Whisper Your Love

I first learned about The Blackthorne Project from Emily, our friend, Thomas' mom. She had posted a song on one of her updates about Thomas' cancer journey.


Ever since that first song, The Mud Song, thier music has been at the top of our playlists. Take a listen, they are good. I think what I enjoy the most is that it's honest music with imagery that moves me. The lyrics are real in all of life's joy and pain, yet hopeful.

Today I've been listening to this song, Whisper Your Love. I put the lyrics below and am not techy enough on an ipad to figure out how to put the song here too, but go listen to it and all their songs, you will be blessed & encouraged.

when I'm small
when I'm helpless
when I'm scared to leave the place where I hide
when my head is loud
but full of nothing
o how I need the sound of your voice

everytime I cry
help me remember

your love is so great you lift up my heavy heart
you break off the ropes that burn my skin
your love is so great you set me in open fields
you whisper your love, you whisper your love

when I'm small
when I'm helpless
when I've believed all the lies I've been told
when I'm tangled up in lesser loves
o how I need the strength of your touch

credits

from Reckless, released 15 August 2010
Laura Elizabeth Thornton & Tim F Thornton (Bricklayer Music Publishing, ASCAP)

 

Posted with Blogsy

His Yes Is Yes

Esther's brunch, she was super excited to pour her OWN syrup.

 

Since Esther was sleeping all morning I was able to spend some time reading and praying. This morning I read Acts 27. Paul was journeying to his trial on a prisoner ship with other prisoners and soldiers. The ship encountered treacherous weather and the ship along with it's passengers were in danger. They had to throw most everything overboard.

An angel of God told Paul that he would stand before Caesar for his trial and that the ship would be lost, but not one person aboard the ship would be harmed in the journey. Paul knew they would reach their destination.

He told the prisoners and soldiers, 276 people, "Today is the fourteenth day that you have continued in suspense without food, having taken nothing. Therefore I urge you to take some food. It will give you strength, for not a hair is to perish from the head of any of you." (Acts 27:33-34)

Paul thanked God and the men ate and were encouraged. "And when they had eaten enough, they lightened the ship, throwing out the wheat into the sea." (vs 38)

Here were nearly 300 hungry men with a very uncertain future. Some of these men may have known God, but many did not know this God that Paul was speaking of. But they all trusted...enough to not strive and try to keep the little food they had. They ate, were encouraged and tossed it all overboard. The ship did wreck but every passenger made it safely to dry land.

God's yes is yes. These men trusted the one true God and He brought them to dry land in the midst of extreme circumstances. God is good, He will bring us to dry land in the midst of any circumstance. There is hope at the end of all of this. One of my other favorite passages is Habbakuk 3:17-19:

Though the fig tree should not blossom,

nor fruit be on the vines,

the produce of the olive fail

and the fields yield no food,

the flock be cut off from the fold

and there be no herd in the stalls,

yet I will rejoice in the Lord;

I will take joy in the God of my salvation.

God, the Lord, is my strength;

he makes my feet like the deer's;

he makes me tread on my high places.

Esther slept until 11 am. One of her doctors came in on her day off today just to check on Esther and commented it was so teenagerish of her. She was cheerful and just needed a really good sleep. She had great nurses today. She has been drinking so well she was able to be off her IV fluids most of the day so we were able to take a walk outside. It was GREAT to get outside. We also got to eat dinner with our friends Jodi & Aly. Isn't Aly cute?! She was admitted today for a fever as well and they think she may have an intestinal infection. She already suffered through it a couple weeks ago. Please pray for quick healing and that Aly would not have c diff again.

There is an infection going around the hospital. Please pray Esther does not get it. For now there are signs on all the oncology patients' doors telling all staff to wear gloves to enter the room, take them off, and then re-glove before doing anything and the playroom on the oncology floor is closed indefinitely. I'm thankful for all of the precaution, but it's sort of intimidating. I find myself wanting to strive, to clean the room so Esther doesn't get anything. Instead, I'm striving to rejoice. It is an uncertain tomorrow. The ship might wreck, there are no figs on the trees, and no food in the field, yet I can still rejoice because God's yes IS always yes. He IS the God of our salvation, He IS our strength and He is the only one who gives sure footing in the high and treacherous places we will walk.

 

Posted with Blogsy

Counts are down

We had a rough night last night and this morning Esther's counts had dropped again to 3.8. She hasn't had a fever, so that is good. With our late night the night before and then being up a lot last night, I have to think that stress and fatigue are not helping her body recover. They woke her about 6:45 for vitals and she was still upset from the night, but fell back asleep and is still sleeping now.

They have to be well over 100 and climbing quickly for her to be discharged. A friend sent me this text this morning about her counts needing to rise so much, "that's a huge increase. Will pray for that! A clear way for God to display his might!"

I really needed that encouragement and it's true. That is a clear way for God to display his might and what I'll be praying today. That HE would glorified in Esther's body today.

Posted with Blogsy

Good Day

The ambulance ride to Denver was tons of fun, as we were leaving our friend, Tim, who is an ER nurse in Fort Collins, waved us goodbye. That was SO nice to see a familiar face at Pourde Valley. He prayed with us and just checked in when he had a minute. She thought the seat belt on the bed was pretty cool and was full of smiles when they raised the bed up and lifted her right into the ambulance. Daddy followed us out of the parking lot and we waved. She kept saying, "See you later, Daddy!" We had very nice EMTs who braved the rain and got us to children's safely. One of them, Lee, was a pro. He handled my GIANT bag (it was about 2/3 egg crate) and the bed at the same time. I was impressed.

He asked about Esther on the way down and our other children and teared up a bit when he told me about his children and how much it would hurt for him to see them go through something like this. When we got to Esther's room he asked if it was okay if he put her into her bed and if he could give her a hug. It was so sweet, a sticker to make it feel better.

I appreciate the empathy, this is weeping for those who weep. I once read on a blog of a woman who has suffered a stillborn daughter that it really bothered her when people would say "I could never imagine." She wanted to retort something like, "Well, could you just try. Could you just feel a bit of what I'm feeling?" The day Esther was diagnosed the nurse in the recovery room teared up and apologized but I told her that was being a good nurse, that she'd acknowledged the pain we were feeling.

Thank you for weeping along with us, for constantly encouraging us and praying for us. This is a beautiful thing and precious to the Lord. He knows it's so much easier to just shut down and to "never imagine." Going down that path of heartache is love in action to weary hearts.

It was late, but when we arrived there was a love note and a sticker to make it feel better. The oncology doctor on call modified the admission plan and was waiting for us on the floor so we did't have to do any intake and could go straight to our room and when we arrived the nurse had made up a bed for me.

Today was a good day. Her ANC quadrupled to 13.8 ;)...that's the way we want it to go. For us to get back home she needs to be fever free for 48 hours, for her counts to rise and be full of young white blood cells, and for nothing to grow in her blood culture. If she gets another fever while we're in the hospital, it's another 48 hour wait to see if anything grows in her blood. The soonest we could go home is tomorrow night. In order for that her white blood cells will need to skyrocket, so pray that happens.

More stickers and loves notes along the way... Esther ate and drank well today and that was encouraging. We found a picture menu and that was SO helpful to letting her choose what she wants to eat and drink. My brother stopped by for a bit and we visited the Dory fish and the eel on the 4th floor, then the ball machine, then Nemo, Marlin and the star fish on the first floor and we walked the giant floor maze. Bill did an awesome job of maneuvering her IV pole.

Esther let me braid her hair and here's a bunch of fun, red lipped, high five pictures we took after she slammed down half a power-aid. She's never tasted such delightful drink in her life. I was just happy she was eagerly drinking.

 

Posted with Blogsy

Back To Denver We Go....

Esther has had a lowish fever most of the day, but this evening it went up to 101.7 (we are supposed to call at 101). They asked us to take her in to PVH for initial intake and to check for apparent infections like pneumonia, something in her urine or something alarming in her blood. There is nothing clear from these initial scans, but her ANC (germ fighter strength) is only 30. Chemo patients are high risk for infection when her ANC is 500...so 30 means she really has no ability to fight any infection right now. UPDATE: 7:30am, we did our math wrong, her ANC was only 3. This morning it is 13.8. That's right direction, please pray it would rise quickly, showing that her body is making white blood cells so we can go home quickly.

 

So, now it's 11pm and she's jumping around this hospital bed. We have to go to Denver via ambulance and she is really excited to ride in an ambulance. She could hardly hold still for a picture. I'm thankful that she's seeing this as an adventure.

We are okay...I had a little break to head back to the house and get a few things together for the next couple of days in the hospital and had a good cry. I feel entitled to an easy journey, that it's already hard enough that my daughter has cancer and complications or other challenges can't happen. Shouldn't her treatment be straight forward, as convenient as possible, all tied up with a neat bow?

This is the journey we're on and she's happy as a clam right now, thrilled for an ambulance ride. That's the thing about kids...she doesn't worry about tomorrow. She's secure. She knows her brother and sisters are at home and will have fun with Auntie Margarita tomorrow. She even picked out stickers for each of them. She's secure that she'll be safe in an ambulance and that mommy will be with her. She's secure in our love and knows that right now it's enough. She is peaceful.

I want to be secure. I want to just rest that my other kids will be fine tomorrow and have fun with Auntie Margarita. I left them all a note at home because they were in bed by the time I was able to sneak away, I have not forgotten them and never could. God will no, not, never forget me, or my children. I must lift up my chest and look for his stickers and scribbled notes.

As Esther was jumping around her bed, Psalm 4:8 came to mind, "In peace I will both lie down and sleep; for you alone, O Lord, make me dwell in safety."

Right now I have a choice. I can lie down...I can settle myself, be grounded. Writing helps me settle, it helps me refocus, to trust, to remember. I can vent and cry and be angry. God knows my heart, He knows my thoughts, He knows my comings and my goings. He has purposed this hemline around my life and is my high priest who helps in every time of need and encourages me to approach His throne. These are not the circumstances I would choose. This is not what I want to happen and I am mad. But I can lie down, I can sleep. I can do this in peace, in all of this emotion. The Lord, alone, makes me dwell in safety. Pray we would lie down and sleep in peace, that I would rest secure and not worry about tomorrow, that I wouldn't miss the stickers and the notes from my Father in heaven who loves me.

 

Posted with Blogsy

HOME!

We are all home! Esther's fever went away and never came back, but her hemoglobin was dropping quickly, so the doctor decided that in order to enjoy a weekend at home without any blood draws or trips to Denver we should do a blood transfusion today. She handled it well and I was surprised to realize how quickly her complexion changed. I didn't realize how pale she was. As we were driving home she commented along the way how we were "almost home." Home is a sweet place to be.

There is a big tree in the lobby of the oncology unit that has lots of branches with hats hanging from the branches and big baskets of hats at the bottom of the tree. This is the first hat Esther choose. Here's a picture of the first hat Esther choose, a sweet choice I think.

A note on her droopy eye...there are some neuroblastoma cells around her eye. This is a very common place to find them. There are a few reasons her eye is swollen and droopy...first there are cancer cells near them and they are a little bigger because when she had her MIBG scan on the 4th, the cells took up the dye and are larger. Also, there is some bruising because those cancer cells are dying and trying to get out of the area (YAY!). The larger tumor on her head is also pressing on the nerve that controls her right eye and is impacting the muscles that help keep her lid open. The last reason is that because she was under general anestesia for the MIBG scan and they taped her eye lids closed and her lid is a little bruised.

 

Posted with Blogsy

Fever

We went in for Esther's check-up and a shot to help her body build more white blood cells. Esther had fallen asleep in my lap and felt warm, so I asked if they would take her temperature. She had a fever so they drew blood to check her counts and then gave her some tylenol to bring her temp down.

Her white blood cell counts had dropped a lot from the day before and her red blood count was also low. This is totally normal chemo activity, but it's sooner than most kids experience the drops. Wednesday her white blood cell count 6 and today it was 1.8, the normal range is 4.0-12.0. Because of the fever and the quick drop ( they asked Esther and I to stay in Denver and come back tomorrow (Friday).

It was supposed to be a quick appointment, but ended up being over 3 hours and I wasn't prepared, so too much time went between anti-nausea meds and she got sick. Vomit is a quick teacher...now I know I need to bring her meds with me. I also realized today that we will need to be ready to stay at the hospital at a moment's notice and need to have a bag ready.

I am thankful this happened at the hospital and we didn't have to come back from Fort Collins. I'm glad to know that her counts have dropped quickly and that now is the time we need to really protect her from illness. God allowed her to have this fever for a reason. Without it, they wouldn't have done blood work today and we wouldn't have had any idea how low and how quickly her counts had fallen. Please pray we will be able to go home to Fort Collins tomorrow.

I had my first public freak out tonight at Walgreens when the cashier closed her drawer early and couldn't check me out while I was buying some chemo safe gloves to clean up after Esther. I had already been to a different store and they didn't have what I needed. I just stared crying right there in Walgreens with my gloves, tylenol, and thermometer, blubbering that I just needed to buy these gloves to clean up my daughter's chemo vomit. The poor cashier. A nice pharmacist checked me out and was very understanding.

A friend sent me this verse that her dad, who is a doctor, shared with her about our journey. It was encouraging to me.

From I Samuel 14:6 "Nothing can hinder the Lord from saving by many or by few."

He shared that God will use many to help in Esther's battle against this disease but only One will deliver and so we look for help from the many and pray to the One who delivers us.

We are thankful for the many...the many prayers, the many health professionals. God is Esther's deliverer, yours and mine too.

Posted with Blogsy