10 Years Ago

...today, our family faced what we thought would be the most difficult time in our lives.

April 5, 2002.
Carly was taken back to surgery at 7am.
Open heart surgery.
Surgery that would last about 6yrs.
A surgery that no doctors were confident about doing.
Odds were stacked against her.
She had less than a 20% chance to come out of it alive.

She survived.
Much to the surprise of Motts Cardiac Doctors.
Her surgery deemed, a success!

13 hours after surgery, Carly coded/crashed.
The entire ICU swarmed her bedside.
One nurse straddled over Carly's gurney.
Paul and I stood back and watched in horror.
We later learned, the nurse who straddle over Carly,
had her hands placed on Carly's tiny heart, massaging it.
Carly had a pulmonary hemorrhage..her lungs were shot to HELL!

The equipment you see in the above pictures,
is ECMO and yes, it's as scary as it looks.
But, BUT after 3 1/2 days, ECMO saved our sweet girl.
She beat the odds stacked so high against her.
She fought her way back.

31 days after surgery...we brought her back home.
Healthy.

And now, besides our memories,
both good ones and even the bad ones,
this is what we are left with.

Our hearts beyond broken.
Our hearts completely shattered.

How can 10 years have passed so quickly?
How can all that was fought for be gone?

10 years.
Unbelievable.

September....

...is Childhood Cancer Awareness Month.

I've been laying low when it comes to blogging. Haven't had the desire to sit down and just do it. Call it self pity, laziness...or just simply neglect, I've just avoided it all together. I have managed to check on a few of my friends blogs. But, checking on them has been few and far between too. In all honesty, I've tried to avoid all the "back to school" posts. Although I am so happy for all my little Down syndrome (Ds) friends, as they venture on toward another year of school, learning and fun. Again, call it a little self pity, but my heart aches just a little more..knowing that my girl isn't among that group of back to school--ers.

I thought I'd sit down and blog about something that will always be a part of my life. Childhood Cancer Awareness. In case you missed the title of this post, September is Childhood Cancer Awareness Month.

Many of you know the story of Carly and her diagnosis of cancer. Acute Lymphoblastic Leukemia (ALL), on Sept., 25, 2004. Trust me when I tell you, NOTHING and I mean NOTHING can prepare you for the words, "your daughter has cancer". It knocks you down. It brings you to your knees. It takes the wind right out of you. Especially if you had no idea that your kid has about 80% greater chance to develop leukemia than the "typical" child.

Unfortunately, leukemia is not something that is all that uncommon among the Down syndrome (Ds) community. How on earth my family went for nearly 2.5yrs before finding out that Carly had a much higher probability of some day being diagnosed with leukemia is beyond me. But, no one ever told us and we certainly never read about it. We were devastated and absolutely in disbelief and very much terrified for our sweet little girl.

Sadly, I've learned quite a bit about leukemia. I really had no choice but to get educated. Fast! Childhood cancer is scary. VERY scary! The first few days after diagnosis is horrifying. You are given TONS of information. Doctors and nurses come at you and your child from all different directions. It's kind of like watching the cartoon, Charlie Brown..when the teacher is talking to the class, but all 'we' hear is, waah wahh wahh...that's what it's like being bombarded with "cancer" terminology. It's exhausting and overwhelming.

As a parent, you quickly catch on to all the terminology. You learn to how read all the reports. You learn all the different types of blood tests and their importance. You are told about broviacs and ports. You quickly learn how to flush IV lines. You learn all the different types of poison..err I mean, chemo names and their side effects along with the risks associated with the chemo. You are given the 'road map' or protocol of your child's cancer and a treatment plan-in our case, it was 26 months worth of chemo. You learn all the ins and outs of IV chemo, oral chemo, steroids, spinal taps and bone marrow aspirates. You see your child receive blood pretty regularly, especially in the beginning. You see the bag of platelets that are given to your child, when their platelet count is dangerously low. And you see children of all ages, infants thru teens who are deathly sick and fighting for their lives. You see pale white skin, bald or thinning hair, big black circles around these children's eyes. It breaks your heart and if it doesn't, you my friend,,, are NOT human!

As you are thrown into a world that most of us didn't bargain for you quickly learn how the platelets work and why they work and why they are so darn important. Parents learn how the immune system works, we learn all about the absolute neutrophil count (ANC) and whether the ANC is high enough to continue with chemo..or if its low and chemo has to be put on hold until the ANC comes back up to a safer range. We also learn how the white count works with the ANC..the correlation between the two. We are told of the signs of a low red blood count. We are taught to watch our kids closely. Watch for fevers and if a fever does occur, head to the ER if the temp reaches 100.7-under the arm. Infection is always worrisome.

In a way, parents who had no desire to get into the nursing profession,,suddenly find themselves right there in the midst of "nursing". We learn to give shots..although, I flat out refused to do the shots. I had family and friends who are nurses, they came over and gave those shots to Carly. No way in HELL was I going to inflict pain on my little girl. NO WAY! But I was taught and had the need come, I would have done it. I did however, learn rather quickly how to run IV's, flush lines and all that crap. Thankfully, Carly had a broviac (and later a port), which meant she didn't have to be poked by me. Nonetheless...it was awful. UofM always told us parents, "when treatment ends, you parents earn your honorary nursing certificate" I told them, "no thank you, I'll pass!"

Most people do not realize all the different types of childhood cancer. I still don't know all of them. I am however, very familiar with ALL. Lived it. Know it. HATE it.

Being a cancer mom, you learn how to live a whole new life. Life as you once knew it is over. A new life begins. Life full of medical terminology. Frequent Clinic visits and lab work. Friendships made with other children and their parents along with nurses and doctors who become extended family members. Long days spent at Clinic, trips to the ER in the middle of the night along with many admissions into the hospital. It's a nightmare. You see your once vibrant child, looking deathly ill with pale skin and dark circles under their eyes, you see the weight loss and weight gain in your child. And some of us will even experience very near death experiences.

A diagnosis of Childhood cancer wreaks havoc on your entire family. Siblings of a cancer child often times feel forgotten. The focus has to be on your sick child. Forgetting your other children is NOT something we, cancer parents, intend on doing. But it does happen and it happened to our kids. I know our kids knew that Carly needed us..but still, they were left alone more times than I even like to think about. But, we made it through cancer and we were learning how to live a new normal life..because life never is normal again...not as it was before cancer hit.

I often times get so pissed. Pissed because Carly fought and won her battle with cancer. She endured 26months of chemo along with many hospital inpatient stays and 3 extremely close calls with death. All of which, she WON...only to lose her life in a mere 1.5hrs. Makes me sick. That's what she gets for enduring the evilness of cancer?? Pretty messed up if you ask me. And for the record--Carly had NO cancer whatsoever, within her little body at the time of her death. She was CANCER FREE!

I leave you with the face of cancer. The many faces of Carly fighting ALL-(leukemia). CANCER SUCKS! However, do you see that little smiley face in nearly every picture?? Yep, this little girl brought US through this horrible nightmare. She carried US through it. She made US strong while she was so ill. I was asked once, during treatment, "Joany, how do you do it?" My answer, with no hesitation, "because Carly keeps marching forward. She is carrying us through it and that's how I do it." Even in her weakest days, she gave her "mama" all kinds of strength. Love her and miss so much. Much more than most of you could ever even attempt to imagine.

Medication

This is what you're left with after the sudden unexpected loss of your child.

I hate the fact that I have to take these med's.

I hate the fact that I need them to get through the day.

Depending

On

Medication

To

Get

Through

The

Loss

Of

Your

Child

SUCKS!

Personally, I'd like to throw them all away, but my doctor says
"you HAVE to be on these med's."
Truthfully, I HAVE to have them.
Can't get through my days without the stupid med's.
Like I said.
It SUCKS!

Donations to CLF of Michigan

I've been asked a couple of times about the CLF (children's leukemia foundation) 5k walk/run taking place on Saturday, Aug 14. People are wondering if they can still donate. The answer is YES. Please do, if you are able to.
Click here CLF and then click the donate button and follow the directions.

This is a wonderful cause to donate to. CLF of Michigan provides support to families who have a loved one battling leukemia or another blood disorder/cancer. They help with utilities, mortgage payments, car repairs and even provide families gifts for children with siblings or a parent who is battling a blood cancer, during Christmas time. We never took advantage of their services. Came awful close a few times, but we'd fine a way financially to manage. It was very difficult at times, but we always thought that some other family may need more assistance than we did.

If you feel it in your hearts to donate, it would be greatly appreciated.
Thanks!

A worthy cause

Ashleigh and her friends are running in the Children's Leukemia Foundation of Michigan's 5k (click here), in memory of sweet Carly. Team name: Carly's Angels. Reason being; Carly LOVED, LOVED, LOVED Ashleigh's friends! Even tho, Carly is now, likely their angel watching them from above, we all thought the team name was quite fitting. Those girls cheered her on and visited her throughout our experience with this evil, nasty cancer. Carly had more big sisters than any kid I know!

The girls are trying to raise at least $500. I realize most of you who read this blog, are not from Michigan. However, leukemia was a HUGE part of our lives with Carly. She was diagnosed with it in Sept '04 and from that day forward, it was our life. Countless hospital stays, tons of toxic chemo drugs, several surgeries, several bone marrow biopsies, several very near death experiences, many clinic visits and blood draws, X-rays, ultra sounds...the list goes on and on and on.

Although Carly was born with Down syndrome, and stood about an 80% greater chance to develop leukemia, none of us are exempt from this horrible blood cancer. Not me, not you, not your children. This is a very worthy cause and one that will always be near and dear to our hearts.

Ashleigh has participated in the Relay for Life before. She and her team raised a very nice chunk of change! That time, she walked in 'honor' of our sweet girl. Her team will now walk in 'memory'. Which makes us all so very sad.

If you find it in your hearts, to help with this worthy cause the girls would greatly appreciate it. Any amount at all helps. Again, click here, if you care to help out .

Dare I say it??

I think my dizzy spells may be a tad better this mid morning! But only a tad. One could hope anyway. I don't like this feeling at all. It's very scary to be dizzy so often. Yesterday, I bent over to pick something up off the floor and I nearly fell face first. I caught myself on the edge of the counter. Just before hitting the floor. Carly got a good laugh in seeing that! She got a really good laugh in the other day. I sneezed and fell backward. Carly laughed so hard. So did I. Even though it was very weird to sneeze and fall backward, it was funny. And no doubt, quite a sight!

Yesterday, my mom went to the doctor. We have the same doctor. He's awesome. She told him about me and my dizzy spells. And he already knows we have no health insurance right now. He said my mom was describing, what sounded like a terrible case of inner ear infection. Kind of what I was leaning toward...but I don't have a medical degree! Anyway, doc gave my mom some samples of antibiotics and told her to have me to start taking them ASAP. Good thing too, 'cuz last night was horrible. I couldn't do too much. My head was all swim-y feeling. I couldn't type worth a darn. My fingers just couldn't hit the right keys on the keyboard. I handed Paul a bottle of Diet Pepsi and completely miss judged what I was doing...dropping the whole thing onto the floor. Not a pretty sight. Paul had to clean it up...I couldn't bend or squat without falling over.

I had to stopped driving for a few days. One reason being..I nearly killed Carly and my mom and I on Tuesday. We were heading to Carly's dentist appointment. I was feeling so off that morning. I thought it was from getting no sleep the night before. Thanks to the loud obnoxious thunderstorms passing through the area ALL NIGHT LONG! We were driving down the highway...or freeway...or expressway, which ever floats your boat! I put my blinker on, checked my mirror and began to pass a very slow moving truck. Suddenly, there was a car fender at my driver side window. I jerked the wheel..just like you're never suppose to do. I nearly lost control. I jerked back on the wheel again... and then leveled the car off. Scared the CRAP out of me and my mom. I of course told my mom that the car appeared out of nowhere...but, in reality, I miss judged. Big time! Should have had mom drive, but she doesn't drive highways or cities anymore.

Hopefully, things are on the upward swing today. I think they are. I still feel a bit off. But, as of last night, I have had one double dose (per doctors order) of antibiotic in me. I'm still eating Antivert (drug that levels out your equal librium) like candy.

I am hoping Paul's boss will do something to get our insurance back. Although, he is not the most honest man. I've been making phone calls like crazy. The union,,,where I talked to the "big dog", as Paul put it. I've called the benefits people at Paul's work. I've called the insurance company and anyone else I think can get the ball moving. I'm hoping we have insurance back by May 1. I will then cram all kinds of appt's in. Paul and I will be going for our yearly blood work. I need a yearly with the GYN. Thank goodness I had my mammogram in December. I need to get to the dentist and I really need to get to my Cardiologist. Guess I'll be busy.

We pay out of pocket for Carly to go to the dentist. (we have GREAT dental coverage, when we have insurance) I wont let her health/teeth go down the gutter. We will pay out of pocket for costs for her. No matter the price. The rest of us can just wait. It cost me $200 to get her teeth cleaned Tuesday. Last month, I took her for x-rays, because the school said she was complaining of a toothache. She was fine, but that cost me $105. Then I took her to the doc the same day and spent another $50.

Gosh, reading all that makes my head spring! HAHAHA! If I had to say it...I'd say, I'm a tad bit better today.

Have a great Thursday!
and please, excuse any errors you encounter while reading this.. My head is still kind of swim-y feeling.

Blaaahhh....

...is the best way to describe how I have been feeling.

I've been sick. Feeling miserable. Coughing. Stuffy head. Sore throat. Headache. Body aches. Just plain miserable. I'm on antibiotics, and they seem to be slowly working. Thankfully, I haven't been sick in about 3 years. Other than a sinus bout here and there. I just don't have the time to be sick.

Poor Carly. She is still dealing with strep throat. It WILL NOT go away. Other than complaining that her throat hurts, and for the red spots and red throat...she is showing no other symptoms. Which is good, I guess.

We were back to the doctor yesterday. Carly received a second shot of Rocephin. She is now done with 2 different oral antibiotics, that she was on back to back, as well. Now, we worry about thrush. Oh and her allergies are kicking in to. Not fun times.

So there you have it. The reason for my lack of blogging. Oh, I missed my menu plan Monday. Trust me, I'm cooking very little. Paul was put in charge of that! I can tell you, tonight we are having soup and grilled cheese sandwiches. Who knows, I just may hit the kitchen myself. Sadly, it won't be homemade soup tonight.

It's a Manic Monday

Carly woke me up at 10pm last night. I could tell she was having stomach cramps. She was pulling her legs up and in toward her chest. Like a big dummy, I convinced her to lay back down. Which she did. She even closed her eyes and feel asleep. For a minute or two. She then woke up telling me she had to go "potty". So, off we went. Much to my surprise, poor Carly had already had a major accident. She was a mess. She sat on the potty and went even more. Poor kid. Guess I should have gotten her up and taken her potty before she told me...I knew she was having a stomach ache..I just never dreamed she'd have an accident.

This is how she's doing today.

Not awful, but just not herself. Thank goodness she hasn't had anymore accidents. She gets so upset with herself. Even tho I tell her, it's okay and that it's just an accident.

To top off the morning...Carly discovered that Penny, our cockapoo (dog), had been sick in our living room. Likely in the wee hours of the morning. In two different spots. Fun, NOT! I got the cleaner out, which Carly hates the smell of. It makes her gag. Me too for that matter. Got the dog puke out of my house and all cleaned up. Laundry is going and I'm off to take a shower and try to wake myself up!

Told ya, It's a Manic Monday for me today!

Teeth. Sissy and missing poppa and grandma.

..Carly's complaining of a tooth ache. Remember this post?

Carly's teacher has sent me a note home on Wednesday and Thursday, telling me that Cary was complaining about her tooth hurting. Ugh! I have checked her teeth out each day. Even using a flash light. I wanted to make sure there was no abscess going on. Everything looks okay. To me anyway.

Yesterday I broke down and called the dentist. I didn't call the one we went to the end of Aug. That place was just too uncomfortable. Not to mention their receptionist was probably one of the most unpleasant persons I've ever come across. She was full of smart little comments, that stung just a bit. You can click here, for a refresher.

Anyway, I found a local kids dentist that sounds like she is wonderful. The receptionist was bubbly and sweet. Hopefully, this time at the dentist Carly will come out without tears streaming down her little face. I did some pretty intense searching this time around. I called other dentist offices in the area asking for recommendation for a pediatric dentist. I mentioned we had been to one in a nearby town. Each time I mentioned that dentist office, I was told, "Oh no, were not recommending them". Hmmm, I wonder why???

Come next Tuesday morning, Carly will be heading off to the dentist to see if any of those damaged teeth are in need of a root canal. I'm praying all checks out. I'd even be happy with a cavity at this point. Anything would be better than major dental issues.

Carly freaked out just hearing me talk to all the dentists offices I called yesterday. Poor kid. She is terrified of the dentist. Thank you Dr. J, for scaring the holy H out of my daughter. Needless to say, I'm dreading next Tuesday with a passion.

**********

On a brighter note. Ashleigh is coming home for a visit tomorrow. To say that Carly is happy would be an understatement. She is on could nine! We're all pretty anxious to see "sissy". We haven't seen her in over 7 weeks. Carly has been telling us all the things she and "sissy" are going to do. Here's the run down so far: puzzles, read all books (as Carly says), paint, color, play games, build with blocks, write letters and numbers...Yep, they're going to be busy sisters this weekend!

Another thing Carly is looking forward to next week. My parents will be coming home from their winter in Florida. They should be home by the 14th or 15th. Carly is missing them awful this year. In fact, she woke up twice this week, very early and I mean early, like 5 am early, asking for "poppa and grandma". She even shed tears. Poor little girl.

Carlys story. Part 6

Finally, Carly's story continued....

If you missed the previous "Carly's story" click on the following. 1 2 3 4 5. Or click on them if you need a refresher.


Shortly after we arrived at the ER we were taken into a room. Doctor’s began to file in and out. One by one.

The focus with any child who has ever had a heart condition before, is…let’s just say, about the only thing that the health care pro’s focus on. After they finally realized this had nothing to do with her heart, we finally got some labs ordered.

As Paul and I sat with Carly, we soon noticed that she was this awful color of yellow. Neither of us had noticed it while at home. Her tiny little lips were of no color. They were, well, colorless. White, to be exact.

Labs were done and we waited. As we waited, a very intense and nasty ER Doc., “head doctor” (as she put it) came into our room. She more or less scolded us. Her words will forever stay etched in my mind. Along with her finger wagging in our faces, “This is a seriously sick child, do you understand that?” We were really put off by her. I of course snapped back, as I took on my defensive roll, “We know she's sick, or we wouldn’t be here”!

Even though we had the nasty head doctor that night in the ER, we had several very concerned and compassionate doctors and nurses. One that came in with the preliminary results of the lab work, told us of course the devastating results. Leukemia. She talked with us for quite a while. She explained that they couldn't be certain, but it looked like it. I now know that she, couldn't confirm the diagnosis for us. It had to be done by Oncology. This is how she put it. She said, “We aren’t 100% certain. Think of it like this. It’s like your standing a beach, looking out into the horizon. You see an object way, far out. You can’t really make out the object, but you assume that it’s a boat of some sort. As you stand there, it becomes a little clearer to you. Yes, a boat. What kind, you’re still not sure. Time will tell as it gets closer to you. Whether or not it’s a sailboat or a ship.”

As we cried for what seemed like forever. Paul and I sat holding Carly and each other. We decided it was time to make those dreaded phone calls to family members. Paul called Ashleigh and Brad. He also called my parents. I was too much of a wreck to do either of those calls. My parents were at a wedding in Bay City that night. We were in Ann Arbor. Quite a distance between the two. They told Paul they were heading to the hospital and would be there in a few hours.

After I gained my composure. I finally went outside with my cell phone. I called the kids and my parents (who were at that time heading to Ann Arbor) and my brother. Ashleigh, was in total disbelief. She kept telling me, "no, mom, they're wrong". My brother, he was in shock too. Matter of fact, there was a very long pause from him after I told him the news. At one point, I thought I had lost my connection. I even looked at my phone to be sure I still had a signal. I soon realized he too was in shock. I asked him to call our oldest brother. My call waiting was ringing. It was my mom. We cried and cried forever while on the phone. She just kept saying, “We’re on our way, we’re on our way”.

Within an hour of talking to my family. Pastor Bob, from our church came into the ER. He sat with us. Cried with us. Prayed over Carly. Prayed over all three of us. He did so, all while he was battling an awful sinus infection. He ended up staying with us into the wee hours. He wanted to see us to our room on that scary 7th floor of Motts Children’s Hospital. We didn’t get to our room until around 11pm. My parents finally made to Ann Arbor shortly after midnight. We all held Carly. Cried and prayed.

During that time, a resident came into our room. She told us that she had just viewed the blood slide in the lab. She confirmed that we were diagnosed with AML. She went on to tell us the entire treatment plan and then she left the room. It was around 1am and my parents and Pastor Bob left too. Leaving Paul and I alone with Carly. Alone on that God fearing 7th floor. All while the dreaded diagnosis settled in.

Part 7, to be continued….

One of those days...

I had a couple of pictures to share today...but, my pic's wouldn't load onto my computer. Of course it may of had something to do with the fact that my battery was dead!

The snow is flying here in Mid Michigan. Something we haven't been blessed with much this year. Or should I say, cursed much with! The weather guy says upwards of 10-12" by tomorrow night. High winds, with gusts of 50mph are suppose to pick up later tonight. Which will cause some major drifting. YUCK!

My tickle in my throat is so much better. Funny what a few days of antibiotics will do for ya! Only problem now...my head is POUNDING!

Carly is so much better. If you follow me on Facebook, you likely saw her picture. She was sitting on her "perch" (counter top) as we call it. She sits there often. We started placing her on the counter during her chemo. Now, it's her favorite hang out spot while I'm busy in the kitchen.

Ahhh, the kitchen. A place I haven't been able to organize in the last few days. It's driving me nuts. But, honestly, who is going to stop by when everyone knows we've had the sickies??!!

As far as Carly and her sickies...she is doing so much better. Up and playing. Into EVERYTHING. Keeping my house a constant mess! One would think we had an army of 8 year olds in this house. I'm not really complaining...much! Honestly, I love the fact that she's a mover and groover. It reassures me that, over all, she's feeling pretty good. Except for the terrible cough she has. I did finally get some cough med into her last night. I gave her Delsym. Normally the cardiologist would frown on giving her cough meds. But, this cough was so awful, her doctor decided a couple of doses wasn't going to hurt. The problem of course, is getting the meds into her. She is terrible about taking meds. The only antibiotic that she takes really well is Omnicef. The taste of Omnicef is similar to that of strawberry milk. The Delsym is grape flavored and tastes equally as good as the Omnicef. Well, except that it's grape flavored!

This poor house has been so neglected since last Thursday. Guess I had better get busy, 'cuz you know, it's just another, One of those days!

All tired out.

That title pretty much sums it up. We are all tired out at our house. Carly started with a yucky nose last weekend. She felt bad last Sunday and pretty much just laid around all day. I sent her to school on Monday, because I figure a yucky nose can be dealt with. Besides, at that point a runny nose was all she was dealing with. She does really well when using tissue's, so I wasn't worried much about sending her to school.

Next comes Tuesday. She's is still dealing with a runny nose, but not as bad as I was expecting. Again, I let her go to school. I hate keeping her home from school for only a runny nose. I knew eventually, she would be missing school at some point during this week.

Wednesday as we were heading to the bus, Carly coughed a couple of times. I knew that we'd be at the doctor by Thursday. Wednesday night Carly was coughing some rather deep sounding coughs as she lay sleeping. She fell asleep on the couch about 9pm. I figured I would just sleep in the living room with her, and not disturb her by getting her up and into bed. For some reason, I couldn't sleep. It was 12:45 when I decided we were going in to bed. I propped up a couple of pillows for Carly to help avoid some coughing. I put her in bed. When I looked at the clock it was 12:56.

2am. That's when all Hell broke loose. Mind you, this Hell didn't last much more than about 15seconds. Still, it was 15seconds too long. Carly was laying between Paul and I. Yes...she does sleep in our bed a majority of the time. At 2, I had just turned over. I looked at the clock thinking it would surely read 6am, time to get up. Well, it wasn't 6am, but it was time to wake up. Carly had sat up, as she often does and leaned her head on my side. She remains in sitting position and just leans her head on my side. I did as I always do, lifted her off my side and laid her back down. Except this time things went a bit hairy. She was laying on her back, head on her pillow when she started to cry. Or so I thought. I leaned over her and realized she isn't crying. She had a look on her face of shear terror. She was yelling "ooooooooohhhhhhh". At that time noticed she had her fists clenched. I can't really describe what she was doing with her fists.. It was as if she was shaking her fists at someone. Her arms were bent at the elbows and her fists were clenched. Of course I had no idea what was going on. I started talking to her, asking her what was wrong. At that point, Paul woke up. I told him to reach over and turn on the light. Just after he did, Carly looked over at him and gave him a sign that I'm not proud of at all. Yes..she gave her dad the finger! I have no idea what the heck that whole episode was. I told Paul I thought she may have just had a seizure. He said he thought she seemed to have had a nightmare. Whatever the case, I never slept another wink the rest of the night.

Thursday morning we headed to the doctor. I told the doc about what had gone on. He said it didn't really sound like a seizure. Because it lasted no more that 15seconds. And that her body didn't contort. He did say that many times just after someone has a seizure, they wet themselves. Well, Carly did wet the bed. We realized it around 3am. We can't be sure if it happened after the episode or during. I never noticed it until an hour after the whole ordeal. The doctor was leaning more toward a night terror. Me....I think she had a seizure, but being I've never witnessed a seizure, I really can't be sure. One thing I do know....this scared the frigging HELL out of me!

Last night Carly slept fairly well. I woke to her every move. Considering the poor girl has bronchitis, a double ear infection and a nasty looking throat. Which the doc assumed was strep, but wasn't willing to put the swab in Carly's throat. His thoughts were, she's getting antibiotics regardless. Carly was able to get some much needed rest last night. Thank God, she didn't have any more episodes..

The doc told me to keep a close eye on her and if she does have another episode, she will go in for an EEG. Can I just say, I'm so tired of doctors telling me to "keep a close eye on her". That phrase itself freaks me out. And yes. I keep a very close eye on her. That's why I know for a fact, she hasn't ever had any episodes like she had the other night.

Oh, to top it off. I'm sick too. I've had this annoying cough for 2 weeks. It mainly flares up when I've been talking. So, I'm avoiding phone calls as much as possible! Anyway, the doc listened to me and told me that I'm worse sounding than Carly is. He put me on antibiotics too. Good thing he did. I woke up this morning with such a sore throat I could barely swallow.

Guess we have good reason to be all tired out!

Questions answered!

So, , , I've been getting some questions in my comments and in my email. Thought I would take a minute to answer a few.

Why not seek a second opinion regarding Carly's platelet count?
Carly's Oncologist has done every single test possible to try and get to the bottom of Carly and her platelet issue. The last test being the Ultra Sound of her spleen and liver function. Which both checked out A-okay! There are no more tests to do. As I said, we know it is not cancer. It is not due due damaged organs; such as the liver and spleen..which would have been caused by the chemo. And it has nothing to do with the functioning of the liver and spleen. ** Carly's other blood work is perfect.. well, perfect for her!**

What is ITP?
The best I can do to answer that question, since I don't really get it yet myself..is to let you read up on it yourselves. Click here. You'll likely be overloaded with information that really doesn't explain the, "why".

Aren't you a nervous wreck that her platelets will bottom out suddenly?
Well, yes I am. But, our Oncologists has told me she doubts that will happen. It could, but she doesn't expect it to. And, I know the signs to watch for. Such as Petechiae, nose bleeds, bruising - where you wouldn't typically see it on a child. Such as buttocks, upper arms, lower arms, neck, face, torso...etc. In other words, those on the knees and shins are more typical bruises for kids.

Is there any treatment for ITP?
From what I have learned thus far, yes. Mainly it is used for adults. Not in children. If her platelets did suddenly drop. Like to 10,000. She would need a platelet transfusion. Trust me, I'm still learning about this.

How did this happen (low platelets)?
Tough question. No one really knows the answer to this one. We all suspect it was due to a viral bug that Carly developed last May. It lasted for 12 days. And I mean 12 straight days, of diarrhea. Carly ended up losing just a bit over 4lbs during that bug. That's when her platelets really took a nose dive. They haven't been normal since. However, her platelets would dip down to around 107,000 & 115,000 during the months of last February '09 and November of '08. Each time, she had just been sick. So that was the doc's reasoning to both those lower than normal counts.

Will she ever recover with her platelet disorder?
Yes, she can recover her platelet disorder. Will she? We don't know. But, it is very possible. Per the Oncologist. I have read that kids do, often times get over this condition. Only time will tell. Prayers wouldn't hurt either!

Can her low platelet condition turn into cancer again?
Believe me, I asked this very question. The answer is NO! I was told that leukemia leads to low platelets. Low platelets do not lead to leukemia. We already have ruled out leukemia. Back in June when Carly had to be check via a bone marrow aspirate. The results were: 100% cancer free!

Is there anything that you need to change in your lives with this newest diagnosis?
No. We go about living life. The only real thing we need to do, is be careful with giving Carly Motrin and Advil. Although, she can have it occasionally, per the Oncologist. Otherwise. We go about our merry way. Myself..well, I need to find a bit more peace of mind with this. Other than that. Life will continue marching forward!

Medication.

UPDATE: I just got on my blog and found some weird stuff. I see duplicate pictures, that were not there before. And, they don't show up when I go in to edit them out. If that makes sense. Ha. No clue what happened. Too weird. Oh well...you get the just of if. I always look at my posts after I post them. Just to see if I made any silly errors. Those duplicates were not there then either. Hmmm. Sorry about that :o)


Carly started her life placed on medication for hypothyroidism at the age of 3 weeks. Then went on to have heart surgery at the age of 3 months.

At the age of 4 months, came home on Viagra...................one of many medications that she has taken.

The Viagra was in tablet form. I had to crush it up in a prescribed amount of water and stirred until dissolved. Giving it to her 4Xper day. Then reducing it down gradually (to wean her off it).
Not to mention, the other 6 heart related drugs that she came home on. The grand total at that time, along with Synthroid for hypothyroidism + Viagra = 8 medications a day. Various amounts given at various times throughout the day. She took them all like a champ.

SEE??? No problem.

Here she sits, taking Viagra out of a syringe. Like a champ. With no problems whatsoever. She took this stuff this for 1year & 6months.

I can only imagine, this tasted AWFUL. (I didn't taste this drug)

September 25, '04: Bam. Cancer struck. Treatments began. 26 months worth to be exact. This was the day before being discharged from Mott Children's Hospital. After our leukemia diagnosis in '04.
Handling her IV medications like a champ. Never once complaining.

Carly having her last dose of Mercaptopurine (oral chemo). In Nov '06. Again, taken like a champ. Again, giving a med to herself.

Her last Vincristine ( IV chemo) Nov '6. No problems. Ever. She would climb up in the chair, get hooked up to her port and just breeze through it. Course, it wasn't always a breeze. Chemo sucks. About as bad as cancer sucks. Some of the chemo via IV was really bad. Some made her very ill. But, she NEVER complained. She just went with the flow of things. As long as that pacifier was in her mouth!

Below, is how I dealt with all of the medications during chemo. I had to track everything she took. It was my attempt to keep my head straight. Writing each medication down. Tacking lists upon lists onto my cupboard. Checking it off each day, after giving any medication to her. It stressed me out majorly. I'm so unlike Carly...she never, ever complained.

Moving right along to '09 and '10. Carly has decided. ENOUGH MEDICATION ALREADY! She is sick and tired of medication. Who could blame the poor girl? She's had her share. And then some.

This Omnicef is very good stuff. It tastes GREAT! Carly always used to love it. She just sat, opened her mouth and down the hatch it went. In fact, she would often ask for "more".

Zithromax = Ick. According to Miss Carly. I don't think so. Neither does Paul. Yes, we do taste all of her medications. Except for the Viagra. I just couldn't bring myself to taste that stuff. We taste her medication, just so we know ourselves how good or bad tasting they really are. We don't think Zithromax tastes bad at all. Carly .... well, let's just say, it didn't go so well. It was TERRIBLE.

Thankfully, she is back on the Omnicef this go 'round. She has been doing so well with it. Until last night. Oye.... What a time I had getting 1 stinking teaspoon down her at bedtime . She has turned into a little squirrel. Holding her medication in her mouth f o r e v e r . . . Just like the squirrels store their nuts in their mouths.

The end result is something we are NOT used to around here. Tears. Lots and lots of tears. I really think Carly has simply had ENOUGH medication. Certainly enough to last her a life time. Or so she thinks. She's likely, just plain tired of it all. Although, one would think taking medication is a second nature for Carly. It's all she's ever known.

Until now. And so, I will keep giving her the medication. Much to her disliking. I'm not sure what the problem is. I can promise you, it's very stressful. I dread each time her medications are due.

Strep throat. Round 3.

Poor Carly. She has been fighting strep throat since Dec 17. On the 17th we began, Round 1 of strep throat. Carly was put on Omnicef for 10 days. She finished up that med. Acted fine. We made it through Christmas. Whew!

Along comes the 28th. Carly woke me up several times in the night complaining that her tongue and throat hurt. She wanted to go to the doctor at 4:30 in the morning! As a matter of fact, she was asking for a shot! I did get a flashlight out to look in her throat. I saw a very bright red throat, but no streaks or spots. Off we go, on the 29th, back to the doctor. Round 2, strep was back. Doc placed her on another antibiotic ~ Zithromax for 5 days.

This picture was taken on January 1. Click to enlarge and you will see just what her throat looked like while taking, Zithromax.

This picture is one of many that I was in the process of editing on Jan the 2nd. I notice something in this picture that didn't look quite right. I zoomed in. Way in. That's when I realized she had spots in her throat. Again. I nearly had a heart attack. She was acting absolutely fine.

Sunday Jan 3rd. Carly started complaining again of a sore throat. What the heck?! Jan 4th, back to the doctor we go. He was stumped. Leave it to Carly to stump all of her doctors. I found out that for some people, strep is very difficult to get rid of. Soooooo... Round 3 is here. Carly was placed back on antibiotics for 10 days. Doc put her back on Omnicef. His thoughts were, "she likely didn't get quite over it the first time around." He also said, " Zithromax did her no good whatsoever!" Ya, think?

What does all of this mean??? It means that this poor little girl hasn't even been back to school yet. I looked in her mouth last night and decided that she needed to stay home from school again today (Thursday). Her spots are nearly gone now, but she had some bright red streaks. No way am I sending her off to school. I know she is no longer contagious. How could she be? She's been on antibiotics since Dec 17th. (with the exception of a couple days between meds). I just don't like the thought of sending her off to school when she still isn't 100% Carly.

What else does it mean??? Well, it also means that her blood work will likely look like crap when we head to Ann Arbor on the 21st. Dagnabbit. Although, on a lighter note. I have not seen ANY bruises on this kid in almost 3 weeks!! She even bumped her knee yesterday while climbing on the counter. She bumped it really hard. So hard she cried her poor little eyes out. I just knew I'd find a nasty looking bruise within a couple of hours. NOTHING. NADA. ZIP!! Hopefully that means her platelets are UP and closer to normal. I know I shouldn't get my hopes up, but hey. I would really LOVE to kick off the year with some normal looking platelets! Even though I know that the likeliness of that happening isn't so likely. Especially since she's been sick since mid December. Oh well. A mom can dream. Right?

Christmas '09

Part 5

Christmas night at Grandpa and Grandma's house

Brad, not happy with this picture. He said,"Mom, it looks like I'm flipping the bird". Not to mention I caught him with a scowl on his face. Sorry..Brad, I'm posting it :o)

Carly was sooo into opening presents at this point. She'd open one and yell, "MORE"!

Aunt Sandy bought some clothes for Carly. Most of the time, Carly likes getting clothes. Not so much this year! See her checking out the tissue paper?? She was in search of "more" gifts!

She is very happy with this gift. Like all kids, the bigger the gift, the better. Or so they all seem to think.

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Poor Carly. She was back to the doctor the other day. She woke me up at 4:30am on Tuesday asking to go to the "doctor". She told me her throat and tongue hurt. When I put her to bed Monday night, I already knew we were going to be heading to the doctor come Tuesday. Carly had started to run a temp. She rarely runs a temp. Long story short, she is back on antibiotics. On the 18th she was diagnosed with Strep throat. Tuesday, her throat was red streaks and the doc said, "we're just going to treat her again". Today she is MUCH better. Back to eating and drinking like a champ.

A couple of cute stories. 1- Paul was talking to Carly last night about school. He asked her if she was ready to go back to school next week and see her friends. Carly answered, "NO. All done"
2- Ashleigh was laying on the couch the other night. Carly, like always, insisted on climbing up on top of Ashleigh. Planting herself on Ashleigh's legs. Eventually, Ashleigh's leg were stretched out over top of Carly's lap. (My crazy older two wear shorts yearly around here. Keep in mind, our wind chill has been in the teens all week.) Anyway, Carly looks at Ashleigh's knee and asked, "What's that"? Ashleigh says, "it's a scar. Want me to tell you how I got it" To which Carly replies, "No, (while shrugging her shoulders and shaking her head)" Too funny! Ashleigh and I laughed our butts off. It was like, Carly really could have care less about the nastly looking scar on her sisters knee.

School picture & stuff.

Carly had her pictures done for 1rst grade a few weeks ago. We finally got them back and much to my surprise, she had a smile on her cute little face! It's the very first school pic that she has ever smiled in. I'm not too sure what the heck she is looking at out of the corner of her eyes. No doubt, it's someone trying to get a smile out of her!


Sorry it's so grainy. I scanned it into my picture file and of course it didn't turn out as bright & crisp as the original. But you get the just of it. :o)

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I heard back from UofM. We are to follow up in February. Not sure what 'follow up' means. It could mean an appointment or just a blood draw. I'll have to call our NP to double check that.

As I was telling Paul tonight about the three month follow up for blood work (or whatever). Carly quickly pulled her shirt sleeve up to show Paul where her Wednesday labs were drawn from. She then went on to tell us that next time she wants the other arm done. After that, she let us know that she wants McDonald's after her lab work. Guess she needs something to look forward to. Silly girl.

Happy Friday all!

Lab work results.

My mom and I took Carly for her lab work yesterday afternoon. We went to a local lab. Thankfully there were no other people in the lab. Just mom, Carly, myself and 2 lab techs. Whew! I was nervous going into the lab. Fearing that everyone has the Swine flu! Even though Carly was vaccinated. I'm still leery.

Lab results are:

white count 3.3

hemoglobin 13.3

platelets 85,000

ANC 1.7

August was our last blood draw. The lab results were:

white count 3.8

hemoglobin 13.8

platelets 75,000

ANC ?? like 1.2 (cant remember)

I'm okay with these results. Of course I would much rather Carly have normal platelets, but she does not. I have to learn to live with that. The last time Carly had normal platelets was last February. Truthfully, it sucks. It's one more thing for me to worry about with her. Lord knows, I could use a break from the worrying department!

The big thing that worries me is of course, bleeding issues. It scares the crap out of me. Even though her doctors have all told me, countless times that Carly is okay. She has enough platelets to cover bleeding issues. They tell me that she could even have many major surgeries with the range that her platelets seems to be staying in. Still, I worry. I watch every bruise that Carly gets. I even ask her where she got them. She usually tells me "playground" and "climbing"! I watch them closely. They all heal up just fine.

One other thing that's a pain with low platelets. Carly can have nothing for pain/fever other than Tylenol. I'm not knocking Tylenol. It's a great drug. The problem is, it doesn't work worth beans for Miss Carly. Motrin works like a charm. All us cancer moms know. No Motrin with low platelets. Reason being, Motrin eats up the platelets. Soooo, lets just hope and pray little Miss Carly has very little need for any pain/fever reducers this winter.

For now. We sit tight. Carly will likely be getting labs drawn again in a few months. November was suppose to kick off our one year between appointments with oncology. So much for that happening. I know the doc will want to see her before a year. I also know, she will be getting several blood draws to continue monitoring her platelets. Maybe someday her platelets will go back to normal and we can get to those one year appt's. Those appt's are something that every cancer family waits so long for.

For now. I'm sitting here waiting to hear from the Oncologist. The nurse called earlier with the results, but she had not yet talked with the Doc as to what the game plan is.

Noah Biorkman.

Noah Biorkman.

Noah is 5 years old. He is one of our fellow patients at The University of Michigan's Pediatric Cancer Center. Noah is a very sick little boy. His family is grieving. Even before losing this precious little boy to an unthinkable disease. His family is grieving.

His mother was told the absolute most devastating news. Noah was dying. Noah would not live to see another Christmas. The one Holiday that nearly every single child in the world looks forward to. Noah's mom decided to throw together an early Christmas for Noah. One filled with family and love. Complete with a Christmas tree, decorations and presents.

Noah's mom asked for cards to be mailed to their little boy. Christmas cards, upon the request of Noah! Paul actually heard this request on the radio just the other night. He mentioned to me that Brandon Inge, of the Detroit Tigers was involved. I knew immediately who Paul was talking about. Brandon Inge and his wife are HUGE supporters of UofM's Pediatric Cancer Center. I knew exactly who he was talking about. I quickly jumped online to Noah's carepage. One I've followed for a long time. I realized then that I had not been getting Noah's updates (along with a whole slew of others) and so I began to read. I began to cry. This sweet little boy is losing his battle. Not fair. Not fair at all.

Please hop on over to Noah's carepage and read the latest from his mom. This outpouring of love and support for this family is going way over the lines. Way too much for his family to deal with at this time. All mom asks for is, Christmas cards sent to her son.

Please keep this wonderful family in your prayers. They are hurting, but yet, trying to put smiles on their faces and make a magical moment for their dying son.

Update.

My mom went for her appt with nephrology yesterday. She was suppose to have an ultra sound done of her kidneys. The doc said this would tell them the loss of function and if it were both or just one kidney. He suspected both, due to the results of her previous tests.

Imagine her surprise when she walked in to his office yesterday and he told her, "no need for the ultra sound, you're A-okay"! She was shocked and very happy. This specialist did another work up on her 2 weeks ago. All her levels that were very concerning (blood levels) are all NORMAL now!!! He is not concerned at all. Says she may have had a UTI going on and that may have thrown everything off. Safe to say, my 71 year old mother was doing the happy dance!


This picture is nearly 2 years old. It was taken Christmas of 2007! Sadly, my mom and I are usually snapping the pictures, so we have very few of ourselves! Which tells me, I need to snap more pictures of my parents. My mom in particular!

Thanks for your prayers. Mom's words last night were, "prayers work"!