Childhood Cancer Awareness

September is Childhood Cancer Awareness Month

I've never been a fan of "cancer awareness"... it's always annoyed me.  In the past I've associated "awareness" with breast cancer awareness, and it's generally pissed me off.  Yeah, we are aware.  Now find a cure.

But that was before.  Before my child was diagnosed with cancer.  Before I realized how unaware I was about childhood cancer.

Here are some facts:

• Every year an estimated 250,000 new cases of cancer affect children under the age of 20.  That's almost 700 new kids affected EVERY DAY.

• Childhood cancer is the leading cause of death by disease in children under the age of 19 in the U.S.

• Every day, approximately 250 kids worldwide DIE from cancer.  That's 91,250 kids, every year, who lose their life to cancer.

• Childhood cancer is not just one disease.  It is made up of 12 major types and over 100 subtypes.

• 1 in 285 children in the U.S. will be diagnosed with cancer by the time they are 20 years old. 

• Childhood cancer occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.  It does not pick and chose.  It does not discriminate.  In the U.S. the incidence of cancer among teens and young adults is increasing at a greater rate than any other age group, except those over 65.

Despite these facts, childhood cancer research is vastly and consistently underfunded.

Even more infuriating, childhood cancer research receives just 4% of the annual budget of the National Cancer Institute. 

Here's the takeaway: childhood cancer is not rare, there still is no cure, and children die every single day because of a disease they did nothing to get.  The causes of most childhood cancers are still unknown.  Unlike most adult cancers, there is no strong link to lifestyle or environment to childhood cancer.

These statistics don't even touch on long term health effects of survivors, financial effects on families, and the psychosocial effects that threaten every aspect of a family's life.

My heart aches not just for my daughter, my other kids, my ex-husband... our family... but for all the families I see in the hallway on our unit.  All the mothers I see microwaving a cup of Easy Mac with hope-filled eyes that this time her child will eat something.  All the dads I see with blood shot eyes and blank stares trying to remain stoic in the elevator.

According to these statistics, we are not alone. But we also are very isolated.  We feel invisible.  We don't know how to talk to other parents anymore.  Some of us have lost faith and some of us found it. Some of us planned a Make a Wish trip and some of us planned a funeral.

We would ALL rather be the ones lying in our kid's hospital bed having the poison drip into us.

I hope this touched someone.  If it did, help spread awareness because we can and should do better.


Sources:

http://www.cancer.org/research/cancerfactsstatistics/cancerfactsfigures2014/ https://www.hhs.gov/about/budget/budget-in-brief/nih/index.html
The Lancet Oncology. 2013; 14 (3): e95-e103. https://www.cancer.gov/types/childhood-cancers/child-adolescent-cancers-fact-sheet Journal of American Medical Association: 2013; 309 (22): 2371-2381 

Relapse Setbacks

(Disclaimer:  Over on the left of the page, below the really old picture of me, and above the blog archive tab, you'll see a link called "abbreviations".... you may find that useful going forward.)

Shortly after transferring to UI and meeting her new team, we found out she did indeed relapse in both CNS and BM; and that BMT was our best chance at fighting the cancer this time.

We've been so busy actually dealing with the relapse, I haven't had time to update.  I don't know where to begin.

Reinduction (Block 1) was nothing short of hellacious.  She was hospitalized several times for nausea, dehydration, constipation, fever, infections, severe pain control.  However, at the end of Block 1 we found out that she was back into official remission.  Her CNS and BM were both cleared of the leukemia, thank God.

We are now on Block 2, day 13/22.  On Day 8 she was admitted for scheduled HD MTX that is a 36 hour infusion.  Day 10 she got more PEG.  We were all set to go home on Sunday Day 12, however there has been quite a setback.

First was the MRI findings of her knee.  She's had severe, ongoing pain that worsens after every steroid burst.  The MRI of her knee confirmed osteonecrosis, or avascular necrosis (AVN).  Finally, a source of the pain is identified which feels oddly comforting.  But this isn't what I wanted to hear.  She has to have more steroids (it's an integral part of her treatment), and the upcoming radiation therapy also can contribute to AVN.  The entire thing makes me very nervous.

Saturday night and early Sunday morning she developed Hand-Foot Skin Reaction (HFSR).  What this looks like is extremely red and swollen hands (it looks like she dipped her hands in boiling water), red and painful feet, and anywhere there was any rubbing, elastic, or adhesive she has red and painful blistering.  Additionally she has developed pretty severe mucositis.  She can't use her hands to do anything, she is unable to walk due to the pain in her feet, and her mouth is so sore she is using wall suction to clear secretions.

After a very long morning, the resident arrived, stood over Abigail's bedside with her arms crossed, chewing her gum.  She says, "Well you look a little better."  She is obviously blind.  She looked in her mouth, "Doesn't look too bad."  I lost it.  I lost all of my marbles all over the floor, and by the time I was done explaining to the resident I was NOT okay with oral pain medications, and that I wanted to see her DOCTOR this morning, the resident almost tripped over my marbles.

Doctor M showed up, finally... I could have hugged him.

He said we are done.  Done with this.  She is having a toxic chemo reaction and he said "no more."  We will finish Block 2 which has 2 more weeks of chemo; she will stay inpatient.  We won't do Block 3.  Instead we will do a modified "maintenance" Block that will be oral chemo (less toxic) that she can do at home, and IV Vincristine at UI every 3 weeks.  She will do this until she can start BMT conditioning.

We met with BMT nurse today and learned about conditioning.  There is cranial and whole body radiation, immunosuppressive drugs, and chemo that she will have to go through to get ready.  None of her siblings were close enough matches.  But there are several unrelated donors that we are waiting to hear from to see if they will agree to donate and to see when they are available to start the harvesting.  

I'm overwhelmed.  That's all for now.

(P.S. The wave tradition at Kinnick Stadium is truly awesome.  There is even a bead for the Beads of Courage program now specific to the wave!)