Brinley got a fever yesterday after the LP, she was 101.5, so David took her to the ER. They were there until 2 am, 7 hours, and finally released. She was quite sick after yesterday's procedure, vomiting and lethargic. Since her ANC was still pretty high, they finally let her go home, but it took so long. The ER was packed, David said there were people waiting down the hall. Thankfully they always get Brinley into a room right away so she doesn't have to be exposed to all the germs, but we still wait as long, just in our own room. It was frustrating, they finally determined it was because of the LP, they said her neutrophils were really high, and the oncologist said the body can release neutrophils when it is under stress, so they came to the conclusion that her body had the extra stress from all the pokes and she would recover fine at home. I was glad, I really didn't want her admitted, but I knew she looked pretty bad yesterday, so I was expecting it. Today she is feeling much better. The fever is gone and no more vomiting. Glad for that! The NP who did the procedure yesterday will not be doing it again on Brinley.

Bummer timing though, my family had planned a little shower/get together for us and David had to miss it. I still went, but I wished he could have gone. Needless to say he is very tired, so is Brinley.

Two updates - Jade's appt went really well, Dr. Ryan was very reassuring that he is quite confident this is just mono and we will continue to track the fevers and go back in a month. Hopefully this will be behind us soon - however after looking at the prospect of having two kids with cancer, we suddenly feel as though life is much easier. Maybe that scare was a reminder that things can always be worse, right?

Brinley's clinic did not go so well. Well, it went fine up until the lumbar puncture. Brinley's weight went up by almost a full pound, that was great news. Hopefully during maintenance she continues to grow normal. She has fallen under the 3% percentile for her age, so we need to see her grow. We got the rundown on the new phase, MAINTENANCE! I can't believe we made it to maintenance! Today she got IV vincristine, that is the one that has caused some fevers with her, hopefully not this time. At least her counts are good, so we probably wouldn't end up inpatient. Maintenance will go like this: Once a month she will go in for IV chemo. Every third visit she will get a lumbar puncture for chemo in her spine. She will take 5 days of the steroid per month, starting today. They call them "steroid pulses". She will get nightly chemo, 6-MP, orally every night until treatment is over, unless they have to hold chemo for low counts or illness. She will also take an oral med called methotrexate (the same chemo she gets in her spine) once a week. A lot of oral chemo, but much less IV chemo. We got an off treatment date!!! It's actually November of 2010. Less than 2 years! It's nice to have an actual date to look forward to. That date will not change, even if they have to hold her chemo.

After clinic, we went down to the RTU for her LP. If you don't know what that is yet, that is where they sedate her and stick a needle in her spine. It has two purposes, they draw out spinal fluid and check for leukemia cells, and they inject chemo into her spinal fluid. Today the nurse practitioner did the LP. She came out after a while and said she had to poke her 3 times and could only get blood out, no spinal fluid. She finally had to call the doctor to do it, and the oncologist got it the first try. When Brinley woke up she was in a lot of pain, these can cause severe headaches (Brinley has never had a headache with them before). They had to finally give her some pain medication to calm her down. She wouldn't eat or drink. I am very upset, from now on I will request only the oncologist do the procedure. The nurse practitioner said that this hardly ever happens with her doing the procedure, but she will not be trying again on Brinley. She vomited on the way home and is not feeling great now. It seems like there is always something with these LP's, last time it was what landed her inpatient with 104 fever. (that was from the sedation though). At least we are going to every 3 months now. We won't be back in there for another month!! Hooray!

We are getting ready for a lot of things right now! Brinley starts long term maintenance tomorrow! And steroids, yuck. Five days of them. Jade sees Dr. Ryan tomorrow, we will see what he says about this weird "viral" thing. My mom comes in town tomorrow, and my brother Matt and his wife Jen are in town for the weekend too. We are getting ready for baby #4. Marley, maybe Malia, we will see what she looks like to decide on a name. After all the doctors tomorrow, I am hoping to actually have a chance to get excited about this baby. All I can think of now is don't come yet!! Once Saturday hits, I will be SOOO ready, I am so uncomfortable and tired. Hopefully nothing eventful will happen to cheat us out of this happy time with our new baby.
Everyone is doing pretty well. Brinley's counts are GREAT so we have had a really good day without as much worry. It's funny how much more normal things feel when I know her counts are good. We went to the mall and I let her play on the dinosaur play area. She loved it, and I loved watching all the kids around us play and being able to be a part of it. It was great.
Jade is still the same with fever and stuff, once this goes away I will REALLY breathe a full sigh of relief. Right now I'm still kind of holding my breath until it goes away, surely it is because I am no longer oblivious to how quickly and unexpectedly things can turn into something serious. It will all be fine, I just want it gone.
Taylor is doing great, she has federation for piano this weekend, another thing I don't want to miss if I go into labor, so I guess Saturday afternoon would actually be the time we'll be ready. She is getting busy again with soccer, the outdoor season starts next week.
All in all, we couldn't ask for more. I am always so happy when things feel normal (aside from the 9 months pregnant and physically miserable :))
So here we are, lots of getting ready to do!!!

One more thing about Brinley, this has been her longest break from chemo since she started. It has been wonderful. I noticed her legs are getting a little substance to them and she feels heavier when I pick her up. She is not eating any different, so I really think the chemo slows down her growth. The nutritionist said it does, and I believe her, it is just interesting to actually watch it for myself. She has been so happy. Although it is a little scary to know she isn't getting any chemo, it has also been a blessing to be reminded of life without chemo.

Good news!!!! The bone scan came back perfectly normal!! We are breathing a HUGE sigh of relief. Now, since she is still having the fever, we will follow up with Dr. Ryan on Friday still, but I think everything so far has pointed to a virus, probably mono, and we don't have much reason to believe otherwise. I cannot begin to tell you how scary that was and how relieved I am!!! I feel like having a party.....

I don't have any news yet, the dr's office said they never received the results. I called the hospital and they are going to resend them, I'm off for my ob/gyn appt, maybe I'll hear when I get back. Just wanted to let those of you waiting know.

We went to the hospital to do Jade's bone scan today. It went so well, I was so proud of her. If you remember, we only go in today if she did the test without sedation, so I was a little nervous about how she would do. She did perfect. They first put in an IV, and that was so hard because as the nurse was telling her what she was going to do Jade's lips started to quiver and her eyes filled up with tears, but she didn't make a peep. It was so sad. She was just nodding. Then when she actually did it she just wimpered and cried for a minute, I hate seeing my kids hurt :( My little Jade....but the actual scan couldn't have gone better. Jade was PERFECTLY still the whole time. She did great. I am sooooo glad we decided to do it without sedation, it was a peice of cake, got us in 3 days earlier, and saved us about $600! Go Jade!
We should have the results tomorrow morning, she said they would be faxing them tonight, so they should be sitting waiting when the doctor comes in tomorrow. We are praying for good news!!

We had a great weekend, we didn't stress too much about today's test for Jade. It helped Aunt Huenu was here visiting from St. George. It was so fun to have her here. Everytime she leaves, I find little evidences that she was here, like a little area that I've been meaning to clean that is suddenly clean, or a load of laundry that is suddenly folded. She kicks me out of the kitchen so she can do dishes, stuff like that. She is a great help and played with the kids a lot. It really was fun. While she was here, we realized Brinley's hair is coming back in. That is exciting, but I will miss her soft bald head so much. Since Huenu is really good with the camera, we asked if she would do a little "photo shoot" with each one of us and Brinley before he hair grows back in. They turned out so great, here area just a few of the pics she took.

Little angel.....




or little devil.....hmmmm.....


Jade and Brinley




Taylor and Brinley

Baby and Brinley

Daddy and Brinley

Mommy and Brinley

WE LOVE OUR LITTLE FIGHTER!

I just have to say what a wonderful husband I have. Last week, Taylor came home from school with the assignment to build an instrument that can change pitch and volume. Hmmmm, being the non-creative and lately very distracted person I am, I was annoyed. This was definately one of these projects that I could not make her come up with all on her own, it was pretty hard! But I didn't have time or energy to help her. So we came up with this......


two pencils tied together with a rubber band. It was pretty pathetic, but with the state of mind I was in last week, at least we came up with anything. Well, she also had to play a song with her instrument. At 9:00 the night before it was due, we went to try to play Mary had a Little Lamb, and it was near impossible. She was almost in a panic, embarassed to take her instrument to school, but I was tired and to the point of giving up, it was late. I started in on "You had all week to do this, now here it is at 9:00 the night before and we are in a panic trying to come up with something else! I'm sorry, you'll just have to suffer through having a cheezy instrument tomorrow!" There was much more said, I tend to go on and on sometimes :) but the point is she HAD been telling me about it all week, I just never got around to really helping her with it. So although I felt quite guilty I didn't know what else to do. David of course, overheard all of this. A little while later, Taylor and David were nowhere to be found. Then I heard giggling and laughing in the garage. Then I hear a drill. Then I heard some more laughing. I finally realized David was out with her making an instrument. He was tired too, we had plans to sit down and watch some TV together, but he could see how embarassed she was and couldn't let her take that rediculous instrument to school. So they worked and worked until about 11:00. I was in here listening to them as they made this memory so proud of the man I married. So glad that he had it in him to have a little compassion on her and was willing to sacrifice to help her when she needed it. Not only did he help her create something she was proud of, he turned a bad moment around, and they bonded and made a happy memory. Here is what they came up with.....




Afterwards, it was a complete turn around. She couldn't wait to take her instrument to school and instead of being embarassed of her project she was proud. She deserved that and I'm so glad David recognized it when I didn't. What a guy, I'm so lucky!