For Newly Diagnosed Cancer Moms

I’ve been asked a lot over the last 16 months for advice on what is helpful when someone’s child has been diagnosed with cancer. I’ve some up with a list of things that were helpful and just good to know for us in the beginning. These may not work for everyone but, I do know that just knowing something…ANYTHING in the beginning is helpful.
img_78311. Books-honestly I didn’t have the time or brain energy to sit and read a book…This is odd for me because I am a total bookworm but, my brain just couldn’t. I did do a little 5 minute devotional book my friend got me but any reading I did was kind of mindless reading like the Hunger Games or a fiction mystery. I think a short daily devotional like Gracelaced would be perfect. People brought us a ton of magazines and I never opened any of them. I did do the adult coloring books a lot. Stuff that doesn’t require a lot of brain power was good for me.

2. Amazon gift cards are good. Parents can get anything she needs delivered to the hospital or at home without having to go out in public. Cafeteria or gift shop gift cards are amazing. There’s also a Kroger, CVS, and Starbucks right up the road from Children’s in Dallas so those gift cards are great….if it’s a different hospital…find out what’s close and go from there.

3. Again, Children’s specific but…get a $20 weekly parking card. WAY cheaper than paying daily and you can share the card with visitors and family.

4. Emergent C is your new best friend.

5. For chemo diaper and skin rash, Phytoplex Z Guard diaper cream-it has an orange lid on Amazon…also Aquafor for mouth sores and dry/chapped skin.

6. Get a Vogmask online. They’re cloth and have a vent in them so their faces don’t sweat. You can clean them easily and they come in a small size with a strap to keep it on. We ordered two so we could always have a clean one.
img_03367. Stuffed animals are a no no because SO many hand touch them. So tell anyone wanting to visit or send things that blankets and stuffed animals just aren’t a good idea. Thanks but no thanks.

8. Get an extension cord because the outlets are in weird spots and get Glade plug ins for the hospital room to make it smell less like a hospital

9. The air on the oncology floor is double Hepa-filtered so Chapstick and lotion are your friend.

10. Pjs that either button up or zip up the front are great for chest port access.

11. Ask for a social worker ASAP and get set up with financial aid, any and all grants/scholarships/ aid you can apply for, and if needed he social worker can set up a room at Ronald McDonald House.

12. Get notebook to write everything down in. A binder is good too (BE BRAVE BINDER SHOUTOUT). I asked for an info sheet on every drug she got and I got a copy of her blood work numbers everyday. I also wrote important stuff on a calendar so I knew when she got her last dose of each chemo, X-rays, etc

13. If/when you go home-pack an ER bag and just keep it in the car with anything you need for a night in the ER/an unexpected admittance from the ER.

14. If/when the child starts to get restless legs, pain, or can’t sleep-ask for massage therapy!!

15. Quarters are good too because there’s vending machines and the detergent in the laundry room is 25 cents.

16. Accept help. And to think of practical things people can do to help-mow the yard, feed the dog, clean the house, bring dinner, give gift cards, etc.
I’m sure there’s a ton more but, these things were invaluable for me to know in the beginning.

8 Months…What’s next?

Another month has come and gone. Just like the 7 before it. More days without her sweet face to kiss. More nights without hearing her giraffe rattling around on the baby monitor. More times I look up thinking I’ll see those big brown eyes but, they aren’t there.

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This morning Jonathan said “It’s so hard to believe it’s been 8 months…yet I feel like I haven’t seen her in 8 years.” And he’s so right.

There are days when I truly wake up and have to remind myself she’s gone. But honestly, those days are getting farther apart. She isn’t fading but, our old life is. We are now once again used to the life of non-parents. We get up and go about our days without any of the “parenting stuff”. It sucks. I hate that that now feels normal. We babysat my friend’s precious 15 month old overnight Sunday and…it was hard. It almost felt awkward because I’m out of the mom habit. But…it’s our life right now.

Today, I started a new  bible study and was asked in the get to know you activity “What’s the hardest part about life right now?” and my answer was…everything. Everything is hard. Every single aspect of my life is so hard. Sleeping is hard. Being motivated is hard. Getting work done is hard. Marriage is hard. Family is hard. Friendships are hard. Being around people is hard. Being alone is hard. Writing is hard. Praying is hard. Life is…..just hard.

But it’s also good.

While I’d trade everything about my current life for Sophie to be here, healthy and whole…I can’t do that. This is the life I’ve been given and while it’s painfully hard, there is still good. There’s redemption in the fact that even in the hard, the Lord has opened so many doors and opportunities for us through Sophie’s story. Friendships have formed for us that I don’t think would have ever happened without cancer. Relationships have changed and deepened. Our marriage has grown, changed, torn a little, and been stitched back up by the Lord and His incredible grace over and over again.

The Lord has been just so good to us even in our suffering. I’ve written countless times about the way our community has poured into us and the way we’ve been loved on. He has deepened my desire to know Him and have a true relationship with Him daily. It’s been life changing in good ways too…which is hard to accept that good can come out of your 2 year old’s cancer and death.

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For a long time, thinking about “What’s next” wasn’t really an option. Again, 8 months isn’t a long time but, at the same time…sitting around doing nothing isn’t a healthy way to spend the next 50 plus years of our lives.

So many amazing things are happening right now and it’s bittersweet that she isn’t here for them and…without her cancer, they wouldn’t be happening.

Most everyone knows, or has at least figured out that I am not returning to teaching this year. My heart is not in it and I frankly don’t have the energy. I’m not sure if I’m done for now or done forever but, we’ll see what the next few years hold for me.

I have been enjoying the freedom that comes with running your own schedule. I am freelance writing and creating social media content for a marketing firm, helping a friend on his law firm’s blog, running my personal blog and Sophie’s Facebook page, continuing to submit content to Her View From Home, and I have a few speaking events coming up! All really exciting stuff!

Last week, I had the pleasure of speaking at our local Childhood Cancer Awareness kick off party…it was again, hard…but I’ll take any opportunity to talk about my baby.

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I have a second speaking event coming up next week for the hospital which I am EXTREMELY excited and nervous about. I am speaking at Children’s annual employee recognition banquet to basically most of the hospital staff! I will be sharing Sophie’s story and reading my Letter to Nurses…oh and then sitting with the CEO of Children’s Health!…No big deal right? They’re even sending hair and makeup TO MY ROOM!!! So yeah, excited about telling a room full of medical personnel about the impact their jobs have on families and how God is Bigger than suffering…it’s a big deal.

Finally, on October 4th I’ll be speaking at a Celebrating Women event that my sweet friend Ashley asked me to be apart of. I’m super excited about that!

Jonathan, also has some great doors opening to him. He’s getting more involved on the deacon board and in teaching freshmen boys bible study at church. He’s also decided to pursue fitness full time. Going back to anything ‘normal’ has felt wrong to both of us and he has always had this desire to help people. Fitness is his third love behind Jesus and me…at least I hope I come before fitness haha! He has decided to start his own online fitness coaching business and I’m really excited to see him be able to do what he loves while helping others achieve health and wellness.

There will never be a time when life isn’t hard. She will always be missing. There will always be a Sophie shaped hole in our lives. But I’m so thankful for videos and pictures and her special things to remind us on the days that she seems to be fading that she’s real. She happened. She changed our lives and made us parents. She was brave and perfect. And we will see her again.

One Day Closer.

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I tried to wean off of Zoloft and couldn’t….And that’s ok.

I had never really been aware of the world of anti-depressants. My life has been relatively uneventful-with the normal ups and downs that most of us go through. I knew people on medication for depression but never understood.

How can you be THAT sad that you can’t just be positive and make the best of your circumstances? How can someone be THAT unhappy ALL the time to need medication?

I didn’t get it.

I felt bad for people going through it.

Then my 2 year old was diagnosed with Stage 4 aggressive Lymphoblastic Lymphoma and my little uneventful world blew up.

For 6 months I was positive and focused on one thing-getting her through this. I could handle anything cancer threw at me if it meant I’d have my baby whole and healed eventually. Even when a massive relapse and chemo induced brain damage took her independence…I still had a purpose. Caregiver and advocate 24/7. I was willing to be a therapy mom for as long as it took, years if necessary…we just had to beat the cancer first.

Then we got stuck in limbo. At a rehab facility trying to get her strong enough to survive her only option, a stem cell transplant. But her cancer was so aggressive, waiting ran the risk of a second relapse and if that happened, we were done because her poor little body couldn’t handle more strong chemo. I was stuck in uncertainty with no plan. No end in sight. Nothing but my fragile baby fighting every single day.

It was then that I understood depression.

I was completely overwhelmed. I cried approximately 4 times a day. I was getting frustrated with my daughter who couldn’t help or control anything she was doing or what was happening to her. I was having to FORCE myself out of bed when I stayed at Ronald McDonald House. I felt crazy.

I realized that I was absolutely no help to my daughter or to anyone else if I was falling apart. This wasn’t about me. It was about her. So I called my doctor, made an appointment, and the next time I was at home a 24 hour break from the hospital, I went and got my Zoloft prescription. I’m sure it was a placebo effect but I felt better just knowing that I was taking control of my mental health.

And then, one month later, we found out she had relapsed again and her body was done. 13 days later, she was gone and I fully credit Jesus and my medication for getting me through that. I was able to spend those precious days clear headed and focused on her. I was able to wake up and even in my sorrow, be there for my baby.

Now, almost 8 moths later, I still credit the medication and the unending grace poured on my by the Lord for helping me get out of bed each morning and be productive on most days. But recently I was curious to see if I still needed it. Since I have never been on any type of antidepressant, I honestly just wanted to know when/if it was time to wean off. I’m not by any means against staying on it but, I figured if My body no longer needs it, then great.

So I consulted my nurse practitioner and she gave me a schedule to wean off of it but after the first week I was back in full blown depression and I couldn’t do it. The way I was feeling was the confirmation I needed that my body does in fact still need it. And that’s ok-I’ll stay on it as long as I need it.

I get it now.

If I only need it a few more months? That’s ok.

If I need it for a long time? That’s ok.

If I try to wean again and can’t again? That’s ok.

If I need it forever? That’s ok.

Whatever I need…is ok.

It’s time to get rid of the stigma that people who need medication for their mental health long term are broken, crazy, or less than. Because for me, the medication keeps me from being completely broken. It keeps my head above water.

I am one in 5.

And it’s ok.

#SophieTheBrave #DoMoreForSoph #Godisbigger #OneDayCloser #1in5 #mentalhealthawareness #Selfcare