GOOD NEWS!

Last week Tyler spent Tuesday and Wednesday at Arnold Palmer getting an MIBG scan. Yesterday, Tiffany finally got the results. He is clear!! No sign of any more cancer cells! He is still having a bone marrow biopsy today because the want to make sure they covered all their bases, but Tiff said they are expecting that to come back clean too. His lymph nodes were also clear when they tested those. Looks like even though they found some cancer cells when they did the biopsy on the tumor they removed - they got it all then. Praise God! I was so giddy after she called I was ready to skip through the halls at work singing Hallelujah!

One of the best things though? Tiffany telling me how all this has strengthened her faith. I always try to be a "the glass is half full" kind of girl, but my cup is OVERFLOWING! I have been so blessed by all the people praying for them. There are people all over the world praying. One friend sent me a text message that really moved me, it said "Tyler's army will never give up - we have all the confidence of those who lowered the man thru the roof to be healed." Wow!

Tyler has healed up very good after his surgery. Tiff was going crazy trying to keep him from climbing all over everything :) That's a two year old for you. We went to the zoo last Friday and I got a great picture of him. I thought I'd share. Happy boy!

Not the news we were hoping for

I just talked with Tiffany (and then had to go run a meeting at work) and good news is they are coming home today. Tyler got his chest tube out today and seems to be in much better spirits today. Tiffany said she and Army got to hold him for the first time since the surgery and he was clinging to them. He's eating too. He didn't seem to interested in eating up till now. The bad news is they will have to be going back. We were hoping that they would say the biopsy of the tumor, which is a neuroblastoma, showed that there was nothing to be worried about, but there were mature and immature (the bad kind) cells. They will be going back to Arnold Palmer next week to get the MIBG scan to check for any more neuroblastoma and will have to come back after Christmas to get the bone marrow biopsy. The doctor also mentioned a monthly urine test.

Here are a couple of pictures from the hospital after the surgery. He was so good. He charmed the nurses within moments just with his beautiful blue eyes. The blue dog Tiffany's stepmom got him. Tiff saw it and loved it. I was glad Dee was able to get it for him.

I still feel so much peace from God and from the prayer that has blanketed Tyler since I first got the call from Tiffany and sent out a text message pretty early on a Saturday morning. I have the best friends ever. The hardest part for me is watching my "baby" hurting. As I'm sure we all know, giving it to God can bring a lot of peace, but we humans are notorious for grabbing it back. I tried to encourage Tiff to do that, but she is feeling so fragile right now. But I have to say, when I was her age I think I would have fallen all the way apart. It tears me up now to know how she's feeling. I love that she can tell me - but I want to FIX it and I can't. I have to hand it over to God too. So, I'm sitting her crying, but not for Tyler - he's in the hands of the ultimate physician and my God has a plan for him - and I know Tiffany is too - but it's hard!

Plus! My marriage, such as it is, is really struggling and I just started an online class (that I already had to beg to take at this later date because I got behind the first time) and I'm feeling a little overwhelmed. I just need to remember, God has a plan for me too.

Tyler's surgery went GREAT

We are at Arnold Palmer and Tyler is already out of surgery. The surgeon said it went great! There was no blood loss and the tumor wasn't attached to any thing so it was removed easily. We haven't gotten to see him yet, but Tiffany is very relieved. I hate to see "my" baby so upset.

It's really cold today. At noon the temp is still only 45 degrees. I think next year I'm moving to Florida! Oh yeah, I already live in Florida. What is up with this?!

A couple of pictures of the waiting game. Tiffany and Army (Tiff is sleeping) and my mom, Tiff's Dad, Troy and his wife Dee.

Get Service

Things are looking good

Tyler's bone scan showed NO findings. Woohoo! His surgery is on Tuesday to remove the tumor. I thought they were going to do the mIBG scan before the surgery, but they've decided to do it after. What I'm guessing that means is that they have that same peace I do and removing it will be the end of it because there are no more.

Some other things that are looking good is that it seems like my step-daughter Lyric is finally going to be in a school where she has a better chance of succeeding. She got suspended before Thanksgiving for 10 days and David found out this week that they weren't going to let her come back. I wanted her to be able to go to a school I found when we volunteered with my work to help build a playground. A quote in the article I found says "Diamond Community School, Inc. exists for the purpose of providing educational services for all children in grades K-12 with a specialized interest in children who are at risk for school failure due to learning disabilities, academic delays and social- economic challenges. The organization is a non-profit entity committed to providing an educational safety net for children to enable them to become productive, viable and self-sufficient contributors in society."  That's what I want for her. Unfortunately, her former school and David weren't able to have the paperwork in place to get her the scholarship she would need to attend that school starting in January. With David still out of work since Sept 2008 and still living at his mother's, he can't pay the tuition and I can't either. An alternative is the Horace Mann Academy, and she starts there on Monday.

Do I think this is the right place for her? Maybe. David took me with him for the tour and it's definitely not as inviting as Diamond, but I like the way they feel about their kids. The goal is to give them the skills to transition back to regular day school. They also don't believe in BAD kids and Lyric is not a bad kid, so that will be a nice change for her to have someone be able to see past the labels others have tried to put on her. We'll see what happens. One big possible wrench in the works is that Lyric's mom for some reason has decided that Lyric needs to be back with her.

One of the many, many problems with her going back with her mom is that she does not make sure that Lyric gets her meds. Lyric is not responsible enough to make sure she gets them herself and that makes for days and days of getting regulated again after messing with her brain chemistry like that. Plus, there are what I dare say after all I've learned on all the wonderful blogs I read about attachment, some attachment issues with her mom. Even though her mom has been, in my opinion, vile to her, I had a text message that Lyric forwarded to me (out of many) that says, "Why can't you be a mother to me? You're supposed to love me even when I do bad." I don't know if her mom saw it (she was threatening to block Lyric from her phone), but she never responded to it. It breaks my heart for her. On top of Lyric's bipolar disorder with ADHD  and ODD, she has a real anger issue, which brings us back to why she isn't allowed back in her school. It's a vicious cycle. I don't get to have any say and feel constantly frustrated by not being able to influence decisions very much. David has spent years in years dealing with things the same way and expecting different results. Isn't that considered the definition of insanity? Ugh!

Anyway, this is long enough now. Issues with David can wait for another post.

Have a BLESSED day!

When it rains it pours

So, I've decided that the devil was pretty ticked about that God given peace I've had about all this stuff with Tyler so he tried to shove another wrench in the works yesterday. I was heading to the Christian bookstore and while waiting for a parking space on my left a woman backed into me on the right. A stick in the devil's eye - she had just left the bookstore and while we were talking I found out she is also a Christian and she's going to be praying for Tyler too. God is in CONTROL. All. The. Time!

Tyler is having a bone scan today (pretty soon actually). Please pray there is no findings. It was supposed to start at 7 am, at least the prep part, but Daddy thought that since his boy was going to be having a hard day he deserved to have milk with breakfast. Turns out that was a no-no and they've had to wait until now - 6 hours later. Poor baby. My parents were able to take Tiffany & Tyler over there so she has that support.

I just talked to her. They had to give Tyler a catheter and she had to hold him down. That was really hard for her. In this case, I know how she feels. When she was 2 years old I left her with my first husband while I ran to the store. She decided, for the first time, that day that she was going to run her own bath. Turns out the thermostat was broken on the hot water heater so the temperature wasn't regulated and she burned her foot very badly. Luckily we lived right behind the hospital and got her there quickly, but she had to have hydrotherapy and I had to hold her down while they debrided her burn. I know how heart breaking it is to have to allow someone to terrify & hurt your child to help them. Sucks!

Here is a picture of Tyler on his way home from Arnold Palmer the day after they found the tumor. He doesn't look to unhappy, but I was making faces and saying booga-booga in my silliest voice.

Tyler update

David and I went to get them yesterday and our time management skills (lack of is more like it) got us on the road much later than I planned. Then I looked back in David's van and realized that we didn't have a carseat. David had misunderstood that he needed to pick it up from Ron (Kayla's dad). Luckily he was awesome enough to bring it to us.


A friend sent me this email this morning and I thought it would be good to type this once, so here's the scoop:

How is the baby today?  I haven’t talked to them today, but he was really happy to be home last night after David & I picked them up. He was done with being poked and prodded.

How is Tiff and Army holding up? Tiff is holding up much better than I would have expected. Army is being super supportive and they both feel very confident in the doctors and the plan of action so far. He’ll be having tests this week to make sure there is only the one and tentatively surgery will be next Tuesday.

How are you?  I have a lot of peace about Tyler. I was pretty upset that first day for “my” baby because I worry about her so much because her health hasn’t been that great. She’s down to about 87 lbs and feels all her stress in her tummy. But she is really doing good J

What can I do to help you through this? The only thing I know of right now is prayer. Pray that once they remove the tumor that we are DONE. That’s best case scenario and the drs made Tiff and Army feel like that will probably be what happens. They’ll do a biopsy on the tumor and during surgery they’ll do a bone marrow biopsy. Once they have the results of that they’ll know what further action, if any, needs to be taken. 

Additional details:  The doctor's initial assessment is that it is a neuroblastoma - excess nerves from his spine - and it's located behind a lung along his spine. He probably has had it since birth. He didn't start walking until later than most kids and he favors his right side. When Tiff and Army took Tyler for his 2 year old check up they ordered for him to have physical therapy. The doctors at Arnold Palmer said that this surgery will probably make all that go away.

This week he will travel back to AP to get a shot and then an mIBG scan (I think twice). The surgery will take 1 -1 1/2 hours from the back (which is good since he sleeps on his tummy).


That's all I have for now. Thank you for all the prayer. I think it gave Tiffany & Army a lot of comfort to feel like they were blanketed in it.