Tuesday, August 31, 2010

How Do You Spell Relief?

Yesterday was the big visit up at VCU Medical Center. It took us about an hour and a half to get there. Pulling into the parking lot was very emotional for me. I choked back tears and tried to smile. But when you see a sign with the word "cancer" in it, it's hard not to feel those overwhelming feelings of worry! When we stepped foot into this place, I don't think I've ever been greeted by a more caring and compassionate group of workers, nurses and doctors. As we sat in the waiting room, the tunes from a keyboard came pouring out from one of the other waiting rooms. We peeked around the corner to see a smiling man sitting to the side with a huge keyboard and he was happily bouncing his head as he played. My girls had the biggest smiles on their faces and that actually caused me to smile. How wonderful this was! Here is a man volunteering to sit in a waiting room to play some upbeat happy tunes to take just a bit of the edge off about being there. Worked for me!

So we get called back by a wonderful nurse. She joked and smiled as Kacey told her what was going on. She assured us Dr. D would be in soon and she left out. About 5 minutes later, a knock and then in walked one of the cutest smiling docs I'd ever seen! He took Kacey's hand in his and said "Well, you must be Kacey". I think if she could have fallen off the table she would have! He introduced himself to her and then had her introduce all of us. He didn't start his conversation with "Why are you here?" or "What's wrong with your arm?" He started it with "So how has your summer been? Done anything fun? Are you ready for school? What grade are you going into? Are you an Honor student?" The last question made me giggle because she answered "I get A's and B's" and he said "Do your parents punish you for those B's?" and she got this shocked look on her face and she said "No they don't but they don't want me getting a C" and he says "Well, remind me to have a talk with them after this because you need all the A's you can get!" and then we all laughed! Talk about taking some edge off...wowwwww! So then he started moving her arm around, asking her questions about it and then pulled up her MRI results and Xrays. It was definately visable and he said he wanted to make sure it was what he thought it was so he asked us to excuse him so he could consult with his Radiologist, who happens to be one of the best in the state of VA. (wow! I heard he was the best Ped Ortho Oncologist too!) So about 10 minutes later, he came back and said it was exactly what he thought it was. Benign Osteoid Osteoma. All I heard was the word BENIGN! He said it is not what the other doctor thought it was and he wrote it down on a piece of paper and told me to google it. WHAT?!?! Good grief...I did that with what they thought it was and ended up reading all about cancer. And now hes telling me I can go read about it?!? He went on to pull the MRI back up and show us what it was. He said it's a tumor growing on her bone and the bicep tendon that runs right beside it is rubbing against it and thats what causing her pain. He wanted to be 100% sure that was what it was though so he wanted her to have a CT scan done. Great! More weeks of waiting! So I explained that we drove 1.5 hours to get there and making the trips were costly for us. He told me to sit tight for a second. The nurse came back in and asked us to come with her because he'd gone back to Radiology and told them Kacey needed a CT scan done STAT. Wowwwww!! Within 20 minutes, she was in CT scan and then while she was in there Dr. D called them and told them he could NOT wait for the results, he needed those STAT as well! I wanted to cry! Here was a doc pulling strings to save us from having to travel and pay additional co-pays! About 30 minutes later, we were called back to review the CT scan. He pulled it up and showed us where the tumor was hulling away the bone. Only option....surgery! Kacey started to cry and he explained that it was a tiny incesion in the top of her arm. He'd make sure she was completely comfortable before he started. He will go in and scrape out the tumor and some of the bone to make sure he gets it all. There is a 10-15% chance this will come back but he said he's going to do his best to make sure he gets it all. It is a day surgery but you know that when you throw diabetes in the mix there is always a possibility of more crap. So he's preparing us for overnight, just in case. He will call me when surgery gets closer to discuss the plan of action diabetes wise...pump, eating, ect. He is going to try and make her first on the list for 2 reasons...1 shes diabetic and 2 shes one of the youngest on schedule that day. So he took Kacey's hand again and told her he promised she would be back to new soon. Once the tumor is out, she will be able to stretch her arm back out without pain. Her surgery is scheduled for Sept 16th. It is a Thurs and he said she should be well enough to go back to school by Tues if she's up to it. You never know the monkey wrenches we will get afterward with diabetes so we will have to take it day by day. Once he left out, the tears rolled. Can you say RELIEF? Sure I know surgery is still going to make me nervous but knowing that this is something we can take out and she will be fine....makes me breathe a little bit easier!

Just knowing she is in good hands helps me rest a bit more. Her doc is 36 years old and it's obvious he loves his job! He's not stuck in old ways like those older doctors are and its nice to have an official diagnosis.

Friday, August 20, 2010

A Day For Awards

Today must be the day for awards!

After finding out my blog is on the Top 50 Blogs About Diabetes over HERE , I opened my email and read this....

Dear Jill,

Congratulations! Anne here, and your blog, Diabetes Sweeties, wasdetermined to be one of the top resources in the medical field. And so, ithas received our 2010 Top 25 Diabetes Blogs award presented by MedicalAssistant Schools!You can see your name amongst our winners here at:www.medicalassistantschools.org/top_diabetes/#Diabetes_Sweeties

Winners were chosen through a scoring system led by internet nominations,which came from your reader base!You can let your readers know you won by embedding the badge code.

If you choose to accept or decline the award, please let me know.Please do not hesitate to call or email if you have any questions. Manyquestions can be answered atwww.medicalassistantschools.org/top_diabetes/about/.

Again, Congratulations, and I hope to see your badge soon!


Anne Holt

Wowwww! Thanks everyone! And like I said before, EVERY single one of us that blogs deserves an award because we all touch someone in one way or another by sharing our experiences. YOU ALL ARE THE BEST!!!

MRI Update

I've been MIA the last week because I haven't been able to bring myself to blog about whats going on. Not that I haven't thought about it. It just seems that I can't type out what I want to in fear of it being so true. Call it denial....yes!

I'm going to try not to drag this post out because right now I still can't see through my tears. I've cried more the last 2 weeks than I did when we were told Kacey had diabetes....and that was TONS of tears! My eyes are puffy...my heart is heavy...my brain won't stop running in fast forward and my body is completely exhausted but my brain won't let it rest. I'm lucky if I've slept 2 hours each night and finally last night I took something to MAKE me sleep. (Thanks Frankie for doing 2am check for me) I slept from 8pm to 6am and never budged!

Alright...this is what we know. NOT as much as I'd like to know but we're taking it as it comes at us. On Monday when Kacey had her MRI, the nurse told me the ortho doctor would have the results by Tues morning. So on Tues morning, I called the doctor and they hadn't gotten them yet. So by 4pm I called back and the nurse put me on hold. The had originally made an appointment for Kacey to have a recheck on Sept 15th. She came back on the line and said, "Do you think you can come in on Thurs at 10:45am to discuss the results of her MRI with Dr. Chris?" I paused for a second and said "Is everything ok?" She paused and said "Yes we just need for you to meet with Dr. Chris." So we booked the appointment and it was a waiting game. I was so sick at my stomach. Why? Well because if everything was normal with the MRI then they would have just said "Her results were fine. Come back on the 15th for a recheck" My brain went into fast forward! When we were at the hospital for the MRI, I had taken a peek at the doctors orders while we were waiting. BIG MISTAKE #1. He was looking for a "proximal humerus lesion". BIG MISTAKE #2. Googling what that was when I got home!

Thursday came and I was a mess. I had barely slept and looked like shit! Can I tell you how much I love Dr. Chris? He was the one who casted Kacey when she broke her arm last summer. So it was nice to be able to see him again :) I just wish it wasn't under these circumstances. He came in the room with 2 of the MRI pics printed out. He said there is definately something there but he's not sure exactly WHAT it is? Typically if it was cancer, on the MRI it shows up as a round thing with spikey things coming off of it. This does not. Typically, a lesion is found in leg bones. This is not. This is a wavey round thing and its in her upper arm bone and it's causing her severe pain that shoots down her arm. Bottom line, he's not sure what it is? He said we had 2 options: OPTION #1. We can leave it alone, see if it gets better, re-xray it in 6 months and see if its any bigger. OPTION #2. He will refer us to the best Pediatric Orthopedic Oncologist in the state of VA. WAITTTTTTTTTTTTTTTTTTT!!!! Did he just say Oncologist? YES. HE. DID.!!! If I could pass out right then, I would! Can I puke? Ummmm....I can't even cry!!! I can't scare Kacey! I can't scream! I can't even talk!!!! So he went on to explain to me that he didn't feel comfortable leaving it alone and if she was his daughter then he would opt for the Oncologist and they would be able to tell us what is was for sure. OK...was this his way of letting us down easy so we didn't freak out? Did he not want to say it was the C-word? Could he see the worry on my face? YES he could! He looked at me and said "Mom, I know it's hard not to worry but if this is cancer then it is not going to grow as fast as I think it might in just 2 weeks. He said it would take about 2 weeks to get in to see this doc up at MCV. The made us the appointment while we were there....August 30th. That seems SOOOO far away! In the meantime, we try and stay sane and go about normal daily life.

How is Kacey taking things? She doesn't know what they are really looking for. She just knows she is going to a doctor that specializes in the pain she's having. Thats all she needs to know! The last thing I want is her worrying! We did manage to fill Kayleigh in on whats going on. She cried. But we wanted her to know why we were so upset and that we were going to need her to take up some slack with the chores.

PLEASE keep Kacey and our family in your prayers. I'm not sure what news we will be hit with on Aug 30th but I will update as soon as I possibly can. I'm preparing for the worst but hoping for the best! I just feel like I'm at rock bottom right now and I'm not sure how much longer I can do this unmedicated. Hey...don't we have some D-Moms on some good meds? LOL! Geesh...if I don't laugh then I'm gonna cry some more!!!

On a good note, I love hearing about and seeing all the blog changes. Forgive me for not updating my blogroll...I will...just too much on my hands right now to do it. Once things settle down and I am not so stressed, then I will update and add. So please don't think I'm not seeing them and I don't care...I REALLY DO!

Also, some pretty amazing news that Wendy from Candy Hearts Blog shared with me yesterday....Diabetes Sweeties was named one of the Top 50 Diabetes Blogs over HERE. It is an HONOR to be named but there are so many more that deserve recognition than the ones named on that list. Each and every one of you bloggers have a special place out there and I'm truely thankful to call you my FRIENDS! Wendy, thanks for spotting this out and thanks for being a sound board for me when I got the news. If you all haven't been over to Candy Hearts Blog yet, please jump over there and register for the most amazing contest that Wendy has going on! She made all kinds of pretty changes to her blog! Happy 2 year Blog-aversary Candy Hearts!!! :)

Friday, August 13, 2010

Smith's Medical/Cozmo,
If you happen to read this after you get the box with Herbie in it and find my blog address, please know that the following pictures show the process from Herbie to Goober. It's been a very emotional week for my daughter Kacey. The pump that you got back was her very first insulin pump. He holds SOOOO much sentimental value for her. I know that there will never be another Cozmo pump made and in March 2012 all warranties will be out of date. Herbie cannot be fixed. He cannot be used as a pump for her anymore. He's no use to anyone but he's a VERY important part of Kacey's life. Her best friend. I don't know what happens to those broken pumps that you get back? I don't know if you pop them open and take out the insides for other pumps? But what I do know is....if there is anyway possible to get Herbie back...we'd LOVE to have him! He can't be hooked back up and used as a pump but he can be placed on her shelf as a forever friend. I know some people think we've probably gone insane and lost our marbles because we made Herbie a "person" but when you have a young child trying to accept life with diabetes, you do what you need to do to make it through daily life. You can keep the computer part of him if that is what you need. She won't ever know that is missing out of him. So I ask you to please consider this. We'll forever be greatful!

Thank you so much!
Jill ~ Mom to Kacey
Getting the package and opening it up...holding Goober for the first time.
The reality hits! She knows that it won't be long and she has to disconnect her best friend :( My heart ached for her!

Comparing Goober to Herbie...two pumps...identical...but two different sentimental values!

Goober vs. Herbie

Time to say goodbye...yes...I finally had to pry Herbie from her hands. One of the hardest things I've ever had to do as a Mommy. She was sooooo connected to Herbie and it broke my heart to have to take him from her.

Herbie's crack ...LOL I did make Kacey giggle when I said I needed to take pictures of "Herbie's crack"

Delivery stopped...it felt like Herbie's heart had stopped :(

He's officially gone :( Pump stopped and cartridge was unloaded.

A few hours later, she'd finally settled down and started finding a new found friendship for Goober. No, he wasn't a "Herbie" but he was walking in the same shoes and keeping her alive and for that...we're VERY thankful!

Poor Chloe didn't know what was going on and she was so upset that Kacey was crying. Kacey reassuring her that she was ok :)
Today was a better day. The basal changes we made have kept her in 90's-100's except for one low of 62 this afternoon. She only cried once and that was when we moved the box Herbie was in. We haven't boxed him up to send him back yet but that is happening on Monday. So I'm not looking forward to it!
Some other news... Last week, I took Kacey to see her regular doctor because she was having trouble straightening her arm out. As far as I knew, she hadn't hurt it by a fall or accident. The day we left for vacation, she woke up and she said she couldn't straighten out her arm. I passed it off as "Ohhh well you probably slept wrong on it." and I gave her some Motrin. The whole time we were on vacation, she complained. So when we got back, I made her an appointment. When I took her in, it had her doc puzzled. He said he wasn't sure what was going on and he sent us for xrays. The next morning, I got a call from the nurse that said "There was no fracture or break but a spot on the bone was noted and an appointment with orthopedics needed to be made." I felt like I could puke! I called them back and made the appointment with the same doctor that Kacey saw when she broke her arm. She loved him! So last Thurs, we went to see him. He looked at the xrays and examined her arm. He said the tightness in her arm was most likely bicep tendonitis from some sort of injury she had but didn't tell me. She's got a very high pain tolerance so who knows when she hurt it. So then he said "Now...about this spot" I got a lump in my throat. He said he was very concerned about it. If she was 80 yrs old then he wouldnt be so concerned but he said he didn't like the look of the spot. So he walked over to Kacey and pressed on her arm where the spot was showing and she came up off of the table in pain. He shook his head and said "yep, we need it checked asap". I asked him what "that spot" meant? And he handed Kacey a copy of the xrays to distract her and he turned to me and said "we just need to rule out any kind of cancer or abnormalities". RULE OUT WHAT?!?! That C-word swirled around my brain like a Kansas tornado! So then he explained the process of a MRI to Kacey and explained that there was a possibility she might have an IV of dye that would show up the spot and so they could see why she was hurting so bad. Kacey was surprisingly calm and the whole time I wanted to bust into tears but I had to hold it together so I didn't scare her. It's been a week since that appointment and its been a LONG FREAKIN WEEK! Between that and then the stuff with Herbie, I've just wanted to crawl under the covers and not come out :( but then who would I be hurting? My girls! So I've stayed strong...I've NOT announced any of this on Facebook...I've only told Frankie, my Mom and my best friend about it because I didn't want Frankie's family thinking that Kacey was on her death bed like they did when she was diagnosed. I don't want anyone to know anything until I know what exactly "that spot" is. So why did I blurt it out here? Because this is my blog and I can't keep these feelings bottled up! I have this blog to vent and open up and I NEED IT or else I'm going to need some form of medication to get through this....which BTW, probably wouldn't be a bad idea! So we go Monday at 3:45pm for the MRI.
Then...yesterday we got some pretty freaking amazing news! I checked email around lunchtime and there was an email from Kay's guidance councelor in there. I opened it and it was asking for her to call her councelor as soon as possible about her schedule. UGH! Great! So Kay called her and she asked Kay if she was still interested in taking Culinary 2? Remember, Kay had dropped it because of the teacher. She was going to take Photography, Banking & Finance and Business Management in place of that Culinary class. So Kay paused for a moment and she said they got a new Culinary teacher and wanted to offer the class back to Kay. You would have thought Publishers Clearinghouse had just showed up with a million dollar check for her! She started jumping around and screaming and ultimately said OMGGGG YESSSSSSS!!!!! So, Kay WILL be able to finish her 2yr Culinary degree :) THANK YOU GOD FOR ANSWERING OUR PRAYERS!!!! Kay has been so sad about not being able to complete her program because of a teacher conflict. Hopefully whoever is taking over the class can catch these kids up and they can actually LEARN something this year!!! :)
So there ya have it! Long overdue feelings out in the open. If you made it to the bottom, thanks for reading! Sorry for being long winded but I've had so much bottled up that I had to let it out or I was going to explode.
Luv y'all!

Thursday, August 12, 2010

Goodbye Herbie

I didn't think those words would come out of my mouth until it was time to upgrade to a new pump. I certainly didn't think it would be as complicated as the last few days have been. I even more so didn't think I'd ever be crying over something the size of a cell phone.

Why the tears? Why are we so upset? Well, Herbie was Kacey's very first insulin pump. So I can see where she'd have some attachments. She waited so long for him, he arrived right after her 9th birthday and from the moment he was in her hands, it was love at first site! But why am I so sad? Well, this is a piece of equipment that I've trusted for the last year and a half to keep my daughter alive. He's become like "family" to us. For the last year and a half, I've found myself thanking him in the middle of the night...cursing at him when she was high...and feeling blessed when he showed us some good numbers. I guess I do have a reason to be sad right along with her.

Today, the new pump arrived. It was delayed a day due to some bad weather in PA. UPS showed me this:

4:16 A.M.

Around 11am this morning, the box arrived. She wasn't too excited to open it but it was something we had to do. She took out the new pump, looked at it and then layed it back in the box. Then came the tears! Those uncontrollable ones that she couldn't stop. I hate seeing her this sad. I figured it was best to try and just get her mind off everything and let her settle down before we tried putting any settings into the new pump. So we went to Walmart and got some groceries. After lunch, we sat back down and I told her "it was time". We opened the box back up and took out the new pump. I uploaded all of Herbie's settings into the software and then I downloaded them to the new pump. There I sat...two pumps...two identical settings...and it was time to hook up to the new pump.

Kacey and I both cried as we did the site change. It wasn't the loud crying...just those silent tears and neither of us spoke. She sat down in the chair with Herbie in her hand and continued to cry. I connected her to the new pump and within seconds, he was filling Herbie's shoes. Just...that...simple! As she looked down and him and cried, she looked back at me and said "Mommy, I'm going to try and get him back one day." I wasn't sure what she meant until about 30 minutes later when she came to me with a letter. As I read the letter, I cried all over again. Could this be? Could this happen? Is it possible? We won't know until after they get the box back. In case you're wondering... this is what it said....

Dear Smith's Medical and Cozmo,

My name is Kacey. I'm 10 years old. I got my pump when I turned 9 years old. Herbie (my pump) was the first pump I ever had. He was the best. I love him so much. I know no more Cozmo pumps are being made. So if you're going to throw him away can you please send him back? I didn't want him to crack and I'm so sad. :( I would like to put him in a glass box and keep him FOREVER. Thank you so much.

Now, if you weren't crying by now...you should be! A sad child begging to keep her very first pump. UGH! So yes, I'm going to put this letter into the box with Herbie. I'm adding my blog address at the bottom. And let's hope and pray that Kacey gets the closure she is asking for.

So..... ~~~drum roll~~~
Allow me to introduce you.....

IT'S A BOY..... Welcome "Goober" to our family!

It's been over an hour since she's been connected. The tears have settled a bit and she just came in to me and said "Mommy, I think I'm going to be ok." ***sigh*** "Yep! You sure are! Goober is going to fill those shoes and take care of you the same way Herbie did and you're going to love him the same...maybe not as much...but he will be loved for sure!"

So today we say... RIP Herbie! We love you!

**Pics to come soon!**

Tuesday, August 10, 2010

Cracked Herbie

It's been a LONG 15 hours!

Last night, Kacey had sight change. Since it was close to dinner and I was cooking, I told her to ignore it and we'd change it before bed. After dinner, we got sidetreacked and then the Teen Choice Awards were coming on and both girls were wanting to watch them so we gathered everything to do a quick site change before it started. It was anything but QUICK! As I tried to turn the cap to where the cartridge is held, it felt stuck. I turned a bit harder and figured it was because it was a new cap. The other one cracked about a week ago. I guess after a year and a half, it was time for that to crack. As I turned the new cap, it was tight. I got it off, filled the cartridge, put it in and started to load when I saw it. THE CRACK! It was a crack around the plastic part that holds the cartridge cap on. I held it up...looked close to make sure...and yes it was cracked! Kacey immediately went into a crying fit. I held her close as she sobbed...and yes....so did I. I felt her pain. It was almost as if I'd told her a friend had died...and in her mind...it had. She knew we'd have to send Herbie back and she just wasn't ready to part with him yet. I thought we had until next summer to prepare for this! She was so upset because she thought she was going to have to go back to shots. I prayed hard that the piece wouldnt break off while I was screwing the cap on to close it. It didn't...THANK GOD! I called Smith's Medical and got the after hours support line. I only waited 10 minutes for someone to call me back. The woman was VERY nice and she said it was too late to overnight a pump last night so one would go out this morning and we would get it on Wednesday. I told Kacey about the new pump and all she did was cry even more! I knew we had to try and forget about it for the night so I got her sidetracked her watching the Teen Choice Awards. Then came bed...and more tears :(

She woke up this morning....sad! She didn't want breakfast and has barely eaten lunch. I hate seeing her so upset so I sat down and talked with her about it. I tried to draw a parallel with Herbie and my cell phone. I explained that they make pumps out of very strong plastic like they do cell phones. They are made to be durable enough to be dropped but after alot of use, even the most strongest and expensive cell phones wear out! Opening and closing the phone wears on the hinges just as opening and closing the cartridge cap wears on the plastic part it screws on. It's not her fault. She didn't drop him. He's just worn out! After more tears, she finally had a little something to eat and she's just layed around. I told her that I understood that she was sad, we all are, but she would have a brand new shiny Herbie on Wednesday and he would be as good as the old one. She snapped back at me and said, "The new one will NOT be called Herbie! There is only ONE Herbie and I have to give him back!" and then more tears. I had to walk away because I busted into tears. She's most upset about having to put Herbie in the box and send him back. This is her first pump and I don't think I've ever seen her so attached to something...not even her baby blanket!

I knew we'd be making an upgrade to a new pump next year so I'm hoping that as hard as this is now, maybe it will make things easier come next year. The attachment to Herbie will settle down and she won't be as attached to this new one and she will be more open to seeing the new pump and moving forward with technology. Blessing in disguise? Possibly! I dread having to put that pump in the box and send it back...I ABSOLUTELY DREAD IT!!! My heart aches for her right now :( but I guess I should be glad that Herbie didn't die on us and leave us hanging to do shots for 2 days while we waited for the new pump.

I guess the new pump will arrive on Wednesday and for now I will work on trying to get her excited about choosing a new name. Same pump....same color....different name. Stay tuned! :)

For those of you that sent us prayers for Kayleigh....THANK YOU! We have appointments for physicals in 2 weeks and we're having her A1c checked and also having her thyroid checked too. She's feeling better and she hasn't had anything over the 160's yet. I had emailed Kacey's CDE about it and she reassured me on several things and helped me settle the panic. We had to go over to the hospital yesterday and pick up Kacey's papers for school and Kacey's CDE was there! We were excited to see her :) She asked how we were doing and about the girls numbers. Then she told Kacey about the new upgraded MiniMed pump coming out with the color screen. So that got us a little excited!

Before Herbie cracked yesterday, we'd been talking about upgrading next summer. It will be the summer before she starts Middle School. So we thought...new pump...new school....new cell phone! She doesn't have a phone and when Kayleigh was in 6th grade, we got her one so we told Kacey she could have one then too. We would have to start the process before school gets out in June so we have the summer to get used to it, play with basals and learn the buttons. I doubt it will take her long to master it! So we have that to look forward to :)