Author Topic: The TFS Thread (Read 3872 times)

kimnat · « **Topic Start:** November 05, 2006, 02:56:12 PM »

hey guys! I got a msg from Colton asking about the little guy (thanks for thinking about him!!) and I realized I haven't updated y'all for a while.

Andrew is doing ok. His scans, after two cycles of chemo, look great and classify officially as a Rapid Early Responder. So, we only have 2 more cycles to go. That's the wonderful good news!

Not so good news. He got sick this week and spiked a 103.4 fever on Thurs. So instead of starting chemo yesterday, as was planned, we are waiting for his white blood counts to come up. They're creeping! Hopefully, they'll be up enough overnight taht he can start tomorrow. We're so tired of being in the hosp., so please pray especially hard tonight for a significant increase in his blood counts. The other requirement, fever free for 24 hrs, was reached last night. That and the positive scan results are huge answers to prayer!

On the fun side, he has received some special attention from Nick Johnson and Jay Bergmann! He was absolutely thrilled. No, it wasn't a personal visit, but mail and gifts aren't too bad! :wink:

Well, I need to run. I'm home to shower and regroup before I go back for Night 4 of Hotel Fairfax Hospital. Hopefully only 2 more nights after this!

Thanks, Colton and all of you!!

ColtonWillems · « **Reply #1:** November 05, 2006, 03:59:38 PM »

That's great to hear. I'm so happy that he's doing better

Hopefully you'll be out of the Hospital soon and back to posting regularly on the board.

Thanks for the update, my thoughts and prayers as always are with your son and your family.

Take care now!

2k6nats · « **Reply #2:** November 05, 2006, 05:55:06 PM »

Quote from: "ColtonWillems"

That's great to hear. I'm so happy that he's doing better

Hopefully you'll be out of the Hospital soon and back to posting regularly on the board.

Thanks for the update, my thoughts and prayers as always are with your son and your family.

Take care now!

My thoughts exactly. Hope all is well with the little guy.

nospinzone1 · « **Reply #3:** November 05, 2006, 08:05:32 PM »

Quote from: "2k6nats"

Quote from: "ColtonWillems"
That's great to hear. I'm so happy that he's doing better

Hopefully you'll be out of the Hospital soon and back to posting regularly on the board.

Thanks for the update, my thoughts and prayers as always are with your son and your family.

Take care now!

My thoughts exactly. Hope all is well with the little guy.

ME2...THE BEST TO YA'LL

kimnat · « **Reply #4:** November 06, 2006, 08:36:22 AM »

Thanks guys!! Andrew's counts nearly doubled last night. We're starting chemo this morning! Thanks for your prayers. I told the doc he would be fine to start chemo today as I have at least 100 people praying for him. God has been faithful and gracious again! Have a great day. I now need to get back to his room. I'm in the hospital library right now.

ColtonWillems · « **Reply #5:** November 07, 2006, 06:03:32 PM »

Quote from: "kimnat"

Thanks guys!! Andrew's counts nearly doubled last night. We're starting chemo this morning! Thanks for your prayers. I told the doc he would be fine to start chemo today as I have at least 100 people praying for him. God has been faithful and gracious again! Have a great day. I now need to get back to his room. I'm in the hospital library right now.

That's great news, I am so happy for you and yours. Stay with TFS, no need to post at a time like this.

Take Care.

kimnat · « **Reply #6:** November 08, 2006, 04:10:02 PM »

Thanks Colton. We're back home this afternoon.

When I jump down to the library and post, I'm checking my aol email and sending updates from there, too. It's my lifeline. People know exactly how to pray and we see mighty things happen. There's definitely a direct link between those messages and what happens w/ TFS.

We go back to the doctor's office on monday a.m. for another dose of chemo and for count checks. Also have to keep a close eye on him this weekend. If he gets super tired and lethargic, we have to call in as he could be anemic and in need of a transfusion. Hope it doesn't happen.

Anyway, thanks for your prayers and thoughts!

Ali the Baseball Cat · « **Reply #7:** November 08, 2006, 11:00:50 PM »

We're sending some extra-special powerful goodness - this stuff never fails! Chin up, and keep us posted!!

ColtonWillems · « **Reply #8:** November 09, 2006, 07:15:27 PM »

Quote from: "kimnat"

Thanks Colton. We're back home this afternoon. When I jump down to the library and post, I'm checking my aol email and sending updates from there, too. It's my lifeline. People know exactly how to pray and we see mighty things happen. There's definitely a direct link between those messages and what happens w/ TFS.

We go back to the doctor's office on monday a.m. for another dose of chemo and for count checks. Also have to keep a close eye on him this weekend. If he gets super tired and lethargic, we have to call in as he could be anemic and in need of a transfusion. Hope it doesn't happen.

Anyway, thanks for your prayers and thoughts!

That is wonderful news. Somebody up there is on your side

I will continue to pray until it is not needed, and then some. Your son seems like a great kid, and I'm glad to hear he is doing better. This weekend will tell all of us alot, and hopefully it is great news. I am looking forward to an update after this weekend.

Take Care

kimnat · « **Reply #9:** November 17, 2006, 08:48:01 PM »

Just another FYI - We're half way done w/ the 3rd cycle. He's done w/ chemo for this time around though. But Andrew has a cough that won't go away. I think it's from his croup virus. Croup acts like a cold and lingers for 3 weeks. If that's the case, he has one more week to go. But our big concern is it turning into pneumonia. So, please pray that his counts go up (starting the Nupogen again) and that he doesn't get pneumonia. If he stays healthy and counts go up, we begin his 4th and likely final cycle. Will probably do scans around the 12th of December. Would have been my mom's 60th b-day. Lost her in April 2002 to melanoma.

Glad Andrew's outcome is so phenomenal!

We had to start him on an anti-depressant last week, as a result of the prednisone. He went after our middle child, 5 yo Elisa, and wanted to kill her (literally) for no apparent reason. I had to protect her and pin him down for 45 minutes!! Thank God for cordless phones! I called the oncologist while trying to restrain his 73 lb., 4'4.5" frame and the doc immediately agreed that he needed to be medicated. Ahhhh! Zoloft is a wonderful thing!

Then after talking to the psych today, he told me that even w/o cancer, the kid has depression. Poor thing. And I've thought that for 3 full years and couldn't get a medical professional to agree w/ me. Every one kept trying to say ADHD. Only problem is that if you give a kid a ritalin like drug when they're depressed, not ADHD, then you make the depression worse - sometimes REALLY worse. So, I'm glad I held out and found the right doc! We'll probably have to keep him on the meds for a long time to come, altering it along the way. But the real Andrew, when not flipping out violently because of chemical imbalances, is the wonderful kid I always knew existed! It's so nice to finally see it and be able to say it!

Senators2005 · « **Reply #10:** November 17, 2006, 10:12:29 PM »

The cancer and the depression more than likely go hand in hand and are contributing to one another. With all that he's going through - there's no wonder he's having emotional issues. Be careful with the anti-depressants though - in a small fraction of young people they have been shown to contribute to suicide. So monitor his behavior and mood swings...if he acts unusual in any way, gets real quiet and/or doesn't seem to be himself: Don't hesitate to call your doctor and let him know.

I continue to pray for TFS...you & your family. Hope things continue to get better.

kimnat · « **Reply #11:** November 17, 2006, 11:32:49 PM »

Yeah, I read up on the drug before we got it and the doctors warned us, too. But he's been dealing w/ depression symptoms since he was 4. We were working w/ the psych to get a firm diagnosis when the cancer thing blew up. But, thanks for the reminder. I am keeping my eye on him. But I'm currently just seeing normal interaction and no introverted behavior, and he is by nature a true extrovert (like his mommy). Thanks again for your prayers. I hope y'all know how vitally important and helpful they are.

CALSGR8 · « **Reply #12:** November 18, 2006, 08:03:00 PM »

THANKS for the update. I was just going to reply to this post to ask about TFS! Poor kid. Poor YOU! I used to work with severely handicapped kids and had to on more than one occasion restrain a 7 year old who wants nothing more than to harm himself and anyone who gets in his way! I'm DEFINETELY NOT SAYING TFS is THAT HANDICAPPED! I just can relate to holding down a 7 year old.

I'm glad the medication is working. If you have confidence in this doctor, I'm sure he will monitor his meds carefully.

You and your family are always in my thoughts and prayers! Take care of yourself.

ColtonWillems · « **Reply #13:** November 19, 2006, 12:10:17 AM »

Medication has come a long way, thank god for Zoloft indeed. You and your family must be very strong, and have very close ties with one another, that is special. I'm sure TFS takes after you in will, and he will surely be fine. Thank you for the update, because I was about to send you another PM on his status because I was becomming worried

At work today (I work cashier at a local drugstore [I'm 16]) We had glow in the dark bracelets for a dollar each as a donation to a childrens hospital. I thought of you and your son, and pleaded with every customer to donate (My boss only let me buy one :cry: ) I got many donations if it means anything.

As always my thoughts and prayers are with you, TFS and the rest of your family.

bob2274 · « **Reply #14:** November 19, 2006, 03:34:24 AM »

I've had to deal with depression in my family, and I couldn't imagine how much more difficult it makes things for you. I had read your messages in the past, but never responded. As I finally respond, I want you to know that we're there with you, and thinking of you every day.

kimnat · « **Reply #15:** November 19, 2006, 08:50:54 PM »

Thanks for all your well wishes and kind words, not to mention prayers! I'm not sure if Andrew is responding too strongly to the Zoloft or if something else is amiss, but he's been a BEAR again last night and all day today. Defiant barely scratches the surface. He goes to see the psych tomorrow night. Hopefully, we'll get some help. I tried to crush the med and mix it into another of his meds, instead of just water (still tastes awful either way). So, I don't know if that messed up the makeup of the drug or the amount of it he was getting or if he is having the adverse reaction Senators2005 spoke about. Either way, life isn't easy.

I tried to take time for myself today and go a really good local craft show. Got there at 2:30 thinking it closed at 5. Wrong! Ended at 3. I just turned around, came home, threw my own hissy fit out of my own depression and slept for 2 hours!

So when y'all pray for us next, please add in some strength, wisdom and discernment on how to best manage this whole ordeal. Pray also for peace for Andrew. I can't imagine how he feels, esp. w/ us yelling at him when he horribly refuses to cooperate. We hate doing it, but he just won't respond correctly. Hope the psych has some advice tomorrow!!!

Talk to y'all later. And thanks again, so much for caring.

2k6nats · « **Reply #16:** November 19, 2006, 10:19:41 PM »

Sounds tough. We're all pulling for you. My thoughts are with you and Andrew, good luck.

Ali the Baseball Cat · « **Reply #17:** November 20, 2006, 11:01:39 PM »

Zoloft and most other anti-D's including Effexor & Prozac are coming with a pretty stern set of warnings on the FDA-required labelling these days...these drugs have all been tested and found to be "safe & effective" in a zillion clinical trials in adults, but not really in kids. Seems indicating an approved drug for pediatric use isn't always a good idea. This is all public record - if you don't like what the doc tells you, try searching FDA.gov with keywords of "pediatric" or "adolescent" and "[insert drug name here]" - the agency is all over this issue right now, and they are really making an effort to get info to the public as quickly as possible.

kimnat · « **Reply #18:** November 21, 2006, 09:16:40 AM »

Funny part is Dan works for the FDA. He's not crazy about Andrew being on this stuff. But we're kinda at the end of our rope w/ him behavorially speaking. And yes, I understand the warnings, but the behavior needs some serious modification.

CALSGR8 · « **Reply #19:** November 27, 2006, 06:18:23 AM »

I'm told that sometimes it takes a while to find the precisely right drug. So Patience is in order. I know its difficult. I've had the opposite problem. My Mom has been sick and is super sensitive to medications. She's been trying to find a good medicine to get rid of some infection. Not to mention that it sometimes doesn't go with other meds she's on. So I've been going through trial and error with her too.

You're doing all the right things, in finding him help. Maybe the psych will help you set up a system of consequences (star chart, contracts, time-out etc) to help with the behavior.

Good luck and Best Wishes to your family.

CALSGR8 · « **Reply #20:** November 29, 2006, 04:09:29 AM »

I found this comic in today's post. Thought of Andrew when I saw it!

http:// http://www.uclick.com/client/wpc/fb/

CALSGR8 · « **Reply #21:** January 03, 2007, 08:20:32 PM »

HEY KIMNAT!

What's the update? Was Santa good to you and yours? Hope you had a good holiday!

Let us know.

tomterp · « **Reply #22:** January 03, 2007, 09:12:07 PM »

Quote from: "CALSGR8"

HEY KIMNAT!

What's the update? Was Santa good to you and yours? Hope you had a good holiday!

Let us know.

Visit the picture thread for Kimnat's most recent update.

Senators2005 · « **Reply #23:** January 03, 2007, 10:51:15 PM »

SO HAPPY to hear he's cancer free! Thank God and he looks so happy in the picture!

This news made my day...

kimnat · « **Reply #24:** January 04, 2007, 09:26:50 AM »

Quote from: "CALSGR8"

HEY KIMNAT!

What's the update? Was Santa good to you and yours? Hope you had a good holiday!

Let us know.

The week before Christmas, the oncologist called and told us that Andrew is done w/ all treatment and is cancer-FREE. We were thrilled, still are! He's doing great, getting more fuzzies on his head now and is such a sweet kid!

Author Topic: The TFS Thread (Read 3872 times)

nospinzone1