Chemo has started again!

Woo hoo! Bella's counts were finally good enough to start chemo on Monday! I am trying not to dwell on the fact that we are now 2 weeks behind and if we hadn't had a chemo hold we would be finding out the results of remission this time next week. Monday was a long long day. We got to the clinic at 9:30 and didn't leave POTC till 5:30. She had a chemo called cyclophosphamide that is administered over a half hour but can damage your organs so an hour of hydration before and 4 hours after is needed. She didn't even receive the chemo until 1pm because we couldn't get her urine to the right number. It's very hard to tell a 2 (almost 3) year old to pee on command! But we made it. And we also learned that Bella's primary doctor had her babies. She had twins last Saturday. On Wednesday sister Gabbi had an appointment to get all her shots. 4 total including the Flu shot. This is the 1st year any of us got flu shots so I was a little skeptical but we all handled it well. Gabbi gave us a little scare Wednesday night after jumping off her sisters toddler bed, hitting her head with mine and then proceeding to vomit. The nurse on call said to take her in if she vomits more than twice or is favoring one side more than the other or any other neurological type issue. Luckily we had no other issues and I'm pretty her shots caused it. Its not the 1st time she has thrown up after her shots. 

Little Sis before shots

Thursday we had another appointment for our monthly Ivig. All went well and no reactions. Its actually very common for kids to get a reaction so they pre-medicate to be proactive and hope they don't get one. So far all has been good with Bella's health. We still are having some butt issues so she is permanently on antibiotics to stop anymore infections down there. The more medicine she takes the more crap she gets. I have to bribe her to take all the medicine she is taking except for the oral chemo. That she takes with no issues. Go figure right! She could be eating me out of house and home with all the pet shop toys that she loves the most! I pretty much have created a toy closet just like they have at the hospital but of course she only wants the good stuff, she is a smart cookie!



Luckily no more fevers and nothing else going on. She lost almost 2 pounds over the last 2 weeks but during this phase of chemo she surprisingly eats a lot. And she isn't even on steroids. So hopefully she won't lose any more for a while. Along with lots of eating she has been doing lots of playing (and NO sleeping) with Gabbi. They have been having tea parties, sleep overs, (but again NO sleeping) wagon rides and going down the slide. Its so good to see her playing like a kid rather than just lying around in pain.

Having their tea/mashed banana party!

 She also has been losing a lot of hair. She now has lost almost all of it in the front. But the back is still pretty full. Tuesday is Bella's birthday, so we decided after her birthday we will be shaving her head. It's just time. It's everywhere. In our bed, the bath, the couch, her clothes. Not sure how the shaving part is going to go for any of us. When I ask her about it, sometimes she says yes and other times she gets really upset and says no. I'm sure all of us are going to be very emotional. It's just another sign that she is sick and different then other kids :(

Little trouble makers!

I usually try to keep this blog pretty positive, for my sake and everyone else's but sometimes I just need to let it out. Sometimes I find myself reading blogs about other kids with cancer. Not always the same type as Bella's but some type of childhood cancer. I find myself reading the saddest ones. Where the kids don't make it. It's like I am trying to prepare myself for the worse and the what ifs. Like I said I know it's best to be positive and not dwell on those what if's but it is hard. Really hard.  A lot of the blogs started out like mine. Really good odds and in the end they don't make it. Some kids have Bone Marrow Transplants and again I find myself wondering if we are headed down that road. Some kids relapse. Years after they are supposedly "cured." And then they have to do this whole grueling process over again. How do you not worry. Even after these 3 years. It can always come back. But we are all gonna pray and hope that this isn't the case with Bella. But I can guarantee all these other parents were thinking the same thing...Ok end of sad blog.

Tuesday is Bella's 3rd birthday. To say she is a little excited is under stating it. She talks about it everyday. For the longest time all she wanted was a Hello Kitty Birthday party and some Hello Kitty earrings. But since a recent visit to the store she has changed her mind to a Princess Birthday party. She even made me buy Princess plates, cups and napkins. I was first telling everyone NO gifts but have since changed my mind. This is the 1st birthday where she actually knows what is going on so its not exactly fair to say no presents, especially since we won't be having a birthday party anytime soon. I've already purchased the Hello Kitty earrings, as well as a few other things. And I plan on getting Cinderella! It comes on sale on her birthday and she has never seen it. She will be so excited. She knows exactly who Cinderella is just hasn't seen the movie.



If any of you missed the previous Scentsy fundraising party or maybe want to purchase something else, during the whole month of October there is a fundraising party where 25% of sales will be donated to Bella. Please fill free to share with your friends and family. The link is www.melytotaan.scentsy.us

"Because of the Lord’s great love we are not consumed, for his compassions never fail." ~Lamentations 3:22

September is...

Childhood Cancer Awareness Month! So in addition to this blog, I am going to give 3 ways for YOU to help find a cure!

This week has been an overall good week for Bella. Cancer still sucks but we plan on kicking its butt! Monday we went to clinic for chemo. I whole heartily thought she was gonna clear and she would get chemo. I even made them access her port so she didn't have to go through a finger poke and having her port accessed. BUT I was wrong. Dead wrong. Not even close. Her ANC fell from 460 last Wednesday to only 220. I was not happy. I want this round to be over so we can confirm remission, but apparently her body had other ideas. Obviously I am also concerned about holding her chemo for 2 weeks in a row, but they assured me that it won't affect the outcome in the long run.  Friday we went to Sonora Quest Laboratories to get another count check and clear for chemo on Monday. This turned into quite an ordeal because they did not want to poke her finger and I did not want them drawing blood from a vein. After talking to my clinic and their supervisor, we finally got it figured out. I heard from the doctor around 5:30pm that night and her counts look GOOD! ANC is up to 1200, so chemo is on for Monday (unless they drop suddenly). This week we got rid of our dog Maddie. Bella was very sad and is still asking for her at times. I'm sure eventually she will forget about her.  It was becoming to difficult to give her the attention she needed especially with all the hospital visits we have coming up in the near future. We gave her to a nice family who actually lives in Michigan. We wish her well and have faith she will do wonderful with her new family!

Pose

Bella's Run also took place on Friday. Thank you to everyone who pledged and a BIG thanks to Gilbert for setting it up and running 30 miles for our little girl. Also thanks to Mario for keeping him company and miss Amanda for being their water girl in all 3 cities :) And also Drew who ran all 30 miles here in Phoenix!

Gilbert, Drew, Mario, & Leo on the 8th Mile in Phoenix

Check out this kids Facebook page. He is a fellow cancer fighter who is losing his battle. Him and his family could use all the prayers and thumbs up as possible.(https://www.facebook.com/PrayersforLaneGoodwin)

Thumbs up for Lane!

1st way to help find a cure,  Eat at Chili's! Any Chili's in the whole world.  All proceeds from tomorrow Monday September 24th, lunch, dinner, or togo are donated to St. Jude's Childrens Research hospital. Bella may not go to this hospital but they do so many wonderful thing for kids and they are helping find a cure. Who knows maybe someday we may need to take Bella there.

Bella's pepper shirt!

Chili's

2nd way to help, Purchase a personalized license plate! As of today, Arizona has introduced a new license plate. Childhood Cancer Research. Plate cost is $25 and $17 of this goes to find a cure.


3rd way to help find a cure ~ Ok this isn't actually helping find a cure but you know what,  it gives children with a life threatening disease a chance to live through the Make-A-Wish foundation! On Thursday September 27th, Cold Stone Creamery is donating a $1.00 to every Love it or Gotta have it ice cream sold all day.



Another way to have money donated to Make a Wish, go demo a phone at Walmart from their Straight Talk. For every phone demoed from September 22nd to October 13th 10am to 4pm a dollar will be donated to Make-A-Wish. You don't even have to purchase anything. It only takes a minute.
http://www.oneminuteonemillion.com/



And if you can't make it into a Walmart store? No problem. See their smart phone in action online and they will donate $.10 a demo! http://www.oneminuteonemillion.com/#demo

“The eyes of the LORD are in every place, Watching the evil and the good.” ~ Proverbs 15:3

No more pictures Mom!

Cancer sucks!

The title of this blog pretty much states everything I am feeling. Cancer sucks! And it's never gonna get any better than that. Cancer will always suck. Normal kid stuff is now non-existent. Last weekend I talked to the doctor 6 times! Seriously SIX. 3 on Saturday and 3 on Sunday. Tremors, diarrhea, fever, vomiting, pus from her bottom. Anything u can think of we pretty much had going on. But the good thing about all of this. There is a good thing you ask? Yes, we got to stay home and play!!

She made everyone wear bows :)

Daddy's little girl

Monday we visited the clinic for them to take a look at her butt and to check counts. She didn't clear for chemo so we have to hold for another week. I hate this! I want her to be in remission and its not fair that we keep having to hold chemo! I read about all these parents whose kids MRD is negative and I'm envious! Why couldn't that be us? Don't you think we've had enough going on? They sent us upstairs to another specialist (and another co-pay!) to look at her. This took over an hour to see the doctor. Both girls had fallen asleep. Bella on me and Gabbi in her stroller. First time ever Bella had fallen asleep in public. Finally we see him. He gives us a prescription and we are on our way home. Monday night she spikes yet again another fever. Same doc on call. She thinks it's from her butt and since we started antibiotics not to worry unless it continues to rise. I packed a bag, just in case. The fever dispersed! (woo!).

Chillin with Mommy before bed

Next morning more vomit, ugh! I call and talk to the nurse. They decide they want us to come back in on Wednesday and if she spikes another fever Tuesday evening then we have to come in to the ER. Thankfully no fever. We have to go Wednesday morning to access her and get a CBC as well as a few other tests. No fever so we got to leave but without counts because the machine was down. Her blood was sent to Sonora, so who knows when we will have results. Gabbi also had a check up at 2 so we rushed to that doctors office. She was good and healthy!

Don't forget my spaghetti Mom!

Thursday we had our very first play date in 3 months! Bella was in heaven! She was so excited to see her best buds Tatum and Hunter. I loved being able to visit my best friend but on the other hand it was very hard seeing her healthy kids and questioning why it happened to us and not someone else. Also the constant worry of germs is inevitable. I was constantly making everyone wash their hands. Poor kids. They all had a blast though! She was so exhausted that night she slept in her own bed for the first time since she was diagnosed. It only lasted till about 10:30 when Gabbi woke her up crying :(

Playdate!

 Friday and Saturday was full of diarrhea and many accidents. I feel so bad for her. She doesn't understand why it's happening. She has lost 1.2 pounds from last Friday to Monday. She is eating but not much. The vomiting doesn't help, nor does the diarrhea. And her hair has starting falling out again. Just lots of loose strands.

Cheese!

Today we had family photos done. She was excited to get out of the house and was stoked to hear that we weren't going to the doctor. Tonight she is back in her bed again for the 2nd time. Crossing my fingers this lasts throughout the night this time.  Back to the clinic tomorrow for hopefully chemo. I don't think I can handle another hold.

On our way to the photo shoot!

Don't forget everyone this month is childhood cancer awareness month! When choosing a foundation to donate money to, please think about one that funds finding a cure for childhood cancer! Also Bella's Run is this Friday for anyone who is interested. Please email me with any questions or see previous blog entry! Thank you to everyone who participated in the Scentsy Online fundraising party. And a big thanks to Jessica Weinland for setting it up for us!

"always giving thanks to God the Father for everything.."~Ephesians 5:19-20

Not good or bad

This week has been an ok week. Besides having a crap ANC all week, her other counts look good. We had our last IT on Tuesday and another round of vincristine. Pretty much life is kind of back to normal. If that's what you want to call it. We made one trip out this week to Fry's and I definitely was one of "those" moms wiping every part of the cart down with a wipe and giving Bella another wipe to carry around in the cart. Not to mention she is wearing a mask. I pretty much make her wear one at all times if we are out of the house regardless of whether or not she is neutropenic. I wonder sometimes what people think seeing her in the mask. I mean she has all her hair still and she doesn't really look sick. So if I had to guess, I think they are probably thinking she is contagious and we dont want to spread HER germs! When in reality we don't want any type of anything getting near her.

Wearing her new headband!

 Today before clinic she told me she wanted to go back to dance and continued telling me up until we saw the doctor. Not sure if she thought maybe that would get her out of this visit?  Maybe one day soon I can re-enroll her. All I want for her is to be a normal kid and live a normal life. Someday soon, I hope we all do. She hates the finger pokes and tells me she would rather have her port 'done' as she puts it. Counts again were all good, except for her ANC, so there goes our fun filled weekend of swimming. Since her ANC is only 150 we haven't cleared for next weeks chemo. She must be above 750 and have at least 75k platelets. Her platelets today were 236k, so we are good to go there! Back again on Tuesday to see if she clears. I really don't want to delay chemo anymore! I need to know if she is in remission. The wait is literally killing me. I'm tempted to ask what it would take to get another sample now.

Spinning Gabbi around in her stroller at clinic!

 All she wants to be is a regular kid. Every time we drive by sunsplash (which is every time we go to the clinic) she says "ooh Mommy look! Let's go play!" or if we see a commercial on tv about Chuck-E- Cheese she always says how she wants to play! I feel so bad. Now that I am on leave from work and have the time (ok I really don't have the time) she cant do any of these things. If anyone has any good inside play ideas, feel free to pass em along. We have done our blow up bouncer, glow in the dark shaving cream paint, not to mention hours on end of tv, coloring and play-doh!

Bath Time!

 On an extremely sad note, I read a blog tonight about a little boy Ronan (http://rockstarronan.com) who passed away last year from his fight with cancer. He inspired the new song "Ronan" by Taylor Swift. All proceeds of this song go to find a cure and is just another way for you to help. It is an extremely emotional song but so beautiful! (http://www.youtube.com/watch?v=tvN7BOAQn9I)
 Also, in case anyone missed it, there is an online scentsy party that goes on until next Saturday, where 15% of proceeds go to Bella. If anyone is interested in picking up some deliciously delicious smells, you can do so by also giving to a good cause. (http://jweinland.scentsy.us)

"So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." ~ 2 Corinthians 4:18

 

 

Scentsy for a Cause

A friend of mine is sponsoring a Scentsy party online beginning Friday September 7th ending Saturday, September 15th. These items make wonderful Christmas or Birthday presents. Below is the link from which you can order. Thanks again everyone for everything you are doing to help us fight this fight with Bella!

Supporting Bella through her fight with Leukemia. I am donating 15% of total sales price to Bella's family as well a warmer that supports childhood cancer research. You must purchase between Friday September 7, 2012 to Saturday, September, 15, 2012. Please help us raise some money to help her & her the family. These make perfect holiday/ birthday or anniversary gifts! Please visit my website http://jweinland.scentsy.us/ and click BUY FROM PARTY!

Another week

This week has been full of hospital visits. But thankfully all of them have been outpatient and she has been feeling relatively well minus a few tummy issues. Monday we went to the clinic for counts check. Her platelets came back at 24k. I knew she would be needing them as she had starting showing signs of petechia, which is reds dots on her body. So down to POTC we went for the day.

Play-Doh  & Platelets

Tuesday was another day of chemo. She received another LP as well as vincristine through her iv and the peg which consists of 2 shots in her leg. I was able to get them to do all the chemo before she woke up so that she didn't have to be awaken for the shots.

Playing Doctor with Gma after getting home

Wednesday was little sisters birthday. She turned 1! We celebrated by visiting daddy at the airport during his layover to Texas.

Sisterly love

Thursday Bella had ivig. Its given over a few hours and some kids get serious reactions, so they pre-medicate with Benadryl and Tylenol. She also had tachycardia (her heart was beating too fast). This is a symptom of low hemoglobin even though her labs showed 8.5 (they transfuse at 8 or when they are symptomatic) and her platelets had also dropped from 104 to 55. Instead of keeping us around the rest of the day, we decided to come back Friday to do blood and platelets.

Zooming around in her Princess Car

Friday we were back bright and early. Finished blood and started platelets. Bella had been complaining all day of her tummy hurting. This unfortunately is a side effect from the vincristine. Well 3/4 of the way into the platelet transfusion, Bella got sick and vomited all over herself and I. We are not sure why she got sick. Could have been a reaction to the platelets or blood. But thankfully no fever or any other symptoms. They gave Zofran and Benadryl immediately where she then feel asleep from sheer exhaustion. She was fine after that and we got to go home!

Showing off her new hat from the Toy closet

This weekend has been uneventful. Daddy has been home and we have done lots of playing. We will be back in POTC for counts check and some more chemo ( IT & vincristine) on Tuesday. I misspoke last week when I said this was her last IT this phase. It actually is Tuesday. We can handle one more, then we have a break from them for a few weeks! I want to end this post by reminding everyone that September is childhood cancer awareness month. Only 3% of funding is donated to finding a cure for all 12 childhood cancers. Breast cancer alone receives 12% of this funding. Please help people become aware that our children need funding too! They are our future! Thanks again to everyone for all their support and prayers.

Daddy's Girls

"Let us hold unswervingly to the hope we profess, for he who promised is faithful." ~Hebrews 10:23

September is the month to remember!