This morning,the little miss and I battled the nasty freeways and headed to CHLA for a clinic visit.The weather here in Southern California has been down right strange.In the last 24 hours we have seen:torrential down pours,high winds,clearing skies with a rainbow to follow,then an unexpected and rarely seen, hail storm.At the moment no rain,a sun peeking ever so slightly from behind a cloud covering but reports of more rain to follow.Unpredictable.Kinda like this journey we are currently on.This morning we headed in for counts.The usual process.Arrive an hour early, only to wait around for a couple of ungodly hours.See the doctor for like 3 minutes and before you know it the day is more than half over.Nothing too earth shattering in Zoey's blood counts.Just what I expected.Her ANC and white are too low to begin Round 4.Everything else is stellar.Red count is 4.33.Hemoglobin is 13.2.Doubt if mine is even that high.And her platelets are 282,000.Down side:white 1.73 and ANC 190.We have to be at an ANC of at least 750 to begin the next round.I was slightly disappointed.I knew we were going to be short of the 750 because history has told us that Zoey needs at least 2 weeks before her marrow has completely recovered to go forward to the next round.But we are already at week one and we aren't even a quarter of the way there.The thing is though,with each round, Zoey's marrow gets nailed so,so hard that it takes her body just that much longer to recover as time goes on.So we wait.At home.Which really,truly is a gift.As much as I want to get these last two rounds done and over with so we can get on to living,I simultaneously cherish the time at home.We head back next Monday and if her numbers are up, we will be readmitted and Round 4 will begin.Last round it was 3 weeks before we started up again and I won't be surprised if this time is the same.They tend to send Zoey home,not so much by what what her ANC is but by the increase in monocytes,which are immunity helpers.So the lower the ANC when we go home the longer it takes it to climb.Would much rather be waiting at home for numbers to climb rather than in the hospital.As long as she remains fever free ... knock on wood .... we stay home.We will just see what next week holds.Yesterday was baby Luke's memorial service.The day held that stark contradiction of beauty intertwined with such immense sadness.How privileged I feel to have been part of this little mans all too short journey.How very in awe I was as I sat and listened to John and Laura as they spoke of the void that exists in their life without Luke but what extreme gratitude that dwells along side their grief, for having had this amazing boy for only a mere 16 months.I had a measure of anger as well, as I once again feel that a family has been unfairly jipped out of a lifetime of memories with their precious child.The anger component is something I think I will struggle with the most as I venture through this latest battle in Zoey's life.I stood, for a short time yesterday,shoulder to shoulder with some other parents,doing just as I am,living each day, trying with all their might to save their children's life at whatever the price, at whatever the cost ... because in the end ... we just want them here with us .... for a lifetime.One of the most touching moments of the service was when Luke's cousin,she was all of about maybe 10 and I believe it was her father,sang an amazing song."Godspeed" by the Dixie Chicks.Her dad played the guitar and she,like an angel, just stood there and sang.I felt so privileged to have been there yesterday.Privileged and better for having known this small soul.I leave you with the lyrics to the song they sang for baby Luke.Peace sweet child.And peace and strength to John,Laura and Gracie as they make their way through the days ahead.Our love goes with you.Always.
Dragon tales and the "water is wide"
Pirate's sail and lost boys fly
Fish bite moonbeams every night
And I love you
Godspeed, little man
Sweet dreams, little man
Oh my love will fly to you each night on angels wings
Godspeed
Sweet dreams
The rocket racer's all tuckered out
Superman's in pajamas on the couch
Goodnight moon, will find the mouse
And I love you
Godspeed, little man
Sweet dreams, little man
Oh my love will fly to you each night on angels wings
Godspeed
Sweet dreams
God bless mommy and match box cars
God bless dad and thanks for the stars
God hears "Amen," wherever we are
And I love you
Godspeed, little man
Sweet dreams, little man
Oh my love will fly to you each night on angels wings
Godspeed
Godspeed
Godspeed
Sweet dreams
22 comments:
Oh yes the weather has been so strange. We live south of Sacramento and are having the same type weather you described.
Keeping Lukes family in our prayers, the lyrics for that song are beautiful.
I've heard that the weather's been crazy. Its headed our way tonight. But for us will end in snow, yuk.
I hope Zoey's numbers are what she needs on Monday so you can continue to kick this cancer's butt!
I thought of you many times yesterday knowing what the day held for you...more heart-wrenching reality...a reality that so many of us never think of until the 'news' comes and then it's staring right at us. I hope peace will hold your heart tenderly as you continue your journey and fight with your sweet Zoey and that those all around you will see that peace and hold onto hope as we all do, for each of our angels and those angels we have grown to love though we have not even met. My friend, sweet dreams tonight and know you get to wake up at home with your baby girl again! I love that song...I did a slide show for Jaden to that song...it's beautiful! Sleep well myfriend...until tomorrow...
Home is such a beautful place -- enjoy my friend!
How sad to lose a child so young! I understand the anger, it just doesn't make sense, but there is a reason.
Hope Zoey's numbers come up soon! It must be so hard waiting and yet so good to be home, yet so difficult knowing that you have to go back again soon! I'll be praying!
I'm sure another week at home is a blessing. I will keep Zoey in my thoughts, praying her numbers will increase.
Zoey sets her own pace and the numbers follow. Peace, comfort, and love to Luke's family, I am so deeply touched by your description. Let's all help each other stay strong. Love and kisses, Christi Harman
Our thoughts and prayers are with yu constantly as you find your way through all of this. Just didn't want you to think we had forgotten about you guys. Give miss Zoey a kiss from her friends in Alabama
You definitely need another week to recover. Some more time at home will do everyone good! Take care and please try to rest a little!!
Tera
Godspeed.
What a precious doll baby! The second I saw her I smiled.
I have added Zoey to my daily prayers and to my blog so that others may offer their prayers as well.
Hail in California? Didn't think that happened out there! At least 3 inches of ice will not build up or 2 feet of snow like sometimes here on the East Coast.
Enjoy your time at home. Must be good with everyone in their own beds. I'm sure the "boys" love having Zoey, mommy and daddy being home every night.
Take care
Bluebelle
I just came across your blog through the Riggs blog and others I follow. I haven't fully read your story and I am looking forward to doing so. I have a 10 month old son that has truly blessed and enriched my life. I have to comment on Zoey. I haven't read much postings but rather looked at the photos. When I see those photos I see so much LIFE and JOY and HAPPINESS and CHARACTER in her. I look at the photos and can't help but giggle and smile big. She is so beautiful and full of zest. It makes me want to get down on the ground and play play play! What a blessing she is...God Bless You!
I forgot to sign my last post...it isn't from 'Brandon'. That is my son- it is 'HIS' blog...
I'm Melissa
Brandon's Momma
aww! i am so sorry to hear about your friends loss. that is terrible! i will pray for Zoey and Luke's fam as well. i will pray for NO FEVERS darnit!
It doesn't matter if you take a big or a small step as long as your are heading in the right direction. And you definetly do.
Zoey has her own pace and her little body knows best when it is the right time for the next "full throttle attack".
All that matters is that in the end, you will make it. And you will, Zoey will, I am absolutely sure of that.
Enjoy your extra time at home and use it to regain some extra power for the next part of your strenuous journey.
We are all with you. I keep you in my prayers!
Big hug - Alex
Zoey is such a pretty little girl! I will be praying for her.
OK..my daughter and I have now been all the way through your blog.
I already know the answer to my question but my daughter (she's 15) wants me to ask you if we can have Zoey? LOL
She is just awesome...and when I look at her I have such a good feeling. She is going to come through it all with flying colors!
My son Matthew suffered a brain injury during birth which left him with Moderate/severe MR. He is now 20 and is the center of our universe.Anyway...We will check in for Zoey updates...and we will be praying for your family.
That's a great song. Will pray for some great numbers for sweet Zoey;)
Wow Heather...what emotions you live with. How do you ever sort through them. But somehow, someway you do. You amaze me. Zoey forever remains in my thoughts and prayers. And my heart goes out to Luke's family.
Prayers to this family Heather, thanks for sharing.
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