Just a Note....8/3

Today at noon Ashley goes in for another gamma globulin treatment at Vanderbilt. She has made it through all her camps and will spend this week at cheer practice. Her energy seems to go up and down. Some days she's going full blast and feeling fine, then other days you can tell she's just tired. I think the Italy mission trip, the trip to Texas and the two camps...all in a row...did tire her out some. But she did have fun!

School begins next week, so her senior year will begin! Robin has been diligent about working on Ashley's college information, getting things lined up, forms together, etc. It's hard to believe we are in her final high school year. Ashley has about five colleges on her short list, so we'll see, as the months progress, where she decides to go.

July 20....

Where have the weeks gone? Ashley has returned from Italy....she really enjoyed the trip, and especially liked her quick stop in London. She did fine on the trip and felt great. Tired, of course, once she got back to Nashville. The day after she returned, she and Robin flew to Texas to help celebrate Robin's parents' 50th wedding anniversary with a surprise party. This week Ashley is at church camp and next week it's cheer camp. The summer is definitely slipping by fast. I'll attach a few photos!

July 2....

Today is Ashley's 17th birthday. We spoke with her late yesterday afternoon, which with the time difference was a few minutes after midnight on her birthday. She seemed to be doing well and having fun. Robin had sent decorations with the other girls to decorate Ashley's room with. I think when we called, Ash had been "locked out of her room" for the decorating to take place!

She told us a bit about her free day, but it was hard to understand what they were able to do and see. I did get that they went to the beach, of which she commented "there were no waves."

News 6/29....

Ashley and the group made in to Paterno, Italy. They have had trouble finding a wireless signal, but some of the girls stopped to admire a shop for children's clothes and the shopkeeper invited them to use his computer. They have been handing out flyers for their programs and have some kids coming this afternoon at 5:00. They are helping them with their English by using the Book of Luke. They have said the church is filled with beautiful people who are happy for their visit.

We have corresponded with Ashley via Robin's Facebook and she is doing fine. Not a lot to report as of yet, but I will soon. Keep her and the group in your thoughts and prayers as they share their faith.

Also, if you have heard the news in Honduras yesterday...one of our church's mission groups has been there this week and they are scheduled to leave today. All power in the city had been shut off and the airport had been closed. They were kept in their hotel unable to leave or go anywhere. A church they worked with brought them dinner last night. Keep them in your prayers for a safe return.

News 6/26...

Well, a late night of packing and double checking the packing has resulted in one 16-year-old ready for Italy...we think! Her suitcase came in right under the 50 pound limit (by our bathroom scale) so we think she'll be good to go. She has to be at the airport at 1:30 this afternoon. She is flying American to Chicago, then British Airways to London, then on to Sicily. I don't know all the exact times of arrivals, etc.

Since her treatment on Tuesday she has had a terrible headache so we hope she gets better as her trip begins. Off in a few minutes to take her to the airport. Will post more later!

Back...

It' about 4:30 here and Ashley should be close to Chicago. From there she flies to London and then to Italy. I think she arrives in Italy tomorrow around 4:30 in the afternoon....so they'll be tired. We took some photos at the airport and I'll post one or two later. 

Her suitcase weighed 50 pounds right on the dot...weight limit is 50 pounds without an extra charge. Leave it to Ashley & Robin to get it right on the nose.

I think her headache was starting to ease up. From what Robin read online the headaches tend to last about 48 hours after a treatment. So Ashley should be fine by the time she gets there. 

In the car going to the airport Ashley had to listen to my "Don'ts"....don't follow anyone anywhere, don't ever leave the group, don't give out personal information, etc. Then Robin began the "Where is...." quiz. Where is your English pound money, where is your bag of electronic converters, etc. 

There are about 15 going and they were all excited. Keep them all in your prayers for safe travel and for their safety while they are there! This will be an incredible experience for Ashley as she shares her faith personally with other kids her age. 

Ashley Update 6/23...

Ashley went this morning for her monthly Gamma Globulin treatment. She was pretty tired and slept through most of it, as she and Robin spent yesterday (the entire day) touring the University of Vanderbilt campus. More on that in a minute. The treatment went well and they met with Dr. Graham afterwards. He said she is looking good, and her weight is where it should be. He wants to schedule three more GG treatments for Aug, Sept, Oct. He also wants to do a bone density test before she starts cheer...very smart! Guess  that's why he's the doctor. She will continue her 10mg does of prednisone and her weekly methotrexate shots. So, we're excited about her progress and that she is doing and feeling well.

Yesterday, Vanderbilt had one of their PreVU campus visit days for high school seniors and Ashley and Robin left the house at 7:15 am to hit the campus. They spent the day touring the campus (= lots of walking, thus two very tired family members), learning about the admissions process, etc. Ashley liked the college and we'll move forward to make it one she applies to. Anyone out there with some great Vandy connections?

Birthday Girl...

Now that she's been given the okay by her doctor to travel, it seems our daughter will have to spend her 17th birthday in Italy. Poor thing.

Robin thought she'd collect cards and notes from family and friends to wish her a happy birthday while she's there. We'll secretly send these with a friend on the trip to give her on July 2. 

So, if you'd like to send Ash a card or a note, just mail or email Robin something to put in the large envelope. Their packing space is limited, so we're only asking for single cards or letters. Robin is trying to get everything into one legal size envelope. Pass this along to anyone who knows Ashley and might want to do this. 

Email messages to Robin at:

robin@nrcnet.com

Or mail cards or notes to: 

Robin Siptak

National Resources Company

1880 Gen. George Patton Dr., Suite 107

Franklin, TN 37067

It would be great to have these by June 20th. She leaves June 26th!

Thanks!

Saying hello... 5/9

Where is this month going? It's flying by. 

Ashley is excited about her mission trip to Italy and it is just a few weeks away. She leaves toward the end of June.

She's been feeling well and seems to be set in her daily routine of meds. We won't meet with the doctor again until right before the Italy trip.

This past Friday night she helped backstage with the dance recital. She said it was a bit strange to be there but not be in the dances. I think she really enjoyed it, though. Then Saturday night, her friend Jennifer asked her to a concert. She had a busy weekend and didn't seem too tired. That's good!

This week, she teaching a class at our church's vacation bible school...I think it's like 4 and 5 year olds. She has 12 in her class. She enjoys it and likes being with the kids. I am sure they are full of energy!

Since Ash is moving along well with her meds, I won't post on here unless there's really health news to post. I don't want this blog to be a recap of her personal life and daily activities! And I'm sure she'd rather it not be either. 

Perhaps at some point later, when time permits, we'll add to the blog to become more of what the family is doing, instead of Ashley's updates.

You can always email us and say hello. Hope to talk with you soon.

Just news....

The weekend was great, nice and sunny. Ashley is feeling so much better and spent Sunday afternoon washing and cleaning her car. I think she just enjoyed getting outside. It's great seeing her more active and wanting to do things. 

Saturday she went to the Y to work out. She's excited about getting back into exercising.

This week the cheer squad is heading up a cheer camp at school for young girls (elementary age, I think). So, she was out the door early this morning.

We're working on getting her college applications ready for some of the early registration dates. She'll apply to several, but most likely she will need to stay in the area since her doctor is here. But who knows.

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.

Ashley Update 4/29

A quick update, not a lot of news..... Ashley's doing well, still tired. So far, she has made three days of school this week, which is good. As part of her three-month initial treatment she will get another round of the high dose steroids on Friday morning. Pray that these treatments will continue to heal her quickly.

Speaking of which, we are so amazed at the "prayer chain" that has been created for Ashley by our families and friends. We're covering the US with record speed, as well as England and New Zealand. Thanks!

Back in the swing...

Yesterday Ashley had her first full day at school in quite a few weeks. She did well, but was a little tired...more in the morning. By the afternoon she was doing a little better. After school she and Robin went to take Ashley's senior pictures. We thought that since we don't know what side effects taking the treatments might produce over the next few months, we'll just have some in our pocket. Robin said they had a great and fun time doing that. I can't wait to see them. It's hard to believe we're already planning for her senior year in high school! All our friends who've been through a senior year tell us to get ready...it's a whirlwind!

Last night Ash was doing some homework for Spanish, which involved watching a Spanish soap opera. Since Ash still isn't strong enough to write too well, Robin had to help write down what Ashley translated for the homework (I think that's what they were doing). I just popped in once, laughed and left. 

This morning she was pretty beat, but she trucked on out of the house backpack in tow. I know she is ready for summer! Although she won't be able to enjoy it maybe as much as she'd like.

Thanks to everyone for staying in touch by email, calls, cards or, to those under the age of 18, by text messaging her. 

Ashley Update 4/27

Wednesday of last week (4/22), Ashley began her meds. Three days of high dose steroids, about a two hour process per day along with a single dose of Gamma Globulin on Thursday, about a 6 hour process. During treatment she watched the typical daytime TV game shows, noting she was pretty good at “Family Feud,” but was awful at “The Price Is Right.” She will continue on high dose steroids for three months, then will continue with some form of treatment for a minimum of two years. She got through that well, started to feel a little better, although still tired. She is still very weak and cannot even twist open a bottle. This is hard to think about since she has always been a strong athletic person. She has just totally lost her muscle mass.

Friday afternoon did bring great news though. They tested her blood and she responded well to the IV treatment. Her CPK ( Creatine Phosphokinase) level had dropped from 2600 to 800; about 200 is normal. CPK is an enzyme found mainly in the heart, brain and skeletal muscle. A high CPK level indicates serious muscle injury. At that level she obviously had some!

On Saturday she began oral meds (10 pills per day), so the IVs are behind us for now. She is taking Prednisone; Ranitidine to keep her from getting sick and some Calcium supplements since she is not a milk drinker. She had a good weekend, still hurting a little but that is to be expected. She is now trying to catch up on the homework she has... at least as much as she can stand... her arms still hurt when she uses then.

She will go back to see the doctor on Friday and they’ll test her CPK level again. Hopefully we will see more improvement and she won’t be hurting at all. She went to school this morning and we’ll see how she feels by the end of the day. She has about two weeks left. We are lucky the school year is almost over. It would have been more difficult to have gone through this early in the year. Summer will be here soon and homework will be one thing she won’t have to worry about. Oh, and her teachers have all been great in working with Ashley to get through her junior year!

It’s just hard to believe how quickly things can change. A month ago, who would have thought all this would be happening? But we are so thankful, as there are so many other children in Vanderbilt Children’s whose parents would give anything to hear slightest mention of a positive outcome. We should keep those families in our prayers, too.

I told a friend that God has allowed Ashley to have this and be healed from it because I firmly believe that one day when she is in the medical field she will be the one (when others may not know) to diagnose someone who has dermatomyositis since she knows the symptoms firsthand. She will be there to save that life.  

Thanks again to all of you for thinking of Ash. 

A little background....

After 4-6 weeks of tiredness, weakness, and then recent progressive pain and swelling in her arms and legs, Ashley has been diagnosed with  dermatomyositis. You may or may not know.... its a autoimmune muscle disease that affects the muscles and skin. The cause and how you get it is unknown, but it could be genetic factors, viral muscles infections of muscle or autoimmune mechanisms (according to one source I saw). Luckily it is now treatable and curable. The doctors said about 5 in 1 million get this and it can be difficult to diagnose. We were lucky, they said, in that they were able to diagnose it quickly.

You can read more at:

mayoclinic.com and search dermatomyositis

She was first diagnosed with mono and we thought she had that for a couple of weeks. But once the pain and swelling set in it seemed to be something more. After numerous visits and repeated tests at her doctor (and consults with doctors at Vandy who couldn't diagnose it either) to rule out anything we thought could be even more serious, her doctor then sent her to Vanderbilt Children’s Hospital to the Infectious Disease Center last Thursday. That same day we then found out the first mono test gave a false positive reading; a second, more–detailed test showed her negative for mono. A doctor in his fellowship there, who was substituting for the doctor Ashley was suppose to see, was the only one who had ever seen a person with this disorder and recognized it on Ashley when he saw the redness that appeared on her knuckles and knees. We were lucky he was there to see her that day and know God put him there to see her. Vanderbilt said we are very lucky to have found this diagnosis so quickly. Given the symptoms of the disorder it can take months and months of tests to rule out what it could be before you finally get to dermatomyositis. 

Oh well...

Okay, so it's called social media...I get it, I'm just not sure how I feel about my personal life being online. I'm facebooked, linked-in and now blogged. I haven't twittered yet, and not sure I want to. I've had several requests to start a blog to share information on Ashley, so this is why the blog. 

The name "Open JARS"?....well, to myself I've kind of always called my family The JARS...Jeff, Ashley, Robin Siptak...and online you kind of open your life to everyone. So, I guess we're now Open JARS. Is all this "free-for-the-reading" technology really good? Am I still just too "old school"? 

More on Ashley in a bit...