March 23-29 :)

Pictures from this past week. :)

Cutest. Smile. Ever. :)

Just eating her cheese stick while sitting in the sun to warm up! 

The Dinosaur Museum. :)

We color all day every day. :)

Brinley is amazing at coloring. :) She even did the leaves different shades of green. (I didn't help her at all)

I could cuddle with her ALL day. ❤️

March 28th: Off for chemo. She has such a great attitude. She's amazing. :) 

Just waiting for Chemo. Also, this is a new hat. :) She calls it a rainbow hat. She did so good today; so much better than last week. It's amazing how much better she feels when she's not fasting. Especially when she is on steroids. By the way, she gained 4 lbs in one week. Got to love steroids. 

Numbers from blood work:

HGB: 11 (Good)

HMC: 32.5 (Little low but okay)

ANC: 200 (Very low)

She is now home bound and we aren't allowing visitors anymore. Her risk of infection is so high. This was expected because that's what Chemo does; we are just going to be a lot more cautious because her numbers are dropping.

3.21.14

Brinley went to Primary Children's for chemotherapy. She also got a spinal tap done. My mom got to hold her while they gave her the meds to put her out. My mom said it was horrifying and now understands why parents aren't allowed in operating rooms.

Her ANC was 900 and her HGB was 14, so that's good. Her numbers are going up. But unfortunately it won't last with the chemotherapy.

On our way to chemo. She was a little upset when we did the port access but mostly because she hates the smell of the alcohol when they clean the area. Her sense of smell has increased a 100 times more than normal. 

Waking up after spinal tap. 

Eating Cheetos in car. She was starving because she had to fast for the procedure. All she wanted was Mcdonalds.

Waiting for our food at Mcdonalds. She wanted to go inside so bad. There was no one there so we went in. As luck would have it, the dining area was being sanitized. LUCKY US. :) Brinley wanted everything. She ate 90% of her hamburger. Saved her nuggets for later. But she gave one to my mom to share. She's such a sweetie. 

Her hat collection. Pretty good so far. :)

Yesterday & Today

Sorry, forgot to post yesterday. Here are some pictures from yesterday and today. :)

Yesterday Brinley took her first trip to the store with mommy. It was a quick in and out haha. As you can tell she was freezing haha. The doctor said we could use tic tacs to practice swallowing pills, so we got some. It would be so much easier for Brinley if she could swallow pills. Right now the steroids only come in pill form so we have to crush it and put it in raspberry syrup. Doesn't taste very good so hopefully she can learn to swallow pills. That's what we are working on right now. :)

Eating noodles and watching frozen with mommy! 

Medicine time can be so rough.  Last night after 2 hours of finally getting all her medication down, she threw it all up. But luckily tonights meds were a breeze. My mom had a genius idea to put all her medication into orange juice. She gave Brinley the option of drinking all her juice or taking her meds the other way. She was so happy for the juice. She said, "thank you mom for my meds." She said it was so much better; hopefully this way lasts.

Brinleys joy = mothers heartattack haha. It's important to be protective but also important to let her still be a kid through this all. :)

We love to color. And she looks so so cute. :)

Super cute crowns from the young women in the ward.

Cool card from Ariel, Peter, Jordyn, and Buzz. :)

It was such a beautiful day today. Brinley got to do one of her favorite things; blow bubbles. :)

Bedtime. Jammie's and ready for bed. Brinley is keeping us on our toes and to remember what's important. She was laying in bed and came back out to remind my mom that we hadn't had prayer yet. I'm sure we will learn so much more from her during this long journey than she will learn from us. 

First Day Home

Post written by my mom. :)

Brinley had a good day. This morning was a little rough. Probably more for me than the kids. Just trying to adjust to taking care of everyone. All I've had is Brinley to take care of. Trying to make sure I did all of her meds right. Kind of scary. But I'm sure I will get it down in no time. After I got the boys off to school it took like 45 mins to get her meds down. With a lot of tears from both of us. It's so hard to watch her cry and have to take these meds that taste nasty (by the way I tasted them she's not exaggerating. They are nasty!!) and then tells me " they don't make me feel better, they make me feel sick" and she's right they will make her better in time yes but they don't make her feel better now. It is heartbreaking. But I have to say that today was by far the most heartbreaking moment of all. As we were working on her meds I asked her if she wanted to take a break for a minute. She said yes. So I held her and she put her head on my shoulder and just sobbed. The kind when you feel like you just can't do this. We both sat there and cried for a little while and then like the trooper she is she took the rest of her meds. We then watched a movie together. She is so brave and so strong. She listens and try's to understand and she does whatever she needs to. In the hospital before her port and they would have to poke her several times a day for labs. She might cry and she might yell. But she didn't move. They never had to hold her down. She didn't like it but she did exactly what they asked. The doctors called her their hero. 

Today overall has been a good day. She took NO pain meds. Did not complain of any pain. Had no major mood swings. Was generally happy all day. Took a good nap. She painted moms nails, Sams nails and TJs nails. Yup TJ's. He was such a good sport. Told you she's spoiled. She can get you to do pretty much anything she wants. She went to her favorite 2nd home "Melanie's moms house". Melanie is the only one we trusted to watch our kids besides their siblings for years and they live across the street. All three of our little ones love to play over there. And have their whole life. It's been awesome for them and me ;). Brinley was so excited to go and play for a little bit. But mom had a very hard time letting her go. But I know she is in very good hands there. But today she didn't play. She sat on Melanie's moms (Maureen by the way but that's not her name at our house :)) lap and snuggled. She is doing great. It's hard to believe at times she's really sick. 

It's been hard on her too cause her daddy was out of town for a couple of days for a gun show and then he came home sick with a cold. So she hasn't been able to get to close to him but as soon as he's better there will be pictures with him in them. Just in case you were wondering where he was. 

She got a bed set up in mom and dads room. :)

Home Sweet Home :)

Brinley came HOME!! :)

Today Brinley got another treatment of chemotherapy before going home; this one was different from the chemo that she will get every Friday. They had to watch her for severe reactions. Thankfully she had none. :) She had less headaches and less leg pain today which is always great. 

My mom got A LOT of training today from the Nutrition Specialist, the Clinic Worker, and Pharmacist before going home. She learned all about Brinleys medications, the side effects, the amount and times given. They gave her a calendar and chemo schedule because it can be confusing and a little overwhelming. She also got what they call the Leukemia Handbook that's a good 300 pages and got a tour of the clinic. There is now a pharmacy in our kitchen, Brinley has 12 prescriptions. There are 2 medications for part of the treatment and the rest are to treat the side effects.

The doctor removing Brinleys port access.

Nothing we love more than to see this little girl smile. :)

Having fun with the nurse; they have all been so amazing. 

Brinley wanted to drive all the cars before going home. :)

Brinley got to pick out a few hats because it was her last day. She looks so stinkin cute. :)

Leaving our unit to go home!!

Made a stop at the gift shop in the hospital to get her brothers and her a toy. Of course the 50 she received in the hospital couldn't possibly be enough. ;) Spoiled little girl haha but it's hard not to when you watch her suffer.

So so happy that she FINALLY gets to come home. :)

Car ride home, she was so so tired.

Only thing she wanted to do when she got home was lay in her own bed. My mom offered Brinley to lay in her bed but she wanted her own. And Jaxon took such great care of her; giving her candy!

Brinley has been doing so good at home, she's more energetic and happy.  She hasn't had any severe mood swings yet and she is eating so much better.  Today was overall a great day!

It is so wonderful to be home. Thank you for all your prayers, love and support! Everyone has been so amazing. We know our long journey will be easier because of our amazing family and friends. 

Day 5

Brinley woke up this morning quite angry and yelling. She is on steroids for the first 28 days and that causes severe mood swings as well as water retention. She will have chipmunk cheeks too. 2 days down, 26 to go.  45 mins later she is happy and sweet; letting Sammy feed her and lay with her. Which is huge. Usually it's mommy only. Thankful for semi fast mood swings. 

Brinley has been skipping pain medication doses. She's been going like 8 hrs in between instead of 4. She has jaw pain which is a side effect from one of her medications. But we found a way to help by soaking a pink mouth swab in cold water and letting her rub it in her mouth. She likes it a lot. Her blood pressure is to high so she is starting medication for that today.  It is a side effect from the steroids. So it should go away after she finishes with the steroids.  

Also, we started another blood transfusion today. Her HGB has been under 8 for 3 days (this is the number that was 3 when she came in to the hospital and 14 is normal). So when it's under 8 they will do a blood transfusion.

Cute/Sad/Funny story haha.

So Brinley got to have her IV unattached for a couple hours today. And she says to my mom, "I don't like being treated like a dog on a leash". My mom didn't understand what she was saying until they came to hook her back up for the transfusion and she said it again to the nurse. She was talking about how her IV is a leash. It's amazing how little kids can process things and relate it to other things. 

We love to see her smile :)

Here is another picture of her port.

This is the pink mouth swab that made her jaw feel better.

The nurses brought her some crafts to paint; she loved it!

Brinley was covering her mouth so my mom couldn't get the medicine in. It's a new one for her blood pressure and at first she said "mmmmm sugar" then she tried it again and said "yuck, that is not sugar" haha. She didn't want it anymore after that.

This picture was taken when she had really bad leg pain and a headache :(

On a wagon ride to FINALLY see the fish!! She was so so happy. :) She even got to leave her unit.