Tuesday, May 17, 2011

Tuesday, May 17

Just a quick update. Collin had a clinic appointment yesterday to re-check his creatinine level. I found out this afternoon that it was back down, to .34. So this evening he can resume his maintenance chemo, and the Acyclovir.

This morning Collin put two words together. He said "bye bye Neya," instead of just "bye-bye." I think that is only the second two-word phrase I've heard him say, other than when he says "all done." I was excited to tell his Speech Therapist! He did well in Speech today; he blew ten bubbles in a row off the wand, which is not as easy as it sound with right side facial paralysis. He is also recognizing more of his word cards and needing fewer cues to say the words. He did well in Physical Therapy as well today. He enjoys practing going up and down the steps, and kicking a ball. His Physical Therapist joked that she may start a pool for people to guess when Collin will start walking on his own because he's so close, and give the proceeds to the Four Diamonds Fund! He manages to take about two to three little steps on his own before he falls. I figure once he gets the hang of it, there will be no slowing him down!

Friday, May 13, 2011

May 12, 2011

Collin has been getting a break from chemo this week since his creatinine level was found to be elevated Monday. He is also getting a break from his twice daily dose of Acyclovir, an antiviral drug being used to protect from chickenpox and shingles (which would be dangerous for him to contract) since the drug is also filtered through the kidneys. A normal creatinine level for someone Collin's age is .3 to .7; his level typically runs between .33 to .38. On Monday his level was .73, so even though it's not too far above the high end of normal, it's higher than usual for Collin. By giving his kidneys a break this week, his creatinine level is expected to be lower next Monday. Then his creatinine level may be checked more often the next time he receives Accutane.

The Accutane has also taken a toll on Collin's skin. As I mentioned during his first round of the drug, it can be very drying. I kept his skin and lips moisturized during his first round, and it didn't seem to affect him too much. During the second round though, it seemed to affect him more, and more quickly, than the first round. His cheeks, lips, arms, and legs are red and look sunburned, and are dry and flaky despite the moisturizer. Hopefully this will clear up soon!

I would like to ask for prayers for another little cancer warrior named Conner. He is a sweet five-year-old boy whose family learned today that his cancer has relapsed a second time. He is fighting hard, and at the same time is trying to heal from neurological toxicity caused by a chemo drug. The challenge ahead is to find a chemo drug that will be strong enough to fight his cancer without causing more neurological damage. Having been dealt some tough blows during Collin's journey, I can imagine the despair is parents might be feeling after today's news, and my heart is breaking for them. Please pray hard for healing for Conner, strength for his family, and wisdom and guidance for the doctors treating him.

Monday, May 9, 2011

May 9, 2011

I had a very nice Mother's Day yesterday, spent with family and friends. It was a joyful day, such a welcome change compared to Mother's Day last year, when I didn't even know if Collin was going to survive. It really is amazing to think about how far we've come in a year.

Today was another busy day, but it was a good day. Collin had speech and occupational therapy this morning. He worked hard in both therapy sessions, and I expected him to be asleep before we left the parking lot. But he stayed awake as we drove over to the other end of the hospital campus. We had lunch, ran into Caiden and his family (he's doing well, he looks great, and his hair is starting to grow back), visited our nurses on 7W and met another friend (a wonderful mom of another tough fighter), and then headed back down to the clinic for Collin's next appointment. Collin's weight was 14k (30.8lbs) which is the highest it's ever been. He's definitely been eating well! Today's visit was just to check his bloodwork, so once the nurse drew blood, we were able to leave. It wasn't until the ride home the Collin finally conked out and napped for about an hour.

Later this afternoon, a nurse from the clinic called me with the CBC part of Collin's lab results. His white blood cell count was a little lower than it's been recently, as was his ANC. His ANC was still above 1000 though, so he still has a bit of an immune system. Then early this evening, his oncologist called to say that his kidney functions had come back, and his creatinine was high. This indicates his kidneys are not filtering his blood the way they should be. Collin just finished his second round of Accutane this morning, and his oncologist said she has seen Accutane affect renal function. So, she is having me hold the chemo drug Etoposide for this week to give his kidneys a break, and will have his bloodwork re-tested in one week, instead of the usual two weeks.

Thursday, May 5, 2011

May 5, 2011

In my last blog post, I mentioned that Collin had his six-week post-op visit with the ophthalmologist who did his eye surgery in March. It was a frustrating visit; to make a long story short, there was a lot (ie. too much!) of waiting, and in the end we only saw the ophthalmologist for about three minutes, and I never got to finish talking to him. He emailed us a copy of his visit summary & recommendations. Collin's eyes did not respond to the surgery as well as the ophthalmologist originally expected, (and I actually think the right eye has turned back in a little bit since the surgery), and he is recommending two more surgeries. I'm not sure what his timeline is for the second surgery, but the third surgery would have to be at least six months after the second surgery. When I discussed his recommendations with Collin's oncologist, she recommends waiting until Collin is finished with his maintenance chemo, which I believe will be sometime in July. So as things stand now, nothing further will be happening with Collin's eyes in the near future, other than possibly seeking a second opinion. So, I continue to patch his left eye for two to three hours a day. I recently decided to start patching him during his therapy appointments so he is kept more occupied and distracted while the eye patch is on. Originally I was purposely not patching him during his therapies because I was afraid the eye patch may hinder his therapy, but interestingly enough, it hasn't gotten in his way at all. There are actually times when he seems to do better with the patch, so his therapists and I have speculated that the patch probably takes away the double vision we assume he has, and allows him to see things easier. Oh how I wish Collin could tell us!

Collin has been doing so well in his therapies. In speech therapy, he continues to learn new words, and his ability to blow a bubble on a wand or to blow a plastic horn hard enough to make it whistle is progressing. Yesterday in occupational therapy, he used his hands (with some assistance of course) to make a Mother's Day gift for me; he decorated a styrofoam cup with crayons and stickers, scooped soil into the cup, put marigold seeds into the soil, and poured water into the cup. Today in physical therapy he worked on balance and walking, and even though his legs were getting so tired they were shaking and we kept encouraging him to take a break, he wanted to keep going. He usually works so hard in his therapies that he is asleep before we leave the parking lot!

Today I took Collin shopping for new sneakers, and then decided to take him to the barber to get his hair trimmed. It was his first real haircut by a barber. I wasn't sure how he would handle it, but he sat in the chair and was a perfect angel the whole time! I guess after everything he's been through, a little haircut isn't scary at all! It was a beautiful and fun day, and it was nice to take Collin out to do some "normal" things.

I don't want to forget to mention that May is Brain Cancer Awareness month-spread the word!