Clinic Day 12/27/2010

Ah, well hello second half of DI, will you please be nicer to my little girl than you were in the first half?? It was absolute torture, I need my little girl back, and I would also like for her to start gaining a little bit of weight back, and getting some color back in her cheeks, and perhaps if its not too much to ask a little bit of energy??? She weighs as much as she did when she was 19 months old, and has about as much energy as a 90 year old woman. SCARY! Not to mention how tired and grouchy and unhappy everyone has been in our house for the last 2 weeks. Can we get a break please?

Livi wasnt excited to come to clinic today. She had gotten a 2 week break and it fell right over Christmas break so it was nice to not to have to worry about anything. She didnt get delayed because of low counts which is actually quite common in between these two halfs. We got lucky! Jessi got to come with us today so that was awesome! We had my mom and sister watch all the kids so we could both go.

The one and only smile you will see from this little girl today, it took a lot of tickling....

Here she is getting put to sleep for her LP she is getting done today. She is getting spinal fluid taken out and replaced with Methotrexate (chemotherapy)

What a brave awesome little girl!!!! XOXO

Here we are back upstairs for Livi to get her chemo. She gets a new chemo today that she hasnt had before. It has a side effect of mouth sores (EEEKKK!!) Oh no, I always ask if that is a side effect and if it is i cringe a little bit. Here is the Chemo's Livi is going to have to start getting over the next 2 weeks:

Cyclophamide (Cytoxin): This one they give her through her port. It infuses over 60 minutes. Side effects are; nausea/vomiting, hair loss, low blood counts 1 to 2 weeks after treatment, blood in the urine, metal taste in mouth, hormonal changes (nice), heart damage with high doses.

Cytarabine (or ARA-C): 4 days in a row for 2 weeks. It is a 3-5 minute push. Side effects are; nausea/vomiting/loss of appetite, diarrhea, low blood counts 1 to 3 weeks after treatment, mouth sores, hair loss, abnormal liver function, irritation to the eyes, flu- like symptoms.

Thioguanine (oral chemo): a pill every day for for 2 weeks. Because it is chemo, we are supposed to wear gloves or wash twice after handling. It is a strange feeling to put gloves on just to touch something you are letting your child swallow. The side effects are; nausea, low blood counts, mouth sores, and abnormal liver function.

BLAHH! I also got told today that our insurance is not going to pay for Homehealth care. So Alivia is going to have to be brought up to PCMC 4 days a week for the next 2 weeks for ARA-C. Yeah I am one unhappy mama :( Oh well, you do what you have to do, and if this is DI going out with a bang, then there you go.

Christmas with the Coopers

What a wonderful Christmas we had this year! We have certainly been blessed this holiday season. The kids had the best Christmas ever, not only were they spoiled rotten but we got to spend a lot of time together. With mom not working anymore and dads work cutting his hours back so much we spent most of the season at home. Livi's counts havent been good lately so we didnt want to chance taking her anywhere unless it was a super special occasion. Like seeing santa! We went to the mall during the day so there wouldnt be very many people. Livi was so excited and knew everything she was going to ask for, in fact when we were on our way out the gate, she had to run back to tell him something else....what a goof. Ryker on the other hand would even look at santa! As you can tell by the picture he is a little dazed and not sure at all what to think of this man.....dont worry when he asked what Ryker wanted Livi quickly said to him, "Ryker is shy, but he wants lots of dinosaurs." What a good sister!

Ginger bread houses are a must this holiday season. We usually cook the ginger bread and get all crafty, I was lazy this year and bought the box that has everything inside it. It was a blast. I let the kids each have their own side and had a blast for hours decorating and concentrating so hard.

Christmas day!! We were so excited and anxious for Christmas this year. The kids got so many gifts from so many wonderful people! Neighbors, ward members, even people we didnt even know brought gifts for our children. It is truely amazing how giving people are. They dont even need anything in return. It really makes you realize how many wonderful people there are in this world, I am forever humbled and it has changed the way I look at life. I will always try to do my best to give back and will always try to do my part to help others in need. Thank you so much everyone for making this Christmas a wonderful one for our family!!

Merry Christmas and a Happy New Year!!

I just wanted to blog about what amazing people I have in my life. A few weeks ago I got a message on facebook from my sister in law Hidie. Her cousin and her work wanted to do something wonderful for our family by doing a sub for Santa for Christmas this year. I couldn't believe it! How did these people know that I had done absolutely no Christmas shopping then to top it all off, how am I supposed to go shopping when Livi cant go anywhere this time of year. My hands have been tied for the last few weeks, having to rely on a lot of people doing things for me. I was so overwhelmed and so so beyond grateful! What wonderful people to think of us this time of year! There are some amazing people in this world, I am a witness to that. They came on Sunday and brought by all the wonderful, already wrapped (saved me even more!) presents. They took all that time to shop specifically for my family and they wrapped all the presents for us as well. They also hand made a quilt for each member of out family. Thank you so much!!!! Words can not express how eternally grateful I am for this wonderful gifts you have given our family. You have no idea the joy you have brought to our family this Christmas and we are so grateful!!!

I also want to thank the families at The Kids Village for their generosity this holiday season. Instead of the hug a bear project they normally do at Christmas time, they did a fund raiser for Alivia and her friend Daphnie, who has the same cancer as Livi. It was truly amazing and I was with out words.......for a while. I couldn't believe the generosity and the love all of Livi's school mates and their families have for us! People that barely know us are doing all they can to help us through this difficult time in our lives.

Thank you all so much, you have truly blessed our lives in a way you will never know. We are forever in your debt and are so grateful for all you have done for us. God bless all of you and have a Merry Christmas!!

What a Week

I have no words to describe this past week. Horrible, exhausting, those words could possibly give you an idea of what our family has been going through. Livi is going through so much, we're supposed to be on "count RECOVERY" and this has been by far the most horrible week yet. I unusiated the word recovery because you would think she would be recovering right? Getting just a little better right? WRONG! She is so tired, just stares into space all the time, cries for no reason, lays on the couch all day, I have to force her to get out of her pajamas. It is so heart wrenching to see her like this. No parent should ever go through this. I just have to try and comfort her when she's upset and I have no idea why or try to talk to her when she hasnt said a word to anyone for hours and its so hard.

At first I thought maybe she needed a blood transfusion because of how exhausted and pale she was. So yesterday I called our homecare company to come draw a CBC (complete blood count) and they called me back this morning and said her counts were all good. I was in total shock. So I asked the nurse if there could possibly be something going on and she told me to just watch for fevers, sometimes the body just has to crash for a while after getting so much chemo and going and going constantly. I seriously feel so helpless. I hate feeling like I cant do this anymore. I want my little girl back, I want to have a normal life again. I know that we will never live normal lives again. Even when this is all said and done with it will always be engraved in my mind and I will always ask "where did this bruise come from?" or "why are you so pale?" or wonder if someone has just been picking their nose to make it bleed or if there is a more serious issue.

I'm just venting for now, I'm sorry....This has just been a bad week full of what I call "Why me days".....I hope the next few weeks will pass by quickly and we can quickly get into maitenence and have no problems with that and everything will be smooth sailing for the next 2 years. Thank you so much for everyones love and support over the last few weeks. I dont know what we would do with out you all. We have recieved such an outpoor of amazing love and kindness this holiday season, with out you all I would probably have gone crazy by now! Just know that we are so grateful for every single one of you, we couldnt get through this with out such amazing people in our lives! We are so blessed to know each and everyone of you. Thank you and Merry Christmas!

This is where Livi finds the most happiness....the bath tub, we try to make it as fun as possible for her, we have all kinds of fun bath toys. This is the kids favorite foam...its awesome and they can play with it for hours if I were to let them.

Clinic Day 12/14/2010

On our way to clinic

What a goof! She got some 3D glasses and paper to color on for Christmas from the clinic ladies. It was a big hit! She wouldnt take them off!

Today is the last day for Doxorubicin! We're so ready to be done with this aweful chemo. It has been aweful at our house lately. She get so nausous and then to top it off she is on her steriods again. She's not as mean as she was the first time she was on them, she's much much more emotional. All she does is cry. It breaks my heart! She cries about everything, and poor little Ryker will look at her wrong or say something in his monster voice and it will upset her so much that he then gets upset too! We're all emotional basket cases over here....so if you plan on coming over bring some tissues with you ok?

Clinic was short (which we always enjoy) and we got to visit with a couple of Livi's cancer buddies and meet some new ones. She loves talking with her cancer buddies or meeting other little ones with "akeemia" it makes her feel good knowing she's not the only one going through all this aweful crap...

So as I'm sitting here typing Livi just came and jumped on my lap and said "what are you doing?" I said "Im writing to all of our friends about you and how clinic was last week." Her reply was "Mom tell them I love you and we love you all of you." So there you have it! We love all of

you!!

Meeting a new friend, I think his name was Oliver...very sweet puppy, Livi thought it was hilarious that he had a bow in his hair and it was a boy!

So today instead of the normal nausea medicine they usually give with this chemo, which by the way never helps and it drives me crazy because with this dose your not supposed to have any other nausea medicine for 24 hours, we decided to try and give her the normal Zofran (which she gets at home) and Benedryl....this was the end result....

SHE WAS SO SLEEPY! She was sound asleep through half of her clinic visit then the entire ride home! What a sweet heart. I dont know if we'll throw the Benedryl in there anymore but it seriously helped with our throwing up problem!!

The Kids Village

Alivia started going to preschool in October. She has only been able to attend a handful of times, she misses week after week because of some sort of complication or she's in the hospital, or at home on antibiotics or her ANC is too low or just any old reason. I hate seeing her missing out on so much. She missed out on her school program for Halloween, her Thanksgiving class party, and many many fun days being with her friends. So I got notice that her Christmas party was coming up and it broke my heart that it was going to lie right in the middle of her DI course. There was no way she was going to be able to make it. We went to clinic on tuesday for her second dose of the Doxorubicin or the "Devils Blood" and the time she had gotten it the week before she had been horribly sick every single day and her counts were only 1200, I was expecting them to be low, too low for a Christmas party. Low and behold they read me her counts and....drum roll......they were 4700!!! Amazing!! I was so unbelievably greatful that I was going to be able to take her to the party!! (That is if we could avoid the vomiting, leg pains, and horrible headaches.....another story) I tried not to get too excited because with a child with cancer, you can make no promises, no commitments, and cant count on doing anything you plan for. The cancer controls your life, your not allowed to make plans we have learned that time and time again.

Wednesday rolled around and Livi was doing pretty good. She threw up once in the morning, but overall was acting like she felt ok. I put her in the car at 330 to head over to the Kids Village preschool and crossed my fingers.....Everything was perfect. There wasnt too many people, Livi got to meet santa, sing a few songs, and get to see some class mates she hadnt seen for quite sometime. Needless to say we had a great time. Our other cancer buddy Daphnie also goes to this school and they were the highlight of the party. Everyone wanted to meet them, and shake their hands they also got to sit at the top of the little stairs so they were the center of attention. They were little celeberties that night.

Clinic Day 12/7/2010

This week has been a rough one :( Livi has been sick sick sick, it would just creep up on her at anytime, anywhere. Luckily we didnt do much this week so we generally stayed at home. All in all though she is doing really good. No mouth sores, that we can be thankful for! This week at clinic she got Vincristine and Dox0rubicin. It was a very short clinic visit! We were only there for 3 hours today (yes that is a very short visit, normally its 5-7 hours) Livi was crying when we were leaving because she wanted steak so bad....steriods man gotta love them! But she does get a week off from them now. So maybe she'll be getting back to normal soon......

Clinic Stats:

Weight: 17.8 Kg (about 39 lbs)

Height: 106.4 cm

ANC: 4700

We're so happy Livi's ANC is up, it might be a little too high but nothing they are worried about.

It just means that she will be able to go to her school Christmas party tomorrow, which she has been looking forward too all month! She hasnt been to school in weeks, she misses it so much and it breaks my heart when almost everyday she asks if she can go. Im a little torn in what to do. Her ANC is up but at the same time should I risk letting her go during flu season? She's bound to get sick if she goes, but whos to say she wouldnt get sick anyways?? Ehhh...The stress of my life....

We are so lucky to live in such a awesome neighborhood, my ward has been bringing us dinner every night we have clinic which is huge for me! After a long day and a long drive home, the last thing I want to do is cook dinner. So thank you so much ladies you have absolutely no idea how wonderful this has been for me!

Livi also had her appointment on Friday to get her PEG shots. The nurses said she did really well. I would have to disagree. She was throwing her body all over the place, arms, legs, basically any part of her body she could move, she was moving. It was horrible for me. Then we just had to stick around for an hour so they could watch her for a allergic reaction. She fell asleep, it was so quiet in clinic! There was probably 2 other kids there today.

Livi got this shirt from her friend staying in the ICS, you cant really see what it says because its giant, but is so cute it says "hair is overrated" Love it!

The awesome surfer santa from the Festival of Trees was in the lobby at Primarys, I think Liv was a little nervous around it, but it was seriously awesome.

She also got this cute bear from her little friend! Thank you Kambri!