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.
(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
Oh my goodness. This is just so much for you all to have to deal with...and for a second time, no less. Please know that you all, but esp. Riley, will be in my prayers. Sending so much love & huge hugs to you. And please don't hesitate to reach out if you need ANYTHING. ❤ -Abbey (Mrs.LT)
ReplyDeleteSending hugs, love and so much prayer to you all.
ReplyDeleteWow! I will definitely be praying! I remember your journey when her brain tumor was discovered. Big hugs from way over here!
ReplyDeleteI’m so sorry she has to go through this, and I can’t imagine how hard it is for your entire family. Praying for joy in the journey for all of you.
ReplyDeleteYou've got this. Thankful that it has started as I know that anticipation can be the worst part. Hang in there - your family is awesome. Cry when you need to, party when you can. xoxo Laura
ReplyDeleteMy heart is heavy for you my friend. I'll be praying for wisdom for you and the healthcare team. May you see miracle upon miracle in the journey.
ReplyDeleteI’m thinking about you all. I pray everyday! My hearts hurts for Riley, Love you and just know I’ll a call away!
ReplyDeleteJenni, I just saw this! I am praying for your sweet Riley. May God give her a peace that passes understanding, and His comfort each day. May healing come in Jesus Name. My heart hurts for her, and for your mama’s heart. Praying God’s wisdom for all involved. Love you!
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