Friday, 27 July 2012

Day 30 something

Home.  Home brings such a mix of emotions. Of course we are beyond happy and grateful to be here, but unless you have been in the shoes of a family that has a child with cancer there is no way to understand how difficult it can be as well. I hook up IVs, inject medications, schedule out pills, clean up barf, hold 2 crying babies; one because she is incredibly sick to her stomach, and one because he is sick and tired of being left home with sitters. I try to keep my house clean - up to Bone Marrow Transplant standards and  that is an impossible task with a 2 year old and dog running around.  I spend entire days at the Bone Marrow Clinic when Millie needs transfusions or check-ups, today we were there for 7 hours. There is never enough time for anything, BUT the house is full of crafts, games, spills, giggles, and crumbs. My family is here and the house is being lived in. In a way the mess is a beautiful site.  The last week has been incredibly hard because I was the sickest I have been in, I don't know how long. I had to give Brady instructions on how to do all Millie's IV stuff over the phone since I couldn't be near anyone. It was frustrating and scary. Saturday night was the worst of it and I cried myself to sleep. I was so worried that I could have gotten Millie sick. I don't even know how I got sick, I hadn't been anywhere since we'd been home but the vet. Did I catch the flu at the vet? When you live this life you have to analyze everything. Do I let her go outside without a mask, can she at least see the neighbors puppy for a second, what do we do with our dog, should I make Austin wash his hands again, is it alright if she sits on the grass, did that dish get washed and soaked in bleach before I put her food on it, do I need to steam her toys again... The list goes on. It is stressful to say the least and on top of everything else my house looks like a pharmacy blew up in it. We have bottles and bottles of medications, IV bags, syringes, saline, heparin, needles, prep kits for her broviac, bandages, and more.

Austin is having such a difficult time that the last day I was stuck in my room he sat in my doorway literally all day and watch shows on my tv. He couldn't really even see me since I was in bed and we wouldn't let him in, but he knew I was there and he didn't want to leave my side. He even snuck in at one point and kissed me. He is such a sweet boy and I feel sorry for him. He is so little and doesn't understand. Hopefully we have done enough his last 3 years of life to let him know how important and special he is to us.

Millie has been doing great! What does great mean? Well most the time she is feeling pretty good and able to play for a little while before her body gets too tired. She is eating a little and her docs are starting to taper her off her TPN. We are hoping she will be taken completely off by today, but we have to get her eating a little more first.  She has a ridiculous amount of pills she has to take and we have figured out a routine that helps her not to get too sick and throw them up. Today has been one of the worst days for her stomach pain.  I had to hold her up on the toilet while she was screaming in pain. It's an awful feeling to know there is nothing you can do for your child. The first couple of days her legs were killing her. Her little muscles have been unused for so long I think they were freaking out with how much playing she was doing. Her body seems to be adjusting though. It's normal for her to feel some pain as she is growing new bone marrow. Of course she will ache, but for a bone marrow transplant patient she is once again showing everyone who is boss, and that's Millie. She had clinic last Friday and she need some platelets, but everything else looked good. They thought she'd need blood by Monday so they brought her in again, but she was great. No blood, and no platelets. That's fabulous news, it means her body is starting to make all of these things on their own. We had another appointment today and since she had gone a week without transfusions I wasn't surprised she needed both. It was long and exhausting day.


If I could choose being home or the hospital of course I would choose home 1,000 times over, I am just surprised at how much of an adjustment it has been. I should be use to this as it always takes time to get back on a schedule, but this time has been completely overwhelming. But I can do overwhelming when my family is all under one roof. I can love and snuggle both my kiddos at the same time. I see my husband for more then a few passing moments in the hallway. I have missed him. Being together is something I will never take for granted. I love my family.

Thankfully we have had so much support. When I was sick my mom cleaned and disinfected everything. Poor Brady had to have been more then overwhelmed with everything and then I was on quarantine to top it off so he had to face everything all on his own for a few days. His family has also been amazing. Thank you Kyle, Adam, Andy, and Jeff for helping put Millie's playset together. It was a ton of work and he couldn't have finished it without you and it's finally done! The kids have been enjoying it all night. Nancy also babysat so we could go on a much needed date. Being trapped in the house is taking it's toll on me and I enjoy every free moment I have.

Since I don't have any pictures I thought I would post a video of Millie singing at the hospital. This was one of our final days there. It's not a big show like usual. You can tell her energy is down, but I still love it. Enjoy.






10 comments:

Wendy said...

OMG! I love her Amanda! I can totally relate to your feelings about being home versus in the hospital. I am so so sorry you have been ill. Please know that you are in our prayers daily. XOXOXOXOXOXO

The Buckley's said...

She is such a strong little girl. I'm so sorry you have been sick. Please, please, please know that I can come help anytime you need it. I would love to come hang out with those 2 cute kids while you and brady go out on a date. Call me!!!!

Anonymous said...

I'm so sorry you've had such a hard time! I guess I hadn't really thought bout all the stuff you have to do when you're on your own at home. And then to be sick on top of it all! I sure wish there was an easier way for all of you. Give that sweet little girl a hug and a kiss for me! Amanda and Brady, I think you are amazing! I'm sure you don't always want to have to be amazing though. You are always in my prayers! Hugs and kisses to you guys too! -Miss Patti

Eisha said...

We had thomas' b-day party yesterday and I had so many of the moms ask how you were doing- they all read your blog! We love you over here!!

Danalisa said...

Your vulnerability to share your experience like this is amazing. You are all so incredibly strong and inspiring. I love you all and continue to pray for your family. Hope you are feeling better!

Anonymous said...

This is a hard stage. All of a sudden the house you thought you kept very clean is not clean enough and you become a nurse overnight, without much training. You can do this and it will get easier. Before you know it she will be off all meds and you will not worry about every germ. I am continially praying for you. Shannon and I love reading your blogs and seeing how well Millie is doing.

Vickie

Heidi said...

I am so glad you posted. I have been wondering how you were doing since you have been home! I am so glad to see she is doing well. (Except for those nasty stomach pains. Jake had them for awhile too... they seem to have gotten better over the last couple of weeks.) Maybe once we both hit that hundred day mark we can get together and let the little kiddos play. Would be fun to talk to you other than emails back and forth and passing you in the hall! Please let us know if there is anything that we can do for you. You guys are amazing. It was interesting reading your perspective at being at home. It is a lot harder than you imagine it will be. But you are right. So worth it. We think about you often and hope your family continues to do well.
xoxoxo

Katie and Jeff Wood said...

Wow this is such an amazing post. You guys are truly my heroes! I just feel a strong spirit when I read your words! We love you guys! Adorable video!

lindsay Roscoe said...

Has Justin Bieber seen this video?

Jodi and Tony said...

Your family is an inspiration to me and so many others. Love, love to see Millie singing. Love to you all.