Ashley Update 5/29

Ashley went in  this morning for another gamma globulin treatment. That's the four hour IV. Afterward she and Robin spoke with the doctor who has been very impressed with Ashley's reaction to the treatments and said she is much doing much better than he initially expected. She does not have to go in for another treatment for a month!

He has also given his okay for her to go on her mission trip to Italy at the end of June, but said he wants to see her right before she goes to check her one more time. That seems fair, and we'd want him to do that. So, needless to say, Ashley is very excited about this trip!

He has also said she can start exercising, which she is ready to do. 

As always, thank you for your continued thoughts and prayers for Ash!

News....

As of today Ashley is officially in summer. She finished making up all the tests she missed. We appreciate all the teachers and the school for working with her to get things wrapped up. It's so important when something like this happens, something major that you're not expecting, that the school can readjust some of the work and schedules. Ashley's not one to not do things, she just needed some help in coordinating a new schedule to get them done. Thanks, DLCS!

Here's to a great holiday weekend for you and your family. Be safe and enjoy it!

Ashley Update 5/19

Sunday night Ashley took her first shot of methotrexate; she gave it to herself in the stomach. She'll take one shot each week. The "shot process" went well, although by yesterday she was a bit tired from it. Today she is sleeping in and I am sure is enjoying not having to be at school.

This past weekend, was graduation at Lipscomb. A lot of Ashley's friends are now off to new adventures. Robin and I attended a few of the graduation parties, and Ashley went to even more. What a big weekend for them and their families. We wish all of them the best of luck as they head to college!

Just news...

Yesterday was Ashley's last day of school. As she said today, I am officially a senior! Wow, it is just so hard to believe she'll be in her senior year. As everyone says, time does fly...and it has. All the senior parents say the last high school year is busy and goes by even faster. I guess we better rest up during the summer!

Well, I did something this morning I have never done before in my life. I ran a 5k race (3.2 miles) benefitting St. Jude's. I have always wanted to run a marathon, but I'm not sure I'll ever be capable of doing that....maybe a half-marathon one day. Anyway, the 5k was a start to something I guess. I didn't really train for it and jogged/walked it. My time was 38:06. I was less worried about the time, and just wanted to say I did it. The winning time was 15:59. That's about a 5-minute mile! 

Jo Dee Messina is the spokesperson for the race and is giving a concert tonight. She also ran the race. After I crossed the finish line, I looked over and she had come in right behind me. If I had slowed down a bit we could have chatted to the finish line!  Well, by that point in the race I'm not sure I could have talked too much!

Ashley Update 5/16

We continue to get great news on Ashley! Yesterday, she and Robin went for her weekly IV treatment. Given her great response to the medicine, Dr. Graham is stopping the IVs (we're at about one month instead of the planned three) and will continue her on oral prednisone. Up to now, she had been taking orally 60mg of prednisone daily (along with the weekly IV), but starting today she will decrease by 10mg every ten days and then will remain at 10mg for two years. As her dosage of prednisone decreases she will lose some of what little puffiness she has gained and her skin will start to clear up. 

In addition to the prednisone, she will begin giving herself a weekly shot of methotrexate. Fortunately, it is a low enough dose to not cause her hair to fall out or other side effects.

Ash also asked when she could start working out and the doctor said he will allow her to walk about 15 minutes a day.

The jury is still out on whether she will be able to make her planned mission trip to Italy at the end of June. She is looking so forward to the trip. Dr. Graham said he still wants to follow the swine flu before he gives her a final answer. We told him we will go with his recommendation, so we'll see.

It's amazing how everyone still mentions that they have Ashley on their prayer lists and I know that the power of prayer and the healing power of God will totally cure Ashley. Thank you so much for always asking about her. We really appreciate knowing that everyone still thinks of her.

Ashley Update 5/12

We got some more great news yesterday....Ashley's blood test from last Thursday showed a CPK level of 41! The report shows anything “outside” the normal level in red. Back on April 16th there was a lot of red all over the report. Now there are only about five things showing red, and most of them are very close to the acceptable levels. 

So we're excited about her great progress and thank God he is healing her so quickly. She goes back for another treatment on Friday, at which time we also have another meeting with the doctor.

She's feeling pretty good, but is also feeling the pressure of her last week of school and trying to catch up and make up all the homework and tests she's missed.  

Oh, and where would we be without Robin! While sitting in the waiting room she noticed a poster explaining that you can create an online account to review test results. Needless to say we can now view Ashley's test results online. Like Robin said, it pays to read the posters on the walls while you're waiting. God gave Ashley the best mom!

 
  

Ashley Update 5/7

Ashley went for another treatment this morning and everything went fine. They drew blood for another CPK test, too. While hooked up she studied for a calculus test. Afterwards she and Robin went by Baja Burrito and Ash made it back to school in time to eat her lunch with her friends. 

Tomorrow is their Junior Class Picnic, so she has no school. Tonight she is spending the night with friends. 

Thanks for the continued emails, cards and prayers. Things are getting much better around the Siptak household.

Oh, and we have kept Ashley supplied with hand sanitizer!

Tuesday 5/5

We continue to get cards and emails from family and friends as word spreads about Ash. Her grandparents have been diligent about letting everyone know, and telling everyone to put Ashley on prayer lists. It's amazing how word and prayers can spread. It would be interesting to see a flow chart of all the people linked together by one simple request. Thank you so much for continuing to think of and pray for her.

She is feeling much better. She said she's feeling better than she has in months. I guess Robin and I just didn't know how bad she must have really felt. We are just so thankful we found out. I can't imagine where she would be now and how she would feel if we were still trying to diagnose this.

The doctors and staff at Vanderbilt Children's have been great. We can truly appreciate what they are doing for Ashley and so many other children from around the country who come here for treatment. 

Sunday 5/3

It's almost like we're getting back to normal. Friday Ashley spent the night with friends and then did a few things with them on Saturday. I think they even did some extra credit Spanish project. She felt great! Saturday night she told us she felt really good. I think the medication...and the prayers...are working! It was nice to see her feeling good enough to be out of the house.

Friday afternoon, our vet Dr. Katie and her assistant, Melody, came to our house to put Katie to sleep. They were so nice about the whole process and didn't rush us through it at all. It was a hard thing to do, but now she is no longer in pain. We buried her in the backyard....in the rain. She didn't like rain because she usually knew that meant thunder and lightning...which scared her. We always knew with a bolt of thunder she'd be in our lap. 

Of course, Robin and I then spent Saturday looking for her. We'd glance at the places where she'd usually be and then realize she wasn't. Today after church I caught myself almost calling for her when I walked in the back door, which I always did. 

Saturday, our neighbors, Donnie and Lynn, brought us flowers from their yard and a sympathy card and told us they were sorry to hear about Katie. Our living room is now filled with the smell of wisteria, pionese and iris. That was so nice of them!

I will miss that silly dog.

More News 5/1

Dr. Graham called this afternoon and Ashley's blood test from this morning showed that her CPK level was down to 124. That's great news! There is no level too low, so we're all excited!

He said she is moving along just like he had hoped. He has not released her to do any exercising or anything yet, but will continue to monitor her and see how she does.

Ashley Update 5/1

We met with Dr. Graham this morning before Ashley's IV treatment. Things are looking good. The last blood test showed her CPK level at around 440, and he expects that from today's blood test it will be normal. We hope so!

The swelling in her legs and arms has really gone down, and she feels better. She's getting back to her normal self...her friends (and Robin and I) have really noticed. She's smiling much more, laughing and enjoying not being on the couch in pain all the time.

She will go back one day each week for the next two weeks (for IV),  then we'll meet with Dr. Graham again.

When Dr. Graham asked Ash if she was worried about anything or had any questions she mentioned the swine flu, which seems to be on everyone's mind. Dr. Graham did not diminish its seriousness, but said to not overreact to what the media is saying. With the steroid treatment she is on, she is actually more immune to something like the swine flu, than she would be off the medication. So that's good news!

Because of her good progress, he had planned to put her on a lighter steroid, metholtrexate, (which has less noticeable side effects than prednisone, although side effects of its own), but said he wanted to wait and see what happens with the swine flu here in Middle Tennessee. He'd rather keep her on the same medications and keep her immunity strong. If the swine flu doesn't really develop here and it kind of dies out, he will switch her over to metholtrexate.

On a sad note, this afternoon we will put Katie (our miniature Maltese) to sleep. Several months ago she developed an inoperable tumor on her neck. It continued to grow and over the past few weeks it has become more difficult for her to breath, swallow and eat. We delayed doing anything before now since we were more focused on finding out what was wrong with Ashley. But now it's time and the vet will come to our house mid-afternoon. Katie just turned 8 years old.

Thanks for your continued prayers.