Thursday, May 26, 2016

Welcome to Survivorship Clinic!!!!!

Today is a good day. A monumental day in my life that I never dreamed would happen... but have looked forward to so long. Funny how life is never what you expect - yet God is there and works in amazing ways. Today - my son Tristan started his first day of "Survivorship Clinic"

It was so amazing to have each new doctor and nurse practitioner welcome us to Survivorship Clinic. They just kept smiling and saying welcome! It was like we just entered the winners circle of a long long race. The race that most of you have cheered us on and encouraged us to finish! I am forever grateful for each and every one of you and how you have been there for me and my little boy!

I came home and pulled out my external hard drive to gather some pictures to share and found a treasure I had forgotten about. I had posted to my online friends every day and blogged. And I have them and all the comments printed out. Starting with the first day when I posted... Here are just a few snippets into that ...

Oct. 20, 2007
PLEASE PLEASE PLEASE PRAY FOR MY LITTLE BOY
We are in Children's Hospital where my son was just found to have Leukemia (a.l.l). We are just beside ourselves.

Oct. 22, 2007 ROMANS 8:2 and ROMANS 8:11
Tonight we wait. Tristan is going to do fine.  God is going to get us through! I know people everywhere are praying and I cannot stress how much that means to us. Thank you! 

Oct. 24, 2007
Wednesday Night...
Tristan's counts are down. His immune system needs to be over 500 or we are not allowed out in public and he has to wear a mask around others. Well... his was ... ZERO! Nada. So that means he has no immune system right now. So he really wanted to go to the playroom. Which was fine. He wore a mask. He did so well! I have pictures but the computer system is messing with me and not letting me upload to snapfish today. Bummer.

Well we went. When we came back he started flipping out about his leg hurting him. He just sobbed and sobbed crying "Kray for me mommy Kray for me" he does not say Pray. So I did. His leg hurt so much. One side effect is joint/bone pain. Well he got it in his leg. So he cried for a while and we got him some heat to put on it. A warm pack. now he is munching on goldfish crackers and happy as can be. But it was so hard to see him hurting with nothing I could do for him. He could not get tylenol because it was not time yet. 


And I read and read.. and looked through pictures... It seems like a lifetime ago!

Here are a few pictures from the beginning...






 Tristan changed in his looks every month!!! He had to take so strong of steroids that this was just two weeks apart! And then he would cycle back down again. I had two sets of clothes for him. His steroid times and his not. I felt so ashamed that the first time he changed... I cried. And I cried more because I felt awful for feeling the way I did....

 When we would be in public and he was eating three times the amount a grown man would - and people would stare - and one old lady told me it was a SHAME... I cried. Because they did not know that it was keeping my son alive! Please never judge. You do not know.
And then he would go back to normal. It was easier once the first time was over. I knew my little baby would be back again. It was not just looks but he could not sit up. If he fell over we had to get him up! It was sooooo silly sad. Broke my heart a million times over as he huffed and puffed in his little Buddha body.

And he took LOTS and lots of medicine... by mouth, by spinal fluid, by mediport... 
And the medicines made him sooo so sick.

And my friends prayed... and sent encouragement: "B>than Cancer!"
 And our dear friend Philip struggled with Tristan battling All Leukemia! What troopers they were!

And friends prayed and threw us benefits and supported my family every step of the way! We are so blessed!

... and now we are here 8 and a half years later... almost 9. years. later!...

And God is so good to us! Here he is pointing to his paperwork (I know it tells him he needs an EKG and Echo but the top! the top says "Survivorship Clinic!"
 Dr. Jean Tersak MD has been his treating Oncologist the entire time. I am super excited that she is also the Survivor Oncologist. It is fun to reminisce with her. Everyone especially likes to talk about how old Wyatt is because I got pregnant with him shortly after.

So here we are. We had a lot of educating done today. We talked about everything he had done and all the Medicines he took. What effects they will have on his future.
From Decadron that could cause Cataracts and Osteoporosis and how he will be checked for bone density at age 18. To Doxorubicin that can effect his heart. He has to get EKGs and Echos every 5 years. 
And Mercaptopurine that could make someone not have kids so his hormones will be checked at 14. 
From Asparaginase, Cytarabine, Cytoxan, Methotrexate, Thioganine and Vincristine... we talked about it all. 
From Blood tests to Neurocognitive Testing... we discussed his future. And it was good. Because we KNOW that God is in control and has had his hand on my baby so very long.

When he was first sick - my faith was strengthened by a phone call from my dad. I was still in the hospital staying with him and dad had a vision he just knew was from God. Seeing Tristan as a man. I stood on that promise and had faith. I know God has great plans for my son. I am so very thankful for the blessings we have had and where he is going to be in the future.

I am also so dearly and deeply moved thinking of each and every one of you who helped me through. I cannot express this enough! A million times over. You guys were our rock! I knew you were praying us to this day!

Thank you from the bottom of our hearts. Thank you.

Saturday, May 7, 2016

Happy Mother's Day to my Amazing Mom!

Tomorrow is Mother's Day. As I reflect back on how amazing my life has been, I have to thank the Lord for giving me the most wonderful mother a girl could ask for. Yes mom, you can print this out and hang it on your fridge next time we disagree over something ;-)

When I think of words to describe my mom - the words Selfless, Hardworking, Generous, Supportive, Beautiful (yes you are!), and Friend come to mind.

All through my life my mother has been someone I look up to and strive to be like.
When I think back on life growing up, I think of mom folding clothes on the porch at Portman Rd. I think of her leading worship at Glad Tidings Tabernacle. I think of her walking the lane and practicing her songs. I think of her walking us out the lane to the bus stop each and every morning. I think of her working nights at KMart while my dad worked days. We would drive to pick her up after work and stop and get French Fries from Burger Hut. Mom was the queen of Layaway! She Rocked that Job!

When I was in 4th Grade she became the "Lunch Lady" at Summit Twp. It was nice having your mom there... especially when you got in trouble. All the other kids got their names on the board. Not the Noullet Kids. We got sent to the Cafeteria to tell our mom what we did!!! Yeah.. that was fun.

When I was a teenager my parents worked with my Youth Group. What amazing leaders they were. There through all the growing up years, bonding with all my friends. ... Never could I complain about my mom like typical kids do. If I tried - Everyone took her side!!!

My mom was an amazing daughter to her own mother. Through all the years - my mom treated her mother with love and respect. No matter how trying the older times were - my mother cared for her with grace and compassion. Setting and example that was beautiful and I will never forget. No matter how tired she was - she gave her all to her mom. I believe mom is thanking GOD that she didn't have a cell phone back in those days though :0)  That might have been a little harder to work with! 

When I gave birth to Alyssa Jane - my mother selflessly quit her job at Summit Twp to help me stay at work by caring for her during the days. What an awesome gift she gave me.

My mom is the best grandma in the world. I hope that someday I can be exactly like her for my own kids. 

Mother Daughter Banquet at Glad Tidings Tabernacle - 1983 - This is My mom, grandma and I right there in the middle... 

Here mom is with my babies!!! She is such a beautiful grandma! 
 Finding a picture with me and mom together.. not so easy. I realized how little pictures this lady will actually get in!
 Another picture with my kids and mom... hmmmm thinking it is way time to get a new one! Perhaps tomorrow! Be ready mom!!!!
 And even with Alyssa going through her crazy hair stages - mom tries to keep an open mind and smile! ha ha ha

Mom - I love you more than you will ever know! You are amazing. You have been the best mother to Josh, Chris, Me and Eric. You have been the best Grandma to Nathan, Alyssa, Tristan, Wyatt, Adelyn and Ella. You are amazing and we love you!!!!!!!! Thank you for being our Mother!


Saturday, September 12, 2015

Alyssa is 13 this Sunday!!! And Back to School Updates.

 Well the kids are at their dad's tonight so I spent the time setting up for a little family b-day lunch for Alyssa on Sunday. It is her Golden Birthday as she will be 13 on the 13th! I cannot believe my little girl is a teenager! She is growing up so fast. Beautiful and Spunky she keeps me on my toes.
 While she tries to keep her own style with purple hair and glasses - she can't deny she is still my clone underneath. I mean just look at her smile - dare her to deny she is mine!
Everyday is a new frontier for me with this girl. I love her with all my heart. She has always been ahead of her time and knows she can do anything she puts her mind to. As we head into the teenage years I beg of all my friends and family to keep me in your prayers. I want to be the best mom I can be. I dream of Alyssa staying my best friend always... but as any mother who has survived teenagers  hears me say that - I am sure the laughing is plentiful. I know - wishful thinking right? I miss my little baby girl. I adore the women she is becoming. I hope that we weather the storms adolescents throws our way and she sees how much I love her and always have her back. And I will always try to guide her in the way of the Lord. I pray God blesses her in amazing ways on her birthday and for the coming year. Keep her close Lord and let her know how much you love her and care for her as do I! 

___________________________________________

So back to school time!!! And back to school went all of us! Scattered all over Western PA, we start early and don't all get home till dinner time! Alyssa catches her bus first with an hour and a half ride to LPPACS.  Alyssa is a Media Arts Major there and she is surrounded by talent at that school! The opportunities God has blessed her with are amazing. I can't wait to see what she does with the awesome guidance she is getting. I am also super jealous because this is my dream school!


 
Then the boys get off to PCA. We are very blessed to be back. I have a lot of sadness that last year we could not attend due to not having funds needed. Alyssa missed her 6th grade year there. I really need to pray for my heart because I too often find bitterness creeping up. Which is silly because we were blessed over and over with the times we did get to be there. And thanking Jesus to be back. But keeping it real like I usually always do - I have to shove thinking about what we missed last year down or else I could get pretty blue about it. And that is just being honest. Because I can do that. God knows how I feel anyways. Can't hide anything from him :0) Thanking Him for knowing a bigger plan than me and looking forward to the boys being back. Today was chapel. I went because I didn't have a class. I ALWAYS cry when they sing their alma mater. And of course watching those kids sing praises to our Lord is a blessing too!





And lastly - I am full time again at BC3 also doing Work Study in their IT Department. My brother said the other day - after I got home from school, helped the boys with their homework and did mine... that if he pie graphed my life - it would be 75% school work, 20% cooking and cleaning and 5% sleep. I think that is generous on the sleeping! But yes, that pretty much sums it up. 

Anyways School School School

That's what's happening here. So here's to hoping everyone gets good grades and we survive the craziness! :0)

And one more picture because I just have the sweetest boys in the world and love seeing Tristan taking Wyatt under his wing.



Sunday, May 17, 2015

Girlfriends, Gallbladders and Going back to school for everyone...

Okie dokie, figured since I was updating pictures on here - I would throw out a new post. Cuz I know you are all waiting on pins and needles to hear from me. Ha ha ha. Right... but I am waiting for cookies to bake so seemed like something to waste time doing.

Anyways... Had an amazing get away with my girlies last month. First time EVER went away just for a weekend to myself. All friends, no kids, no husbands, no drama.... except my gallbladder did not get the memo!

Beautiful ride down to Tennessee. Of course with all trips - which are lacking anything reality - you end up wishing you could move there forever and ever. Oh it would be amazing! We went to Pigeon Forge. I HIGHLY recommend that to anyone. A cabin for the weekend is like next to nothing! And the experience was so awesome.

Here half of us are:
 And here is Mountain Sunrise the cabin we rented:
7 of us girlies went down and it was amazing... until... 4 am when I was stuck in the bathroom for hours... once I got some immodium AD in the morning I felt ok again and ready to tackle all the tastes of the trip... pile in all the grease goodies and pleasures of TN and my stomach felt ON FIRE. Like I was going to die! Of course I stayed strong. First trip in MY LIFE for pure pleasure of my own... Keep strong Linda. Have another yummy goodness... BAM... I was done. fetal position on my bed. Tears streaming and feeling like my stomach was about to EXPLODE in my body. Like just drop out and burst. ... 5 am immodium wore off. Ill spare you more details. But RELIEF. Thank you Jesus! And all my nursing friends who were on this trip sent me right to a doctor when I got back.

Now I have this silly thing called SURGERY: scheduled June 6th. And not "Ross Surgery" either. The real deal - suck out my organ through tiny holes surgery. Booooooooo. I am so sad. Guess my Hida scan said my gallbladder only wants to work tops 12%. Go figure.

Anyways - gotta get that fun outta the way.

Meanwhile life moves on. I am coaching my sons soccer team. Someone tell me how with all the parents and men too - A single mom who knows nothing about soccer except I drop off my kids and let someone else coach them for an hour of my life - was the only one willing to step up and coach these 9/10 year olds? I feel like a loser of a coach but at least I am offering them the chance to play.

Then one afternoon my son Tristan comes up to me and says - "Mom, you were my teacher, my lunchlady, now my soccer coach - thank you!" And Right there. That is why I do this. He was sooooo awesome to say that to me. Now I want to run out and volunteer for it all!!! I can do it! ...  but no... lol This mama knows her limits. Never listen to them but I do know there are some. So for now - VBS sign ups, Summer Sunday School helper, Sign me up for stay away camp with Wyatt so he can go to summer camp mom and me style. Okie dokie.

I have a full plate going on. Just when one thing ends another starts. Our year of homeschool has ended. We finished up and are awaiting evaluations. Everyone is signed up to go back to school next year. God willing. My College schedule is a FULL TIME one. Eeks. What am I thinking? Oh yes, that I need to knock this out and finish. Both Boys are going back to Penn Christian Academy. They are over the moon excited to get back to their friends. I am excited for them. Wish they could have been there this year but hey - who knows why God had things be the way they were. Anyways. PLEASE keep praying - Alyssa applied to a Charter School that we are waiting on pins and needles to see if she got in. It is one we very much want her to attend. The letters get sent out end of May so soon we should know where she is going next year. I hope very much Gods plans for her include Lincoln Park. So all prayers appreciated. We will have a full fall ahead of us. Going from lazy homeschoolers to full time super school peeps, I am excited but apprehensive. Homeschooling life is soooo lazy and perfect. oh well. Time to go back into the land of the living and alarm clocks.

But first - summer! All the kidlets are planning to attend weeks away at Seneca Hills. First time for us there and very excited. We also have two vbs's lined up. My parents church and my own at Community Alliance. Gonna be a busy summer. Time to get started playing while we can!








Wednesday, February 11, 2015

Breakfast Smoothie

Need to use up some Oatmeal that you have left from a crockpot full? Want a quick breakfast/meal on the go without stopping for Drive Thru but want it to fill you up? Then look no further.
Adapted from a recipe I found online - Here is what I have fell in love with!

A Chocolate, Banana, Peanutbutter, Oatmeal Breakfast Smoothie!

First - anytime I have ripe bananas that I am not going to use fast - I slice them and put them in a container in the freezer. Then when I need to make a quick breakfast smoothie - I have bananas all ready to go!

Get out your blender - In mins, you can have a breakfast ready to take out the door.

You will need...

Half a Cup of Chilled Oatmeal
1 Tablespoon of cocoa powder
1 Tablespoon of Peanutbutter (I like Organic Natural)
Big Handfuls of Baby Spinach leaves (trust me! you won't taste them) The more you use the greener your drink so if color throws you off - start light. I can't get enough packed in there these days.
3/4 Cup of Milk of Choice - I use Vanilla Almond.
1 Frozen Banana
1 tsp. Chia Seeds

First put the Oatmeal into the Blender.
Add in the Peanut butter.
Cocoa Powder
And BLEND... Do do do do... ready to continue?
Now add in the milk... (IFFFFFFF you go for original... I like to add optionally in Agave Nectar and or Vanilla. But if you use Vanilla flavored milk skip those sweeteners)

Then some Chia Seeds... I get these little packs at walmart for 97cents! Woohoo!

And finish off with some frozen banana. About one banana.
Mix it all up...
How do you like that old $12 blender? She does the trick. Someday... Gonna need to upgrade though. But hey - No need yet.
And this recipe makes a nice mason jar full with a little to spare in a cup to sip on. I like to pop it back into the freezer for about 15 mins if I have time to thicken it up again. But if I don't its all good also! So many mornings I make this on the go! It has saved my health running through the drive through so many times! And guess what the best part is? Besides how awesomely good it tastes. It FILLS YOU UP! Did you know how amazing those little chia seeds can be? They are like magic fill your belly goodness. Who knew!? Cha cha cha Chia!

 Oh and OPTIONAL~ Sometimes I feel a little Edgy and throw in some Cinnamon.
Why not huh? Extra Heart Healthy there.


So Myfitnesspal has a nifty little recipe logger that tells me this recipe has 401 Calories so make sure you use this as a meal!!! I keep enforcing that to my kids. If you are gonna to have a smoothie you cannot have a NORMAL breakfast too! Says me! But hey... if you want to people who read my blog - that is all on you! I am not your mom ;) ENJOY!!!!
 
Nutrition Facts
Servings 1.0
Amount Per Serving
calories 401
 % Daily Value *
Total Fat 13 g 21 %
Saturated Fat 1 g 7 %
Monounsaturated Fat 5 g
Polyunsaturated Fat 3 g
Trans Fat 0 g
Cholesterol 0 mg 0 %
Sodium 160 mg 7 %
Potassium 53 mg 2 %
Total Carbohydrate 56 g 19 %
Dietary Fiber 9 g 34 %
Sugars 18 g
Protein 15 g 31 %
Vitamin A 8 %
Vitamin C 0 %
Calcium 36 %
Iron 6 %
* The Percent Daily Values are based on a 2,000 calorie diet, so your values may change depending on your calorie needs. The values here may not be 100% accurate because the recipes have not been professionally evaluated nor have they been evaluated by the U.S. FDA.