will want to re-live this experience with you, but if you need support these are the best people to reach out to. They have been in your shoes. They know where to find the good snack machines in the hospital and they know what questions to ask.

EVERYONE will have advice for you, but these people are the ones that will really have the good advice.

September is Childhood Cancer Awareness Month. During this month, we will share many lessons that our family has learned from childhood cancer.

When preparing for a donation of hats, I had a fabulous conversation with a Child LIfe Specialist. She mentioned how they are VERY clear with parents that children need to get out of bed and get dressed whenever they can. That they should still have a bed time, that children going through treatment still need rules. 

She stated "If you spoil a child going through chemo, then you just have a bratty kid then they are done" 

Of course, there will be LOTS of different rules when your child is going through chemo (If they can only keep chicken nuggets down, that's what they are going to eat.) But you should also have similar rules to what you had before your child got sick. If you never say no to your child that is going through treatment, imagine what it will be like to try and say no when they are done. . . Lets also not forget, there are other children at home. 

Try and keep life as normal as possible when you can. Get out of bed, set time for school work, have a bed time. When life can be normal, it should be. Because Cancer certainly gives you a new sense of that word. 

September is Childhood Cancer Awareness Month. During this month, we will share many lessons that our family has learned from childhood cancer.

The Dana Faber Cancer Institue posted this article today, so I wanted to share this lesson with you

Ways to Support a Family dealing with childhood cancer

September is Childhood Cancer Awareness Month. During this month, we will share many lessons that our family has learned from childhood cancer.

It will be hard for people to understand

If you are the parent dealing with cancer, don't get frustrated when people don't understand what you are going through.

I met one mom whose son never lost all of his hair. People actually asked her if her son was "really" sick.

Some people will offer you advice, they will tell you stories about other peopl that have been through this, they might even try and tell you stories about people that have it worse than you.

I would say to try and avoid these people, but some of them might really think they are helping, some of them might even be family.

Find a polite way to tell these people that their stories aren't overly helpful.

If they don't listen to polite, then you can cut them off.... Or let them clean up after yous child the next time he or she gets sick.

September is Childhood Cancer Awareness Month. During this month, we will share many lessons that our family has learned from childhood cancer.

People have told you for years that you can't take care of your family if you aren't taking care of yourself. That statement couldn't be more true now.

Eat Healthy: Being in the hospital will mean yo are eating hospital food. You might be tempted to eat the comfort food. you need healthy foods. You need to be eating meals (don't forget about breakfast)

Exercise: I know, in your spare time you are going to find time to exercise. . . but it is true. You really do need to find a way to exercise. It does Help.

Get Away from the hospital: I know that you want to be with your child all of the time, but you have to get away from the hospital. A friend of mine who recently spent months in the PICU with her infant child who was undergoing heart procedures wrote this article for Prevention Magazine . For her husband, he healed hiking through the nearby mountains. For her, she healed in the pool. . . . and at the mall. . .

You have to keep yourself healthy.

September is Childhood Cancer Awareness Month. During this month, we will share many lessons that our family has learned from childhood cancer.

Well, I guess someone posting a day late should take my own advice, and we don't even have a "cancer Kid" in the family anymore!!

But, guess what. . When you have a child that is ill, life goes on. That means that bills have to get paid, the other children need to be cared for, your laundry needs to be washed, and you have the added bonus of keeping track of new medications and doctors appointments. 

Get organized. . . Make lists. . . Keep a calendar. . . 

It's not easy folks, but you have to remain organized. If you are overwhelmed, ask someone to help you get organized. If someone can help you manage the basic daily tasks like bills and such, you should ask that person for help. 

You WILL be overwhelmed. You don't need the added stress of bill collectors calling to remind you that your payment is late, or your other child not having his lunch when he heads to school. 


If you are having trouble making ends meet due to your child's medical needs, talk to the social workers at your hospital. They might be able to help you connect with the right people about hardship deferments. 

September is Childhood Cancer Awareness Month. During this month, we will share many lessons that our family has learned from childhood cancer.

When dealing with childhood illness, you always need to be prepared to head into the hospital. A Child can be admitted to the hospital at any point in time.

Here are some things that we would recommend having ready packed in a bag ready to go:

• Spare phone charger (you will always need one)
• Power Strip (You will need to charge the phone and other devices and in a hospital room, outlets can be hard to find)
• Toothbrush and toothpaste
• List of child's current meds.
• Clean socks and underwear (yup, you might be staying overnight, it would be nice to know if you at LEAST had clean underwear)
• Snacks (things like granola bars won't spoil)
• A prepaid phone card (yup, frequently cell phones do not work in the hospital, and if you need to make a phone call you will need it. )
• A list of important phone numbers (you will forget your phone charger, or your phone will run out of battery, that means you do NOT have the important phone numbers that you need in an emergency.)
• A magazine (you might re-read the same on 20 times, but you'll be happy that you have it)
• Things to keep a child occupied (iPad, crayons, coloring book, MadLibs (FYI there were a HUGE hit with a friends teenager when she was going through treatment))
  
  
  Things you can request at the hospital:
  
  • Bedding (they should be able to provide you with a pillow and blanket. They won't be great, but they will be functional)
  • towels (yes, you need to shower. )
  • A quiet place to sleep (hospitals frequently have a parents room where you can rest. USE IT WHEN YOU CAN.