Monday, September 23, 2013

Little Miss Incredible!

We set out for this second round, expecting at least a month long stay, but Miss Cami has done incredibly well and she shocked the Doctors with how quickly her levels came up this round!  We were at the hospital for 13 days (which is almost unheard of after the amount of chemo Cami got).  We are so thankful that her body is so strong and she is able to jump right back up after being knocked down.  

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


splashing makes us happy



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!

32 comments:

  1. I loved reading this. I am so happy for you that the donor is going to come through for Cami. And reading about Caden brought tears to my eyes. What a sweet brother he is. I am praying for your family constantly.

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  2. This news is an answer to so many peoples' prayers. I can only imagine how difficult this is for everyone in your family, but you are constantly in our prayers. If there are specific things that would be helpful for any member of your family (Caden) please post them! You are such a beautiful family! Thanks for updating! I hope the second half of this round of chemo goes smoothly with less side effects!

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  3. I have prayed every night they would find a match for her! I am in tears I am so happy for you guys and you will still be in our prayers everyday! I am so happy to hear she is doing so good. Being a cancer mommy is not fun at all I know how you are feeling only I can't imagine having a little one at home too.......you guys are amazing!!!

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  4. Gwen and I could not be happier for you and Cami! There are some amazing people in the world who are willing to share their life saving bone marrow! Keep that miracle in progress!

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  5. That Cami, such an incredible girl! I saw pictures of you and her together on PS I Adore You's Instagram...she's got her mana's beauty! :) Thank you for sharing her story. It puts things into perspective and inspires me, and I know so many others. The love you have for Cami, your sweet Caden, and super husband/father is beautiful! And I know how a sister has a special spot in our hearts only they can fill. Glad she visited. And the donor!!! Prayers for that man and that it all goes smoothly! What a miracle. Wow, this turned into a novel. ;) But again? Thank you for sharing. Hugs and kisses to that lovely Cami of yours! xo

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  6. This was simply an AMAZING week with the INCREDIBLE news of the donor and that Cami was able to go home 2 weeks earlier than expected! That is just so wonderful! We are continuing to pray and always thinking about you all! Can't wait to meet you all at the walk on October 5th!! :)

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  7. I just found your blog yesterday and have been thinking of and praying for your sweet Cami and the rest of your family!

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  8. Such great news.... the fast stay... and especially the Angel willing and probably excited to donate. You guys are continually in our prayers. I especially pray that round 2 goes well and that those cells she receive just stick and grow like crazy!

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  9. What an amazing little girl! I am tears reading about her donor--there are so many good good people in this world! Such an amazing blessing for your family. Go Cami Go!!! You guys can do this :)

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  10. Everything about Cami is so cute. The picture of her with all the stuff she took to the hospital is too cute, I love how she is always in bright colors and just so girly! I am so happy the donor said yes, what a wonderful gift to be able to give someone. Because of Cami I joined the registry. I hope to someday get the call that I am a match for someone.

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  11. What a wonderful gift to receive from a total stranger. I will continue to pray for Cami and now for the donor. What a blessing. Lisa K.

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  12. I think of your family every day. Bless you all. Such great news too!

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  13. I just found your blog from House of Smiths. Your daughter is beautiful and strong! You have raised a little trooper! I pray that she will heal and that the transplant goes well. I also hope your family stays strong and never gives up on each other. Take things one day at a time. God bless.

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  14. I just found your blog and wanted you to know how gorgeous Cami is, I am sure you already knew that. I am praying for her and just signed up to be a bone marrow donor, thanks to her. I will tell my husband and family to do the same when they get home.

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  15. My baby sister would have been 26 this year. She had AML and in just 11 short months it took her back to her heavenly father. Her name was Camille and seeing your beautiful Cami reminds me of my sweet sister. I was lucky enough to be her bone marrow donor as well as stem cells after a relapse 6 short months after transplant. I am praying for continued strength for your whole family and a successful transplant. What a great opportunity to help save a life, I hope that young man knows what a wonderful choice he has made. My heart goes out to you. Love and support from my little family to yours. xoxo

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  16. So glad Cami gets to go home for a few days. Sometimes being home and surrounded by your family is just what you need. And what an answer to prayer that a donor has been found and he is willing to help out. So many things to be thankful for. Seeing your little girl and reading your blog has made me more thankful. I ask myself everyday to find one thing to be thankful for no matter what happens in the day...I am always blown away at all the ways that God provides and how much we have to be thankful for. Thank you for sharing Cami's story and your families journey with us all.
    Saira

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  17. Thank you for sharing your journey. I think of you and your sweet family everyday! I know we've never met, but know that I'd love to help in any way I can (we live close, and have lots of mutual friends :) ). Love and prayers to you all

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  18. Hi, I found your blog from The House of Smiths.
    Cami is a true inspiration!
    I share an office building with a great company that provides free henna body art to cancer patients, it might be fun for Cami. Www.paintedheads.com

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  19. Hi Chelsea,
    You might not remember me, but I am Brett Turmans little sister Ashlee. I remember you helping me repaint a little nightstand back in the day! but anyways I found your blog through Bridget Blaser on Facebook, and I just wanted to say you and your little girl are truly amazing!! I can tell from the pictures on your blog that she is as beautiful on the inside as she on the outside!! What an inspiring little girl you have. She is adorable!! You guys are in our thoughts and prayers!

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  20. Welcome home! It is so great to see this post today. I first heard of your story yesterday from nienie and then today from House of Smith! We are organ donors, now will get on the bone marrow registry too! Your family is in our prayers.

    Marylu

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  21. Chelsea, you amaze me every day! You stay so positive which is hard for a lot of people to do in a regular day not to mention what your family is going through. You are a good little mom and Cami is such a blessing. Not many kids can go through what she is going through. You guys are such a good example of enduring trials well. I can relate to the chemo ickyness...I had the same thing happen with my cytoxan. Just have them run it slower and the burning won't happen. It all just makes you feel gross and sometimes sleep is the only thing that you can do. I never realized just how hard it all is until I have had to go through it myself. I know how strong you have to be - and Cami out shines us all. Hugs and kisses to you. You and Pat are doing such a great job, you should be proud of how you have split your time for both of your kids and are holding it all together. You may feel like you aren't, but there are not many people who could do what you are doing. Hang in there and enjoy your precious time at home!! :) Love you!! Tiff

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  22. Okay, so I'm not going to say all the things I want to say because you already know how beautiful, brave, spunky, adorable,patient, courageous, inspirational and amazing your daughter is. I won't say that I can't believe how amazing it is that you all seem to cope so well with such a difficult situation. I won't say that Cami is amazing for taking everything in stride. That photo of her lifting her shirt to receive her meds when the nurse is wearing full body armour actually touched me very deeply. What I really want to comment on is how utterly fashionable she is. Also, this is a small thing but not really, you have made her bed at the hospital so inviting, stylish, comfy and cozy looking that I want to jump right in there. It is clear that the care you give her, even in the little things is the most heartwarming display of parental love. You've left no stone unturned in an effort to make this terrible thing easier on her. I am not normally outwardly religious but God Bless You All!! Godspeed with Cami's recovery and best to all of you!!

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  23. Cami,
    We were at the Cool Kids Campaign Learning Center in Baltimore, MD this morning and saw a BEAUTIFUL photo of you with the Cancer Fears Me tattoo on your head. We were there hand painting tiles, with other cancer patients, survivors and siblings. The tiles will be installed on a wall in a local mall in the coming months. Our youngest of three, Allison, is seven and finished her ALL treatment in July. We just watched your Youtube video celebrating the completion of treatment the first time. You did a FANTASTIC job narrating it. She LOVED hearing you tell your story. She giggled and nodded in agreement as you talked about eating SO MUCH when on steroids, losing your hair, your Make-A-Wish trip and all the pills you took. Thank you for sharing your journey with us. While we haven't met, we will carry you in our hearts, keep you in our thoughts and prayers, and be with you in spirit as you show cancer who's boss once and for all!!!! Sending all of our LOVE to you and your family. Meredith, Roger, Grace, John and Allison Kelly

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  24. Cami you are so brave, keep fighting! You will win!

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  25. Dear Cami,

    My name is Megan and I live in Switzerland. I have a little girl who is 5 and a little boy who is 9. I found your story through another website and I think you are such an amazing, strong girl. I wanted you to know that you have inspired me. Every year in October we have a Halloween party at our church and because of you, this year I am trying to organize a blood drive during our Halloween party! The signs are going to have vampires that say, "I want to suck your blood, to help save a life!" And wouldn't it be funny if I could get the red cross people to dress like vampires?! I hope I can make it happen.

    I am also signing up to be a bone marrow donor because of you. Obviously I won't be the one to donate to you, but if I am chosen to help another sick person and their life is saved, I want you to know that YOU saved that life, because I never would have signed up if I hadn't read your story. I know there are many other people who have volunteered to be donors because of you as well; think of how many lives you have saved by inspiring so many people to donate!

    Hey, keep kicking that cancer's butt won't ya!? You're doing great and me and my family are sending our strongest energy all the way from Switzerland to help you fight! Look how strong you are! Your influence has reached all the way across the world. If you can do that, cancer has no chance against you!

    Love, Megan

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  26. So happy for you and all the good news! I am sure you are enjoying your stay home. My prayers are with your family!

    Vickie Johnson

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  27. Just came across your story from another blog. I felt the need to tell you, as a mother, that I have been through all of this too. My daughter was diagnosed with Leukemia when she was 4. It was a slam and slap across the face across every member of our family and was the worst time of our lives. We also had a younger son who's life was put on hold so that we could put 100% of our lives into getting our little girl better. It was a painful and extremely stressful time in our lives, but I just HAD TO TELL YOU that my daughter is 10 years old now and finished chemo 3 years ago and is AMAZING! The survival rate with children is SO INCREDIBLY HIGH and kids are SUCH amazing fighters! Anyway, I just wanted to send you my thoughts, prayers and best wishes and tell you that things will get better!!!! She will get better and people will look at her and never know she was ever sick. Stay strong, keep positive and remember that you are not alone and it's ok to ask others for help when you need it. Sending prayers and hugs! Michelle Quinn

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  28. Hi, I've read this blog a couple of times, I just want to say Cami looks so much like you! Shes a beautiful little girl. She Will Win. Shes in OUR prayers. We love you Cami!!

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