Wednesday, October 27, 2010
We didnt make it to a pumpkin patch this year, but we did have our annual pumpkin carving party. Cami was totally into carving her pumpkin this year and she decided to go with a white one. She scooped it out entirely on her own. Then she designed what she wanted to carve and went through about 10 sheets of paper getting it just right.
Then she let Mommy cut it out for her, but not without lots of pointers. She was VERY serious and wanted it JUST the way she planned.
This little guy wanted nothing to do with the goo inside the pumpkins.
He was content just pushing his around all night.
Guess whats on Pat's mind???
Here's Cami's cute cousin, Kellen mapping out his pumpkin.
What a trooper Aunt Jess is! 9 months pregnant and STILL on the floor carving the perfect pumpkin. (Cami just cant get enough of her baby bump, she is SO excited to finally have a GIRL cousin on this side)!
we roasted these bad boys.. yum!
Grandma Di-Di's creation
(it's a proud Granny with her grandkids).
Blowing them out at the end of the night!
Cami must have had a SERIOUS fire safety lesson last year in preschool because she was very concerned about these candles.
She felt much better after blowing them out.
Friday, October 22, 2010
I have been dreading clinic for the last 10 days. When we got home from last clinic, Cami woke up with a high fever and a horrendous headache. She just cried and cried. We called her Oncologist- she sent us straight to the ER. Cami was either awake screaming or dosing off in the car the entire ride out to Primary's. She was in pain and it sucked. When you go into the ER carrying a child with a bald head they take you right back... no waiting when you have Cancer- its kinda scary. After giving her some antibiotics, tylenol and checking her blood they said she was getting a cold and sent us home. The next 5 days are a blurr. Cami was SO sick! She was nauseous, had horrible headaches and leg pain. It was bad! After talking to a few of my "cancer mom" friends I figured she had gotten a bad spinal tap but there was no way of knowing for sure if that was the case or if it was the higher dose of chemo giving her those side effects. I felt so bad for little Cami, and there wasn't anything I could do for her. It was heart breaking! After about 5 days she started feeling better and the headaches passed. BUT...I just kept thinking about our next clinic and the HIGHER dose of chemo that was to come. Cami's home care nurse came to draw some blood and check Cami's counts on Wednesday. Sure enough clinic called and told me counts were high enough to up her dose again. I didn't sleep that night knowing I had another week of vomit, screaming, and watching my child in pain. I was dreading clinic, but I got up the next morning and forced a smile. I asked Cami if she was ready to go do a craft and see her friends at clinic... all the while thinking: ready to get stuck by a giant needle and pumped full of poison while they try and distract you? We made it to clinic and it was the same old drill: Waiting room, craft, vitals, poke, talk to Doctors, Dr. exam, Methotrexate infusion, Vincristine push, flush line, remove dressing, de-access port, make appointment for next time. The Doctors were a little worried about Cami's walking. She is beginning to get a side effect from the Vincristine called "foot drop". They brought in a physical therapist to asses her. She showed me some exercises she can do at home to re-train her legs to walk correctly before it gets worse. After clinic we went home and Cami fell asleep. This is exactly what happened last time so I was gearing up for her to wake up in pain and agony. She slept until 6. Pat ended up waking her up, she woke up with a HUGE grin on her face. She said her legs hurt a little, but NO headache and NO nausea! After I gave her medicine for her leg pain she was dancing around the house like nothing happened that day. We watched her like hawks that night, but she was normal and this morning she woke up as happy as can be asking to go to school. I am BEYOND relieved!! I guess last week it was just a REALLY bad spinal tap after all.
I know it is only going to get harder and harder to take Cami to clinic. It seems like the minute she starts feeling better, its time to go get more chemo which will just make her sick all over again. Im not going to sit here and say it is easy taking my daughter to get poked, and pumped full of medicine and poisons. She cries and begs to go to school instead. Its not fair for her and its painful for me to force her to do something that is SO not fun. It is HARD, but I think of it as short term pain for a long term gain, and it will all be worth it in the end. I read this quote today (on facebook of all places) and it fit perfectly-
"If you can find a path with no obstacles, it probably doesn't lead anywhere."
-Frank A. Clark
This quote can be applied to almost anything in life, but right now its all about cancer for me and I am just so grateful that this week we have a lot less obstacles than we did last week.
Making a fun spider Halloween craft-
waiting..waiting..waiting for the Docs to come in.
Loving the spider friend she made (his name is spook-fluff).
Skipping out of there.. happy to be done!
Clinic stats:Height: 106Weight: 17 kg (37.4lbs.)ANC: 1000
**Because Cami received such a high dose of chemo this time, they expect her ANC to drop below 500. This is her "danger zone". Please keep in mind that by next week Cami can get sick very easily. We love you all, but please STAY AWAY if you are sick. REALLY!!! We will throw rocks and/or pumpkins at you if you come near us with a stuffy nose. That is all. Thank you!
Tuesday, October 19, 2010
We have been so overwhelmed by the outpouring of support and love given to our family. We are SO extremely grateful for the many acts of kindness- from cleaning our house (Marla- thank you!), the dinners, watching Caden (or being his second mom...Jessie and Nat-THANK YOU!!!), running my errands (I even had someone make my kids birthday cakes this year for me (Holly- thank you)), visits, posts, prayers, phone calls, emails, donations and SO MUCH MORE!!! Cami has received so many wonderful cards, letters, packages, hats, headbands, blankets from all over the world. Friends, family and strangers have touched our lives and I wish so badly that I could thank you all individually, but that is impossible. Please know we are SO very thankful and love you all. You will never know how much your support means to us. It has helped us stay positive and encouraged. I wish there were words stronger than thank you, but it will have to do... from the bottom of my heart, THANK YOU!!!
I was very hesitant to share Cami's cancer journey publicly, but one of the reasons I decided to do this blog is that I hope one day it can help another family the way Millie's blog (along with others) has helped us. The blog has also been very helpful to keep friends and family updated and to get things off my chest. I feel connected to the outside world when I blog, when we cant leave the house this is HUGE for me. It has really helped me to (try) and stay positive and to express my thoughts and feelings. Thank you for your comments of encouragement and love on our blog.. you have no idea how much it helps me get through each day.
That being said...today I wanted to share some of the products that have been SO very helpful to our family.
A few of our favorite things..
When the Stroller Depot found out about Cami, they offered to give us a great price on this Phil and Ted's classic buggy. Normally we would have never needed a double stroller. Before Cami was diagnosed she would just walk, but now she gets tired so easily and her legs hurt (its a side effect from the chemo). Anyway, I have used this stroller time and time again. It has been truly wonderful to have and it works really well for an older child. Thanks Stroller Depot!
We have a friend who works for MonaVie. He brought over 8 bottles and lots of gel packs for our family. This amazing juice boosts your immune system and helps you from getting sick. Our family needs to be as healthy as possible so we don't get Cami sick. Cami's docs gave her the "OK" to drink this even though it can't boost her immune system, but it is something we KNOW is healthy going into her body.
Thanks Neeley's and MonaVie!!
When we told Cami she would be losing her hair, the first thing she was worried about was looking like a boy. I told her she could wear a dress every day if she wanted so that everyone would know she's a girl. I immediately started searching for the cutest dresses I could find. Cami's friend Millie introduced us to Matilda Jane. I fell in love with their clothes. When I called to order a few dresses I told Ashley (the trunk keeper) about Cami and how she wanted to wear a dress every day. Soon we got the dresses I ordered in the mail and we LOVED them.. Cami wanted to wear the (3) dresses I got her EVERY day. About a week later Cami got a package in the mail it said to open "only on her birthday". When she finally opened it, it was filled with beautiful dresses from Matilda Jane! She was so excited and spent the entire evening doing a fashion show. Now Cami has a dress to wear every day.
**If you want more info on Matilda Jane you can email Ashley at firstname.lastname@example.org I STILL cant believe she pulled this together for us.. she is AMAZING!
Here's Cami in just a few that they sent us...
When we brought Cami home from the hospital I was terrified! I was so worried about her getting sick and I knew that no matter how much I cleaned, germs would still be in our home. leave it to cute Meagan (Cami's dance teacher) to think of us.. she called her dad right up. He sells air purifiers and not only did he come right over, but he GAVE us a NASA certified purifier (the same kind they used after 9/11 to help with the smoke). This thing is amazing and I am confident it is keeping our house free of germs.
**If you are interested in more info on this awesome purifier you can email Al at email@example.com
Cami was supposed to start Kindergarten this fall, but the Doctors said it would be best not to send her. Cami was so bummed. She was really looking forward to starting kindergarten, but when her Doctor said she could go back to preschool instead she BEGGED to go back to Miss Michelle. By this time her class was full, but she squeezed Cami in. Miss Michelle has bent over backwards for us. She sent home letters to the parents explaining Cami's condition- asking them to please not send their kids if they are sick. She is so cute and understanding with Cami and Cam just adores her! Miss Michelle has given Cami a little bit of "normal" in her life and I can never thank her enough. I guess I didnt get a picture of them together this year, but here they are on the first day of school last year...
-Thank you Miss Michelle!!
(to all the parents who's kids are in Cami's class: I know you are putting in extra effort to keep her safe and we SO appreciate it --thank you!)
When my sister in law (Natalie) was planning Cuts for Cami she got an email from a photographer offering to take pictures of the day for us. We didnt even know this photographer and she was willing to GIVE of her time. Later I found out what an amazing photographer she is! Not only did she capture the event beautifully, but she has offered to continue to document Cami as she goes through this process. These are just a couple of the shots from Jen Harem Photography. Check her out for your next family shoot- she is seriously AMAZING!
-Thank you Jen, we love you!
My cute friend Tiana lives in New York and when she found out about Cami, she sent her a darling package filled with these super soft, and pretty headbands. Later I found out that her friend in NYC makes these headbands and made them especially for Cam. She has now put the same ones up on her website for sale and is donating some of the profits to Cami. This amazing woman doesnt even know us. We are a friend of a friend to her. I am blown away by her tallent and generosity. Check out Cranberries and Capers, these are some of Cami's favorite headbands because they are so soft, comfy and cute!
Aren't they adorable!?
These are just a FEW of my favorite things...I could go on and on... SO if I have missed something or someone, Im sorry. Please just know that my TOP favorite thing is my family and friends (new and old) who have blessed our lives in so many different ways. We love you all!
Monday, October 11, 2010
Cami went in for another dose of Methotrexate and Vincristine today. She also had to go see the "sleepy Doctors" to get a Lumbar puncture (when they take spinal fluid to test for cancer as well as giving her a dose of methotrexate directly into her spine). She did great getting her port accessed and she got to do her usual craft.
Cami hates seeing the sleepy Doctors. She says it leaves a bad taste in her mouth when they give her the "milk" in her port, and her throat always hurts after she wakes up, but she knows its what she has to do. I was so proud of her today for being brave. She went in there smiling and joking with the Docs, even though its her least favorite place.
Unfortunately she woke up not feeling very hot. She was really grumpy and tired and we still had to go back up to get her chemo.
Needless to say the rest of the day didn't go as smoothly.
Pat tried his darnedest to cheer her up.
I think it worked...just a little.
Weight: 17.4kg (38.3lbs.)
Sunday, October 10, 2010
Caden turned 2 today. This kid has been through a lot the last 3 months. He has been such a trooper being tossed from babysitter to babysitter, dealing with Cami's tantrums and letting me give almost all my attention to her while she needs it. Before Cami was diagnosed, Caden was very "babied" he was a mama's boy for sure. He has had to grow up a lot and he is just as happy as ever. He is so easy going and I am so grateful for that. We love you Caden! Thanks for being such an AWESOME kid!!!
We took him to Wheeler Farm for his birthday.
He LOVED sitting in the tractors and pretending to drive.
Cami couldn't get enough of the bunnies...
Caden just stared and stared at his cake.
He kept saying "choo-choo, ma ma.. choo-choo!"
Thanks Holly for making another awesome cake!
SOOO excited to blow out his candles!
Here he is with his favorite new toy-
He also loves his new Jordans...just like Uncle Jace (so cool).
Here is the Carver family singing to the youngest of 20 grandkids!
WOW thats a lot of kids!
We absolutely adore this little man..
Friday, October 8, 2010
I went to the hospital last night, but not for Cami. I went to meet a group of ladies who have given me advice, listened to me vent and have been an inspiration to me the last few months. Some of these women have been coming to the hospital a lot longer than we have, some actually live there, others are just starting their fight like us.
We all have kids with cancer.
We all understand.
I love them all.
I did not write this, but it just sums up how I feel so perfectly...
I belong to a special group of women
My friends and I have an amazing bond.
We never wanted to be in this group,
Yet we are in, for life.
Maybe we have met, maybe we haven’t,
Yet our love for each other is boundless.
We know the pain the other one feels,
And we share our victories small or huge.
Words like chemo, IV, Zofran , bald heads
Are always parts of our conversations,
As well as roidrage, tears, and meltdowns…
We always know where the closest puke bucket is ,
We can hold it in one hand and if necessary,
Swallow the sandwich the other hand was holding.
We can drive to the hospital ,
Park in the dark parking garage
Make our way thru the halls of the hospital
And to the appropriate floor,
Settle in a room, turn the TV on,
Give instructions to the head nurse,
Silence loud beeping IV pumps,
Direct a wagon AND an IV pole
To the playroom without hitting anything
Make our way back to the correct room
And all this, mind you, With our eyes closed at any given time.
We know how to draw blood from lines
Sticking out of little kids chests.
We can hold them down with one hand ,
While a nasogastric tube is inserted in their little nose,
And be on the phone with their dads at the same time.
We can live for days on hospital food,
And on maybe only one meal a day .
We know the names of up to 20 different drugs ,
Their purpose, dosage and time to be taken.
We are always on call, 24 hours a day ,
Seven days a week.
We are used to not always looking our best,
Hard to do with only a few hours of sleep . M
ake up , hair styling, skirts are words of the past .
We have become addicted to texting ,
hospital, clinic, home, wherever…
We talk sometimes at all hours of the night ,
We know we can count on someone to be up.
Then for one of us , the world stops .
She has to walk away, broken.
This job is over .
The job is over, but the fight is on.
Remember , I said we were in this forever.
We are friends, sisters, temporary nurses,
We are each others rock, each others punching bag,
We listen , we vent , we cry , we laugh together .
We share our lives and our deaths
We share our pain and our victories.
We are strong, but not by choice ,
Sometimes we win , sometimes we lose,
But never are we defeated .
We are not nurses
We are not doctors,
We are cancer moms…
(sorry Marie, we took this after you left)
Friday, October 1, 2010
Cami had her clinic day again yesterday. Her counts were high enough for them to up her dose of Methotrexate again. I cringe every time they up her dose. I am terrified that it will make her side effects unbearable, but she only complained of a mild headache and leg pains for a few hours after clinic. Then she heard the neighborhood kids out playing and she was over it. No headache can keep this girl away from her friends. She amazes me!
Weight: 18kg (39.6lbs.)
This picture makes me want to laugh and cry because this is exactly how she looks when she see's any nurse coming. She automatically goes into high alert.
Checking it out.
Happy girl even when getting chemo!
The highlight of our day was visiting some of our other cancer fighting friends, who have to stay in the hospital. First we visited 2 year old Erin, she is the sweetest little thing and Cami just adores her. Erin has been in the hospital for 2 weeks now, and has an estimated stay of 35 days. We have just fallen in love with her. Erin and her Mom, Jill have become great friends. Thanks for letting us visit guys.
Next we went to see the famous Rachel Steele. This amazing girl has been in the hospital for 19 days. Her room was SO cool! They had posters, jerseys, pictures, and notes hung from every nook and cranny imaginable. Rachel's mom, Marie had all sorts of treats for Cami. Cami left there with new "Steele Strong" bracelets, a cupcake, and an orange bag of goodies. We are hoping Rachel will be able to go home by our next clinic day, but I think secretly Cami cant wait to go back again!