Happy Birthday to Me!

Hello Everyone!

So those of you who know me well, you know I've always been a big fan of my birthday. In fact, every year when October First rolls around, I'll tell anyone who will listen to me "Guess what? Its my Birth Month!!" I think its been my birthday, combined with my absolute FAVORITE season, that always has me on such a high the weeks before my birthday.

This year though, the joy of the changing of the seasons and my approaching birthday has been mingled with some trepadition and sadness. This time last year all hell had broken loose. I was in between hospital admissions, unsure of my diagnosis, not sure if I would be around this time next year, and in so much pain I spent my whole day medicated and sleeping. I spent the last days of summer and the start of fall in a hospital bed having every test and procedure under the sun. I was confused, and scared, and my birthday was the last thing I cared about.

As we all know, I have come out of all this with a diagnosis (POEMS),  A brand spanking new immune system post transplant, a new hair-do (Ha!), and a prognosis with the potential for MANY more birthdays to look forward to! I'm not grumbling about turning 37 (LATE Thirties!!!) but thankful I'm here to celebrate it!

I just wanted to let you all know that while I didn't celebrate my birthday last year, I was blessed with so many gifts. The outpouring of love from our friends and family during those crazy few months and still to this day have touched me more than you will ever know. Its amazing how the people in our lives from our family and friends to family and friends OF family and friends that have stepped up to offer support in so many different ways. And all of it was and is so very appreciated. If you're reading this, then you are a part of that THANK YOU.....and I hope you all know how much I love you back!

If you're looking for a status update on me, there isn't much to say that is different from the last post. I still have the annoying bone pains and fatigue. They are still trying to tweek my medication to try and work with that. Since the POEMS also attacks the endicrine system, most of my hormones are off so thats  part of the issue. I'm still taking the chemo pills and will for the next year I've been told. None of the really nasty side effects have made a return (Blurred vision, headaches, Nueropothy) so thats good! I've started getting my immunizations and like all your newborns, I'll get a couple here and there for the next 2 years. I feel okay for the most part, I have a bad day here and there, I still feel like I'm 80 years old much of the time, (but a really cute, sassy 80 year old!) but life is pretty close to back to normal and I'm grateful for that!

I know its probably a little narcissistic, but I feel like this absolutely gorgeous fall we've been having is nature's way of making up for last year. At least for me anyway. So I'm making sure to enjoy every minute of it...its not even my birthday yet (another half an hour!) and there are 21 "Happy Birthday" wishes on my Facebook wall. How lucky am I?

I hope you're all getting a chance to enjoy it as well! Attaching a couple new pics of the kiddos. Can you believe we were SWIMMING on Columbus Day??? Love and Hugs to you all!!

xoxoxo,
Tara =0)

P.S. I updated the Blog for fall! I hope you like the new look!!

Back to School and Team Whiting!!!

Hi Everyone!!

Its been a couple months, and I'm sorry I haven't blogged sooner, but I was busy enjoying the last month of summer and then getting the kiddos all back to school! I have 3 kids in 3 different schools this year so life just got even crazier for Team Whiting if you can believe it!!

Tyler started middle school and is settling in nicely to the world of  multiple teachers, lockers, bus rides and sitting where ever he wants at lunchtime! Its so cute seeing him walk to the bus stop each morning, since we live so close to the elemenatry school he's never ridden a bus before. And while I worry a little about the bad influences the eighth graders might be on him, and if he knows how to handle a bully, etc, he seems to be thriving and is loving all the exciting things middle school has to offer. He dragged me (and Lindz and Drew) to watch a school soccer game Tuesday afternoon, and was so excited to be there cheering on his school even though he knew no one on the team! I'm so excited to watch him grow and discover all that the future holds for him, He's growing up too fast, but its an adventure I'm loving being a part of. One of my favorite parts of my day are the texts I get around 2pm from Ty on the bus ride home telling me about his day....

Lindsey is having a ball in third grade, she got the same teacher that Tyler had in third grade (whom we adored!) and she has a bunch of friends in her class. She gets "real" letter grades this year and has already promised me straight A's. I believe she can do it too....so we'll see, the challenge is on!

My little buddy Drew started pre-school this year...and while my heart breaks every morning that he skips into school as happy as can be, that he is no longer tucked away safe at home with me, I am so thrilled at how much he loves school, his teachers, and all his new friends. Like Tyler, this is a whole new world for Drew and watching him blossom and thrive in this new phase of his life is such a gift.

I'm just so proud of my babies... and so torn between wanting to freeze them where they are right now and not let them grown any more on me, and looking so forward to seeing them grow, and experience new things, and flourish!

For those wondering how I'm doing health-wise, I'm in a holding pattern right now. Not much new to report. Still on low dose chemo and will be for 6-12 months, still some struggling with fatigue and bone pains, though some days are much better than others. My blood counts/immune system is still not fully back to where it should be, though we're getting there. I'm nervous about cold/flu season since it seems one of the kiddos is ALWAYS sick from Oct-May, so I'm hoping I can avoid it as much as possible..but overall I'm doing really well and I'm sure it won't be long now until I'm totally back to normal!

And Lastly, I have one more thing to share before I sign off....Tyler's hockey team has ordered "Team Whiting" bracelets to sell to raise money for both Cancer (The Jimmy Fund) and The Crohn's and Colitis Foundation of America. They designed the bracelets to have both the light purple (general cancer awareness) and dark purple (Colitis) to represent both mine and  Lindsey's health battles this year. They are selling the bracelets for $5.00 each and will split the proceeds between the two charities in ours and the Team's Name. My family has bought ours and are proudly wearing them! (See my cute models below!) If anyone is interested in helping our team raise money for such great causes, please let me know! You can mail me a check (Made Payable to Channon Leborgne) and let me know how many bracelets you'd like and what sizes (youth and adult) and I'll be happy to mail them off to you!!

Thanks again for all your support and love!!

xoxox,
Tara :0)

Cancer Still Sucks, and some good news too!

Hey Everyone!

So its been a crazy few months since my last update...We've had lots going on in our family since I last blogged! Both my handsome little men had birthdays (4 & 11!),  Lindsey had her dance recital (she was a super star!) Tyler had an amazing baseball season (more on that later!) and we started going back to camp. Oh and Kev turned 40!  I've been enjoying my time off with the kids, and getting stronger every day.

I had a couple appointments in June with my Oncologists and Endocrinologists and got great news at both. My PET Scan had come back all clear (no new cancer lessions and the one I had was all but gone- yeah!) and my Adrenal Gland tests showed a recovery so I was able to come off the steriods (double yeah!) I left those appointments on quite the high, feeling like I had breezed through this diagnosis and could put all of this behind me and not have to deal with it anymore for hopefully a VERY long time! I guess I got a little too cocky....

The last couple months, I've started having some issues. I have some pretty significant bone/joint pain. Some days its not that bad, but other days I have to take pain medication to get through the day. Its mostly in my tailbone, knees and rib cage. On a good day I feel just a little achy, on a bad day I feel like a 90 year old  who hobbles around all creaky and slow. Its annoying, but that alone wouldn't be so bad. I can handle some aches and pains if I'm otherwise cancer free right?

I met with my Oncologist again today and had a check up. I told them about my assorted aches and pains and had my normal bloodwork tests done. My Blood Counts are slowly chugging along back to normal. I'm still in the red zones, but very close to (low) normal numbers. It won't be long now. My Liver function tests show there are still some issues, and they will continue to watch that closely. The Drs seem to think the aches and pains may be hormonal issues and when I see the Endocrinologist again in August they will re-run all those tests to determine if more hormone therapy is needed. They seem to think I might need to go back on the Steriods, that I came off them too soon.

I also got the results back from one of the last 2 outstanding "Cancer" tests we were waiting for. I had a Bone Marrow Biopsy done at my last visit in June and the results were in. While the bad plasma cells had been cut in half, there were still some hanging out in there. Unlike a Multiple Myeloma patient, whose bone marrow can have 30, 40, 50% bad plasma cells, I had initially only had less than 10% and a 50% reduction of them is great, but the fact that we have done all this work, and I can't say I'm Cancer free makes me sad.  Going into this I was told that my cancer, POEMS Syndrome, was a chronic, potentially terminal disease, that is never considered  "cured", but there are cases where people have gone on to live 10, 20+ years without having reoccurances.  I firmly believe with all my heart I will be one of those people. I will be able to say I'm currently Cancer free ...but to hear we still have more work to do to get there was a little disheartening.

So what does this mean for me?

Well, first I have to go back on Chemotherapy pills, but at low dose "matinence" levels. I'll start seeing the Drs once a month again to closely moniter my bloodwork, as this Rx can lower my already compromised blood counts.  We will repeat the bone marrow biopsy in 3 months (OUCH!) and then again in 6 months. There was talk of a second Strem Cell Transplant and new Chemo treatments if the bad Cancer cells start to increase, but I'm very hopeful it won't come to that....I know I can't get my three children to behave but damn it, these Cancer cells WILL cooperate!

Now, enough about me, I said there was some good news and there is!

Lindsey is doing AMAZING! She started her bi-monthly IV treatments for her Colitis and she is doing great! She's such a trooper with her IV's and the medicine is working wonders. She's back to the Lindsey we all know and love, feeling great, looking great and thinking she's the next Selena Gomez! I'm so thankful that things are looking up for her!!

Linds getting her IV Remicade

And Lastly, if I could make a shameless plug,Tyler is playing on a summer baseball team that is raising money for Cancer.  I'm so proud of Tyler for deciding to spend half his summer raising money for the Jimmy Fund so more research can be done to knock this awful disease out of the park!

Tyler will be involved in several fundraisers this summer (A Carwash, Tagging etc) and giving up his time to raise as much money as possible. He has also got to play summer ball against some of the best players in the region! We've had a blast at both the games and the fund raisers, but we still could use help raising the $200 he needs for his personal goal. Any donation would help and be greatly appreciated ($5, $10) and if you can donate, you can use the link here: http://www.jimmyfundevents.org/littleleague2011/tylerw

Once again, thank you all so much for all your love and support!!! I didn't get the best news today, but it could be SOOOO much worse, and so I am very grateful that I am where I am today. I love you all for keeping my spirits up and letting me know how much you love us! I'm attaching a couple new pictures of the kiddos enjoying their vacation! I hope you're enjoying the lazy days of summer with the ones you love and hope to see you soon!!

XOXOXO,
Tara =0)

I've been a bad blogger....

Hi Everyone!

So I' ve been a bad blogger....Its been a couple weeks since my last post, and that one wasn't very informative. Lindsey and I have had a lot going on these last few weeks and I was waiting until we had some answers before I shared. But now I do, so here I go....

Lets start with Linds. As some of you know, she's had another nasty flare up of her Colitis. We went back to her Dr and he did another colonoscopy to reconfirm the Colitis diagnosis and see if there had been any improvement since her October procedure. So for those keeping track thats an 8 year old having 2 colonoscopies in 6 months...poor thing! Anyway, he did state their was SOME improvement, but not enough and she was showing signs of being steriod dependent. His recommendation was to try a new course of treatment which was an IV infusion of a drug called Remicade which she would need every 8 weeks. It was a really tough decision because this drug comes with some very nasty potential side effects, but the alternative is her having to have her colon removed. We met with both her Dr and got a second opinion and they both confirmed the Remicade is the best course of treatment for her and while the possible side effects are scary, they are very rare (4 in 10,000 users) and effect mostly young or adolscent male users after 2+ years on the drug.  While I'm still losing sleep worrying about it, she did have her first infusion last week and we're already seeing an improvement with things so I'm hoping we made the right decision!

We had to go up to Dartmouth Hitchcock in Lebanon for the first treatment in case she had any reactions to the drug and they sent us to the children's oncology floor for her infusion. That was both extremly hard seeing the little kids fighting such an awful disease and also a good reminder of how much worse things could be. I can't imagine what all those parents must go through and am thankful we're not in that situation. Of course, when we walked in they took a look at me in my scarf and proceeded to try and send me to the adult infusion center. It took them a few minutes to understand we were there for Lindsey! The infusion went well though, after a little bit of fighting when the IV went in, we settled down for 4 hours and watched movies and had popcorn. It was a long day, but overall an okay experience. We have to go back in 2 weeks, then 4, and then every 8 weeks after that. Hopefully just for a year and then we can wean her off the Remicade. Lindsey's been a total trooper through it all and as usual, I'm extremely proud of her!

Now as for me, I saw my Bone Marrow Transplant Oncologist in April and he said I was doing great, some of my levels were still on the low side, but nothing too out of whack so he relesed me from his care and back to my regular oncologist. I have to admit I was very sad to be leaving his care, he was an amazing doctor and I loved him from the first visit to my last. Of course I hope never to need his services again, but I'm going to miss him. Its funny how close I feel to some of my doctors but they have made a terrible situation so much more bearable with their humor, kindness, empathy and care.

The one thing that did show up in my bloodwork was I seem to have a liver infection that isn't improving as quickly as they would like. I am on medication for it and hopefully it will clear up soon, but due to that, and my still low white blood cell levels, my Oncologist recommended I stay out of work a few more months so I can rest as much as possible and hopefully recover more quickly. I'm not arguing with that, the summer off sounds great, but I am looking forward to getting back to work and hope things continue to improve so I can go back in Sept. My immune system is still "new" and I won't get my immunizations and be off anti-viral and anti-bacterial medications for six months to a year! I didn't realize what a process this is!

As far as to where I stand Cancer-Wise....I have a Pet Scan (to rule out any new cancerous lessions or tumors), a Bone Marrow Biopsy, and a ton of bloodwork all coming up in early June so I expect I'll have better answers in a few more weeks. I feel really good except for the fatigue that never seems to go away, and some new aches and pains that while annoying don't seem too worrisome to my Drs.so hopefully they are nothing! But both of my Oncologists believe we've killed most if not all of the bad cells and I should be done all the major treatment for hopefully a very, very LONG time!

I promise to keep you all updated as I get more info, but just wanted to fill you all in on whats been going on the last couple months! On the home front, things are crazy as always! Baseball is in full swing and Ty made all star team again and we had that game on Saturday. It was a great game, they tied, and Ty did great! Lindsey is gearing up for her dance recital in June and her costumes are adorable! She also started cheer tumbling for Cheerleading and we have that every Friday night now. Hopefully she'll be a better tumbler than her Mommy who never even learned how to do a cartwheel!! And my baby Drew is all signed up for pre-school next year (sniff, sniff!) We visited the classroom and he's so excited to go. Mommy not so much. What will I do without my little guy with me in the mornings? And finally, we're opening up camp this weekend! Yippee! Can't wait for the first campfire of the season!

We hope you're all doing well and hope you're all enjoying the sun....FINALLY!

xoxo,
Tara =0)

Happy Mothers Day to All the Mean Mothers........

Hi Everyone!

I can't believe its been a month since my last post! Sorry I've been lazy...life is starting to get back to normal again. I have some updates on Lindsey and I, but I'll fill you all in on that in a couple days once I have some appointments and test results early this week. Today I just wanted to make a quick shout out to all my Mommy friends and family and wish them a Happy Mothers Day!

Believe it or not, I was called a Mean Mother today...by my 10 year old. He's at that stage in life (we all go through) where he thinks he knows everything and I'm clueless. And he thinks I do things just to be mean. We were  playing outside on this gorgeous sunny day, and a couple of kids Ty and Linds know from school come whizzing down the middle of our fairly busy street (which is a small hill) on bikes, with no helmets on, and no hands on the handlebars. Tyler and Lindsey immediatley start asking if they can ride their bikes or scooters in the road, and why do they have to wear helmets? As I tried to explain my reasoning, Tyler got aggrivated and stomping off saying I was a just a mean mom.

What I was trying to explain, was that the reasons I wouldn't let them do such a thing, was because I LOVED my kids and didn't want them falling and cracking their heads open, or getting hit by a car, or worse. I was actually saying "no" because I was a GOOD mother and I cared enough about them to try and prevent them getting hurt...but he didn't stick around to hear that. He just thinks I'm plain old mean.

I remember when I was a teenager I used to think my Mom was so mean too. Some of my friends were allowed to stay out really late at night, have boys in their rooms, drive their bikes to the drug store, or go to dance clubs. I wasn't allowed to do any of  the above and I felt like I was being treated like such a baby and couldn't understand why she was being so horrible. I swore someday when I had kids, I would be such a cool mom.

In hindsight, she was right (aren't mom's always?) and I'll be just as mean when Ty and Linds are teenagers. I'm proud to be a mean mom if it means I'm making the right decisions to protect my kids and keep them safe and healthy. Anyone can be a Mom, but it takes someone special to be a "Mean" Mom!

And to my "Mean" Mom....

For the lessons she's taught  me,
For the love and support she's always given me,
For the way she loves my kids,
For  the help she's always willing to give at the drop of a hat,
For the way she takes care of me whether I'm sick or healthy,
For being my BEST friend,
And for being so MEAN when I was growing up...


I love you!!

xoxoxox
Tara =0)

And now I'm famous in Derry Too!

Hi Everyone!

First of all...I am doing great. My only complaints this week are the constant fatigue and these crazy hot flashes. According to my Dr, this will improve, but I have to dress in layers because I go from freezing to ripping clothes off frantically because I am burning up. I've been sleeping with the windows wide open in the bedroom and poor Kevin is freezing but I can't sleep otherwise. Even Drew is refusing to sleep in my room because its too cold! But I consider myself pretty lucky I'm doing so well!

As you know, house arrest ended on Wed and I couldn't wait to get out and SHOP again! For those who know me well, you know how hard 30+ days without setting foot in a store was!! Remember the Black Friday Target ads this year? This was me Wed morning.....

But after an hour in the store, I was wiped out. My plans on shopping half the day were thwarted by how fatigued I still get. I just want my energy back. Its frustrating to have your body wimp out on you. But on my way home I stopped and Dunkin's and grabbed one of these....

Ahhhhhh, how I've missed my iced coffees too! This cheered me up and I forgot I was cranky about being tired!

But back to the title of my post....One of my Derry Mom friends posted on my wall that there was an article in the local paper about Ty's hockey team and I was mentioned. I immediately went out and grabbed a copy of the paper and found the following article....

http://www.derrynews.com/sports/x1075330713/Avalanche-skaters-honor-Derry-mom

Cool right? I've gotten a bunch of texts, emails and calls saying local friends saw this in the paper. So proud of our boys, they did such a great job!! I still wish I could have been there to witness it in person, but hopefully they will do it again next year!

So channel 7 says 84 on Monday...my fingers are crossed, I'm dying to break out the new spring clothes I bought for the kiddos this week! ;0)

And since I'm doing so well...if you want to use those prayers instead this week that the Red Sox will win a game before the all-star break, that would be nice! I have a little fan here who is getting VERY stressed out!

Hope you all are well too!

xoxoxo,
Tara

I'm Famous in Las Vegas!

Hi Everyone!

So Happy April Fools Day! Mother Nature certainly got her "joke" in on us this year didn't she? But hopefully it will melt quickly and we can officially start spring....

So I forgot to share earlier that on my first day in the hospital when I was having my PICC line inserted, a photographer from the Las Vegas Sun (their big daily paper) was doing a story on MGH and patient safety and they asked if they could take a couple pictures. I said yes, why not, it was Las Vegas and no one I knew would ever see the pictures. The photographer must have taken 100 shots, thanked me and left. I completely forgot about it until Kev mentioned it yesterday. I decided to pull up the paper and see if they ever ran my Pics and this is what I found.....

http://www.lasvegassun.com/photos/galleries/2011/mar/27/tale-two-hospitals/88170/

http://www.lasvegassun.com/photos/galleries/2011/mar/27/tale-two-hospitals/88176/

Okay, so I'm convinced the photographer hated me. Seriously? 100 pictures and this is the best you can come up with? The second one cracks me up, its like they asked a 3 year old to say "cheese!" Not sure why I'm sharing them because they are so funny, but looks like I can never show my face in Vegas! ;0)

Anyway, all kidding aside, just wanted to check in and let you all know I'm doing well, I saw my DR on Wed and my numbers looked great so he doesn't need to see me for 2 weeks! I did end up catching the cold that has been running through the family, but so far its pretty mild so they aren't doing anything for it unless it gets worse, and hopefully it will pass quickly...

As of next Wed, April 6th I can leave the house again and let me tell you how excited I am for that restriction to be lifted!! Its been a month since I've been out to a Target, the mall, a grocery store, the school, a restaurant, anywhere except 2 trips to my Mom's and my in-laws. I am going stir crazy!!! I've had to miss so many things being stuck homebound, family parties, the hockey championship game, Lindsey's first play....but its for a very good reason and I'll stop whining about it!

I'm leaving you wth a couple pictures of Lindsey in costume for the critically acclaimed play "EEE I, EEE I OOPS!" She was a chick, can you tell? The play was adorable...Kev and Roz recorded it for me so I did get to see most of it at home! Drew decided to get in on the act by donning a chick hat. Aren't they cute? =0)

Hope you all are well, hope to see you soon, and keep the well wishes coming, they are working like a charm!!

xoxoxo
Tara