Finally we got to come home today! Brinley slept good last night, her heartrate was still quite low, but they said it was okay. We just had to hear the machine beep every few minutes...I made David stay with me this time because it was so scary the night before. But we still slept pretty good. She woke up quite happy. She got her shot at 9 and then we did some more training to take her home. David and Lidia (David's parents) arrived for the weekend. At around 12:00 we got the release papers and were on our way. I told Brinley were were going home and she was sooo happy. She said "and my toys!" She must have been pretty bored sitting in a bed all day!

I can't describe how happy it felt to come home. After being in a little hospital room away from Taylor and Jade for a whole week had been like torture! Not to mention people coming in and bugging you every ten minutes. And watching Brin go through all that was rough. Melanie, Aunt Nancy, and Dad had the house all cleaned and disenfected for us. Ahh, it was so great. Brinley was so happy to be home. We are trying to get her to eat and drink and keeping everyone's hands washed. We do not want to end up back there if we can help it!! Apparently if she even gets a fever it's to the emergency room for her! Tomorrow morning the home health nurse is coming to help us until we get comfortable flushing her central line and cleaning and changing the dressing on it. I'm still not ready to take that on, it's too scary!

Before bed David and his dad gave her a blessing and she went to bed pretty good. We'll see how the night goes! We are beginning what sounds like a long road, but we feel ready for it and we have the help to get us through! We won't be going to church tomorrow, but we were told there will be a ward fast for Brinley. I think that will really help. Thanks everybody!! WE LOVE YOU ALL!

Monsters Inc. was the movie of choice. We watched it like 30 times.

Mommy and Brin

One of our Doctors. (notice Brinley's face... "what are you gonna do to me now") :)

Coming out of the hospital we have to wear masks.

We're gonna fight this!!

Home sweet home.

After the rough night last night the day started out okay. She is getting a little out of control with her temper tantrums, we have to just let it run it's course. I think it is the steroids, the doctor said that can make her quite angry and out of control. Plus being so tired doesn't help. We have had people in and out all day long, nurses, doctors, educators, etc. so it's been busy, but we are learning a lot. It still looks good for going home tomorrow.

Brinley just had a couple simple tests today, a heart ultrasound and a chest x-ray. I think they were pretty normal because no one said anything about them. Not much to report today! We had a visitor from a family who's daughter plays soccer with Taylor and their daughter had leukemia a few years back and is done with her treatment. It was so nice to talk with someone who has already been through it. They have a lot to share with us and it will be nice to have them to talk to.

Just some thoughts since I have a few minutes. This has been such a hard week for us. We feel like our lives have been turned upside down. We have felt the support and compassion from our family and friends and even from those who don't even know us personally. That has been so wonderful to experience. I wouldn't even know where to start thanking people for all they have done, meals, babysitting (NANNY DAD!), yardwork, e-mails wanting to help in any way, it has been overwhelming. I just want to say it has not gone unnoticed and we can feel all of the prayers that have been said for us. We have had a strength that we didn't know was there, and I think it is because of all those family and friends praying for us. Thank you for your strength and support! We could not get through this without you!!! We love you all so much!!

Yummy breakfast!

This is what thumbs up looks like to Brin :)

Still able to pull off a cute smile :)

This is Lilly... the theorapy dog. Brinley loved her!

Taylor comes to spend some time w/ sis.

Brinley was pretty happy today. We got a lot of smiles and the nurses finally got to see her real personality. It was nice. It was pretty quiet for her and I think she enjoyed not being bugged every hour for some test. We got a little education on how to care for her central line at home, changing the dressing and making sure it doesn't get an infection. The nurse demonstrated and it made me woozy. I had to sit down, I don't have a strong stomach for that stuff, especially pregnant!

In the afternoon they said she would need a blood transfusion. That sounded scary to me but the doctors were very reassuring that it was not a huge deal and it would be the first of several probably. She had been really pale all day, and the transfusion brought some color back to her face. she also seemed to have a little more energy. I guess the chemo kills all immature cells, leukemic or not (all leukemic cells are immature, they never mature and die, so they just keep splitting and splitting and crowd out the other normal cells) so a lot of her red blood cells were killed from the chemo. The transfusion put those cells back.

The night was pretty bad, though. For some reason they don't know, her heart rate dropped really low while she was sleeping. Her normal heartrate since we have been here has been about 110, and she was down to the 40's at times. So at 2AM she had to get an EKG where they put all the wires on your chest to check your heart. She was so mad, she screamed and screamed. She hadn't had her pain meds because she had been sleeping, so it seemed like it was hurting her. They gave her the medication and after 10 minutes or so she finally calmed down enough to get the reading. That came back fine, so they just kept an eye on her the rest of the night. Every time her heartrate would be below 50, the machine would start beeping, and I would jump out of bed and watch the monitor. The nurse kept coming in and trying to wake her up a bit because that would make her heartrate go back up. It was a long night. I finally called David at 6 to come in with me. Once she woke up in the morning, her heartrate went back to normal and she has been fine ever since. So we'll see how tonight goes.


Nurse Emily... She was the best!

Ok... so this is her central line. We have to change that dressing every week.

Brinley was awakened at 6 AM because she was running a fever, and every time she has a fever they have to draw blood to see if she has an infection. So they couldn't wait for her to wake up. Luckily the nurse drawing the blood was wonderful! She was in and out so quickly brinley hardly had time to cry. We had gone through some bad blood draws, so I was relieved to see it go so easy. That would be the last one she would have, because today they would put in her central line. That is a tube going into her chest, under her skin and into a vein that goes into her heart. That is how the administer the chemotherapy because it can burn the skin if you do it through a needle. It must be some pretty powerful stuff, because I have to wear gloves to change her diaper 48 hours after she has had the chemo. So the central line will be what they use for IV's, blood draws, and to give her any medicine. The tube sticks right out of her chest and it's a pretty good size, so they tape it down so she can't pull it out, but we have to be pretty careful. It makes me nervous.

Before that, though, came the good news. My Aunt Nancy happened to be visiting when the doctor came in, so she stayed with Brinley while we went to talk to the doctor. Thanks Aunt Nancy! She told us she has ALL - Acute lymphoblastic leukemia. That was great news. That put her survival rate at 90+%. We went down to lunch in the cafeteria since we had someone to watch brin for a minute, and were laughing at ourselves for being so happy that our daughter has ALL. But the thought of losing her had been unbearable, and we knew at that point that she would probably survive. And that was the best news we had had in a long time! That made us in good spirits.

They gave us the treatment plan after that. I'll try to give a quick outline, it's still new to me so I'm still learning but here's what I got: She will be given several medicines for the first month. First of all the chemo will be once a week. After the first four days, she will get a shot and if she has no allergic reactions, she can go home. That should be Saturday. Then wednesday, we will go back for her second dose of chemo. they will check her blood count and give her a transfusion if the red blood cells are low. So donate blood if you can!! They will do that ever week the first month. Also the first week, she will get another bone marrow biopsy and that will determine how well the treatment is working. It sounds like this will be a difficult time. She has to take a steroid and the doc said she will get something like "roid rage" and be somewhat out of control. So we will have to deal with that. She said especially at 2 years old, she will be having a lot of temper tantrums. She won't know how to handle her frustration and can't talk about it, so she will be acting it out a lot. At the end of the month, they expect the leukemia to be completely gone. They have to continue treating it though, or it will come back 100 percent. So the next step depends on the results of the bone marrow biopsy. They will be more agressive if it is not gone, or less agressive if it is. The next phase will be lots of spinal taps and chemo. That's about 2 months or so. We'll learn more as we see how the first month goes. Then we have 4 more months of chemo, and she should go into a maintenance phase, which is supposed to be quite peaceful. That will happen to be right around the time we have the baby, thank goodness! So that's the long term plan. It will total about 2 1/2 years, but it is the better of the treatments. The other treatment for AML is four months in the hospital for very agressive chemo, so we'll take the 2 1/2 years! Let's pray everything goes according to plan!

The surgery went well. While they were sedated they also did a spinal tap and put some chemo into her spine. (apparantly leukemia likes to hide there and the normal chemo can't get to it. Smart little buggers.) When she woke up they only let one parent back there. So I went back, and when she woke up and saw me, she started crying for her daddy. She wouldn't let me even touch her!! The nurses had to hurry and get David to come back so she would calm down. Finally David came back and held her and he had to sit on the bed with her while we wheeled her back to the room. It was kind of funny, he was a little embarassed to be wheeled around in a children's hospital. lol.

The day ended rough though, as usual, with brinley just coming out of the surgery and being tired and hurting. So the gave her some more morphine (her new best friend) and then her oxygen level dropped too low. So we had to hold the oxygen mask by her face and she was MAD! After a half hour of fighting with her, the nurse was going to have to put the oxygen tubes in because she refused to let us hold the mask by her face. Finally the nurse decided to let her fall asleep first, then we snuck the mask in by her pillow so she wouldnt notice.

She got her first dose of chemo after she fell asleep. The nurse put it in and she didn't even budge she was so tired. It went just fine. She slept all night again, it had been a long day for little Brin.

Getting mentally ready for surgery

Daddy and Brin get to ride through the hospital on the bed after surgery.

Long day makes baby really sad. :(

Finally able to get some rest

They did the bone marrow biopsy and David took her down this time. I was feeling really sick, I had only gotten 6 hours of sleep in 3 days, so I was hoping to get a couple hours of sleep. Of course, I couldn't. They sedated her again for the test. When she woke up she was completely out of control and we couldn't calm her down. They finally gave her some morphine and she immediately calmed down. We figured she must have been in pain. I guess the needle they use had to be pretty fat to get out the marrow because it is spongy. So they say you can be pretty sore from it. Plus she doesn't do well with sedation, we found out the day before. She was crying for hours after and was grouchy the rest of the day.

The oncologist came in soon after the test and told us that they saw the leukemia cells right away and we would not have to wait for the lab results. But we would have to wait to see which type it was. ALL and AML are the two types. ALL has a much higher survival rate and the treatment is much less intense. So we had to wait a day or so to see if she had what we were hoping for - ALL. Then she could give us Brinley's survival rate.

David was very upset, but I felt kind of numb. I expected that and was ready for it when she told us. David was still holding out hope that they had been wrong. So that was it. It was a relief to know, I don't think I could have waited any longer not having an answer. It was a comfort to have an answer and gear up for what was next. At least we knew a little of what was next.

That day was rough. Brinley was so grouchy and mad and hurting, and we were so worried. I was exhausted and knew I had to sleep. I finally called my ob/gyn and told him our situation and that I had to rest or I would not be strong enough to help Brinley. He told me some sleeping pills I could take that were safe for the baby. After a very long day, we all fell asleep and slept all night for the first time. It felt wonderful!

Brinley had a rough night Sunday night. The spasms kept her up most of the night. David went home to be with Taylor and Jade. We finally got a couple hours of sleep at about 3 or 4, then they were in the room at 6 talking and taking blood. We talked to the resident pediatrician who explained what they would be looking for with the MRI. He said there were many possibilities, some simple to solve and some quite scary. They suspected a bone infection first, since that was the most common diagnosis. It would show up on the MRI. That was what `I figured it would be, and she would just get some anti-biotics for a few days and be fine. He said they would go through the list one by one if it was not a bone infection.

She was sedated for the test that morning, and very soon after the test, David was down getting some food, and three doctors came in to talk to me. Had I know what they were going to say, I would have asked that they wait for my husband. They started talking in doctor lingo, so I picked out words like "her bone marrow doesn't look good", "suspecting tumor", lots of scary words. I gathered that they were thinking it might be cancer, but I didn't realize how strongly the felt it was. Finally David came back and saw my face and knew something was wrong. They explained it to him too, then I asked what the chances were that is was cancer. He said 80-90%. That hit us like a truck. I knew at that point that she had it. I didn't need the official diagnosis. They stood there watching us break down for a minute, then FINALLY left and let us have a moment alone. Our sweet little Brinley had a disease in her little body that could take her life. It was devastating.

The oncologist came in later and talked about it a little. He said she would have to get a bone marrow biopsy to determine if it was leukemia. It is a cancer of the blood, but all the blood cells are made in the bone marrow. He said her bone marrow looked very blotchy when it is supposed to look solid. So they would take two samples of bone marrow, one from each hip. That reduced the risk that they will draw marrow from a good spot, and get a false negative result. He said they would look immediately on the slide and may be able to see if it is leukemia, but they probably wouldn't know for a few days. That test would be Tuesday.

Getting a foot tickle from cousin Tanner

Grandpa finally arrives to save the day

At 10:30 they decided to admit her to the hospital for testing. I knew something was wrong and had already decided I was not going home without some tests run, so I was relieved I didn't have to put up a fight! A big thanks to the radiologist who really pushed for testing, because he knew something looked wrong on her x-rays. They got in an IV and started with some blood tests. It was a really painful day for her. There were a lot of needles and her leg was in a lot of pain. They had put her in a splint, but apparantly the femur is a very painful bone to fracture. So she was given morphine for the pain and she was totally exhausted. She had not slept at all saturday night, and it was well into Sunday afternoon. She kept trying to fall asleep, but every time she would drift off, her muscles would spasm and her body would jerk awake and cause a lot of pain in her leg. So she went through the entire day having spasms and in pain, even with the morphine. She got x-rayed for every bone in her body, and there were no other fractures. She was not able to eat because they wanted her to do an MRI and would have to sedate her, but they didn't know when. Finally at 3 or so, they came in and said she could eat because they couldn't get the MRI done until the next day. So I gave her 2 fishie crackers, and some apple juice (that was all she would eat). Ten minutes later, the nurse came in and said "you didn't feed her yet did you?" I said she had the crackers, and she said they had decided to do the MRI that day, and we would have to start all over again with a 6 hour fast because of 2 crackers!!! So the MRI was scheduled at 9PM. At 7 the nurse came in again and said they could not do it until the next day after all because someone forgot to schedule someone to sedate her. We had starved her all day long for nothing. I was pretty upset. We got her some food and she wolfed it down!

Femur fractures are so painful :(

Finally sisters can come visit
She hadn't slept since the night before, and this was around 7 or 9 PM.

Finally something to eat!!

Rough day! :(

About a month ago we were visiting Las Vegas and Brinley tripped and fell and seemed to be in quite a bit of pain. She wouldn't walk on her leg that night, and was limping for about a week after that. It wasn't much of a fall, but we were concerned about the limping so we took her to her doctor. He ordered x-rays and told us it was fractured and we should go to the fracture clinic at the hospital. At the fracture clinic, they didn't see any fracture, so they did not cast it. A couple days later, she was playing at the park and fell down off a step and was in a lot of pain, so thinking she had reinjured her leg, we took her to the ER. They x-rayed and told us that it actuallY HAD been fractured (grrrr) but was pretty much healed. They splinted it and sent us home. After we took it off she was still limping for 2 more weeks. I was concerned so I called the fracture clinic and made another appointment to check it out. We didn't make it to that appt, because that Saturday, 8/30, she tripped on the carpet and was hysterical in pain. It also was not much of a fall, a normal toddler clumsy stumble, so we tried to put her to bed, but she was up all night in pain. At 5:00 AM David took her to the ER and found out she had now fractured her femur. David called me at 7:30 and said they were going to run some tests to find out why she was fracturing from such small falls.

The night she got the second fracture. Laying with mommy was the only way to sleep

At the emergency room before they told us that we were staying