Photo Gallery and Thoughts on Advocacy Training

Advocates from each state have gathered in a Marriott hotel ballroom, with the Alliance, to learn how to best share personal stories, answer difficult questions and share key points of the bill we hope to get passed – H.R. 820 STAR Act which can be viewed in detail at http://www.congress.gov

 

 

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Good Morning from Washington DC

You know when you plan so much in your mind to get a good night’s sleep that you actually don’t, or is that just me? Anyway the peace and quiet and room service chocolate cake was amazing.

Very shortly, I will be headed over to the hotel where training classes and advocate’s lunch will take place. I hope to see some familiar faces from CureFest last September.

A very special thank you to Jeff, my mom and stepdad for collectively doing my job while I am away. Also I very much appreciate the encouraging comments via text, email and twitter. I will continue to post thoughts and maybe even a few pictures.

Thank you for prayers and support.

It is the LORD who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed. Deuteronomy 31:8

 

 

 

GraceSteps is Going to the Hill

52129F0B-14BF-4671-AAC7-AD6EFA1795CDI have packed the essentials, and will be on the road in just a few hours.

The American Alliance for Childhood Cancer has scheduled four meetings for me on Tuesday – two senators and two representatives.

Tomorrow I will attend training classes.

Tonight I will get to eat what I want to eat, watch on TV what I want to watch and sleep in a bed with no kids or pets. It’s a dream come true. I may sleep sideways.

I anticipate several new and exciting experiences in the next few days. Yesterday, I decided to kick it all off with something else new to me – a gel manicure. She took one look at my hands and said, “you don’t get your nails done often, do you?”

No. No, I don’t.

Come along with me, friends…

Cancer Mom Confessions

974A5B07-20F4-42D8-B855-AB423AE6C89CLittle League baseball games are more boring than watching grass grow. But, of course, I go and support Michael.

Much worse than boredom, was telling Justin he couldn’t play this year.

Justin will need to have both legs casted for up to six weeks due to extreme heel cord tightening and recently developed deformities. His feet have unnaturally turned outward, causing more pain and discomfort when walking.

We could say no to this. But, for a kid who’s loves to play sports, it’s the best option. There’s a chance it may not work, but I am not too afraid of failure. It happens and you can’t always control it. But I wouldn’t be able to tolerate looking back and knowing we didn’t try everything to give Justin a chance to play baseball again.

This is hard for me. Not gonna lie. This is another punch in the guts. Because I KNOW that in the big picture, Little League baseball doesn’t mean much, but to my seven-year-old little boy, it DOES. What can I do except turn to the power of Truth, and do my best to stay grounded there while torrid seas continue trying to take me away.

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. 2 Corinthians 4:16-18

 

 

Day 818

46CD6308-0326-4D44-908E-5547891D8761Justin is experiencing a myriad of chemotherapy side effects this week including foot pain, fatigue, nausea and interrupted sleep. Today it was anti-nausea meds, Tylenol, a heating pad and a movie at 3am.

I have that pesky pain in my chest again, but I think it’s probably too much caffeine.

Thank you for supportive commments regarding my upcoming visit to Capitol Hill. I’m certainly no lobbyist and consider myself a better writer than speaker on any day. I’ve been told I have a heavy Jersey accent and say “um” way too many times.

I’m just a mom. But I live with the daily harsh realities of pediatric cancer every minute of my life. I have been there for every needle, every surgery, every bucket of vomit, every blood transfusion, every session of physical therapy, every spinal tap, every chemotherapy infusion, every pain, every scream, every tear, every sleepless night, every fear, every disappointment. I’ve been hit, kicked and yelled at. I’ve been vomited on, spit on, urinated on. I’ve changed diapers on a five-year-old who couldn’t stand. I’ve been Justin’s nurse, psychiatrist, educator, therapist.

This is being a cancer mom. And there are times you think about getting in your car, driving away and never coming back. But you don’t. Because most of all, as a cancer parent, you are leaned on, depended on, relied on. These are only babies for crying out loud.

I’m still not sure exactly what to say to the Congressmen and women, but I know God will give me the right words. Grace be with you my friends.

2D27643F-7DA2-480A-A550-785BA4F6D3B4

GraceSteps is Going to the Hill…

04BEE673-DBBA-4E90-8B2F-A881D411B45F…and inviting you to come along. 

Yesterday a friend drove Justin and I home, with a barf bag in tow, midway through our church service. This still happens two years into his treatment.

This week, I’ll be preparing to share our story with congressman and help to put faces on the number one disease that takes children’s lives in America. Awesome kids like my friend, Damon Billeck, who went to heaven earlier this month. He lost his arm first, then his life to osteosarcoma.

And my own kid continues to survive, but suffers current side effects and who knows what long-term side effects. Kids need more treatments and better drugs. They need a voice. One week from today, Congress will hear mine.

Please pray for wisdom and clarity. As my principal reminded me, “the heart of the king is in the hand of the Lord.”

2040C0C2-EEA9-46A9-A307-AFFE41A44A49

Day 812

4CDF21C0-205B-432E-A7DF-9DDD5681007DThat is a forced smile for Mom because Justin hates wearing his leg stretching braces. But I am grateful to have them as his lower legs and feet are again showing signs of neuropathy, heel cord tightness and weakness. Justin will resume physical therapy starting next week.

I was awarded a scholarship by the American Alliance for Childhood Cancer, which basically means they pay for me to spend a few days in D.C. later this month. I will attend training classes on how to effectively share our story, as well as how to specifically advocate for a bill called the STAR Act (Survivorship, Treatment, Advocacy, Research) to be sponsored and passed. This would ensure that more research dollars are allocated, by the National Cancer Institute, toward better chemotherapy drugs and more treatment options for pediatric cancer patients. (Currently 96% of the total budget goes to adult cancers and only 4% to childhood cancer research.) Myself and other advocates, from around the country, will then go to Capitol Hill, where meetings with congressman have been arranged.

Okay, that was all very boring to read I’m sure. But it’s pretty important to me to be able to DO something, and to share this opportunity God has given me. It all feels a little daunting, but I do like a good challenge. More on this to come.

Thank you for continued support and prayer. God is faithful.

Remember your word to your servant,
in which you have made me hope.
This is my comfort in my affliction,
that your promise gives me life. Psalm 119:49-50 

 

 

Good News, Bad News and Thank Yous

853856A0-BC0D-4A24-B4EE-2848CA282687Bad news: Justin’s white blood cell count is higher than its ever been at 5,100. This is far from ideal for a leukemia patient, but his oncology team is hesitant to increase his chemotherapy dosages because his liver screening is still abnormal.

D208411D-FE8A-4B83-9C30-A87CDB9951F5I am choosing to stay positive and trust God. Justin’s IV placement and physical exam went smoothly today. He is tired, but feeling relatively well.

Good news: We have entered our third year of chemotherapy. If everything goes according to plan, we now have an end of treatment date in sight. March 25, 2019.

Some very special mentions:

6F70E4EF-ABE6-4AA9-AAB7-67FA3687CFB0Thank you to the Covelli family for allowing Luke to accompany Justin to clinic every month.  Luke is a kind and patient friend, and it really helps Justin to have his best pal along.

Thank you to Matt and Anne Purzycki for providing dinner to us every week. One less night I have to cook! Their son is a leukemia survivor who is now in his 30’s and healthy. Anne “gets” the cancer mom thing and always brings an encouraging word with her yummy food.

Thank you to my mom and stepdad for also faithfully helping me with the cooking as well as watching the boys so I can get a break here and there.

EEF56F03-2513-4304-934E-4CBACC2DF856Thank you to Don Netz and Gloucester County Christian School for hosting a leukemia and lymphoma fundraiser as well as an upcoming blood drive. Please consider donating to either or both. Every dollar donated for research matters, and blood transfusions are a regular part of the cancer patient’s life.

Thank you ALL for continued support, prayer and encouraging comments. It helps more than you know. God is faithful.

 

 

Day 805

16D71044-A096-4B8A-8EA5-59F3F527A62AHere we go again. Another cycle of chemotherapy. At least it doesn’t smell like dog here at the clinic and the bathrooms are really clean. More later…

 

Day 797

Lately I’ve been thinking a lot about unplugging the boys’ Xbox, placing it in our driveway and backing over it with the mini-van. The fighting gets to me.

64E7696C-C765-48B8-B3D3-D86F7D1E82F7Justin seems to be holding up well, notwithstanding this month’s abnormal test results. He hasn’t taken up hockey, just lost a whole bunch of teeth in, like, two days. I have been watching him carefully for signs and symptoms of liver distress and/or low blood counts.

5DC158BC-5B98-4A0D-BF4D-7BF1C15B8CD6Nicky and Michael have revved up their “it’s not fair” campaign, citing Justin getting more TV time, etc. It never fails to amuse and annoy me that kids insist on demanding justice for everyone except themselves.

Buddy, the dog who we tolerate for his therapeutic qualities and love of our children, is still thriving despite his affinity for eating socks. I’m talking about whole, entire socks swallowed and regurgitated on our living room floor. And it really doesn’t seem to matter that I constantly pick up and keep a baby gate securely barring the stairs to our second level crime zone of laundry piles. He still finds them.

565AD829-A4D5-477E-83B6-569EF684D9C9Michael painted this mug for “your favorite drink, mom.” Yes, in fact, I’ll take a refill now. Thank you for continued support and prayer. God is faithful.