Cami all packed up.. ready to kick some cancer tooshy!
Yes, Cami bounced back quickly, but this round has been really rough on our little pumpkin, and we are only half way done! After just a few days of chemo, she had major bone and muscle pain, sores throughout her mouth and gums, she was so nauseous even while on continuous zofran and she just had a general feeling of "ickiness". She turned down visitors (which is very unlike Cami), she slept a lot, and she just wasn't her happy self.
In the first 5 days, Cami got very high doses of chemotherapy. She was given two different kinds of chemos called: Etoposide (or VP-16) and Cyclophosphamide (or Cytoxan). The Cytoxan gave Cami a weird side-effect and about 5 minutes after they pushed it, her nose felt like it was on fire and almost like she was under water and breathed in a bunch of water. It was miserable for her, so she was put on lots of pain meds to help with that reaction.
Cami getting one of her chemo's.
The nurses have to gown up to protect themselves from getting any of the toxic chemicals on them.
The chemo's were pushed through her central line at different times throughout day. These particular chemo's can really damage the bladder and kidney, so they gave an additional medication called Mesna with them to help protect the bladder, they also drip IV fluids at a fast pace all day and night so that the chemo doesn't just sit in her bladder. This was the exhausting part. She had to get up every 2-3 hours day and night. It wouldn't have been so hard if she could just jump out of bed like a normal kid, but she can't. She had a giant IV pole attached to her and she needed our help unplugging it and rolling it to the restroom each time. Then we had the nurses and techs coming in through the night to change her fluids, give her meds, take her temp, check her blood pressure, and heart rate, etc, etc... it is just EXHAUSTING! Around day 3 Cami started to feel the effects of the chemotherapy. She was very nauseous and so tired.
Cami also started to puff up and retain water and her glucose and sodium dropped drastically. The Doctor's figured out that Cami had what is called SIADH (Syndrome of Inappropriate Anti Diuretic Hormone) this is a side effect of the chemo's and it is basically when the body stops flushing fluid, instead it retains fluid. This is a hard situation, because they have NO CHOICE but to give her bags and bags of fluid in order to protect her bladder, but at the same time she was swelling and SO uncomfortable and those levels were dangerously low! Cami was SO puffy she said "mom, my skin feels like a pair of skinny jeans". Once they finished her chemo, they unhooked her from her fluids and restricted her fluid intake. Within 24 hours, her puffiness had gone down SO much! She lost 3 pounds of water weight in 2 days after that! She is still retaining a little fluid, but they say it will flush out within a few weeks. We are so happy that she is feeling better and that she is more comfortable now! Her glucose and sodium levels are now on the rise and we couldn't be happier!
These pictures were taken only ONE week apart!
This shows just how much fluid her poor body was holding!
They encouraged lots of walking while her levels were high enough to help get rid of that extra fluid. She LOVED pushing all her animals in the wheelchair!
OK, now that I have updated you all on her health, I want to let you know the little information we have been given about her transplant. As most of you know, Cami has ONE perfect match out of the TEN MILLION people that are enrolled to be donors on the registry. Here's what we know about her one match: he is a male in his 20's, who joined the registry just one or two years ago. The marrow registry keeps everything VERY confidential to protect both the donor and the recipient. The potential CURE for our daughter is literally walking around in his body and we have been on pins and needles waiting to hear his response.
Well, just a few day's ago we heard the AMAZING news that he is willing to move forward and donate to our Cami! What an amazing gift! We are so grateful to this man for the selfless act he is about to perform. I keep trying to picture in my mind who this man is that is walking around with the key to saving Cami's life. He may not even know how crucial he is to us!
The only thing he knows is that she is an 8 year old girl with cancer, who needs his marrow to stay alive. Wow. I am just amazed at this man that I don't even know.
Meanwhile, back at home... Pat and I have been trying to hold our little family together the best way we know how. We switch off every other night sleeping at the hospital so that Caden can at least get a small dose of each parent. We enrolled him in a new preschool that goes all day! Honestly, this is one of the things that makes me the saddest. This is supposed to be my last year with a preschooler at home. He is my little buddy and I LOVE our special days together. I miss him and I hate that I never get time with him and by the time I DO get to see him, I am so emotional and exhausted it is difficult to keep up. Caden is really struggling with all of this change. I'm sure he feels abandoned at times and it breaks my heart. This has been just about as hard on Caden as it has on Cami. I love my little bubba so much and I can't wait for our playful days together again.
First day at his new preschool
Caden loves to visit his sister and he is always very concerned about her.
He washes his hands the second he gets home from school "so his sister can be healthy".
Oh, bubba.. I love you!
Speaking of barely holding it together, I just have to say that there is NO WAY I could ever pull this off without my amazing husband! Pat has been incredible and is always picking up my slack. He can always make Cami giggle (even in her worst times) and he can always turn a hard situation into something fun. I am so thankful that my kids get to call him dad.
Pat planned a special Daddy Daughter date on one of his nights at the hospital:
a candlelight dinner on the hospital patio. Complete with Cheesecake factory and flowers. Thank you Jess and Lindsay for helping set this up!
So many people have helped us get through the last few weeks. Not a day goes by where I don't get a text, a phone call, an email or a Facebook message asking what can be done or offering words of encouragement and strength. We have had so much support and there is NO WAY that we could get through this without the team of people holding things together for us.
BUT, the one person I really needed was my sis. Jessie is my only sibling and growing up it was just me, my mom, and Jessie. We are very close and I just NEEDED my sis through this. Unfortunately, Jessie lives in North Carolina with her little family and so, for a month of torture we tried connecting through Facetime and phone calls, but it is just not the same! Some sweet friends of ours gave buddy passes to Jessie and her kids and she was able to make it out for a week! It was just the pick-me-up I needed. Oh I love my sis. Just having her around made things better.
The minute we got the word she could go home,
Cami packed up as fast as she could and scooted out of there as fast as her little feet could go!
Now, we are home for 8 days and them back to the hospital for the second half of chemo round # 2!