On July 10th, 2010, Our sweet Camryn was diagnosed with Leukemia. After the initial horror, we bucked up and decided that one day we would want to look back on this whole experience so we could remember the blessings, the happy moments and even the hard things that taught us lifelong lessons. We also wanted a place for those who love Cami to come for updates and to leave her words of encouragement. Thank you all for your love and support.
We had clinic this morning at 8:30, but we left nice and early because of the snow. Cami was less than thrilled about being woken up, dragged out into the freezing cold, and all just to get POKED!!! She was mad and tired.
She perked up once we got there. They got us right back, her chemo was sent up from the pharmacy almost immediately and she got lots of attention from all the nurses and Doctors.
It was nice to have a quiet day at clinic for once.
Cami has been asking Rachelle, the child life specialist, to show her what an actual port looks like. Rachelle brought her one to look at today and she was fascinated!
Cami has named her port "Chloe". When she gets fluids or chemo she says "Chloe" is getting a drink.
Here is a closer shot. Cami's port sits just under her skin, right under her ribs. You can see the bump in most of her clothes and if you look closely at Cami's neck you can see part of the line just under her skin. It creeps me out, but she calls it her noodle and likes to wiggle it around under her skin. The circle in the center of the port is where the nurses poke her needle, the line goes up to her neck and into a central vein. It is pretty interesting if you ask me...
Cami got to stick the port with a needle.
These are the same needles they use on her. This made it much easier for her to understand.
This is what Cami's port looks like when it is "accessed".
Happy to be going home after only 3 1/2 hours (we are normally there for at least 5)!
Clinic stats: Height: 108
Weight: 17.4kg (38.3 lbs.)
Cami's ANC is high enough to celebrate Thanksgiving with our LARGE family. We were half expecting it to be at 0, and if that were the case we would need to keep her at home. We are going to enjoy a day full of family and friends and for this I am truly THANKFUL. Happy Thanksgiving!
It was a long day at clinic this week, we got there at 10:30AM and didn't leave until 3:30PM. Cami got vincristine and that darn "red devil" chemo again. Last week Cami was VERY nauseous after getting the "red devil". I asked them to give her a different anti-nausia this time and she felt MUCH MUCH better after...YAY!!!
Cami also finished her 7 days of steroids and boy are we GLAD! She has had raging fits, she cries over EVERYTHING and is just plain grumpy when on these pills. We get a week off, then we have to start another 7 day round. One good thing about the steroids is that she is eating again! Last week we had a little visit from the nutritionalist up at Primary's. She was worried about Cami's weight because it had dropped below her diagnosis weight. She said that if Cami kept dropping at this rate, she would need to be put on a feeding tube. This is obviously not ideal, so we are VERY happy she is eating again!
Cami thinks its the coolest thing to push her IV pole around the clinic. She runs into everyone and everything, but she wont let anyone help her. Its one of the few things she has control over, so I let her do it.
We got a chance to go visit our little cancer buddy, Skyler.
He has been down in the ICU for a couple months and just got moved back up to the oncology unit. He has come so far and is such a fighter! If you haven't read his story, you should check it out here. He is an inspiration!
Skyler gave Cami a bear that is exactly like his. She loves it and calls it her Skyler bear.
Thanks Skyler and Crystal!!
We love you guys, keep up the fight!
Cami was OUT the minute I buckled her seatbelt in the car.
Its like I can see her blood levels dropping.
They expect her ANC (ability to fight infection) to get to 0 this week.
What a sweet little sleepy-head.
Cami has been doing better than I thought she would in this phase. I know it has only been 4 days, but so far she is handling this harsh, yucky poison like a champ! Don't get me wrong its no cake walk for her, but Cami's attitude has stayed pretty positive regardless. She has been more nauseous than usual, her legs pains are more intense, she is really weak and tires easily, but she is being strong. The steroids are starting to kick in. She is eating a little more than usual and we are most definitely seeing mood swings.
These days we keep a barf bucket handy at ALL times.
In a span of ten minutes, Cami can go from playing to completely ZONKED out!
We had to go back to clinic today. Cami had to get an echocardiogram because the "red devil" chemo can cause heart damage and they want to stay on top of that. She was very brave and watched a movie the entire time. While we were walking to the cardiology unit Cami kept saying "mommy you are going the wrong way. I promise! OUR clinic is on #4 in the elevator." She knows her way around all too well.
She also had to get another chemo called Asparaginase or PEG shot today. This shot has to be given into the muscle, and the nurses say it is one of the most painful shots anyone will ever get. She got 2, one in each leg and she screamed so loud my ears were ringing after. She also said "I wish I didn't have cancer" to her nurse, which broke my heart. The nurse just said "we really wish you didn't have cancer too".
Side effects of the PEG shot: loss of appetite, local skin reaction at injection site, abnormal liver and pancreatic function tests, allergic reaction, high blood sugar, drowsiness or headache, increased thirst or urination, decreased clotting factors in the blood.
She wanted to send a picture to daddy (who had to work today) after getting her shot.
She was trying to wave to him, but you can tell how much pain she is in.
I just had to share this video that was taken last week at the end of her 3 week break from chemo. It was so wonderful to have our Cami back dancing and singing without pain. It has been 5 months since we have seen Cami in her true form and THAT is why it was extra hard and emotional to start this extra heavy-duty chemo + steroids again.
as much as I hate this process, I know it is what will bring my Cami back (cancer free) for GOOD...
I CANT WAIT!!!
PS- this video is a little long and repetitive, but I couldn't bring myself to cut it.
I will begin with the positive. Today we started the last phase before maintenance, Delayed Intensification. Today was a little like the beginning of the end. This phase totals 57 days (if everything goes as planned). We are looking to be in maintenance towards the end of January. After January Cami's hair should start to grow back and we will only have to go to clinic for chemo once a month...this is HUGE and we are getting so close I can taste it! This is all great and exciting, the only drawback is we have to make it through this BRUTAL round before we get there. Cami will be on 9 different drugs in this round; Dexamethasone (steroids again...blahhh), Vincristine, Doxorubicin, PEG-asparaginase, Thioguanine, Cytarabine, Intrathecal Methorexate, and Septra.
Like I said it is BRUTAL.
Today Cami got: Methotrexate, Vincristine, and Doxorubicin (or the red devil as they call it up at clinic). Cami has been getting Methotrexate and Vincristine this entire time, but the "red devil" is new. It is literally red. Some of the side effects are; Nausea/vomiting, hair loss, pink or red urine, low blood counts, mouth sores, heart damage, nail bed discoloration, sensitive skin that burns easily. The Doctors said to expect transfusions and low ANC's (meaning low immunity) during this phase. Lovely.
Doxorubicin (Red Devil)
While we waited for her chemo infusions they gave Cami a doll and real medical supplies to play with. She cleaned and accessed the port, taped it up, took a blood sample, and hooked her up to chemo. It is amazing how closely she watches what is happening to her. I swear she could access her own port if needed.. she was a pro!
We also had to see the "sleepy Doctors" for yet another lumbar puncture. I was very anxious about this one because our last lumbar puncture didnt go very well and Cami was in EXTREME pain for about 7 days after. I was terrified this might happen again, but Cami was giggling uncontrollably before they put her to sleep, it was so funny because her laughing cut off mid giggle when they gave her the anesthesia. That stuff works FAST! It took her a while to wake up, once she did she was groggy, but not in pain.
I was so relieved!
Here she is with the anesthesiologist, giggling her little head off.
Trying to wake up.
Cancer is never fun, but we are making so many friends while going through this and it was a little party at clinic today. Millie was there and we met darling Elena for the first time in person. She was getting her last treatment in Delayed Intensification. It was nice to chat with her mom, Brianna about what to expect this round.
We were so glad to have Grandma Di-Di there with us today. I needed my Mom's support because I was an emotional wreck! It was a LONG day of treatment, but Cam handled the 6+ hours with a positive and happy attitude.
She amazes me more and more each and every day.
I am one proud mama!
We love you Grandma Di-Di! Thanks for being there! XOXOX
It has been 18 days since Cami's last chemo treatment. She has been so happy, and energetic the past week. She has been a joy! We have started seeing glimpses of our old Cami back and it has been wonderful to say the least. Thursday she will start the final round of treatment before maintenance, its called Delayed Intensification and from what I understand its going to hit her pretty hard. I am SO dreading the day that my little Cami goes away again. I know she will be back, but now that I've gotten a taste of my normal, happy, healthy,little girl I don't want to let her go. I am trying really hard to enjoy these next couple days without letting the anxiety get to me.
Cami's home care nurse came to check her counts in between clinic visits and I had to snap a picture of how good Doctor Cami is at drawing her own blood and then doing a saline flush. That is one thing I never thought I'd see... EVER!
We were invited to St. George this past weekend with some cancer friends, the Flamm's (Millie's family). We were so happy that Cam's counts came back at 1600 so we were able to go! It was nice to take Cami away while she feels good enough.
The kids did great the entire ride down. I love my sleeping babes-
It makes me all choked up to see these two together. Knowing what they have been through at such a young age amazes me. They are great little buds.
Aren't they the cutest little things?!
We also had a chance to get together with another cancer family (who I've only ever talked to online). The Prince family (or Chases fam). The Daddy's had fun watching the U game, the kids had a blast and us moms chatted the day away. We are so grateful for our friends. It is incredible to have people who just "get" it.
Thanks Prince family!
Here are the three cancer fighting cuties.
Cami, Chase and Millie
Chase is 2 1/2. Caden just adored him. They were good little buds. Every time Caden throws a tantrum or runs around like a crazy person I think of Chase and his mom, Dani. I honestly don't know how she does it.. can you imagine a 2 year old hooked up to tubes and waiting around in Doctor's offices for hours at a time. Oh, and she also has a 2 month old. All the while driving to SLC from St. George EVERY week to get his chemo!
Yeah, she is amazing!
Here are the little buds Chase and Caden.
Chase also has an older sister, Abby, who is exactly Cami and Millie's age. She was so cute with the girls and they had so much fun together.
We had a very hectic Halloween this year. There were lots of SURPRISES and last minute running arounds, but it ended up being the best Halloween EVER! Because of this recent cancer thing we have going, we are involved in a few awesome organizations and they all had parties. Our schedule alone made things crazy this year, but then I got the flu on top of it. Now normally I would have just dealt with it and had a normal day with the kids, but we cant chance getting Cami sick (especially on Halloween) so Pat took work off and I was quarantined. This killed me because I dint want to miss any of the parties, I needed to be there to help Pat finish up his costume, and lets face it..things just dont run right when mom's not around! Well, Pat really stepped it up and got the kids dressed, to almost every activity and finished his super cool costume! Plus we were able to avoid getting Cami sick... HOORAY! What a guy! To top it all off we had an unexpected Halloween treat.. my sister had her baby girl on Saturday! So, once again I handed the kids over and rushed to the hospital. Once again the kids were perfectly taken care of and happy. He's a good Daddy!
Cami was just torn between 2 costumes this year and we decided with all the parties she had, she deserved both of them. Seriously this girl is getting super spoiled, but I honestly couldn't choose one either! She looked too darn cute in both of them!
She decided on a bumble bee...
and a candy corn witch...
Our little man was a lion...
Here they are ready to go to the Make-A-Wish party
Pat works at Smart Bomb. They make video games and these people are super creative to say the least! They all get REALLY into Halloween. Smart Bomb has a big costume contest every year and it is INTENSE. Almost every costume is homemade by these guys and each year I am blown away!
Pat decided to be a toy soldier this year.
We used a TON of spray paint and face paint, but it turned out pretty great!
Here's most of his office...
Here are close-ups of some of the costumes. A character (big sister) from the video game Bioshock (all made from scratch), the Mad Hatter (keep in mind EVERYTHING was handmade: the hat was made from cardboard and material), a gigantic batman PEZ (made from cardboard and paint), and a spooky pirate with a frame.
Here's our fam: the lion trainer, lion, bumble bee and toy soldier.
Cam's super cute preschool class--
The best part of the week was welcoming this beautiful little pumpkin into the world.
Ria Wood was born Saturday Oct.30th @4:45 PM.
She was 8 pounds 2 ounces and 21 inches.
She is absolutely beautiful. We love her SOOO much!
Great job Jace and Jess!
Cami couldn't wait to get her hands on this baby, but we weren't comfortable letting her go to the hospital with all the potential germs. Cami got all dressed up and even put a little makeup on to go visit her new cousin. She was so excited! Once we got there, Cami wouldn't put her down! She just stared at her and rocked her. We are all in love.
There's nothing like a new baby to put a smile on your face!