I took Brinley to clinic on Monday with a fever and she got another dose of antibiotics. The NP said her ear looks pretty infected, and looking at her blood counts made her think it was bacterial. So they put her on an oral antibiotic as well, and she is feeling so much better.

I somehow got sick yesterday and was throwing up, coupled with a massive headache. Lovely. I told David not to, but he came home early anyway to take care of me. I love him. He has had a lot of caretaking to do this month, and I went to bed early and woke up this morning to a clean house. Could I ask for a better husband?

And for those of you who are saying to yourself right now "maybe she's pregnant", nope. There is less than 1% chance of that, if you catch my drift, soooo, think again. It must have been some little bug or something, or maybe just a lack of sleep/stress thing. I am feeling better today, my mom arranged for my grandma to bring me some chicken noodle soup and it was delicious. I also have the best mom and grandma in the world!!!!!!

I am up to my eyeballs in frustration and am hoping to catch a break here soon. I have a lot to do.

Why, oh why, did I dare to say we would have a wonderful normal couple weeks until next clinic visit? Oh, I have angered the fever gods and they are teaching me a lesson! I taunted them, I should have know the second I hit "publish post" that they would be after us for that blatant disregard of the fact that we are constantly at their mercy.

It went like this:

Friday night, right when clinic closes, a low fever slithers in. Brinley starts complaining of an earache that progressively gets worse. I call oncology, and we agree it is viral since a cough had appeared that morning. She tells me to give her oxycodone, for pain and call in morning, maybe morning doc can call in a scrip to help us avoid the OUTRAGEOUS co-pays for ER and quick care.

Saturday morning: Fever sticks around, but stays low, ear pain is excruciating, oxycodone is not even touching it. Oncology says to try some eardrops we happened to already have, doesn't want to call in a prescription because it may be a viral ear infection, and antibiotics wouldn't do anything for it. I have no idea where this came from, nobody else in the house is sick and it came out of nowhere. I am concerned about the ear infection, but agree to try the drops. I secretly wish for our oncologist, who we are comfortable with, to be on call for us 24 hours a day, but I don't think she would be very happy about that...

All day Saturday, crying, inconsolable, we can't try tylenol because it would mask a fever, and if it gets any higher we are supposed to bring her in. Oxycodone makes her feel awful and just isn't relieving the pain.

Saturday night, she finally falls asleep for a few minutes, and David and I sneak off to a wedding reception for 20 minutes (Dennis & Dani hold down the fort for us). We get home, and around 8:30 or 9 her fever spikes and it's off to the ER. She was very sick, lethargic, her eyes were red and puffy, and I was nervous this time, so we both went and D & D stayed with the kids. They get her right in, yay! This might be a quick one! Well, now I've angered the ER gods who make sure each ER visit gets it's full 6 hour allotment. Nurse comes to access port, poke 1 is unsuccessful. Poke 2, also unsuccessful. On poke 2, big quiet tears rolling down her cheeks, Brinley tells me quietly, "I don't want to do this." My heart rips in two, and once again I am helpless. I secretly wish I could teleport oncology nurses to us, but I don't think they would be very happy with me either. I just have to throw in that our nurse was lovely, kind and sweet, I mean nothing against her whatsoever. I just needed someone who could access her port the way the oncology nurses do.

Nurse calls IV team to access port. By this time, EMLA cream (numbing cream) has worn off and there is not time to wait for another application, we need to administer the antibiotic quickly. Nurse and I agree on this, antibiotics are more important. Poke 3, Brinley screams harder, all 4 of us hold her down. Success, blood draws out. Time for heparin, oh no, it won't flush in. Since we JUST put bandage on, and moving things around aren't helping, we need to take bandage off. FYI, bandage removal is worse for Brinley than port access. Nurse starts to tear off bandage, mama bear tells her they need to find some adhesive removal before they remove that bandage. They are annoyed but find it. IV nurse is not very liberal with the application of the adhesive removal, and mom resists the urge to push her out of the way and do it myself. Thinking back, I think I might do just that next time. It doesn't HAVE to hurt if you just use a little patience. IV nurse starts moving needle around, Brinley is screaming at the top of her lungs "DADDY, IT'S HURTING ME!" Mom says it would be easier if they would just try reaccessing it, with 2 seconds of screaming, as opposed to moving needle around again and again. IV nurse complies, feels awful, deaccesses and finds a big clot of blood at the end of the needle. Poke 4 is successful.

We wait, and wait, and wait for antibiotic that should have been administered, since we didn't have time to reapply EMLA cream to port because of it's urgency. David asks nurse where antibiotic is, nurse says somehow it didn't get ordered from pharmacy, so we are waiting now. Oops. About 4 hours after walking through the doors, antibiotic is finally administered. Remember, it should be administered within 1 hour.

1:45 AM we get counts and they look great. I feel okay to go home now, so I start driving home. I get home, only to find out it is actually 3:15 instead of 2:15, thank you daylight savings gods. Thank you for stealing an hour of the teeny tiny sleep we will be getting. I have officially converted to the group of people who hate daylight savings. 4:15 AM, David and Brinley get home, I burst David's bubble right off the bat by telling him the actual time. Brinley wakes up a few times after that.

I made it to church, and taught my lesson at Sunday School. I love, love, love my class. I had promised treats, and showed up empty handed, but they all agreed I had a legitimate excuse. They make me laugh, and completely cheered me up. They are a great group of teenagers.

We were given the OK to administer Tylenol for the pain and fever for 24 hours and follow up with clinic Monday morning if she still has a fever, which as of bedtime tonight she did. The Tylenol has made a world of difference, she feels so much better than when she is taking oxycodone. She is still in pain, but not so groggy and miserable. I will ask for another alternative next time we are at clinic, which might be tomorrow.

Anyhow, I have learned my lesson, normal should not be in my vocabulary unless I am speaking past tense. I will never again predict a future normal. Let the fever gods hear it.....

disclaimer: I still love Primary Children's Hospital. Anything stated in this post is a direct result of lack of sleep and should not be taken out of context.

We made it! I said I'd see you on the other side, so here we are! Brinley is feeling much better after this round of IV chemo and we are hoping to have a few very good weeks before we go back in. This one wasn't so bad, she never woke up in the middle of the night, that's always a good thing. David has a theory that she gets insomnia every other time, and sure enough, he was right this time. Which means next time she should be waking up, we'll see if his little theory is right next time too...She did have a lot of pain during the first few days, it can be hard to manage and you just feel helpless to her endless crying and frustration. But now it's over and she has one more under her belt, which means she has one less to go!!! And the neuropathy was not as bad, she only complained about it about 4 times, I was so glad.

We have had a chaotic month, with all the sickness and hospital runs, then chemo. Then I had to get all 4 wisdom teeth out last week. It was pretty awful by the way! I got dry socket, the thing I was most worried about and took special care to follow ALL of the instructions so I wouldn't get it! The oral surgeon did some serious digging in my jaw, and I'm an old lady and can't handle that kind of stuff! I'm still not feeling so great, hence the lack of updates. I'm glad I'll never have to do that again.

On the funny side, David videotaped me after I woke up, yes I got sedated, and it was really hilarious. It was like a whole different person talking, we have gotten some good laughs watching it. I'll give you the funniest line. "What did they give me, a toothbrush?" words slurring, as I dig through the bag they gave me. "Gauze!! They gave me gauze!! I paid them $1200.00 and they give me GAUZE! Usually when you go to the dentist you get some kind of special prize." Yes that came out of my mouth, I am still a child at heart who wants a special prize when leaving the dentist's office.

I think we'll be in normal mode for a good 2 weeks now, yay for normal! Thanks for checking in!!

Brinley had her clinic visit on Thursday. We brought the camera this time! This place is such a big part of her life, I figure I should have lots of pictures for her to look at when she's older. First we checked in.

Here is the nurse preparing to access her port. It has to be cleaned really well and they need to be sterile to make sure no bacteria sneak in there...

Then they put the needle in, Brinley is getting so much better at it. She always gets nervous, then when it is over she says "that didn't even hurt!" Like she's surprised or something, every single time.

Up close, this is what the needle looks like. Then they put a bandage over it and keep it in until she is done with all her chemo and meds. Hers sticks out more than most kids because of the location, and, well, because she is a skinny minny.

We chatted with our oncologist for a while, I had a lot of questions this time. I asked about the neuropathy she was experiencing last month. There is a medicine they can give her to help, but it is not a medicine that we can just give as needed, she has to take it 3x/day all the time. So we decided to see how this month goes and if it is like last month or worse, we will probably try it. I just don't think she should have to suffer through it.

Then we headed down to the RTU for her lumbar puncture.

They usually have David hold her for the sedation, only one of us can go back. I did it once and I didn't like seeing her like that, and David likes to be the one to go back, so that worked out. She had her favorite sparkly tu-tu over her clothes.

This time they had her lie down and smell strawberry scented oxygen, and that really relaxed her. She usually cries a little bit, but this time she was completely relaxed when he put the sedation drug through her port.

We asked one of the nurses to take pictures this time, since we have never actually seen the procedure. This is the preparation, then they stick a needle into her spine, get some spinal fluid to check for cancer cells, then inject IV methotrexate to prevent relapse in her spinal fluid. We got pictures of the whole procedure, but this is as far as I'll go this time, it is quite the needle they stick in there. And in case you didn't already know, that is NOT blood on her. We have wonderful doctors who do a great job and I am thankful they allowed us to have pictures of the procedure so we know what goes on with our daughter when we can't be there.

When she wakes up, they go get us right away, sometimes she is a little slow waking up, and we never know how she will be.

She was especially groggy this time, the tears are because she had waited ALL day for a "big pretzel", or "the daddy pretzel" and we made her drink before she could get it to make sure she would keep something down. She was quite bent out of shape about that.

Not a big pretzel yet, but after fasting all morning, she was satisfied with chips.

Back upstairs to clinic for a big pretzel, chemo and pentamidine, the nurse is de-accessing her port now, which is actually worse for Brinley than the access. She hates the dressing coming off.

After arriving at 9:00, we finally head out around 2:30.

Her counts were right where they should be, her ANC is 1200, so we will leave her chemo alone for now. This may just be the right dose for her. So she is still at 25% or methotrexate and 50% oral 6MP.

Tomorrow and Sunday should be the days she feels the absolute worst, with the chemo steroids combo, then we will be dealing with steroids, the drug that turns angels into monsters. It will be particularly hard this time, especially for David, because I am getting all 4 wisdom teeth out Tuesday and he will be on his own pretty much. He's going to stay home the rest of the week, I think I have the best husband in the world. We're taking a deep breath and going under.......see you on the other side!

I just wanted to address a few questions that are asked to me quite often. Not that I mind answering them ever, but these are the most common questions I get and their answers, in case you have ever wanted to ask:

-How did you find out Brinley has cancer?

I guess if you went to the very beginning of our blog you already know this, but that seems a lifetime ago, so I will retell her diagnosis story. We were visiting family in Las Vegas in August '08, and Brinley fell all of a sudden on the carpet and wouldn't stop crying. None of us could figure out what had happened, but she wouldn't walk the rest of the day. She began walking with a limp the next day, and had a slight limp for 2 weeks after that. I finally took her in to my pediatrician and asked if he could check her out. He didn't see a limp at all, but I'm the mom, and I saw a limp. So he sent me to get her x-rayed and the found that she had fractured her tibea. We were referred to the fracture clinic at Primary's, where we were told she had NOT fractured her tibea, but that there was an "irregularity" on her bone, and this is something normal. One week later, we went to the park and Brinley took a step back onto a stair, and cried out in pain again. She wouldn't play the rest of the time and kept crying, so I took her to the ER that night, and they said she HAD in fact fractured her tibea, but it had started to heal already, since it had been 3 weeks, and so we kept a soft cast on it for about a week.

About two weeks after THAT in the beginning of September '08, Brinley tripped inside our house right on the carpet, and once again, cried in pain, even worse than before. We saw that she had barely tripped, and did not think it could possibly be fractured, but at 5am she was still awake, in pain, the Tylenol barely touching it, so David took her again to the ER. An x-ray showed a femur fracture. David called me about 7am and said they were probably going to keep her because it was odd for her to have 2 broken bones in such a short period of time and without major incidents. I began to panic, worked out babysitting and started driving to the hospital. I called my mom in tears, and she got onto the good old internet to research what could be causing this. She came across several options, then briefly stumbled onto cancer. It made my heart skip a beat, but we both quickly brushed off that option, that couldn't possibly happen to my family. When I got there they talked about sending her home, but I was not comfortable with that, and thankfully, neither was the radiologist. He later told me that he KNEW something was wrong with her x-rays and pushed really hard for them to run some tests. About a year later, during one of our ER visits, the doctor who saw her was our doctor again with one of her fevers. She told me she remembered everything about that visit, all the way down to the room number we were in, because Brinley was in so much pain, she felt so awful for her. She told me they talked about it being cancer, and they all thought it might be that, of course they didn't mention that to us.

The next day she got an MRI looking for a bone infection, the most likely culprit. I was lying in the hospital bed with Brinley, who was in a great deal of pain, and David walked out for some food. Three doctors came in and stood over me and told me that they saw some weird stuff in her bone marrow and they thought it was leukemia. They were about 80% sure of it. It was devastating. I looked at her, finally sleeping, and cried. When David came back they told him, and we both cried together. It was a day I will never forget. They did a bone marrow biopsy, which confirmed it was leukemia, and she got her broviac line put in and received her first dose of chemo the very next day, as she slept peacefully.

-I thought Brinley was in remission, why is she still in treatment?

Yes, Brinley is in remission. They got her in remission within the first month, which is what they hope to achieve. I was warned to be very careful with throwing around the word "remission" because it gives the false notion that treatment is over and all is hunky-dory. So while I will say my daughter "has" leukemia, I say that because she is still in treatment for it, however, there is no evidence of cancer in her marrow right now. What they have found is that if they don't continue to treat the cancer as if it was still there it will come back, guaranteed. Brinley's particular diagnosis, Acute Lymphyblastic Leukemia, has a 2 1/2 year treatment for girls, standard risk, and a 3 1/2 year treatment for boys. So she will be in treatment during the entire treatment protocol, regardless of remission. So yes, she is in remission, and no, life is not back to normal for her.

-Why is her hair growing back if she is still in treatment?

The first phase of treatment caused her hair to fall out. For the first 7 months, she received chemo once a week, several different types, many of them that kept her hair out that entire time. After the first 7 months, her chemo changed to once a month for IV chemo, and a daily oral chemo that does not cause hair loss. The medicine that caused her hair to fall out is not being given enough to cause hair loss. A very small percentage of children lose their hair again in maintenance. For the most part, children in maintenance look very normal, you would never know they are battling cancer. It can be deceiving because we expect children who are in the middle of chemotherapy to be bald and look sick.

-When will she be in the clear from the cancer coming back?

That chance will always be there, but here is what will happen when she goes off treatment in November. She will get checked every month for the first year, then she will got to every three months. That will happen for 5 years, then she will be considered "cured" and will have as much chance as any normal person of getting cancer. It is difficult to get statistics since research is ongoing and simply takes time to gather data.

-Since her immune system is so weak, can't she take an immune booster to help her fight infection?

This is one of the most common misconceptions. NO. Brinley's immune system is SUPPOSED to be suppressed. In order to get rid of the cancer cells, we have to kill all immature cells, good and bad. So if her white count is low, we can assume the cancer cells are mimicking those cells. The trick is keeping her immune system suppressed enough to not give the cancer cells an opportunity to multiply, while keeping her out of danger from infection with no white cells to fight bacteria. Any immune booster would multiply those white blood cells, and in turn be working against the chemo, multiplying cells that we are trying to suppress. It's all part of the dance, we just have to be careful of infection while she is immune-compromised.

-Why does she have to go to the hospital every time she gets a fever?

Since her immune system is suppressed, she is at high risk for infection. A fever in an indication of an infection. Nine times out of 10, it is NOT an infection. For example, we have been to the hospital for fever dozens of times, and only one of them turned out to be a blood infection (sepsis). And that one time was very scary, Brinley got very sick very fast, she was in-patient for a week and lost her broviac line because of it. So while every fever is not life threatening, (just a pain in the butt!), there is always that chance that she has sepsis and they take that very seriously. I am supposed to get her to a hospital within an hour if the fever is above 101, and she should be administered antibiotics with an hour of arriving at the hospital.

Another risk factor for infection is her port. Anytime there is something foreign in the body, there is an infection risk. And since we access it and inject things into her bloodstream there, there is always a chance to introduce bacteria into the bloodstream. So until her port is removed, she will have to get a culture with each fever to make sure she is not septic.

-Do you still need help?

This is a very hard question that I get asked a lot. Yes and no. There are times my life is a normal crazy like everyone else, so I would need help the same as anyone staying home with 4 crazy kids and way too much housework. Then there are times I wish I could send out an emergency S.O.S., when I am in real trouble. It would be nice if I could send out some kind of smoke symbol from my house, (like in old times before the telephone), that lets everyone know that I am in desperate need of help. Haha, that is a funny picture. Kristin is in trouble!! That would be so much easier than picking up the phone and just asking someone for help. How crazy is that? I know I have amazing neighbors who would rush to our aide if I were to do that. The problem is I can't seem to ask for help when I need it. So it's my own fault, because there is not a constant need, so people don't know when I do need it, yet I hate to inconvenience anyone else who is in the middle of their own crazy lives. I don't know that I will ever be able to do it unless I absolutely have to, like needing someone to watch the kids while I run to the hospital with Brinley. Just to do that is torture for me. I do have some wonderful friends and neighbors who ask me quite often if I need any help. I am lucky.

-How did she get cancer?

I guess it could be a hundred things, how can we ever know which one? I've been told too much milk, not enough milk, hot dogs, living close to a power line, not eating organic food, the speculation goes on. Honestly, we just don't know, and I imagine each child with cancer would have a different answer. It just happens, a cell mutates, and cancer is born. If there were one answer to that question they would have found it by now. I hope to know the answer to that someday, but I can't dwell too much on it or I will make myself crazy wondering if it was something I did wrong.

There you have it, the most common questions I get asked. If I missed anything and you have a question for us, I would love to answer it, just leave it as a comment.

Brinley had a fever yesterday and we went to clinic, but she was on the tail end of the virus and we probably could have just stayed home. She is feeling much better today, with just a little cough that I am hoping will be gone by the time she goes in for her LP next Thursday. Thank you for checking in and for your prayers. We truly have a wonderful support system and I am so thankful for offers to help.

I have a new niece I want to see, so the kids need to get all better soon!! Congratulations JD and Stacy!

I'll give a quick update on Brinley first off. We talked to clinic this morning, and since they are convinced it is viral, we don't have to go to the ER with a fever today, which is a very good thing, since it appeared again tonight. She felt pretty good all day (coughing like crazy though), but started to feel sick again before bed, and just woke up coughing and with a fever. They did say if she seems worse, of course, to bring her in. If the fever is there tomorrow, they will want to see her in clinic. The fevers seem to come at night, so I have the feeling if she gets one it will be after hours, bummer for us. That would be another ER visit.

When things get rough around here, my emotions get high. I seem to need to blog more when my emotions run wild so let the blogging begin.

I am sitting here alone, like so many other times, David had to go back into work because of missed hours this week. I will start by telling you that the unknown sometimes creeps it's way into my thoughts and gets the best of me. This is one of those times. You will hear me say so often that Brinley will be in treatment until November, then we are done. Wooohooo! Or are we? Yes, you can give me all the positive comments, encouragement, etc. that you want, but you know as well as I do that we just don't know. Let's be truthful for just a minute here. The cancer can come back. That is a fact. Statistics show about a 20% chance of relapse. 1 in 5. It isn't a pretty thought, but geez, cancer isn't pretty. It's very ugly actually.

Honestly, I believe we will be done in November. But oh my gosh, what if we are not? There is a knot that surfaces in my stomach every time I let myself go there. What if we are not to bid farewell to cancer forever in November? It can come back in a year. In two. Whenever those blasted cells can find a way to mutate, they can come back. I just don't know.

In life, we are so fearful of what we don't know. I am also GRATEFUL for what we don't know. I don't WANT to know if it's going to come back. The only way for me to live life to the fullest is to not know. You see, if I knew for certain it would NOT come back, I would never appreciate my good days, because I would have the knowledge that we would have endless good days, so it wouldn't matter so much. Those good days would not have as much meaning. How do you appreciate a glass of water when you have an endless stream of drinking water at your fingertips? Not knowing makes me thankful for those days that are so good because I don't know how many we will get. If I knew for certain the cancer WOULD come back, my hope would be lost, and losing hope is one of the most awful things to happen to a person. So we live with hope, being GRATEFUL for the unknown, and allow those thoughts to sneak in, but not take over. Some may say to keep those "what if's" out, because they allow fear in. I disagree. Those thoughts allow me to be grateful for the days that we have together, because none of us truly know how many we have. So long as those fears are in check and don't take over my life, I think not knowing is a blessing.

Another reason I am grateful to not know is because it allows me to rely on the Lord, because I know that HE knows, and I trust Him completely. I know that whatever happens, He is in control, and that is comforting. I can willingly accept that. I believe in a God that knows me personally. I believe in a God that comforts and heals. I am realistic, I know this life is supposed to be painful. We grow through our pain, so I don't think for one minute that I will not have pain if only I will do what is right. I believe bad things happen to good people. I know that little innocent children get cancer. Why? One of the questions on my list to ask.....but I believe that good people who suffer will be blessed beyond measure in the next life. I have faith in that. So we trudge through the unknown, and as my Grandma Hanks would say, "pull up our boot straps" and keep moving. And smell the roses on the way.

The founder of HopeKids, which you have probably heard me talk about, sent this message yesterday, right when I needed it.

"The word RACE is from the Greek AGON, from which we get the word agony. Our "race" in life is not a jog, but rather a demanding and grueling, sometimes agonizing race. It takes a massive effort to finish strong.

Likely you've noticed that many people don't finish. There are many on the side of the path. They used to be running. There was a time when they kept the pace. But then discouragement set in. They became tired. They didn't think the race would be this tough.

It is times like this that we need to realize that the race is not ours, but God's to finish. In our weakness, He is made strong. I say, "I am not able." He says, "I am." We don't have the answers. He does.

Listen closely... if we lift our eyes off of ourselves and our circumstances, it is much easier to see the path before us!

We can then run with peace and confidence. We can finish strong. "

Rob Cottrell

Brinley was teetering with a fever all day yesterday. I talked to the onc and they said if she had 100.3 for an hour we needed to bring her in for a culture and dose of IV antibiotics again. Well, it would go to 100.8, 15 minutes later it would be 99.5. This happened all day long. Until, of course, clinic was closed, then it decided to stick at 100.7 or so for over an hour. So I had to take her to the ER again. We decided to try a closer ER this time, even though we had sworn to never do that again. I just couldn't go sit at Primary's again for 7 hours. So we tried the new hospital in Riverton. I was really nervous, but it went great. Brinley's fever had disappeared when we got there of course, down to the 99's. But I was glad we went because it was back by the time we left. It only took 3 1/2 hours at this hospital, so we got home around 10:30pm. The nurse was wonderful and although she made me nervous because she does not have much experience with ports, she was able to access her on the first poke and we both breathed a sigh of relief. The took a chest X-ray and checked counts. Her ANC is headed downward, at 1200, so still high enough to come home, but went down quite a bit in one day. That can signify a virus, which we are all convinced this is. The chest x-ray showed mild viral bronchitis, and with her cough sounding so nasty the ER doctor wants me to follow up with clinic this morning to make sure they take a look at the x-ray, but he said in a normal healthy person he would not treat it. Brinley was her silly self, so I am not too worried, although I don't like the sound of her cough. When we got home, she was being a complete goofball, kissing herself in the mirror when I was trying to brush her teeth, driving us crazy with her silliness when we just wanted her in bed! Okay, it was kind of funny. David and I sat down and watched Lost, then tried to find the way to bed through the mess. Well, he stayed up to work and I found the bed.

Who knows what today will bring. I have a toothache and need to go to the dentist, but I guess cancer stuff trumps that, so I'll hold off until I know she is better. I am really hoping for a better day, Brinley has her IV chemo next week and I feel cheated out of our good time of the month. I'm hoping for a good few days before she goes in again.

We got home about 10:00 last night from the ER. Her ANC was 2200, so she got a dose of IV antibiotics, they drew a culture and we got to come home. It took forever, the ER was absolutely packed with sick kids. They redid the whole ER and now how a special "clean" waiting area for kids like Brinley. They are technically supposed to get antibiotics in her within an hour of her getting there I've been told, but it was more like 3. Since I was quite certain it is viral I didn't push it and wasn't too worried about her, since she was playing and happy. Besides, they had their hands full, one of the nurses told me they had to call in every nurse on call.

We got one of our favorite nurses, Chris. He knows what he's doing and always remembers Brinley. He calls her "bug". He hadn't seen her since her hair started growing back, so he kept saying how great she looks.

If the fever returns today we have to go into clinic and get another culture and another dose of antibiotics. At least it won't be the ER. She woke up at 2am with 101 fever and is still sleeping right now. Mylee is sick, so I don't want to ask anyone to babysit her, but I can't bring her to clinic with all those immune suppressed kids, so I'll have to figure something out. It is hard to not have my mom here, something about mom's, we feel like we can ask them to do anything and not feel guilty. Is that wrong? Anyhow, I miss you mom.

I am feeling some frustration, but how can you go through life without it, so I will deal with it. Thanks for checking in and thanks for your prayers. Funny to be asking for prayers for a common cold...that's the crazy cancer life.

Brinley's fever passed the 101 mark, so we are off to the ER and hoping for good counts so we won't be staying.

Today is one of my favorite holiday. Not because I love to get roses or chocolates. Not because I have someone special to share it with, not because of the chocolate or balloons or teddy bears. I love Valentine's Day because I have become aware of an emotion that is the sweetest thing in the whole world. Love. I love love. I love having relationships with people I love. Friends, family, kind-hearted people. I love this emotion and wouldn't even consider trading the heartache that comes with loving someone so intensely that when something happens to them it hurts so bad you don't know how you will survive. I love my family. I was feeling bad today about something. I came home and asked my family for a hug and it felt better. I just wanted to go home and be with people who love me for who I am.

So happy Valentine's Day to all the people I love! We had a great day, waffles w/ strawberries and whip cream for breakfast. Everything pink for dinner. I wrote my traditional Valentine's poem to my family and read it to them. It was a great day.

HOWEVER, Brinley popped a fever before bed and we were given the okay to watch her as long as it doesn't go above 101 or she seems really sick. So we'll be checking her through the night to make sure. I don't know if her c-diff is gone yet, her antibiotics end tomorrow. So we may be BACK at the hospital tomorrow to have her checked out. Hopefully not tonight, neither of us are up for a 6 hour ER trip. Ugh.

:) Hoping for a happy week! Hope you have one too!

Brinley's c-diff went away for a while, but it seems to have returned. We were at the hospital yesterday again and are going to try another antibiotic. Yesterday she woke up very sick, she fell asleep eating her breakfast. I got nervous and rushed her into clinic just in time for her to start feeling better, aside from the stomach cramping. Go figure. Oh well, better safe than sorry. Since there is not a fever involved and her counts are good we are going to see if this new antibiotic does the trick without having to stay at the hospital. Her bum is very, very sore and causing her a lot of pain, but she is happy nonetheless. Her stomach is huge, but it's not tender, which the oncologists say is a good thing.

I feel a little nutzy being so nervous about this c-diff, but any cancer parent will tell you, there are three words that will strike absolute fear into your heart. Relapse, bacteria, and fungus. Those are scary words for cancer patients, and I want nothing to do with any of them. So keep away from my Brinley bacteria!

Brinley's test came back positive for c-diff. I half expected that because of how painful her stomach cramps were, but since she had not been on antibiotics I also half expected it to be negative. Anyhow, since they got IV antibiotics in her right away she was feeling much better yesterday, and only had diarrhea once last night. I am glad we took her in when we did, it could have been serious. Scary stuff, that bacteria, to the immuno-compromised.

Brinley went in for chemo last Thursday, and in our roller coaster of cancer this has been one of the bigger hills. Which doesn't make sense, since I really like the hills, and I don't like this one, but hey, who says the analogy must make perfect sense. In fact, that just brought back a happy memory of Brinley on the roller coaster in Toon Town at DisneyWorld on our Make A Wish trip. She was so happy and wanted to go again and again. Anyway, back to reality.

Let's start from the beginning. Thursday's clinic visit went well and her counts looked pretty good. Her ANC was 1100, so if she is around there next month we are going to try and get her MTX up to 50% as well. (Her 6MP is already at 50%). That will make me feel a bit better. From a parents perspective, more chemo = less chance of the cancer coming back. The logical part of me knows better, but the scared part of me says let's get as much as we can before she goes off treatment.

Anyhow, she got her chemo, we had a nice visit with her oncologists and nurses (they feel more like friends than doctors sometimes), we went home and started the steroids. Friday morning David left for a fishing trip (a much deserved fishing trip I might add), but I was on my own Friday, Saaaaaaaaturday, and all day Suuuuuuuuuuuuuuuunday. Can you tell the days dragged? I don't know how single parents deal with steroid pulses on their own. Oh, poor Brinley was miserable. Okay, we were all miserable. She was up at night right off the bat this time. I will never, ever, ever be able to describe how awful these steroids are unless you are with us all 24 hours in the day. If you have been through them, you know what I am talking about. Her cravings this time: eggs, fruit and chocolate chips. Not bad. I am making light of this, but honestly, it was quite possible one of the worst weekends I have ever had. The vincristine mixed with the steroids left her feeling her worst Friday and Saturday. Saturday I had to take all the kids to Taylor's basketball game, and I'm quite certain the people sitting next to us thought I was the worst mother on the planet, they way I was letting my 3 year old carry on like that. Sometimes just to save face I want to have her wear a sign that says "I'm crying because I have chemo running through my veins, okay? You'd cry too."

Sunday she was still very sick and wanted to go to church so bad. I knew she could never sit through an hour of sacrament meeting, then 2 hours of primary on steroids, so I sent Taylor and Jade and stayed home with Brinley and Mylee. She was so sad, she kept crying saying "I PROMISE I won't cough on anyone!" How do I explain her sickness is not contagious, just completely unmanageable in a public place? Sunday night my brother in law, Dennis came over with Dani and Kaitlyn (Dani's sister) and I was so happy to have someone there to make Brinley happy if I were a dog I would have pounced on them and uncontrollably licked their faces. I'm sure they would have loved that. They provided a change of scenery for Brinley and it made her very happy.

She has been blessed with a new side effect of the vincristine this month and last month. (Hope you are catching the sarcasm.) She has started what she describes as "tickling" in her knees, hands and bum. Not a good tickling, I think she is describing more of a tingling, which can be one of the side effects of the vincristine. It is really making her crazy and she has been crying about it a lot. I tried some pain meds the NP told us to try, but didn't see much of a difference. It is worse this month than last, so I am nervous that it will progressively get worse for her. It is still lingering right now, but has subsided a bit, so I am hoping that it will be gone until next month. If it is neuropathy, I know there is something they can give her to ease the discomfort, and I am all about easing her discomfort, so I will ask about it at our next visit. In researching it, I've found that most of the time it will end when treatments ends, but sometimes can be a permanent long term effect of the chemo. Let's hope for the first.

THEN, on Tuesday Brinley started having diarrhea. It lasted all night, until about 4am, then she was up at 7:30 with it again, about every 10 minutes and REALLY bad stomach cramps. To the hospital we go, so they can check for c-diff. All the symptoms match, the severe stomach cramps, VERY stinky, but it is usually caused by an antibiotic, which Brinley has not recently had. We left them a nice sample, collected by the nurse. One of the pleasures of being a nurse: transferring the incredibly stinky stool sample into the cup. So they gave her a dose of antibiotics just in case it is c-diff and I should get the results today. Her bum is so, so sore, it just hasn't had a break :(

Anyway, ENOUGH ALREADY! Let's get some more of that normal feeling we have grown to appreciate and love so much last month! We want it back!!

And as for my sweet, adorable, hard working husband, I will be much less inclined to say "yes sweetie, go ahead, you deserve it!" next time he asks for a boys trip during steroid week. He had a blast, BTW, which eased my pain a little. He deserves a month vacation, truly, but it is what it is.

All together now: BOOOOOOOOOOO TO CHEMO!

(I can't say that without also adding a YAY to chemo for saving her life! Oh, the irony!)

"Today, I say that we are resilient, we are strong, we are determined. So let us raise our voices and make ourselves impossible to ignore, for no mere politics can stand against the power that lies in our stories and within our hearts, and we will not stop until we reach the day that our dreams becomes their reality and their hope is made manifest and childhood cancer is no more." -Sebastian Gillen, Childhood Cancer Survivor

I am back home after a wonderful, amazing, eventful, busy, exciting, scary trip. I'll start from the beginning and try to tell as much as I can.

SUNDAY

We arrived Sunday night to our hotel. It was beautiful and right on Capitol Hill. We went to the restaurant there because we were starving and there was nowhere around to eat. It was very fancy, and we walked in and there was nobody to seat us, so we started to seat ourselves. The hostess ran up and Melanie asked if we could just seat ourselves. She laughed out loud at us, then said no, do we have a reservation? The place was empty, mind you, and we said no, we just arrived. She left and came back saying she could "squeeze us in". We looked around at all the empty tables, gave each other a "don't look at me or I'm going to bust out laughing right now" look and managed to behave ourselves. Since we were paying for our own meals, we only ate there once! That started a series of hilarious events that continued all weekend. We were two fish out of water for sure. We had so many funny things happen, I haven't laughed like that for quite a while! This was our room, there was actually a pillow MENU. Yes, 8 different choices for pillows.

MONDAY

We had the morning to sightsee since check-in and meetings weren't until late afternoon. We had an offer from one of our blog followers, Heather, to show us around a bit. She showed us how to use the metro, and that saved us a LOT of walk time. Heather, thanks again, we loved meeting you!

First stop was the National Archives, gotta see the good old Declaration of Independence and the Constitution! It was so awesome, except for the part where we almost got kicked out for ACCIDENTALLY flashing our camera, it fades the documents. There was a photographer there who said she could turn off my flash, but in the meantime she flashed it. Totally not my fault, but the guard rushed over in an instant and gave us a good scolding. Now I feel guilty for contributing to the documents fading more than they already were :(

All of the security guards were so nice there. They were helpful and had a great deal of information to share, we just had to take a picture with this guard. He plays in a jazz band and was so fun.

Then we went to the Museum of American History, where we saw some really cool old American stuff. We saw Julia Child's kitchen she donated. The highlight was seeing the actual flag the Francis Scott Key saw when he wrote the Star Spangled Banner. I had NO IDEA we even still had that and it was HUGE! No cameras allowed, so no picture, but it was amazing.

The Washington Monument was always my favorite as a kid. Being in DC brought back so many childhood memories that were unexpected. It's funny how you don't appreciate something until you leave, Melanie and I were like 2 kids in a candy shop, there was so much cool stuff to see.

We did a lot of walking and both had sore feet at the end of each day, but it was worth it.

The Reflective pool right outside the Lincoln memorial. Taken from the top of the steps.

We put away the camera and checked in with Curesearch around 3 and started our Team Leader training. The explained all the things were were asking congress for and that was very helpful. It is a different language, but I am slowly starting to grasp it....a little. One of the main things we are requesting is for the full funding for the Caroline Walker Pryce Conquer Childhood Cancer Act. It was passed unanimously with no votes against it in 2008 and approved for $30 mil to go to the COG (Children's Oncology Group) for research each year. HOWEVER, we still have to fight for the actual FUNDING of it now. For 2010 we were given $4 mil of the $30 we should have received. Although that was an accomplishment, it still isn't good enough. We want the full $30 mil. That was our focal point, with several other asks for them. After the New Team Leader training, they had a welcome reception. We were able to mingle with other team leaders and we met some amazing people that I think will become very good friends. Everyone there has been touched by cancer, many have lost their children and many have survivors. Whatever their reason they were all there with the same passion I have in my heart for this. Sometimes I talk to people and wonder if I sound like a cukoo to them, because I get so worked up about it. There they were all driven with the same passion, to fight until childhood cancer is behind us, until every child can be told they have a cure. So I didn't feel like such a cukoo!! Melanie was the ONLY cancer aunt there, they all made a joke that she deserved to wear a "CANCER AUNT" button. I was proud to have her there with me. We also met the new president of CureSearch and he gave us all his vision for the organization.

After the reception we went to our room and started working on our strategy. We worked on it until about 1AM and kept changing our minds. We had it all written out, and it sounded too rehearsed. We tried notes, and kept forgetting points we wanted to make. We were so nervous, I was especially nervous, I just couldn't go to bed. Finally we decided to scrap it all and just speak from our hearts with a few major points we wanted to make. We went to bed, and despite the incredibly comfy beds, neither of us slept more than a couple hours. I woke up with a knot in my stomach. We went down to breakfast and the knot came with me unfortunately. They had a 7:30 breakfast and meeting. I could barely focus I was so nervous, but I managed to eat and listen a little. They had an oncologist guest speak who tried to explain one of the research projects to us, I followed a little bit and got lost a lot. One thing he said struck a cord though. He had a graph of ALL, which is the diagnosis Brinley has. He talked about the 90% cure rate. Then he took out the percentage of kids who have certain long term/permanent side effects from the harshness of the chemo. He took them out little by little, and ended up with only 8% of the kids diagnosed with ALL who are CURED completely with NO long term side effects, in essence, cured as if they never had it. Only 8%! There is SO much to do, even with the best of success rates that some of the childhood cancers have.

Then we were shuffled off to our meetings with our congressmen. Melanie and I rushed off to Capitol Hill. Or as Melanie would say we went to say "WUT UP Capitol Hill!" Our first meeting was with a staff member with Senator Orrin Hatch. After ending up in the wrong office in the wrong building, (long but very funny story) we made it with not a minute to spare. We were told in our meetings to remember that the staff members are very influential and are also very important to bring over to our cause. She was very nice and listened to everything we said. I was so afraid I would fumble and bumble the whole time, but I had prayed so hard for help that the words just flowed out from both of us. My nervousness disappeared and I was speaking from my heart for the Utah kids with cancer. It was so easy to do! I guess you are doing what you are supposed to be doing, the Lord helps you out where you need it. And it certainly isn't hard to plead a case for kids with cancer when I see them so much. We gave her our requests and she didn't rush us out or treat us as if we weren't important. She asked questions so that she could bring our requests to the Senator.

Next stop was with Senator Bennett. After the first appointment was over, my nervousness almost completely went away. The words were coming easier than I thought they would, so I was feeling much better. We thanked him for taking the time to meet personally, and the same thing happened. We were able to tell him about what the world of cancer is like and how desperate these kids need our help. He listened, we didn't feel GREAT about it, but he did hear us out. On our way out his staff member who was in the meeting with us followed us out. She was a tall, beautiful young woman who had been extremely professional in the meeting. She showed us out when we were done, and when we were outside of the office she told me that her little brother had ALL in the 80's and didn't survive. I was so caught off guard that the tears just started coming out. I was unprepared for that, because she had been so poised in the meeting, but she immediately started to cry as well. We talked for a short minute through our tears, then she said she had to hurry off to the bathroom (to compose herself again before going back in). It was quite the moment, I wondered what she was thinking listening to us talk about what kids with cancer go through.

Then we met with Congressman Rob Bishop. We were so grateful that he also was willing to meet us personally. I know they are such busy men, it really meant a lot, and many of our fellow team leaders were surprised we were able to meet with two of the actual members. I do have to say that he was very intimidating at first, I could tell we were another meeting in his busy day. As I started, I told him that I was a mom who stayed home with her four kids. I am a professional mother, and I was very much out of my comfort zone in this professional world. I told him I was nervous, but I had promised my daughter and myself that I would not close my mouth until there is a cure offered to every child, and so here I was, meeting with him, to speak up for the kids in Utah with cancer. The more we talked, the more he softened, and by the end he was one of our favorite people. He was very honest and upfront with us, and we appreciated that. He gave us a definite yes to one of our requests to join a caucus. He said no to some other requests to co-sponsor some bills, but he explained why and that it didn't mean he would vote no on them. The rest of them he needed to review.

Our last meeting was with a staff member from Congressman Chaffetz's office. She was a young lady from Utah, and was one of the most pleasant people I have ever met. She was a very compassionate person and I could see she was touched by the things we told her. She told us that Cong. Chaffetz is very passionate about cancer organizations because his mother passed away from cancer. We had done our homework, so we already knew that :) We made our requests with her and are hopeful to get him on board with this important cause.

In a nutshell (too late for that I guess), we know this will be a long road. The door is opened in Utah now for CureSearch, and if we work our tails off, I am hoping we can make some progress and get some help from our representatives. I feel so good about how it all went. I am so excited to be able to do something in this helpless world of childhood cancer.

Melanie and I in front of the Capitol Building:

When I got home, I talked to Brinley about it and told her that I told the guys in Washington about her. She just keeps smiling and asking about it. I said I told them that she didn't like having cancer and that she wants them to help cancer to go away so kids can't get it any more. She can understand that much of what just happened!

I feel so honored to be able to do this. I still can't believe I got the opportunity to share all of this with members of congress. I told them that they each had an important part to curing childhood cancer and that we needed them too. I hope they will listen. I will keep going until they do....

We made it in one peice, no terrorists on our flight or lightning storms to fly through. Phew. We are in our great nation's capitol! Wooohooo! We are so far out of our element it is not even funny! Two stay at home mom's from Utah, in DC with all these professionals. HA! The hotel we are staying in is a beautiful, fancy pants hotel and I don't know if I will want to leave my bed in the morning!

Seriously, we are ready to roll up our sleeves and get to work tomorrow afternoon. In the meantime tomorrow morning we are going to go do some sightseeing and we are so excited about it. I don't know if I've mentioned it or not, but we grew up about 20 minutes outside of DC, until I was 15, so this is the place of my childhood and lots of cool memories come with DC for us. We had a wonderful flight, we giggled and did our homework on the people we'll be meeting and tried to learn as much as we can. We have been like 2 giddy schoolgirls, and are excited for tomorrow. I love the history that is here, I really wish we had more time. Didn't appreciate it when I was here!

Although I am so happy to be here and seriously can't believe that I have this amazing opportunity, I feel such a void without my family. It just doesn't seem right to be without them. There are no kids here, and I saw a baby at the restaurant tonight, and Melanie and I both wanted to pounce. We controlled ourselves though. My family went to a soccer tournament in Vegas before I left, so I haven't seen them since Friday and I miss them like crazy. Taylor's team won BTW. Yay! Game ended up in PK's and the won 3-2.

Anyhow, tomorrow afternoon we will get some training and then have a welcome reception, then Tuesday we are off to Capitol Hill. Hopefully I'll be able to update tomorrow. I have adrenaline going like crazy and I hope I will be able to say everything I would like to say without my words turning into mush. I am as prepared as I can be, so there we go. My dad's advice to me (he was the Cheif of Staff for a congressman in the 80's when we lived here, so he has some great experience to share with us) was "they don't care how much you know, they want to know how much you care." I care an unbelievable amount and I hope I can portray that.

Well I am headed to Washington DC Sunday morning with my sister, Melanie, to speak up for the kids in Utah with cancer and to lobby congress for much needed funding for childhood cancer research. Since the day the director of advocacy for CureSearch contacted me to ask me to be Utah's Team Leader, I have been thinking about what this opportunity will bring. I have given a great deal of thought about what this position means. I want to share with you some of our experiences as I think about all the kids who desperately need a cure.

At the Childhood Cancer Christmas Foundation party, I had the opportunity to meet some new families and reconnect with some cancer families I already knew. If you were following us last year you might remember a couple we met who had lost TWO boys to cancer. She so completely randomly sat at our table again, and I was so happy to see her! Her story absolutely broke my heart last year. I must say she looked a great deal better than she had the previous year, and she told me her family had been able to have some great times this year. Not without sorrow, I am certain about that, but a little bit of good feels wonderful, I imagine, after going through something like that. I still think about the loss her family endured. Both of her precious boys had Down Syndrome, as innocent and sweet as you can imagine. Both of them had their lives stolen by cancer.

Another couple that sat by us have a daughter with a brain tumor. She has had one since she was a toddler, and has had so many brain surgeries I couldn't keep track. Shunts that haven't worked, and had to be redone, surgery to remove the tumor, they have truly been through hell with cancer. I just sat there in jaw dropping disbelief listening to their story. The first night we met the parents only, so I knew her whole story before I met her. She has had to go to the east coast to find someone who will operate on her to try and save her life from this beast of a disease that is attacking her. I can't say I blame them, everyone here is telling them there is nothing they can do. The surgery would be too dangerous and probably would not be successful in eliminating the cancer. WHAT?? This is my child, there can't be nothing?! So they found someone willing to do the surgery, and have been traveling back and forth to the east coast. The surgery is done, she survived it, now they are waiting to see if the cancer will come back. She is 10 years old. Her whole life has been fighting cancer. When I was able to meet her the next night, I could see what this stupid disease has stolen from her. She couldn't hear well, she needed help to walk, and she couldn't make eye contact with me. I introduced myself to her as I tried to keep a handle on my emotions, and her mom told her what I was saying loudly into her ear. Jade was with me and this little girl just looked at Jade and reached out and grabbed her hand and held on to it. Jade didn't even flinch, she just sat there holding the hand of this sweet girl who may not be alive the next time I see her family.

Then, we went to sit with Santa Clause, and when it was our turn, one of the directors of the organization came up and asked if someone could get in front of the line. She said he was terminal and was so tired he needed to go home, but he wanted to see Santa first. Obviously we said of course. How I kept from out and out bawling, I have no idea, but this boy was so thin that all I could see were his bones. His whole family was there and helped him up to see Santa to take a picture. He was smiling, in the moment of joy that he was experiencing in his dark, dark world. I knew he didn't have much longer to live just by looking at him. I don't even know if he is alive right now.

So when I say that night was bittersweet, that is why. That party was so wonderful and so sad at the same time. This world that I am a part of is very dark and sad. So sad. But real. This is not a movie that makes you cry. These are real children that are suffering and dying from this disease. I have seen them. I have seen Brinley suffer, and I have had small glimpses into the lives of children whose suffering is far greater than my daughter. I am in this world, and although I hesitate to say I am glad to be here, it is an absolute privilege to be placed somewhere that not very many people have the opportunity to be a part of. Now I know it exists, and I have seen it with my own eyes. I have been given the privileged to meet the bravest children on the earth. And I have been given the privilege to use MY voice for a group of people who have no voice. I remember when I decided I would be a voice for these brave warriors, I was rocking Brinley after a particularly hard treatment, and I made a promise inside myself (to Brinley) that I would never, ever forget what she went through. That even when the pain of what I saw subsided, and as life goes on for us, and we come to a happier place with no cancer (the day I pray for and hope for), I will remember the pain and the suffering, because she deserves that. She deserves for everyone to know how brave she has been. I will remember her first dose of chemo. I will remember the surgeries and the pokes and the spinal taps, and the sedations, and the hospitalizations. I will remember the day her hair started falling out. I will remember the day she asked me if I could be Brinley. I will remember EVERY child I have seen battling this disease. And I will remember all of the angels who have lost their battle with our enemy called cancer. And I will not close my mouth until every child has a 100% survival rate. So often I hear that Brinley has such a great survival rate. Ask the mother who had to bury her child with that same survival rate if she is satisfied with 90%. When someone kidnaps or harms or murders a child, there is an urgency that we have to find the child, or see the harshest of justice put down on the perpetrator. Cancer is a killer of children. We need to treat it the same way we would treat any killer of children, with the utmost of importance and priority. We need to do everything we can to get them what they need to BEAT it. Look how far they have COME! Forty years ago Brinley's survival rate was 4%! Survival rates are climbing, so we can see there is progress, there is HOPE. What do they need? Money for research? Lets get them the stinking money for research then! Brinley was not even offered to be on a clinical trial. There wasn't one open at the time because of the lack of funding. Nobody asked me questions that would help them figure out what is causing cancer in children. That was always weird to me. Why wasn't there some kind of survey to fill out about where we live, what our circumstances were, what we lived by, what we ate? It was just a big shoulder shrug when I asked why she got cancer. Now I know, these are all things that need funding, and they can only go so far with what they have.

I will go to Washington DC with each child who is in battle or has lost their battle to cancer in my heart. They will give me strength and courage to do what is so out of character for me it is almost hysterical. I will think of Avalon, Serenity, Abby, all of the children on my ALL List that I have come to know and love, some of them suffering terribly right now. I will think about the teenagers I see at clinic lying in the infusion room with a blanket getting chemo, or getting a blood transfusion. I will think of each child I see with only a few strands of hair left, or each child I see who is limping because their legs are in such pain from the cancer or the chemo. I will think of the boy who wanted to see Santa, and the child who put on the wall at clinic that their wish was simply to feel good. I will think of my Brinley, and all that she has been through and all the treatments she has yet to endure. Brinley, I love you. I love you so much. Life would not be the same without you. The thought that this disease could yet take you is unbearable. How I wish you did not have to endure all of this, but how grateful I am that you have allowed me to enter this world where children are heroes and need to be saved all at the same time. I am truly privileged and I will do everything in my power to be your voice.

Wish me luck......I will give a full report as soon as I can!

I have come to solicit some prayers for a girl named Avalon on my ALL List who is going through a really rough time. There is a very long story, but here's the short of it: She is a cancer survivor who is still dealing with the affects of the chemo, and her family is at a very scary point where there is no good solution, but they have to try and make the best of the bad choices. Please take the time to read her story and give her family a little word of support, they need it right now. Thanks, http://www.caringbridge.org/visit/avalonhavan

It's been a while since I have given a full update on everyone in the family. In case you are wondering, here's the newest on all of us.

Mylee had her 9 month checkup today! She is almost 10 months old! I blinked, oops, and she is soon to be 1 yr old. She got 2 shots and cried for, oh, about 6 seconds, then was back to herself. She is oh so cute and fun for everyone. Her hair is insane, her eyes are as big as her Daddy's, and she finally got some teeth, 4 popping out at once. She scoots around by pushing off on her toes. It is really funny, but it works! She is tall, 91% percentile, 30% percentile for weight. She waves bye-bye, gives kisses, smiles at anyone and everyone, and has the most kissable cheeks imaginable. Sometimes I wonder if we are going to kiss her face right off! She is a blessing.

Brinley's update will be short since you get updates on her constantly. The steroids are gone and she is happy and funny for the most part. She is so young and has no idea what she is fighting, so she doesn't think about it much. She is so funny and I think her humor will get her through a lot in life. The nice long life that she will have........

Jade is in kindergarten and we are working hard with her. She has a late birthday so she is the youngest in her class, not to mention I was pretty much absent all through pre-K with all of the chaos we were in, but she is catching on very fast. She is the most tenderhearted girl. She is always talking about bringing food to someone who doesn't have food. She is always asking if one of our neighbors doesn't have any food so we can bring them some. Same with her toys, she wants to give them to kids who don't have them. One of these days I will gather up the toys she wants to give away and take them to some kids who don't have toys. That would make her feel so good. She will grow up to be quite the giver. We are still following up with her doctor every few months since her doctor and I are still not convinced she is clear with nothing wrong (if you remember the scare we had this year with her that will make sense). She is also very emotional, and it is hard to tell if she is just extremely sensitive or if there is an underlying issue, emotional or physical (not feeling good, etc.) We go in again next month. All in all she is doing better though.

Taylor is 12 and part of the youth now in our church. That was a big milestone, and she is absolutely loving it. The weekly activities are not conflicting with soccer any more and we are both happy about that. She is working hard getting ready for a soccer tournament, oh, except for the PULLED MUSCLE she got last week! Bad, bad timing! She is resting it and hoping her fitness doesn't go ka-put before the tourney. She started playing basketball for the first time and is really loving it. She is in the learning phase, there is a lot to learn about basketball! She is a straight A student, trying to get 100% in every class, so she expects a lot of herself academically. I don't have to bug her about school at all, she always goes and does what is expected of her. I am going to enjoy it, because with 3 more to go through, one is bound to give me a little trouble! She is painfully shy, which can be so hard for junior high, but she seems to be doing fine and has a lot of good, sweet friends.

David is working like a madman. He has a lot going on at work with deadlines, so he works a lot and the kids are in heaven when he is home. He also works with the scouts and teaches Sunday school with me to the youth. He is such a good daddy and a good husband and a hard worker. We try to sneak away once in a while to "reunite" with a date (that will make sense to those of you with kids!!). I don't know how he goes on such little sleep, but somehow he does. He is going to take Taylor and the kids to Las Vegas by himself for her tournament since it is the same weekend as my DC trip. Not very men would be willing to do that! Thank goodness there is a lot of family there to help him. Honestly, he feels as strongly as I do about this cause, so he will do what he has to for me to go. I don't know what we would do without him. I love that guy.

Kristin, well I am doing great. This new year has been like a new beginning for me. I am so filled with hope for the future and gratitude for my blessings. I have decided to take back my life and take care of me a little, and I have lost 8 lbs so far this year. I am trying to dust off my piano fingers and have been learning some VERY simple hymns and it is really been quite nice to do something for myself. I am going to Washington DC in a week and a half and I can't wait. I will be getting some team leader training with CureSearch, and I don't really know what to expect. They are having a team leader conference call next week, and I hope to get a better idea of what I will be doing. All I know is I have a lot of passion about this, and I know I am supposed to do it. I want to be a voice for all the kids going through this in this country, and this is a great place to start. My sister, Melanie, is going with me, so I won't be all alone in DC (if you know me well enough to know my sense of direction you are breathing a HUGE sigh of relief right now). And, the most important thing, aside from all this other stuff, I love being a mommy. It brings me so much joy.

Since I am lacking a good picture of Jade and Brinley, I thought I would add a fun one of all of us.

Yes, we are in the middle of chemo week, but I am going to write something positive. Imagine that, positive talking during chemo week! Each year our family makes resolutions. My list is usually a lengthy list of goals like losing weight, improving spiritually, being a better mother, learning something or other. All very worthy resolutions, but last year was different. As it came to my turn to share my resolutions with my family, this is the list I shared:

-survive the year.

Yep, that was it. You see, last year I was 6 months pregnant, Brinley was beginning one of the most difficult phases of treatment, Jade was starting Kindergarten, Taylor was starting middle school, and I had absolutely no idea how I would make it to the end of the year alive. Everything was completely out of my hands, and I only wanted to survive. If I could come out of 2009 standing, I would have felt a sense of accomplishment. I truly put it in God's hands and put one foot in front of the other, relying on Him to guide me. I still stand by that resolution, and would not change a thing about it. Sometimes in our lives we HAVE to shift into survival mode and do what we can to....just survive. I didn't lose any weight(quite the opposite actually!), or learn anything new, but looking back on this year, I thank God for not only helping me survive, but blessing my whole year with miracles. I will never forget what He has done for us this year. Here are our miracles:

-Mylee was born. Miracle in itself. But the true miracle is the spirit that was sent to us. I thought a baby would increase our chaos, we were already in turmoil, what would a baby add?! Well, let me tell you what she has added. She has added a peace, calm, heavenly feeling to our home. I know without a doubt she was sent to us for that reason. I have had so many people tell me they have never seen a better baby, and I must agree. I can say that because none of the credit goes to us, it is all heaven sent. There have been times I have been on the verge of an absolute meltdown, and I look at Mylee, and she smiles her big giant smile, and it brings immediate peace to my heart. I'm not the only one, none of the kids can pass her up without smacking a kiss on her cheek, picking her up, making her laugh. We went sledding on Saturday and our steroid girl was crying, David was pretty darned close to losing it, and I was holding Mylee. David looked at Mylee, who was already flashing him a smile, and busted right into a laugh. See what I mean? She was sent to calm us from a Heavenly Father who KNOWS us and what we need. I don't know what she'll be like at 2, hehe, but I will never forget what she brought to us this first year of her life.

-We have also seen financial miracles this year. In the beginning of the year, we were on the verge of bankruptcy. We have been able to tread water through incredibly generous people who have given us money. Blunt as you can get right? But I would be ungrateful if I didn't recognize that as a miracle also. There have been moments too personal to write about at the time, where I didn't know how I would pay for the water before they shut it off, or groceries, then a check would come in the mail from someone, or a gift card would show up at my doorstep for groceries, and we were able to manage without total devastation. So many of our payments for the medical bills this year were made through Brinley's Leukemia Fight fund, and I don't know what we would have done without the help we received. We have had prayers answered through David's job, and other opportunities that have come up, and guess what? I think we may be okay when this is all over. If we can get through this year's medical bills... Things looked so bleak last year financially, but we always paid our tithing. Always. And God is blessing us for it. No doubt in my mind the Lord is mindful of us.

-Our family got stronger. Do I call that a miracle? Yes. I thought we were already strong, and when Brinley got diagnosed everyone said to me we would be such a strong family. Sometimes I wanted to scream, ARE YOU CRAZY! THIS IS TEARING US APART! Here's what I say now. You were right. There, I said it. We still have arguments, we still annoy the dickens out of each other, but there is a bond that comes with going through something life altering together. Between the parents and the children, husband and wife, children and children. We ARE closer. I posted our family picture because this is the first time we have done a family picture not in a studio, where they perfectly place you in the most strategic place for the picture. This year we just did our own thing (thanks to some help from my future SIL, Dani!) This picture we are squished in so close, and I picked this one as my favorite because of that. It is how I feel we have become, all those hard times have made us cling to each other. I love my husband and my kids more than I ever thought possible.

You may look at my "list" of miracles and argue that none of these things are miracles. They are to me. If you told me any of these things would happen at the beginning of the year last year, I would have argued with you until my eyes popped out of my head. So I call them my own personal miracles.

We are looking forward to a year of happiness! I made resolutions this year, so that's a good sign right? Brinley will finish treatment at the end of this year. I can't write that without tears coming to my eyes. Brinley will finish treatment THIS year. No more chemo, no more needles, no more steroids, no more "chemo eyes". This will be a good year...

Happy New Year. We welcome 2010 with open arms.