Friday, September 19, 2008

Increasing chemotherapy

Back in early July, when Steve's immunity system crashed, he took a break from his chemotherapy regimen. When he started again, it was at a lower dose -- 200 mg, down from 300 mg. The risk of staying at the high dose was too great.

Today Dr. M decided to start the next cycle of chemo, which begins Monday, at 240 mg. Steve's labs have been consistently in range or close enough; no levels have been at an alert status. Dr. M thinks his body should be able to handle the increased dose. We pray she's right. We want to hit the tumor with as much poison as possible without compromising his daily health.

We also learned:
  • At least one doctor thinks Steve's double vision could go away. A neurology resident examined Steve before Dr. M and thinks the affected cranial nerve may take care of itself when the tumor moves out of the way. This is the only doctor who has even suggested his vision could come back -- we hope the minority rules!
  • The whole family needs flu shots. If any readers know a good way to make shots easier for 3- and 7-year-olds, please let us know.
  • Dr. M encourages Steve to increase his steroid dose if he starts feeling especially rundown or weak. He's been at 2 mg for weeks and has some stability issues that are magnified when he's tired.
  • His mouth and throat are free of thrush!
  • The next MRI is Oct. 22.

Visiting Dr. M always lifts our spirits. She showers Steve with praise, telling him what a great patient he is, how thrilled she is that he's working and not just sitting around the house, how she loves our optimism.

In the past few months we've realized how small and connected our world is. Today we received yet another reminder.

Dr. M's new medical assistant and I were chatting while Steve was in the lab. I learned that she was the medical assistant for Cooper's first pediatrician, Dr. P, while we were patients there. While the nurse worked for Dr. P, one of their 3-year-old patients was diagnosed with a glioblastoma (the same kind of tumor Steve has).

The nurse kept in touch with the parents. During one of their phone calls, she learned that they were desperately looking for a qualified nanny to help care for their sick daughter. The nurse talked it over with Dr. P, who agreed to let her quit that day. She started working for the family and took care of the little girl until she died later that year.

Some may think of the nurse's presence in Steve's life as a coincidence, but I take it as a small sign that he's being taken care of in a very special way.

7 comments:

Anonymous said...

FLU "shot" - my 4 year old just got her flu stuff.. it was a nasal spray kind of thing - NO SHOT.. ask for this - she handled it beautifully!
the rest... we're still praying.. especially that "the minority wins"!
God bless you guys!

Sweetest Whimsy said...

Ditto on the spray shot! My kids got their shots yesterday. Sadly, Thalia is not eligible for the flu mist because of her asthma, but I'm hoping your kids are!

Praying for Steve on the higher dose of chemo.

Awifeandmom said...

When I worked at Children's the consensus on the spray was that it was not as effective as getting the actual shot. There are also certain groups of kids that aren't eligible for the spray. As another poster said, if your kids have asthma problems or any breathing problems, the spray is a big no-no.

There's a hug technique the nurses would use at the hospital that seemed to work well with the kids. If your child is a kicker, screamer, biter, or hitter, this can be a lifesaver. When it's time for your child to get their shot, find out from your nurse if they'll be giving the shot in the child's arm or leg. When you've decided on an appropriate site, tell your little one to sit on your lap facing you. Have them wrap their little arms and legs around you and the both of you face the opposite direction of the needle. (They can't fear what they can't see. Well, they can still fear it, but not as much). When your nurse is ready, give your kiddo a big squeeze. Sure it may still hurt, but it won't hurt as much when they have mommy there as the ultimate teddy bear. You'll also be protecting yourself and your nurse too from possible harm because your kiddo is less likely to fight if they're getting hugged rather than feeling restrained.

It worked very well with our oldest. She only cried for a few seconds then it was over. She even commented that it wasn't as big a deal as she thought.

Anonymous said...

Tyra - as someone who still uses Dr. P, I can tell you that I too think it is no small happenstance that the medical assistant is now a small part of your life. I know it is just one more sign that Steve is being cared for in a way too vast for us to understand. I hope to see you Sunday (or tomorrow night for Cabaret).

Laura said...

This is no miracle-worker, but somehow it convinced our ultra-sensitive son to take his shots without crying. We read "Curious George goes to the hospital" repeatedly around the time Brendan was about to get another round of immunizations. Just before going to the appointment, we talked about how brave Curious George was and how the shots didn't even hurt. Somehow, that convinced our son, who had screamed anytime a doctor examined even a finder, to take the shots without fussing!

Laura said...

(PS -- That should be "finger" not finder.)

Anonymous said...

Hi Tyra and Steve! I'm very glad that Steve's numbers are good and that he can start a more aggressive round of chemo to help get rid of the Damm spot!

We just got our flu shots last week. I know you guys are eating healthy, but McDonald's has really cool toys right now! That was a big motivator for Riley (age 5). Also, I got a flu shot too (he "let" me go first) and I think that helped. Riley's nurse told him to catch a bubble and blow it out when he felt the shot - simple breathing is an amazing thing!

You guys are in my thoughts. Take care! Meghan Franzke