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 explain...today 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.
Weight: 17.4kg (38.3 lbs.)