I haven't updated in a few days because it been a rough week, but for no reason in particular. I guess the sickness kept us in all week, and kept me in a foul mood (especially MY sickness!), and with Brinley being neutropenic, we are once again stuck. This being stuck home stuff is getting so tiring for all of us. All morning she has been saying "go bye bye!" Jade got to go to her cousin's house, but we can't go because we managed to pass on our virus to them as well Since Jade is on the tail end of it I figure she won't catch it again, we'll just do a good scrub down when she gets home. But Brinley is quite jealous of her sister's outing. I finally threw Brinley in the car today after we made a deal we would go to the store if she wears a mask. She HAPPILY agreed, obviously sick to death of being home too, and we went to Kohl's to return some stuff. She willingly wore her mask the whole time, and it was nice to get out. We have miraculously managed to keep her from getting this virus thus far and are quite proud of ourselves for it! I had already deemed it impossible, but now we know, hand washing and masks are key. Hopefully I am not speaking too soon.....

We have decided to take Brinley and Jade trick-or-treating, hopefully it is not too risky, we will just be sure she keeps her distance from people and we will bring along the hand sanitizer. She is so excited, she's going to be a mouse. Now that she's walking better, I think she will have fun.

I can't believe how exhausted I feel just from being home with Brinley all day. She is really draining lately, wanting to be held and played with most of the day. She has lost her appetite and I don't know why. She hasn't eaten more than 2 bites of eggs all day, and has refused most everything else I offer. I'm feeling in a bit of a rut and am trying to dig myself out of it. Hopefully next week will be better. Part of the problem is also that you would THINK being home all day would leave me with a nice clean house, since I am here all the time. But it's having the opposite effect, Brinley isn't letting me do anything, not even fold laundry, and she refuses to nap. AHhhhhhh! Frustration!!!!

Here's another downer: Taylor is in my favorite place. Disneyland. Which would be fine except I was supposed to be with her! We planned a trip with her friends before we moved from Vegas and me and another mom were going to take them to Disneyland. Taylor gave up a birthday party, all presents from us, and saved all her money to be able to go. We decided it was not very smart for me to go too, both financially and for the family, so I had to send her off. Luckily I know she is in great hands with her friend's mom, but I sure wish I was there with her. There's that Hanks in me again, bummed to miss the fun!

After listening to myself I realized I am really starting to sound like Eyore, woah-us me (sp?). So I shall post a teeny little positive paragraph, LOL. Fall is beautiful in Utah. All the leaves are so pretty and I love driving down the street and seeing all the leaves fly around me. We really love it here. Brinley is alive. We are surviving and this is feeling like our new life. Brinley's personality is back, and I cry every time I think about that awful month it was taken away, and here we are, appreciating how funny she is more than ever. We are settling into not getting enough sleep, constant medication, hospital and doctor visits, and it doesn't seem so bad anymore. Although I tear up often when I think of what we are going through, I still feel so grateful for how lucky we are. I had a particularly bad day this week, and received a phone call from a member of my church, who picked a bad time, or a good time, depending on how you look at it, to call. I cried her ear off, I couldn't stop. It was ridiculously embarrassing, but she was at my house within 2 hours with chicken noodle soup to help me feel better and a card. That night another member of our church brought us dinner. Alissa took my kids for a few hours so I could lie down and rest (I was quite sick) and I just thought about how lucky I am to have the support I have when things are rough. I am reminded of a talk from conference by Elder Wirthlin about loving our trials. Sounds crazy, right? I have loved the little things about this that have brought me joy, and there has been so many of them. And it is greater joy that I would expect to have, so I will LEARN to love this trial, even if it isn't until it is all over. Brinley is an angel to our family, I hate what she is going through, but if it means taking the bad along with her, we'll take it. We love our sweet Brinley. Surely there are more storms to come, and we will prepare as best we can for them, and then just survive. Right now I feel like that is exactly what we are doing, surviving, nothing more, nothing less.

David took Brinley to clinic today alone because I'm sick and didn't dare risk getting any of the cancer patients there sick too. She did really well, but her ANC plumetted, it's at 500 now. At the hospital last week it was 5000! So now I'm really nervous about her catching this virus with her immune system not working well. So we will not be able to take her places again.

She got sedated again for the chemo in her spine (LP), and David said it was the best one yet. She didn't wake up crying, and the anesthesiologist said she did great the whole time. That was good news. She will get a break from the LP's next week, and we won't even have to go to clinic. So we go back in 2 weeks and begin the new phase, i believe! Interim Maintenance is next. It seems like she is breezing through Consolidation so far, 2 more weeks!

As for the rest of us, Jade perked up a little today with the antibiotic started, and I am running a fever but trying to pretend I'm not sick. I don't want to be out for days, so I am trying to fake my body out. It's working a little bit, but I may have to enlist some of the other family members to do some of the cleaning today. Especially with her ANC so low, I need the house germ free. Good luck with that right?

Quick update - I went to my Ob/gyn appt today, and found out we are having another GIRL!! David was not one bit surprised, but I really thought this one would be a boy. I screamed and laughed really loud when the doc told us, all the nurses outside said they heard all the commotion from inside our room. It was funny. So we will have no boys, since this is our last one. JD - I would love to know the probability of having 4 girls!!

Then it was off to the doctor for Jade, she has been so, so sick this week, and we were getting nervous, then her ear started hurting this morning/middle of the night. So I took her in and got some antibiotics for an ear infection, BUT the pediatrician wants her to go to an ear specialist to get her ears cleaned out, he said her ears for some reason produce a lot of wax from the inside, and so he wants them to check her out. I am so sick of doctors!!! No offense to any of you wonderful people in the medical profession, but we have had our fill!!

Tomorrow will be our trip to the hospital for clinic and another LP for chemo in her spine. I'm starting to get sick, so if I have the same virus, I should have a sore throat for a couple of days then be totally out of it by Wednesday or so. I am hoping I don't get it as bad as the other kids. So far Brinley hasn't caught it, but I don't know how long we can keep it away from her, especially if I have it! It's not like David can take a week off to keep me away from her! So I'm washing my hands like crazy and trying to wear a mask as much as I can around the house. It is such a nasty virus!

Brinley is walking better. She's a little unsteady and nervous, but she is little by little converting back to walking. She's doing great!

Life is good! We are happy!

I just have to give credit to all the cancer kids out there. I have learned so much in a world I barely even knew existed. If you are experiencing this for the first time with us (I post often, probably too often :) so you probably feel like you know a lot more about it too) I thought I would share some of the things that these kids go through, because they go through so much and people have no idea. I joined an online group of parents all with children that have ALL, and I have learned so much from their experiences. They are amazing people, most of them have suffered more than we have (they have been at it much longer) and the children have suffered so much more than Brinley. I know of a girl who was hospitalized for weeks with sores in her mouth, through her throat, to her asophagus, through her intestines all the way to her rectum. Her body could not heal them because she had no white blood cells, so she had to lay there with a morphine drip for weeks, in severe pain, waiting for her body to build back up the white blood cells so she could heal. And then start chemo again. She was about 3. I know of a girl who went through chemo at 2 years old, only to relapse, and go through it again at 7. All of the torture, again, only much more agressive. And she is smiling in her pictures. I know of a 9-year-old boy who was beginning induction, ready for the fight, got diahhrea, went to the hospital, and did not make it. There is a boy who is nearing the end of his treatment and is suffering with sores between all of his fingers, under his fingernails, and cannot physically keep up with the other kids his age because of all the chemo.

At clinic they had a wish wall up, where the kids could put down a wish. One of them said "I wish there was no cancer", another read "I wish I didn't have stupid cancer". It is heartbreaking to be this close to so many children in pain, emotionally, physically. How did I never see this before? Sure, I knew it was out there, and my heart went out to those who suffered from it, but it is so different being surrounded by it. Did anyone else watch Extreme Home Makeover yesterday? They rebuilt the house of a boy named Job who got leukemia when he was 4, with a 10% chance of survival. He survived, but because of the chemo, ended up with lung problems, being on a ventilator for a year. Then he had to have a double lung transplant, and is still suffering in a wheelchair, taking many meds that make his face and body swell up (looked to me like those awful steroids!). David and I had tears in our eyes the whole show (okay, so David had tears in his eyes, and I bawled the whole time!) It was soooo sad and inspirational at the same time. This little 10-year-old boy had suffered SO MUCH in his short life. You could see how sick he was. His parents were amazing. His mom said something that I have absolutely discovered to be true. She said that one good thing that has come of this is that she has learned to appreciate the things that everyone else takes for granted. She said the heard her kids up late giggling one night and just laid in bed and cried, loving every second of it. His Dad said he wishes he could just take the look on his son's face when he saw his room and bottle it up, then open it whenever he needed to see his smile. Let me know if anyone else saw it. It was great.

All these kids suffering, in pain, not living normal lives. I just wanted to recognize our cancer kids and give them the credit they deserve, for having to go through so much and such a young age. They are amazing and we can all learn something from these tough little kids.

I'll post an update later today after all of our doc appts, we have a couple today, so check back later!