Sunday, August 1, 2010


We are still recovering from Clinic this week. It was a rough one on all of us! It was supposed to be the "easy" week. Just Chemo and a check-up from the Doc's (no bone marrow aspiration or spinal tap), but we ended up staying all day. Cami's red blood count was low, so we had to stay and do a blood transfusion. It takes them 2 hours just to order the blood and get it ready, then once it came she had to get benidryl and tylenol because she had an allergic reaction the first time. Before they even started the transfusion she had a temperature so they were worried about infection and debated doing a antibiotic drip or possibly keeping us over night. They started her drip slow because of her previous reaction, we waited about an hour and when she showed no signs of a reaction they turned up the drip. About 10 minutes later Cam broke out in hives and got really uncomfortable. They had to give her hydroxycodone and turn the drip back down. All in all it made for a nine hour day at the hospital and a VERY grumpy, exhausted Cami.

Getting her Vincristine (Chemo). I have a love/hate relationship with chemo. When Cam gets it, the RN comes all dressed in "protective" gear and every inch of skin is covered. They are very careful with this highly poisonous stuff and we even have to be careful with Cam's sweat and bodily fluids for 48 hours after treatment as it can contain chemo. It is crazy that it can be so dangerous, yet we have to put it directly into our daughters blood.
I love that its killing her Cancer, but I hate what its doing to her.
see?... love/hate.

Killing time while we wait for her blood.

My Grandpa was over at the U, so we walked over to visit him.
Cami is so sweet and has great compassion for him right now. All she wants to do at home is color pictures for "Ba-Ba". She knows what its like to be stuck in a hospital bed. She knows it can be scary. She is learning compassion and I know she really feels his pain.
She told Grandpa she knew he'd be brave when they took his "pokes" out!

Back to the clinic for some crafting and more waiting for that darn blood.

She got to order whatever she wanted for lunch. Of course she loved that!

She was not happy near the end. Who would be after 9 hours?

I have to say I have never appreciated those who give blood enough, but it is worth more than gold to us parents when we see those low numbers on her chart.
She finally has some energy and color in her face, thanks to the transfusion!

The Dexamethasone (or steroids) are REALLY changing our little Cam. Its really quite a serious little drug.
Some of the side affects are...

Difficulty sleeping; feeling of a whirling motion; increased appetite; increased sweating; indigestion; mood changes; nervousness; depression; dizziness; exaggerated sense of well-being; fever; general body discomfort; headache; increased pressure in the eye; joint or muscle pain; mood swings; muscle weakness; personality changes; prolonged sore throat, cold, or fever; puffing of the face; severe nausea or vomiting; swelling of feet or legs; unusual weight gain; weakness.

She has gained 9 pounds in 2 weeks. It is pretty crazy to see such a drastic change in this little girl. She wants to eat all the time, its the only thing that makes her happy. Its all she can think about. The Doctors tell us this will almost reverse once she goes off the steroids, the chemo makes her not want to eat and she'll be nauseous. They expect her to lose all she has gained and more, so its almost good that she is getting a head start. We think she looks so cute with the extra padding :)

Clinic stats this week 7/29:
Weight: 19.7 kg. (43 lbs)
Height: 106.5

Clinic stats on our first clinic visit 7/16:
Weight: 15.5 kg. (34 lbs)
Height: 106
*(at this point she had already been on the steroids for a week.
Im not sure what she weighed before we started.)


  1. I'm so sorry you had a terrible horrible no good very bad day! You are all fighters. I wish I could take this from you and carry your burdens so you could at least have a break, but knowing you chel,you wouldn't be able to be away from your little cami. Counting down tilthe end of steroids!
    Ps we have the same shirt! Butit looks way cuter on you...

  2. Was that before we saw you on Saturday? Millie never had a reaction to the transfusions (knock on wood), I can only imagine how scary that much have been for all of you. Brady and I just donated at our ward blood drive. I know what you mean about being grateful to all of the donors out there! The save lives!
    Millie loved Cami and can't wait to see her again. I hope you are all hanging in there.
    I have decided to test Millie's counts before we go, here's to hoping she doesn't need a transfusion!

  3. Sorry to hear clinic was rough last week. Millie loves it up there, but when it takes too long, she begins to get pretty upset.

    On the bright side, it seems that Cami is much less cranky/angry/emotional than Millie was at the same point.

    We're pulling for you guys!!!

  4. sweet little girl.
    she's a trooper and an inspiration.
    I have a feeling many are going to be changed
    because of Cami. thanks for sharing her story!
    and yes, my neighbors son was on steriods for awhile and he lost the weight quick as it came on. no worries there. she is adorable!

  5. My heart aches for that little thing!! She is so brave and I'm sure she is wondering what in the world has happened to her world. You are so right, Chel, that she will always have extra compassion for those around her who are fighting their fight for health and life. She has great examples right at her elbow who show so much love and support for her during this ridiculously hard time. Hang in there!!! We love you so much and admire your determination and positive, can-do, attitude. You're the best. Love you, Grandma Lenna

  6. I admire your strength. I can not imagine being on the roller coaster ride that you are on, but you keep your head held high most of the time, and that is an amazing quality to have. You allow yourself to be sad, and I admire that too. You are a source of inspiration for so many...........and Cami of course. She is beautiful even shen she gives her "glares".

  7. Shucks! What a deal! You're all in our prayers every night. What amazingly difficult things this little girl and all of your have to endure in order to get better!


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