Week 2/3

Emotions have still been up and down. We have good days and bad days. Riley tends to feel pretty good during the day, but the evenings are harder. She was having some bleeding and stomach pain which was concerning us. Her labs came back fine and the bleeding stopped last Wednesday so that is good news. She has been dealing with super dry skin, rashes, and acne. She was having some scalp pain which has now broken out into a rash. She has redness and bumps covering her scalp. Her hands also got pretty red, but that flare up calmed down a bit. She describes her skin as feeling very sensitive and we have had to fiddle around with finding skin products that don’t burn and irritate her skin. So far, Cetaphil has been the best. Her doctors prescribed an antibiotic acne cream to hopefully help with some of the breakouts.
More than anything else, she misses her friends. She just wants to hug them! We are all feeling sad about having to social distance. We miss our community.

Week 1

Chemo sucks. It doesn’t matter how it’s delivered - oral, IV, low dose, high dose, daily, weekly...it just all sucks. It has such a huge mental and emotional component that is delivered right along with the medication. It changes you. It causes rashes, hair loss, GI issues, fatigue, nausea, weight gain/loss and the person taking it notices and feels everything. It is so hard to watch your child cry and mourn the loss of things. Add on a global pandemic and some days just seem unbearable.
But, every day is a new day. It’s a chance to hope that today will be better than yesterday. A new day to set your mind on the positive. Here are some positives from this week:

• Quality time with family
• Warm weather which gave us time in the pool and a daddy daughter evening trip to the beach
• Planting beautiful flowers around the property
• A date to Lowe’s and In and Out for shakes
• Mama bunny Eleanor giving birth to 8 bunnies
• Playing Yahtzee
• Eating good food
• Marco Polo with family
• Accidental new nicknames for my parents that the girls thought were hilarious 
• A drive by birthday parade for one of Riley’s best friends
• Hilarious baby chicks with fluffy feet
• A beautiful complete chicken coop and run
• Snuggling in bed binge watching TV shows

It’s easy to look over the good when things are hard. My friend Christi always makes lists to remind her of the good, to give her perspective, and to be grateful. Thank you, Christi, for inspiring me to make a list this week.

“Life with God is not immunity from difficulties, but peace in difficulties.” CS Lewis
I will continue to trust in Jesus for peace.

Side effects so far are stomach pain, nausea, and diarrhea. Riley needs lots of snuggles which we don’t mind at all.

Day 1

Riley’s chemo drug arrived today and when I unpacked the big box and saw the bag I almost burst into tears. 

She was instructed to take it in the evenings before bed so I felt like we were on a countdown to 8:30pm. Ry was nervous and sad when the time came and it took her a few minutes through some tears to take her 3 pills. But she did it. She is incredibly brave and we are so proud of her. It is tough to not know how her body will react, but we are thankful and hopeful this drug will work its magic and shrink and/or stabilize her tumor. 

FYI that is about $350 dollars in medication that I am holding. Thank you Jesus for insurance. 

Testing at LPCH

Riley’s neuro-oncologists, Dr. Partap and Dr. Mochizuki 

Chemotherapy

Small changes over time of Riley's tumor have led us to the beginning of chemotherapy.

Medication: Trametinib (Mekinist)

Oral drug taken once daily for 2 years.

Monitoring: Monthly labs; MRI every 3 months.

Side Effects (most common seen by the neuro-oncology team):  skin rashes, skin/nail infection, lightening of hair, diarrhea

We head to Stanford tomorrow morning to have an ECHO, labs, and then meet with the neuro-oncology team to begin treatment. I am hoping to revive this blog to be my journal of this chemotherapy chapter. As Riley has gone through this journey, I have been so thankful to have had our/her experience documented.

The last week has been emotional for Riley. We gave her the biggest voice in all of our appointments and she said she was ready and wanted to start treatment. I think at first, chemo felt so scary and emotional. Then it felt good to finally have made a decision to do something rather than the watch and wait pattern we have been in for over a year. But then the anxiety kicked in and Ry has repeatedly said she does not want to do this. Though she knows this is the right decision, her heart and mind disagree.

So, here we are at the beginning. Day 0 of approximately 730.

Dominic Balli - Daisy's Song

(click link above to listen)

When that storm comes like a hurricane

And the sun seems far away

We will not fear the wind

We will not fear the waves

I can feel your calm within

When this life is shaken by raging seas

We are not gonna be afraid

So if you walk on waves and wind

Then hold my hand and i'll walk again

This love is stronger than the blood that beats my heart

This love is deeper than the pain of all these scars

This love goes farther than the hope in answer's arms

This love is stronger

It's strong enough for me

You lived our sorrows befriended all our pain

All that we might rise again

You stole my sickness rested in my disease

All that i might rest in thee

And you alone bring healing and for you i'll wait

But we are not gonna be afraid

So if you walk on waves and wind

Then hold my hand and i'll walk again

We may be crushed but we are not ever forsaken

We may be struck down but we are not ever destroyed

Then when that fire comes to shine through me your glory

We are not gonna be afraid

Source: Musixmatch

Previous MRI and neurosurgery check ups