Rollarcoaster
Rewind to yesterday morning. Â Epic meltdowns of giant proportions. Â Ok that sounds a touch dramatic. For me, I had spent 4-5 day rationalising Aria’s PTLD. Â ‘It’s not really cancer, she is only on Chemo Lite. Â Finally it could not be rationlised any more and it all came crashing down. Â Two transplants and now cancer!? Seriously!?
Seeds of bitterness were being sewn in my heart and I allowed it. Â And at the same time it terrified me. Â Finally now am I losing my faith? Â Finally, will this be the thing that makes me turn my back on God and all I know to be true?
We have never blogged about life between transplant failure and Aria’s relisting. Â For a variety of reasons we haven’t and might not. Â But during that time I felt like a path way was opened up to me to walk down and turn my back on God. Â It looked very good and it made sense and no sense all at the same time.
Frustrated and grieving I headed into hospital yesterday. Â What was to happen there was even worse. Â After speaking to the staff about the frustrations that had set off my meltdown things started to become clearer.
Aria’s cancer is actually much worse that we first thought. Â Last night she started full blown regular chemo. Â The stuff that makes you sick and causes you to lose your hair. Â Her cancer is on her bone marrow and that causes organ failure. Â Her liver and kidney numbers were bad and her gut is dumping more again. Â Signs of organ failure? Â Maybe. Â Worse again home is way off. Â In fact if we did take Aria home and she was to get sick it is unlikely we would be able to get her to the hospital in time even though we live 20 mins away. Â Aria has ZERO bone marrow, NO ability to fight infection. Â NONE.
Bad news, very bad.
Suddenly though we felt better. Â What? Â How could this be? Â Well we had clarity now, as least we understood what we were up against and exactly what was going on.
The rest of the day I felt good. Â I went home but felt like God was a million miles away. Â I told my friend Steph via email and cried on the phone to Hamish. Â “He hasn’t left us has He?- where is He”
Asher was up most of the night and when I got to bed there were no words to pray and I opened my bible and closed it again. Â I couldn’t reach out to God yet He started to seem ‘there’. Â What was this peace? Â I prayed that God would not take it and then went to sleep.
The peace was still there in the morning and lasted while I battled Asher to take his antibiotics. Â That child is stubborn! Â We prayed and we got thru it.
Aria did really well during her chemo. Â They flooded her with fluid cause that is what you do. Â Everyone was worried, she was already fluid over loaded how would she cope. Â Thankfully she peed HEAPS! Â and her weight when down even.
Round was supposed to be full of hard questions.  How long does she have?  Etc etc.  Except they were positive.  People seemed almost pleased.  Her liver numbers and kidneys numbers are better!  Much better.  Her bone marrow is showing rumblings of improvement which is surprising after one dose of chemo.  We were told it would take weeks.  If things continue on Monday there will be a plan to *talk* about home! Wow!  AND her EBV count dropped again to 500,000, again surprising given we were pumping her with steroids.
Finally, everything we suffered and struggled with and everything we learnt about God between transplants has crystalised. Â We are standing on this rock! Â This rock of Jesus. Â It is amazing. Â Cancer isn’t the last straw. Â It is just part of the plan, the big huge plan we can’t see but have faith that it exists. Â Cause that is what God has told us.
Thank you to Corina and Rebecca who have sent me these verses and encouragement. Â This is SO true. Â I prayed that I would know this strength and I have! Â I so have!
Isaiah 40:28-31 (New International Version, ©2011)
28 Do you not know?
Have you not heard?
The LORD is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.
29 He gives strength to the weary
and increases the power of the weak.
30 Even youths grow tired and weary,
and young men stumble and fall;
31 but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.
33 Responses to “Rollarcoaster”
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# 20 Apr at 12:50 pm
PRAYING!!! It’s what I know to do. God truly is faithful. My heart and love go out to all of you.
In His mighty love,
Carolyn O’Cain
# 20 Apr at 1:23 pm
mmmm, salty coffee after reading your blog and then noticing I was crying into it… 5 years this year, since we tramatsied Irene with Aria and Isaac. Reading your blog really does just bring home once again how God can only give us what we can handle… I would have snapped had it been the other way around. Keep going strong in the peace that surpasses all understanding chicky.
Love and hugs to you and your family.
# 20 Apr at 2:03 pm
Praying also. Having had a child with childhood cancer (quite different of course) I can start to understand just a little. I so understand how God is there and how you stand on that rock. Lots of love and prayers for you all at this difficult time. Praying for healing and strength of body for Aria.
# 20 Apr at 2:10 pm
I read your blog, heartbroken for you, I recall feeling similar when our daughter was loosing her battle. I then read ‘The Word for Today’ and this was the verse – ‘…Gideon… crossed over, exhausted but still in pursuit.’Judges 8:4 NKJV May you feel and know God with you. Praying for you guys.
# 20 Apr at 2:14 pm
Thanks so much for all your honesty about how you are feeling Anita.
What a rollercoaster you Aria, Hamish and Asher are on!!!
You are doing amazingly well to be functioning at the level you are, in the face of the long, long journey of hope, fear, anguish, hope fear anguish, delight, hopes dashed again, new problems, still no clear pathway home to New Zealand. You are all amazing!!!!
You are entitled to a meltdown anytime you have to. Please take great care of yourself, hold onto each other, keep being honest and not always trying to have the situation seem positive when it is just a struggle and you are exhausted.
I hold you all in my heart, Lorraine
# 20 Apr at 2:22 pm
thinking of you always Anita
# 20 Apr at 2:25 pm
Hello there,
I remember how incredibly devastating our daughter’s cancer diagnosis was. I remember how it felt like this prison sentence and how we were dumped into the unknown. I remember waking up the first morning thinking “wow, what a horrible nightmare” just to realise it wasn’t a nightmare, it was our new journey…
One thing I found was that as soon as I started learning more about her treatment plan, the drugs and their effects, I felt way way way more in control and with that the road felt more manageable (not easy, never easy, but manageable).
I remember wondering why we were chosen – was it that we were strong enough to handle it or was it that we were not strong enough and needed to learn to trust God more. I will never know. And I forced myself not to think “what ifs” because I knew it would drive me mad if I let it take over.
I so wish your beautiful and incredibly brave little girl didn’t have to go through yet another challenge. I will keep you all in my thoughts and prayers. And on days where you feel you simply don’t have words and cannot connect with God, remember that God already know the desires of your heart. There are so many praying for you and with you. Remember to breath, put one foot in front of the other and take one day at a time.
Lea White
# 20 Apr at 3:06 pm
Anita, much love to you and Hamish as you keep walking just one step at a time in faith that God’s plan is much bigger than any of us. Much love as you keep encouraging and loving Aria as she faces this battle on step at a time. You are in my thoughts and prayers.
xxx
Sheryl
# 20 Apr at 3:28 pm
I can offer nothing but love and prayers and unfailing admiration of the strength, courage and faith that you demonstrate as an inspiration to all.
# 20 Apr at 4:06 pm
(I love what Lea wrote…)
I wish I could wrap up comfort, love, lightheartedness and peace and send it to you, and get you to put all your frustration, anger, sadness and anxiety in a box and send it back to me to take care of.
Thank you for sharing, you’re in my prayers every day. xxx
# 20 Apr at 4:17 pm
Oh Anita, what a rollercoaster it is for you. We think of you often and are always here for you.
# 20 Apr at 4:24 pm
Sending you our biggest love. Anita, I am PRAYING. Every day. God is here. I don’t understand or pretend to know His plan for you, but I do believe with all my heart that He has one. Hurting for you. May your peace remain. XXX
# 20 Apr at 5:06 pm
As with other comments, I don’t understand why, but I do believe that if we walk in our Father’s footsteps he asks us to do so for a reason. That reason is often just so hard to see. My love, warm fuzzies to the four of you and just trust and pray and live one day at a time.
# 20 Apr at 5:27 pm
Love
# 20 Apr at 5:31 pm
Wow what a rollercoaster Anita, thank you for being so honest and sharing with us all: yourself, Aria, Ashe, Hamish, your friends and the wonderful medical team you have with you from Jesus. Last night was prayer meeting here at Redeemer and all are praying for you. Praise God for wonderful news in the end amen. Thanks Lea for sharing your experiences as well, nice to know many of the intercessors have all experienced some kind of hard journey. Just as Paul says “we are comforted so that we can comfort others” amen.
Have a wonderful Easter time with Lord Jesus MacDonald family and friends “He died so we live, He lives so we die (self) amen.”
# 20 Apr at 5:38 pm
Anita & Hamish i am not going to pretend i know how your feeling… or fill you with pointless cliche’
I do want to just say this which i heard this past week
We know Storms aren’t from God because Jesus rebuked Storms and Jesus rebuked something that was sent from the father then they wouldnt really be the same or on the same page so to speak…
# 20 Apr at 5:41 pm
Go ARIA GOOOOO!!!! I pray that you all have strength in numbers and then some to get through this thing. He always knows what He is doing, even though we have no clue. Keep your trust and Faith in Him, Anita. You stay strong, so that Hamish can stay strong and so that Ashe will see that you two are doing awesome and he’ll feel better and things will just flow like they are supposed to. Much love and hugs and prayers are being sent your way. <3 😀
# 20 Apr at 5:51 pm
You are amazing Anita…(& Hamish) I have found this quote helpful..among others….
“When you have come to the edge Of all light that you know And are about to drop off into the darkness Of the unknown, Faith is knowing One of two things will happen: There will be something solid to stand on or You will be taught to flyâ€
I identify with your initial feelings of doubt and then that tremendous sense of peace…so contrasting but so real, both states of mind. Remember that those who pray for you are helping to carry the burden and will voice to God on your behalf, what you cannot always say yourself. When those feelings of doubt and aloneness overcame me, and later (in a similar time frame to you) the peace followed – I knew for sure that prayer worked! Because on my own that peace would NOT have been there. It was awesome. Not to say it all became easy, but it became a daily walk…moment by moment. as necessary. God will be your strength! Hang in there and feel loved by all who know of your situation and care enough to walk this journey with you all through your blog.
# 20 Apr at 6:45 pm
some verses that encouraged me (yet again) this morning and long they will also do that to you:
“And we know that in all things God works for the good of those who love HIm, who have been called according to His purpose” Rom 8:28
“Never will I leave you’ never will I forsake you.” So we say with confidence,”The Lord is my helper; I will not be afraid.”Heb.13:5-6
Blessed are those who walk in the light of Your presence, O Lord.” Ps 89:15
God is able to make all grace abound to you, so that in all things at all times, having all that you need, you will abound in every good work.” 2 Cor 9:8.
Upholding you constantly in before the throne of grace. Our love
# 20 Apr at 8:10 pm
I *love* that these verses ministered to you!
I have never commented before, but this weekend, those same verses, in a different translation seemed to me to be perfect for you, yet I didn’t send them then. I think you might appreciate that verse 31 in the King James translation reads, “But they that *WAIT* upon the LORD shall renew their strength.”
Blessings to all four of you! I will continue to pray for healing, wisdom, and peace for you.
A sister in Christ, in the great state of Louisiana!
# 20 Apr at 8:30 pm
Love and prayers and believing on his word.
# 20 Apr at 8:39 pm
Oh my poor darling! I don’t think you realise how much strength you really have, one day you will look back in amazement at yourself that even in the midst of despair you managed to survive it! It is only natural to doubt your strength and faith, this is how we find out if it is really there, as you have found out, it is. So much is out of your control and you wonder if these bumps will ever end. They will. When I was in the depths of despair I found writing the things I was grateful for helped me to feel less hopeless about our situation. Things as simple as hearing Lara giggle needed to be written down so I could see something positive in our lives. For feeling powerless “I have the power to control or direct my thoughts, I have the power to ask for help”. I don’t know if this helps but sometimes the strength you need to find is within yourself. Miss you so much!
# 20 Apr at 9:19 pm
I have never seen so many people write in………….one day at a time…..one step at a time…….and I can’t stress enough…….take good care of yourself, so that it flows onto others..go well……god bless.
# 20 Apr at 9:35 pm
Dear Anita, Hamish & Asher – our hearts ache for what you guys have been through. Praying and believing for a miracle for you guys …..
3} For I proclaim the name of the LORD: Ascribe greatness to our God. {4} He is the Rock, His work is perfect; For all His ways are justice, A God of truth and without injustice; Righteous and upright is He” (Deuteronomy 32:3-4 NKJV).
# 20 Apr at 9:52 pm
Hi guys – feeling the ache in your words today – but love that His peace has hovered, covered and invaded when you’ve least expected it, but deeply needed it. He is a mystery, and this Christian walk is a mystery – and there is NO set uniform way for us all to embark on – so when you’ve not PC with God, its okay – He doesn’t turn off in those times. Not sure if this is appropriate but I read a cool thing about Jesus, when finally on the cross, and he cries out “It is finished” . It was a real act of faith for Jesus to believe that God has more instore, and Jesus ha done his part to this point in time- the article said that actually it was the beginning for God – it was not a curtain call, but a start of an incredible opportunity for mankind. I know this is obvious to Christians but as I thought on it from multiple angles, I found this to be inspirational the other day – I am thinking about it as I go through Easter. Hope it encourages you in due course – we’re praying.
# 20 Apr at 10:50 pm
when i read your messages and all the comments going to you from so many people who love you and pray for you and cry for you and hope for you and hurt for you, i thank God we are all together in this as your family-you have a HUGE family and it’s like we are all holding hands around you day and night, a chain unbreakable, formidable against the enemy, entreating our Father bless you and bless you and bless you. thank you for being so brave in telling us how you feel-that way we know you are still human! it also makes us more recharged to do battle for you! God be with you as ever – love, jeannie
# 20 Apr at 11:10 pm
Thinking of you all and sending love from SA. x-x-x
# 20 Apr at 11:54 pm
You guys are in our hearts and thoughts! <3
# 21 Apr at 2:39 am
I, too, have been on a journey in the past 15 years that has made me question my faith, and I have stopped praying for myself and my needs. But your situation and pain makes me instinctively want to pray for you and your beautiful Aria. I do ask God, every day, to give you strength and hope and serenity, Anita and Hamish. Please, in turn, pray for me and my severely anorexic/bulimic and lonely daughter, Miriam. She refuses to allow food to get as far as her intestine, and is suffering from self-imposed starvation.
With love
Elizabeth
# 21 Apr at 11:54 am
Praying, praying praying! Never ceasing!
Love you all
# 21 Apr at 2:34 pm
Liz- we will pray for you and your daughter
# 21 Apr at 8:12 pm
Dear Hamish, Anita
Thank you for your honesty and for sharing your heartache. My heart goes out to you guys at the moment and pray that the Lord will sustain you and keep you. Bless you both, and Aria and Asher too xox (Romans 8: 26-27 …but the Spirit himself intercedes for us…)PS Happy Easter
# 21 Apr at 8:20 pm
It has taken me a while to respond, because I wasn’t quite sure what to say. I still don’t know what to say. All I know is that God is good, and He loves Aria & your entire family very dearly! I am praying for Aria like never before! May God heal Aria, & Bless your entire family!