Biggest Need

MONEY

It's not glamorous. It's not pretty. It's not fun. It's not creative. It's not ingenious. It's not smart. It's not comical.

It is endearing. It is powerful. It is helpful. It is necessary. It is provision. It is humbling. It is impactful. It is peace-providing.

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Thursday, January 18, 2018

Not Feeling Heard

I posted the following in a Facebook group I'm in that is for holistic cancer parents.
Okay... I don't think Dempsey can handle steroids anymore. This round he's ended up with "itching" between his fingers (neurological), there are no physical/ outward indications. He seems more bipolar-ish with his emotions. I can't tell how much of that is steroids vs being a 6 yr old boy! He is starting to say more and more unkind things and that IS NOT who he is!
I am not on great terms with his primary ONC. I want to reach out to an NP I like and who I've talked to before.
I am worn out like your favorite pair of sweat pants... where the waist cord is gone so you roll them... where the thigh part is thin because you've never had a gap there... where there are stains feom cooking woes, baby woes, PMS woes... you catch my drift?
I don't think I (or my family) can handle the steroids anymore! WHAT DO I DO?

The responses I got are varied. Most are comforting and helpful. Some, despite being holistic-minded are still quick to defend allopathic ways.

I added this to that thread just now...
Just got off the phone with an NP I like. Anyone else feel like they jUST DON'T HEAR YOU?? Explaining to them that my son's personality is different and it's affecting his quality of life and I get the response "well, steroid psychosis is a known side effect... and the steroids are such an important part of treatment for the cancer he has..." Seriously? I'm shaking, the adrenaline is too much. I feel like they don't care that my son is changing!! They just care about their studies and protocol... none of which I've actually seen, let alone read.
I can see why people up and leave the country and go into hiding!
I was also told that the itchiness is more a side effect of vincristine than the steroids... um, we've NEVER had a problem with vincristine (21 months in now) but the steroids are an issue AND itchiness IS A LISTED SIDE EFFECT OF PREDNISONE!!!!!!!

I truly feel like the medical "professionals", who have legal access to my child, don't listen to me. They don't have to live my child 24/7 and feel the effects of their precious protocol treatment. I just can't. This is all too much and my son is suffering in the name of "health". It makes NO SENSE. None. When we know there are natural ways to deal with this.

Y'all need to pray for me because I can't pray. I feel like I've used all the words and felt all the feels possible and I'm nowhere. I don't even know what to pray for anymore because my words have run out.

Prayer requests:
pray against negative side effects
pray for miraculous healing
pray that the dr loses her mind and allows us to cease steroid use and end his treatment early
pray for medical eyes to be opened
pray for doctors to start seeing patients as PEOPLE instead of numbers and statistics
pray against the itchy sensations Dempsey has
pray away steroid psychosis
pray protection over every part and element of Dempsey (organs, emotions, mentality, psersonality, spiritual, etc)
pray for doors and options to open miraculously
pray for stregnth
pray for peace
pray for faith
pray for endurance
pray that we will have more supporters re/join us on this journey
pray as you feel led

Monday, January 15, 2018

God, You Are A Good God

Lord,

For the last few weeks you've really only heard me yelling. I want to apologize but you already know my heart. You know that I struggle every day in the war between my flesh and my spirit. You know that I'm physically worn out because I'm emotionally and mentally worn out... which means I'm spiritually worn out as well.

This cancer journey (and other areas of life) has me leveled. I know people see me and they see strength and wisdom and a mama bear attitude. I am thankful that I can portray those qualities but I'm really just me. Really just clammoring at anything that might help me help my boy lick this beast. I'm cramming my head so full of information chaos seems so insignificant a description.

But...

You have provided me with two clients. You have added another marathoner to our monthly support. You have given me an opportunity to work with people I have missed, people I love, my family once again - even if it's temporary. You have guided me to a church that I pray will help me heal and grow in the ways you need me to. You sent sweet words to my heart from a dear friend, who I respect deeply. You are moving in my loved ones in ways give me hope. You have provided a holistic mentor/ teacher who has even reached out to my son to connect and bring encouragement from new places. You have shown me how important simplicity is - doing things the "old fashioned way". You have reminded me how important face to face connection is and how much sweeter the relationship is with people I can go deep with, be messy with. You have pruned my friend tree and although there is pain there is also healing happening. You are allowing the seasons of my life to change and I am trying to be teachable. I am trying to force gratitude to break my selfishness into submission. I am trying to bench press positivity because anxiety has brought me low. I'm trying to exercise my voice because I feel fear has made me mute. I am trying to kick down doors within myself so the real me can feng shui energy right out of my very pores.

Help me, Lord. Help me.

I know Dempsey is thriving but every day I worry. You tell me 365 times to worry but 365 x 365 times I worry still. I know you love him more than I do but my heart is afraid of what it imagines. I am so weak. So very weak. Humanity is so frail and so many take it for granted as though they are Superman but even impervious to kryptonite. Praise be to you that they have not glimpsed or felt the fragility of human health.

I fight so hard, Lord. As hard as I can. I fight with my own strength. Forgive me. It's what I know. It's what my limited mind can comprehend. But I am broken. Leaking life day by day.

Help me, Lord. Help me.

Whisper to my heart. Hold me steady so I can't run away to control things in my own way and in my own time. Hold me until I break so that I can finally hear your words and see your path before me. Linger with me so I don't doubt. Break my walls so I can feel... even if it hurts. I spend so much effort holding back the feelings... mainly because I'm tired of feeling.

Amen