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

Spring Break

Riley is really doing well. It's really amazing to be able to tickle her or try to make her laugh without worrying about her gagging and throwing up. I'm off work right now for spring break so we have been able to take a couple of fun outings...SF zoo and MB aquarium. We had a great time and you can see how great Riley looks!

Doctor visits, turning blue....just the usual

So Riley has had a few more doctor visits in last week. She saw her pediatrician on Friday and weighed in at 21 lbs 15 oz. This is almost a five pound weight gain from a month ago. I plotted it on her growth chart, and it looks crazy...an 11 month period that is totally flat, then a spike of 25% in such a short time. She also saw her Ped. GI doctor who was happy with her progress, and released her from his care and gave us some feeding advice. That's the good news.
The not-so-good news is she is back to having breath-holding spells. Her neurosurgeon predicted those would not stop, and said they were unrelated to the brain tumor. Great. She hadn't had any in three weeks following surgery, so I was optimistic...thinking they must be connected somehow. Nope, they're back. Something makes her upset, starts crying, gets worked up and cries harder, freezes on end-expiration, and does not take a breath for 15-20 seconds until she turns blue and starts to pass out. When she finally relaxes she wakes back up and gasps for breath. After having 3 on Monday we took her in for a check-up on Tuesday (she was originally scheduled to go on Thursday for a follow-up with the neurosurgery team). They said she was doing well as far as recovery from surgery, but referred her to another neurologist on the team who examined her on Wednesday and thought everything was okay. The question has been whether or not she is a having any kind of seizure activity during these episodes, which can sometimes accompany the breath holding spells. We were suspicious a couple times that they looked different, and it made us wonder, but the doctor felt like what we were describing was typical for breath holding spells and not seizure.

Run for Riley

I mentioned in an earlier post that while we were still at LPCH some student-athletes at Harker put on a "Run for Riley". When I got back to work I heard it was a pretty good event, but didn't get many details. I was just told that at the next school meeting they we tell us more about it. So Jenni and the girls were able to come with me to Monday's school-wide meeting. At the end of the meeting they ask everyone who had participated by running, or sponsoring a runner, to stand up. I stood so I could see across the gym, wanting to see how many people it was, or who all stood up. Well, I was totally shocked to see hundreds of people stand up, literally. I couldn't believe it, I had no idea the response would be so large...amazing. After a few nice words from the students that organized the event, they presented us with the money that was raised, as well as strings of 1,000 oragami cranes that students had folded. It was pretty overwhelming. The money that was raised is enough to pay Riley's medical bills...wow! The time and effort people had put in to give our family these gifts is truly a blessing to us. Plus, we got something else I've always wanted, a novelty size check, Happy Gilmore style! We can't give enough thanks to everyone from Harker who has been rooting for Riley. A special thank you to David and Arman who came up with the idea for the event, and got it organized (I hope I'm not missing anyone else). Thank you to everyone else who ran, sponsored a runner, created the 1,000 cranes, sent a card, donated, or simply shared their concern with me since getting back to work.