Friday, January 7, 2011

The beginning of THE END, or the end of the BEGINNING?!?

Its difficult to describe the way I am feeling tonight.  It is a mixture between excited, happy, overwhelmed and scared out of my mind!  

Let me was a big day for our little Cami, well for our entire family actually.  Today Cami started Maintenance.  Maintenance is a milestone and means the end of the intense part of Cami's treatment, but we still have a lot of chemo ahead of us.  So, is it the beginning of an end or the end of a beginning?  I dunno, but it is exciting and happy because: instead of her weekly clinic visits we will go into the hospital ONCE A MONTH for chemo, Cami's hair should start growing back (although she says she doesn't want it to, she likes the feel of her bald head on a cold pillow at night), her counts should stay up allowing her to have a more normal life.  It is scary because: she will only be checked by an oncologist once a month (which terrifies me), it also means less chemo in her system, its a good thing, but it scares me that the cancer will come back without the heavy-duty chemo keeping it away.  It is overwhelming because: instead of being pumped full of toxins weekly we will be giving them to her orally at home.  The calendar they handed me today was full of pills and schedules that looked so foreign to me.  I am going to have to get organized in a big way so I don't mess up my daughters chemo.  It is a huge responsibility.  

Here are the instructions for the pills (tell me this isn't confusing) this will be her pill-popping schedule for the next 2 years...
6MP (chemo pill):  give "Camryn" 1 tablet by mouth ONCE daily for 6 days and 1 1/2 tablet by mouth ONCE a week.
Dexamethasone (steroids) 2MG: give "Camryn" one tablet by mouth TWICE daily for 5 days once a month.
Dexamethasone (steroids)  0.5MG: give "Camryn" 1/2 tablet by mouth TWICE daily for 5 days once a month; take with 2MG tablets; start on 01/06/2011
Methotrexate: Give "Camryn" 6 tablets by mouth every THURSDAY except on week of backpoke.
Septra: give "Camryn" one-half tablet by mouth TWICE daily on Mondays and Tuesdays.

This means that almost every day will be different.  There is NO routine each day, which makes it even harder and more stressful. 

The side effects of Cami's new drugs are:
6MP: low blood counts, Liver toxicity, Increased bilirubin, increased liver enzymes, jaundice, abdominal swelling, Nausea and vomiting, Poor appetite, Diarrhea, Mouth sores (rare - usually seen with higher dose), Loss of fertility, Skin rash, dry skin, itching, discoloration of the skin, and darkening of the skin.

Dexamethasone (steroids): Increased appetite, Irritability, Difficulty sleeping (insomnia), Swelling in your ankles and feet (fluid retention), Heartburn, Muscle weakness, Impaired wound healing, Increased blood sugar levels, Headaches, Dizziness, Mood swings, Cataracts and bone thinning (with long-term use).

 Methotrexate: low blood counts, hair loss, kidney toxicity, Skin rash, Diarrhea, Hair loss, Eye irritation, Darkening of the skin, Loss of fertility, mouth sores, nausea vomiting, loss of appetite, abnormal liver function tests, headache, drowsiness, and blurred vision.

 Here is the calendar they gave me (along with my added notes)

Here is Cami's trusty pill box

I feel really bad because I have been telling Cami that today was a BIG DAY because she started maintenance and that meant she would be getting less medicine and feeling better.  Cami has been so excited to start school again, have play dates, start dance and just plain be a semi "normal" kid again.  Well, unfortunately she left clinic today feeling worse than ever.  She had to see the sleepy doctors and get a lumbar puncture.  When she gets this done there is always a chance they can hit a nerve or just have to poke her multiple times.  The goal is to do one poke, take out spinal fluid and put the same amount of chemo back in.  If the amounts aren't exact, Cami ends up in pain because her spinal fluid is too low.  Today was one of those days.  She was poked 3 times total.  They call it a "traumatic LP" and traumatic it is.  Since we've been home Cami has had a massive headache and her back is just killing her.  She has to lay flat on her back to make the headache go away, but it hurts to lay on her back.  She is pretty miserable today.  We are trying to keep her as still as possible, drinking lots of liquids and getting as much sleep as possible.  These are not the easiest things for a 5 year old.  It is just one more reminder of why we are so happy to be in maintenance... she will only have to have an LP once every 3 months.  YAY!!!

Here's Cami up in clinic, we had to go back up after her LP so she could get fluids which would help her body make more spinal fluid.  This little therapy dog made her smile, but you can tell by how she is sitting that her back is in pain.  She held on to that little table the whole time so she wouldn't put any pressure on her back.  

At home laying flat with some of her favorite animals to keep her company...

Poor baby, OUCHIE...

I just have to say how proud I am of our little Cami.  She has been through absolute torture at times and has made it through a stronger person.  She is more compassionate, and loving.  She appreciates the good times and has taught our family to live in the moment and ENJOY it.  She smiles even on her worst days.  She is an example to many.  Cami is a fighter and I am so proud she has made it through the hardest part.  

Clinic stats:
Height: 107.8
Weight: 17.4kg (38.3 lbs.)

ANC: 2,100
WBC: 3.7
Hematocrit: 29.3%
Platelets: 554


  1. What an amazing little girl! I am so happy to hear you've met such a monumental milestone. That schedule does look way confusing! I know you'll figure it out though. You have done an amazing job taking care of her. Congratulations on moving on, I hope it proves to be much better for Cami and your family.

  2. What great news!!! Yay!!! You should have a maintance ParTay for her!!!
    That would be fun;) Im soooo happy for guys to get over the hard part. We
    will continue to pray for you guys. I next phase does look confusing but you
    will do a great job! You're an Amazing Mom and Pat is an awesome Dad! Give Cam kisses for us! Mia misses her and talks about her all the time!
    love ya guys....
    Danielle/ Mia

  3. Chelsea, you and Cami are so amazing and so strong. I admire you and your courage. I especially admire your little girls courage and strength. Your family is in my thoughts and prayers. I don't know how you do what you do. I truly admire you.

  4. Yay for Cami and congrats on making it to this point!

  5. Congrats!! Im so happy you guys are finally to this point. Cami deserves to start feeling better and live a more "normal" life. She is such a sweetheart and so brave. Good luck with that pill schedule. Just looking at it I got a headache, but if anyone can do it its YOU. You are amazing and Cami is one lucky little girl to have you for a mom!!

    Crystal Isaacson

  6. Ohhhh poor cami! Traumatic back poke sounds like the perfect name! Sorry she has to deal with that poor kiddo! Shes so good at bouncing back Im sure she'll feel better soon....
    I know the pill schedule looks scary but I know you'll do a great jog! Hang in will start getting easier very soon! Enjoy a nice long 4 week break from the clinic!

  7. I am so glad you are onto maintanence. Cami is a fighter and she is going to continue to kick this cancer out of her body FOREVER!! If all is looking good we will still plan to see you on the 12th? Oliver is having surgery the 13th so I may send our 1st counselor in my place?

  8. aw poor Cami! Tell her she is our hero, and so much stronger than any grown up!
    I'm excited she is entering this new phase... I'm sure you will get the hang of it in no time!
    Love you guys... let us know if you need anything at all!!

  9. Man it gave me an instant headache when I read that this is your path for the next TWO YEARS! Plus thinking about that darn devil needle! You are the true hero here!

    It was so splendid to see you on New Year's Eve and Pat and Caden on New Year's Day. Tell Cami we can't wait to see her now that she's out and about!

    Love you!

  10. Wow, I am glad you have finally made it to this milestone. I hope it is a better period of care for you and your family. You are all so strong and I am constantly in awe of you all.

  11. Thinking about Cami, you and your family! Hoping this maintenance will be oh so good!!! Know you are all loved and thought of often-- thank you and Cami for inspiring all of us who read this blog and pray for you all!!

  12. Gooooo cami!!! , That is awesome that your family has come this far in your adventure. Pat and Chel you are true warriors facing this shit that nobody should have to go through. I completely agree with Cami being bald is the way to go, but she will love her hair when she emotionally adjusts to it. My prayers and wishes are with you all and especially with little Cami. This is just another chapter in what you will go through and I know that it will make all of you more stronger. Just remember Florida will come sooner then you think! and after that and a little more suffering all of this will be in the past. -Dave G

  13. oh, poor cami! i hope she got feeling better quick!

    starting maintenance already?! wow, cami is a rockstar! congrats!!!!! getting to maintenance is such a huge milestone. HUGE! we have gotten to take elena out to the store multiple times, out to eat, to play with friends, and of course - to disneyworld and it has been AMAZING. i knew i was excited to be able to do stuff like that again, but i didn't think it would feel SO great! i'm excited for you guys!


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