Home is where...you feel better!

Jesus replied, "Truly I tell you, if you have faith and do not doubt, not only can you do what was done to the fig tree, but also you can say to this mountain, 'Go, throw yourself into the sea,' and it will be done. Matthew 21:21

I've struggled over the past week about what to write about...ok so really 3 kids is kicking my butt and I can't muster up the energy or thought process to write! 

After crossing every finger we had while still in Memphis, we packed up our van Thursday, moved out of the apartment at Habitat for Hope headed to St. Jude just knowing they were going to tell us we could go home!  And after waiting for her blood work we quickly learned that we were again trusting in our own plan, and our plan was wrong!  St. Jude wanted us to hang out till Saturday to have her blood work checked again, for fear that she may need some type of blood product by then.  I did my best, "its okay" smile, knowing in my heart that her doctors only make decisions in her best interest.  Having to wait till Saturday meant just hanging around all day Friday, with nothing to do, I mean we could find something, but when your van is stuffed to the breaking point and all your clothes packed up, you don't really feel like doing anything....in fact, Richard couldn't get my pouty pants excited about anything...like dinner.  While mopeing around our temporary housing, my phone rang, it was Ellie's nurse practitioner.  They wanted to see her again tomorrow (Friday) to check some other blood work, and if that was okay we could go home after wards!!  Yeah, I can stop pouting now (not that I did).  We took Ellie out to dinner, which is always fun right after chemo, especially 5 days in a row of chemo.  She wouldn't touch her food, cried if it got near her, and her poor belly had us running to the bathroom every 10 minutes.  As much as you want to do normal things, its so much work!

Friday came, we saw and conquered!  We were given the all clear around 12:45, by this point Ellie was a mess....we had told her we were going home.  I haven't always been sure she understands where home is...but today I realized she knows!  As we ran back to the Grizzly House to pack up again, Ellie cried and cried saying "but I want to go home!".  By 1:30 we were in the van and leaving Memphis, we realized about 30 minutes later we never ate lunch, oh well! 

 

The only excitement on our trip was an almost midnight meeting with the Christiansburg Blaines!

 

Can you tell how loved this little lady is?

 

We finally made it home around 2:30 in the morning! 

I walked through the front door and straight to Noah's room.  I climbed the ladder to wake him up, and as his eyes opened, I heard the sweetest "Mommy!" ever.  He drives me crazy sometimes (ok a lot of times) but I have missed him and his huge heart so much!  We hugged and cried and laughed.  Got jammies on...Noah put his helmet on, took a picture and went to bed.  I attempted to sleep, but my mind was going a million miles an hour.  I was so excited to be home, but all the worries of the next few weeks and months started flooding my brain.  We had brought her home with an ANC of 0.  I don't understand all the ins and outs of these numbers, but I do know that a 0 ANC means her immune system cannot fight any infections.  Her ANC always drops after chemo, and we give her shots to bring it back up, and she's been at 0 before.  But it was an all new anxiety to bring her home and try to keep the germs of the other kids from her.  We stationed hand sanitizer all over our house and prayed that God would keep her safe.

 

I have to say thank you to everyone who held back and did not bombard our house.  I was so anxious about germs and I never had to stress it.  Her first week back wasn't the easiest in the world, but I'm thankful we were here.  She has started her two a week visits to UVA and is making herself at home in the new clinic.  So far she has had one blood transfusion and had to get platelets twice.  She also sat at a 0 ANC for a week.  Her mood was up and down and she continued to have stomach issues, no appetite and for the first time developed some sores in her mouth.  We haven't been able to take her to church yet, which is a day we are anxiously awaiting.  Our church family has been so incredibly supportive of us, and I know how much they just want to see her in person.  I was able to take Noah this past Sunday.  It felt just as good as coming home, I didn't realize how much I missed church until I was there.  By the time we left, my face hurt from smiling so much.

 

I took Ellie back to UVA yesterday, praying that she could at least get off "house arrest", that maybe just maybe her numbers had come up.  Well we are happy to report that not only can she return to the world (with limits of course, I'm still a little nervous), that we don't have to give her shots anymore right now!  Us keeping her infection free for a week when she has no immune system and is in a hospital two days a week is a nothing short of a miracle.  I was told once we came home, she may stay in the hospital the whole time, she may develop a fever.  I did let that information of the world panic me and even let it get me upset...I let that doubt creep in.  But my God came through, like he always does, silly me for doubting and He did exactly what we asked of Him, He kept her infection free.

 

She is in a much better mood, she is laughing, playing and remembering what her old life used to be like. When I saw her crawl in the laundry basket the other day, I was brought to tears...this child used to always be in her laundry basket or her toy box.

 

Life is slowly returning to what it used to be.  She still has the same interests and still loves the same toys.  I guess because her appearance has changed so much, I excepted something else, not sure what...but when I see things like this, I'm encouraged that life can return.

She is still a sandwich fanatic and has now ventured out to spaghetti, fruit cups, fruit snacks, lasagna and pop tarts on occasion.  We still have to battle to get her to try new things...which usually includes screaming, crying, and occasionally a time out, but she's doing it.  We are all doing it and I am beyond grateful.

 

Read this the other morning and I feel like it describes my exact emotions over the past week. 

 

"Bring me all your feelings, even the ones you wish you didn't have.  Fear and anxiety still plague you.  Feelings per se are not sinful, but they can be temptations to sin.  Blazing missiles of fear fly at you day and night; these attacks from the evil one come at you relentlessly.  Use your shield (maybe I should borrow Noah's) of faith to extinguish those flaming arrows. Affirm your trust in me, regardless of how you feel.  If you persist, your feelings will eventually fall in line with your faith.  Do not hide from your fear or pretend it isn't there. Anxiety that you hide in the recesses of your heart will give birth to fear of fear.  Bring your anxieties out into the Light of my Presence, where we can deal with them together.  Concentrate on trusting Me, and your fearfulness will gradually lose its foothold within you." 

 

As happy as I am to be home, as happy as I am with the progress Ellie has made...fear and anxiety still attack me.  I am getting much better of pushing those anxieties aside, but I don't always share them with God when I pray.  I ask him to release those fears, but we don't always talk about them, probably because its too scary and bring out more fears.  I always tell kids at school that feelings are okay, and its okay to feel scared....again not taking my own advice.  I guess the trick is to not let the fear overcome you, where you stop living your everyday life or you stop trusting that God will see your through this journey.  Its a struggle everyday to push those "what ifs" away, to not get scared of what the future holds, to remember what my God has told me, and to not doubt what I am praying for is possible through God.

 

Ellie will return to St. Jude August 12th for her next round of inpatient chemo, Richard is going to go with her, they will be gone for about a week.  She then gets to return home for three weeks, and will have her next MRI September 18th.  I also return to work for the first time since February, on August 12th.  Until that day, I am going to continue to enjoy every moment we have here, delight in all the arguments, crying and chaos that is my house.  I will do my best to not fear what tomorrow holds.  I will continue to ask God to heal Ellie, despite what the world says. 

 

We ask that you pray for all children battling cancer, but we ask you in particular pray for some other Pineoblastoma kids that are having a very rough time right now, some have received some very devastating news.  Please pray that they would feel the Peace that only God can provide.  Pray for healing for those children, and pray for a cure.  It is heartbreaking to see all these beautiful children suffering without a way to make them better. 

 

Our family will be walking in an upcoming walk on September 28th in Charlottesville, VA for CureSearch, which is a national non-profit foundation that accelerates the cure for children's cancer by driving innovation, eliminating research barriers and solving the field's most challenging problems.  If you would like to join us or make a donation to the team, please visit our Princess Strong Team Page.

 

Thank you for your continued prayers and love.  You all motivate us and inspire us daily. We love you!

Prayers, Praise and Pink

~Carly (and the other 4 crazy Blaine's)

 

P.S. it has taken me 3 hours to write this, with kid interruptions....SG wants a bottle and I'm afraid if I don't publish this now, it will get forgotten....so forgive the typos, I'm not re-reading :) 

 

P.P.S. Ellie gets to go to church tomorrow night!!!