Today is our one week anniversary of coming home from the hospital. It feels like an eternity, I can't believe it's only been 1 week! We've learned a lot this week, and there is a lot to learn still. We are learning how life is as cancer parents. It will take some adjusting, but I think we'll get there. One of the main things we've noticed is the ups and downs. When Brinley is happy, we are overjoyed. When she's feeling good we feel a little normal, like before all this happened. We also know it could be gone any second, and when she is miserable, it reminds us that she has cancer. She will be laying there with red-rimmed eyes that will barely stay open feeling yucky. Today has been one of those days. She wasn't feeling very good this morning, perked up in the afternoon, then felt sick again in the evening. But she is eating still, yay! She does still have to have to oxycodone for her jaw pain, but at least she is getting some nutrition. She wanted mac & cheese for BREAKFAST again today! How crazy is that??

I think I've decided that is how life is as a cancer parent. We'll have days where we are so overjoyed for a happy moment, we feel our hearts will explode. And then we will have moments watching her go through pain where we will feel like our hearts are shattered into a million peices for what she is going through. That is our reality for the next little while.

My mom was here all week helping and it's a good thing! I don't know how I'll do this by myself, Brinley wants to be held all day! I was so sick yesterday all day that my mom decided to stay and help the rest of the day. I was so grateful, because between throwing up and a massive headache, I wasn't functioning too well! Luckily as my mom was on her way out, my sister-in-law Huenu (David's sister is St. George) swooped in to help for the weekend. So we haven't been left alone yet, my dad left and David's parents came, they left and my mom came, and she left and Huenu came. What a family!!!! Next week will be interesting on our own. Sometimes I feel like a child and want to cry "DON'T LEAVE ME!! I'M NOT READY!" But I know this has to happen eventually. I don't know who could possibly stay with me for 7 months! lol! So I'm gearing up for next week.

We are also feeling quite grateful. We realize it will be hard, but we also realize how much worse it could be. This is something she can beat and grow up to be perfectly healthy and normal. That thought makes it a little easier. I can't wait until I have my happy, healthy Brinley back!! I miss her!

And we are so glad to be here in Utah for all of this. Primary Children's Hospital has been so wonderful. They have had such wonderful doctors and nurses. The nurses have been so good to us, one even came in the room late at night to check vitals on Brin and found me crying by myself (I had thought I was safe with everyone gone, but you are never safe in the hospital!). She came over and sat and talked to me for like 10 minutes, and she was just coming to get Brinley's vitals! I thought that was so sweet of her. We really feel like Brinley is in good hands.

Brinley isn't feeling so good today, but I heard it can be much worse, she's not throwing up or anything and her jaw seems to be okay so far. She's been able to eat some this morning and seems to only want mac & cheese. She asked for it for breakfast! I'm going to have to get those microwavable mac & cheese bowls so we can make it up quick when she wants it.

I haven't gotten the results from the bone marrow biopsy, unfortunately. They said I would have them yesterday, then today, now it's monday. So we'll wait until Monday to find out if her body is a quick responder to the chemo or a slow responder.

I'm feeling quite sick today, too. So we are a couple of sickies. I didn't get quite enough sleep last night, and that's when morning sickness sneaks up on me. I started the day throwing up and have had a major headache all day. I'll be glad when I can get in my bed tonight!

Today has been a pretty good day for Brinley. I'm surprised this being the day after chemo, but I just never know what tomorrow will bring, so we will be happy with this good day. Brinley is tired, but happy. She has been pretty mellow and wanted to be held and cuddled, which is okay with me!

The in-home nurse came this morning and we changed the dressing on her central line. She fought it and we had to hold her down, but it wasn't too dramatic. Now she has a nice fresh dressing over it. It's actually healing pretty well, it looked good and my stomach held up just fine.

I had to take the band-aids off from her spinal tap and her bone marrow biopsy within 24 hours, and that sounds like no big deal, but I swear the hospital uses super-glue on their band-aids because she screamed and it was all read and raw. But that has been all the drama for today so far.

She hasn't eaten a lot, but she is drinking a nutrition shake with vitamins in it and she really likes it (thanks Aunt Nancy and Aunt Lori!) and she has been able to eat enough to satisfy us.

Now that we are in week 2, I'm feeling a little different. Before there was so much going on, and it was awful, but I didn't really have time to think about things. Now that we are home, I've been doing a lot more thinking. One minute I'm doing great and feeling so positive, then the next minute I'm so discouraged and crying. It's so strange to have such extreme feelings of good and bad. I guess I've just realized a few things.

Number one....our baby has cancer. That is finally becoming real to me. There is an awful disease in her body that wants to end her life and we have to fight it. It is absolutely a war between us and the cancer and the war will take place inside her little two-year-old body and cause her pain.

Number two....I can't protect her. Painful, scary things keep happening to her over and over and over. I want nothing more than to be able to scream "NO YOU WILL NOT DO THAT TO HER! ABSOLUTELY NOT!" But doing that every time I want to would cost her her life. So I let it happen and she watches her parents let awful things happen to her. It is heartbreaking and I have no control over it.

Number three....We will make it through this. SHE will make it through this. At this point I will not look at any other option. I may be forced to rethink that someday soon, but right now I will not accept that she will not make it through this.

Number four....Life is full of trivial things that we think are important. Since this has happened I have realized how many things we focus on that are so incredibly UNimportant. Two weeks ago I saw things through a whole different world. Now our world has been picked up and shaken around and put back down and we need to pick up the peices. And the things that seemed so important don't even hold a drop of water compared to our family, friends, and the Lord. That is what is important to us. These people we live with day in and day out who we take for granted...THAT is what is important. Nothing else matters, money, cars, house, I don't care what I have if I don't have my family and the Lord in my life. I would give it all up in a heartbeat to have my family together. I love them.

Number five....Happiness and joy are precious things. Everytime I see Brinley smile now, I want to freeze time forever, because I know it may be gone in a moment. Every second of joy she has felt since this has happened has been a blessing and I can't wait for the day she can be back to her old self.

Well, we are done with our first clinic. It was not very fun. I think this is going to get old really fast. We got there and found out she had lost a little more than 2 pounds since we left the hospital last week. She has to do better this week or they will have to put a feeding tube in. That was disappointing.

Then when the nurse went to draw blood from her central line, nothing would come out. She tried and tried, and she could put fluid in but nothing would come out. Brinley was screaming "ow! Ow!" but the nurse said it shouldn't be hurting her. But I say if she is screaming "ow, OW!" it's probably hurting her. Anyways, after a few minutes of trying she was able to suck out enough drops to do the test. I asked her if something was wrong with the line and she said that sometimes it depends on their position and they have to move around a little if it's hard to get the blood out. I thought it was going to be easier with this thing in! I am hoping next week will go better with the blood draw.

Then we saw the doctor who gave us another prescription of oxycodone for her jaw pain so she can eat. I'm a little nervous about how long this will go on and if we will be having to give her these painkillers the entire time of the chemo. I hope not. Her blood counts looked okay. Her red count was high, that was good. Her platelets were really low, but not so low they needed to do a transfusion. So we just have to watch her carefully that she doesn't get injured, because her blood won't clot as well. We have to be careful brushing her teeth and stuff like that and they said she would probably bruise easily. Her ANC was pretty low (that determines how her immune system will fight off infection) and so they don't want us to go in any crowds. No grocery store and stuff like that, unless she wears a mask. So it will be a long week this week.

We felt like yesterday her symptoms were finally starting to wear off and she was a little happier and ate better, and now we have to start all over again.

Then they did her bone marrow biopsy and a spinal tap and put some chemo into her spinal fluid. We will find out the results of the biopsy probably tomorrow sometime. That will determine how well her body is responding to the chemo. The sedated her for those tests, so of course when she woke up she was screaming. She wouldn't calm down, so we finally had to just take her home screaming. She fell asleep on the way home and seems fine now.

Oh boy, I realized today that this is going to be a long road. I'm feeling frustrated and sad and wish I wasn't so helpless in this. I can't do anything to take this away from her and it's kind of depressing. But we're trying to stay strong and get through this.

We found some rain to cheer us up after our Clinic visit :)

Well, today is starting out good. Brinley finally ate at 7 last night. We gave her some oxycodone for her jaw pain and waited a little while. She still refused dinner, so David decided to force one bite in her mouth so she would see her jaw wouldn't hurt if she bit down. She reflexively bit down, and realized there was no pain. Boy, did she eat after that! She drank 2 or 3 cups of milk, ate a bunch of taco soup and fritos and was a happy girl after that! She must have been starving! We were so happy, we had been on the verge of panic with her not eating or drinking! She still looks a little dehydrated today, but we are trying to pump as much fluid in her as we can. This morning she won't eat, but she has a few glasses of milk, so we are happy with that. We are mainly worried about dehydration for now. Hopefully in the next couple days her appetite will increase. She goes for her first clinic tomorrow morning. We are not sure what to expect. She will get her chemotherapy and they will check her blood counts. They will also do another bone marrow biopsy to see how the chemo is working on her leukemia. I don't know how long the results will take, but hopefully quickly. I know every person responds differently and we really want to know how Brinley is responding. I think we will be there all morning, so I'll report when we get back!

Thank you to everyone who is putting up words of support for us. We cannot believe all those people who are there cheering us on. Even people we don't know have taken the time to post words of encouragement. THANK YOU, THANK YOU, THANK YOU! It truly keeps us going and has helped us realize how wonderful people in general are. There is so much good in the world and we have experienced so very many random acts of kindness, from the people working extra hours in the dry cleaners to get all our laundry done so we would have clean clothes when we got home (thanks to Dad), to neighbors that we didn't even know coming over bringing toys and words of encouragement. We are so grateful both to those friends and strangers who have rallied around us in support. I get choked up every time I think about all of you. I have come to the realization of how desperately we need you all. There is still so much more to come for us, I know that we are only in the beginning and there will be some ups and some downs, so thank you for being there for us.

We've posted some more pictures so scroll down to check them out. :)

Not much new to report today. Yesterday was a long day at home. Brinley is really grouchy and having a hard time eating and drinking. She at good finally yesterday and drank enough that she wasn't dehydrated, but she hasn't eaten or drank anything today at all, and it's almost 2:00. So we are getting nervous. The nurse told us that if she starts losing weight, they will put her in the hospital on a feeding tube. We really don't want that, but cannot find ANYTHING she will eat! I think it might have to do with some jaw pain, one of the medications can cause that. Everytime she tries to take a bite of something, she holds her cheeks and cries. I will probably call the clinic today.

The in home nurse came over today to watch us flush her central line and make sure we can do it every day by ourselves. I was so dang nervous I was shaking trying to put the syringe into her line. The nurse was probably laughing inside, because she said this will eventually be like changing a diaper. But I had to clean the cap 3 or 4 times, because I kept letting things touch it (she was kicking and mad) and if anything at all touches the cap, she can get an infection. I finally got it done and hopefully between the two of us we will be fine on our own tomorrow.

David's parents were here over the weekend and left today. They were a great help, we were sad to see them go. My mom will get here tonight to help when David goes back to work. Thank goodness, I don't know what I would do by myself yet! It seems like she's crying all day long, poor girl!