Friday, October 30, 2015

Weekly Goals

-Read two books this week.
-Listen to a Podcast a day 
-Workout 4X 
-Drink 101.4 oz of water a day.


-Spa Night
-Pizza and movie night

-Family Bible Night on Sunday

-Complete She Reads Truth/Women Living Well study daily
-Write in gratitude/prayer/happiness journal daily
-Attend church service
-Find a church group as a family that works
-Draw  circle 40 days of prayer challenge

-Next two challenges in 31 days to a clutter free home (got to keep plugging away at this!) 1.downstairs bathroom 2. Downstairs closet

-Set up Hoover dam field trip
-Grades, Intervention logs, and lesson plans by Wednesday
-Study Island set up
-Khan Academy

Sports/Kids Activities:
-Girl Scouts

-Camp applications sent
-Pick up Candlelighter books for class
-boy/girl of year and gold campaign ideas sent

Wednesday, October 28, 2015

World Wildlife Federation Species Adoptions

This year my class did informative papers on an animal of their choice. As the concluding activity we adopted a class pet through the World Wildlife Federation's species adoption program. We read about all the choices (a TON!) and voted on our class pet. We chose the African Wild Dog. For a $55 donation we got an adoption certificate, species information card and picture, a bag, and an ADORABLE African Wild Dog plush animal! So soft and cuddly. My class (and daughter!) love having him in class. 

Give a gift that will help protect the future of nature. Your symbolic adoption supports WWF's global efforts to protect wild animals and their habitats.

Go to this website to check it out and adopt your own animal:

Sunday, October 25, 2015

Thaddy's One Year Cancerversary Celebration

This was the first thing we saw on October 22nd...the anniversary of Thaddeus' leukemia diagnosis. This was such a nice way to start Thaddeus Thursday. 
Our amazing principal Mrs. Young planned a whole day of festivities to celebrate Thaddeus' cancerversary. She had breakfast ready, with balloons and decorations. We spent an hour before school surrounded by people who have been by us every step of the way this past year as we adjust to our new normal as a family dealing with childhood cancer. Such a blessing each of them are! She has been amazing as his principal. She makes him feel so special and loved. I hope all kids going through this are so blessed by their child's schools.

Later that night we headed to HardKore ParKour Las Vegas. This is one of Thaddeus' very favorite places. He so looked forward to coming here after his diagnosis. It was a happy day the first time he was well enough to come play again. The owner generously allowed us to have his party here and donated the $10 entry fee to Thaddy's charity of choice Light of the World. 42 kids came so that will be a donation of $420! 
We were so thankful to be surrounded by our friends and family on this night. We had decided to redeem this day...this awful day and fight for it to be turned into a joyful day. Next year on October 22nd we will be remembering how loved we felt and all the happiness we had on this day, not the fear and sadness from last year, 
There was someone from EVERY aspect of our lives represented. We said that the people here today, a year in, were in it for the long haul! This leukemia battle is at the least a 3.5 year walk. These people are the ones that have been with us and continue to hold up our arms when we tire and give us strength on the hard days. 

One special person was Andrew who flew in for the day. He is so special to us and he made the day even more special to have him part of it. 
Let me encourage you to CELEBRATE these days. These hard anniversaries. Redeem them with love and joy. Do not let even one day be claimed by cancer. It can have nothing from us. We are so thankful for all the messages we got, the people who were with us in spirit, the ones who took time out of their day to CELEBRATE with us... Cancer has not won this battle for Thaddy. We are all the winners because we get to watch him BEAT this thing called leukemia and we will all be made better, live and love better, because of him. 

Saturday, October 17, 2015

Maintenance, Finally! Part 4

For his birthday, June 17th, he was ending the toughest part of treatment,Delayed Intensification. Though he did amazing, on his birthday his immune system was a little lower than we like so we had to postpone his birthday party. The Bishop Gorman football team heard this news and showed up in force to play with him. Not every kid gets to spend his 8th birthday with one of the best (now THE best) football teams in the nation! What amazing boys they are!
June 19th Thaddeus had decided he did not want any gifts for his birthday; he wanted to make blessing bags for the homeless. He made a list of items he wanted to include and then asked people to donate for his bags. One thing you will notice about your kids with cancer is their hearts increase ten fold. They are VERY different from other kids their age. They see needs in the world and want to do something to help. They KNOW suffering and fear and want to help other people in any way they can. In short, they turn into superheroes! 
June 22nd day one of maintenance! The day we thought would never come! His blood counts were all on the rise and everything looked great to start maintenance with no holds. In the whole course of frontline treatment we only had two short holds of a few days. His body held up so well during these tough nine months. Maintenance will go three years from our first hospitalization for Interim Maintenance. So that means our end of treatment date is March 17, 2018. Until then we will be on 84 day cycles that will repeat. Nightly he takes a chemo called Mercaptopurine, weekly he takes Methotrexate pills, monthly he gets accessed and Vincristine in his port and steroids, and every three months he gets a lumbar puncture with brain and spine Methotrexate chemo. We are by NO MEANS done...but we are only at the clinic ONCE a month. It is SOOO much easier. Some pills at night? You can almost forget what is happening when you only have to remember at night when it is pill taking time or one time a month at the clinic. We still devote so much time to his diet and hydration, but like we tell him that is life now. We feel his body was susceptible to a primary cancer so of course it will be susceptible to a secondary one or relapse. He has to change the chemistry of his body so cancer cannot survive and thrive there. 
June 23rd he was out with his football team for the first day of summer training...our hearts were so full of gratitude that he was able to get out there with his boys. His team would play flag football with themselves all summer with the hope Thaddeus would be well enough to play tackle football in the Fall...and he was =)
June 25th was the end of basketball season pool party. He had a beautiful day enjoying the sun and swim with his friends. 
June 26th we finally had his postponed birthday party. These boys were with him through it all! We had an amazing time celebrating our "Cupcake" turning 8. Be prepared for some emotions at birthdays. They are not just the passing of time now...they are much more. They are a GIFT. Another year to hug and kiss our sweet babies. So many do not get that and we can NEVER take them for granted again.

Thaddeus' favorite nurse Lyn was able to come after work to join in the celebration. She is not only our nurse, she is our family. We are so thankful to have had her by our side! We love and adore her!
July: We were able to go to Florida to The Lighthouse Family Retreat in Destin, Florida...Absolutely amazing! (I wrote a whole post dedicated to our week here) 
He is so tough and strong. His heart is so big and he just WANTS to live big so badly. He truly is amazing.
One good thing that comes from this journey is the people you meet. I would NEVER have met this sweet, little lady and her family. They are one of the gifts I can say this has given us. Sometimes it is hard to find the good in all of this and sometimes it is easy. Love her and her girls!
After we left the Retreat we went to Disneyworld for Thaddeus' Make A Wish trip! So fun (a post is coming about this!) We were gone for two and a half weeks. We had a wonderful time. We needed the break and it came at the perfect time for us. Thaddeus' counts were great and our spirits needed the time spent on just having fun. Many people thought the beginning of maintenance was not a good time for this big of a trip (away from our doctor, hospital, home, etc) but we thought it was JUST what we needed! We were so careful about hydration, rest, and nutrition; and he did great!! We were very fortunate to just have wonderful memories to bring home with us! 
August: We got back just in time to start getting ready for school. Thaddeus only was able to attend full time for a bit of his first grade year and he was excited to get back into the swing of things for second grade. Juliette and Christian have always been homeschooled, but with me going full time teaching this year we all are going full time to school. Being homeschooled last year was such a blessing because the kids were all home together last year, but it is a perfect time for them all to go to school now. We have had a great start to the school year and could not be happier! Again, it meant so much to see him walk in to school the first day. One of those things I could just not take for granted. I KNEW of so many kids that were home sick, or in the midst of treatment. Any time I hear kids talking about not wanting to go to school I have to bite my tongue! It is a BLESSING to be well enough to go...make the most of it! 
In maintenance, I can tell you that Thaddeus does not have many limitations. He is back to ALL of his pre-leukemia activities (which is a LOT!) He is back at rock climbing, tackle football, wrestling, hockey, ballet, karate, gymnastics... He has not lost a step either. In the beginning his flexibility and balance was lacking but it all has quickly returned. We attribute a lot of that to the fact he kept his activity level up so high during treatment. 

Tate Martell, the quarterback for the Bishop Gorman High School football team, has gone ABOVE and BEYOND for our baby. He spends weekends with him, attends Thaddeus' football games, invites him to his games, texts him. It has been amazing. Again, one of those little gifts this life has given us. 
September was our first Childhood Cancer Awareness Month as a family effected by childhood cancer. Next year expect to be BOMBARDED with Gold...we will be ready to spread awareness. 
September 2015 this happened...our baby returned to his spot on the Red Eagle 10 and under (even though he is only 8) tackle football team. He has amazing talent and we are so thankful he is able to continue to play and excel as a football player during treatment. These boys are like his brothers. His heart is happiest when he is playing with these kids. We know so many who cannot follow their dreams on treatment and we do not take it lightly that he has been able to. We hope he can show though that it CAN be done and maybe inspire another little football player someday that gets the diagnosis of leukemia. Someday when someone tells a little guy that they can't play football because they have cancer, they can say, "Thaddeus Thatcher did it and so can I!" 
We were able to have our feet in both the Pacific and Atlantic in a months time. When you see the ocean, or the stars and you see what God created and keeps in balance you KNOW that He can handle this...our lives, and fears. Our family has become much closer and we are in this together. This little team here can get through anything! They will have such a bond forever. I love them all so much and am so proud of how each of them has handled this. 
We couldn't be happier with how treatments have gone so far, except to have not had to do it at all! It has not been easy. It is hard and scary, and sad...I would be lying if I said I did not cry most days. Cry for my son, our family, the babies we know fighting, the angels we know and their has opened our eyes to a whole world of suffering we didn't want to know existed. We are here now though and we have to honor this life and our knowledge by sharing our story. We hope it can help someone some day. We hope it can help people who have a child that is diagnosed with leukemia, or help someone who just needs to know you can do TOUGH things, you can get through SCARY things, you can move past SADNESS and LIVE. FIGHT for your joy, it does not always come easily. Thaddeus is a testimony that if you fight for your joy you will find it even in the darkest of times; find the light and run to it and keep it in front of you.

Wednesday, October 14, 2015

Delayed Intensification Part 3

From the time I started reading about treatment, I was worried about Delayed Intensification.

It always loomed in the back of my mind. Thaddy had had a relatively easy time in induction, consolidation, and interim maintenance, but people loved to say we would NOT escape delayed intensification unscathed. 

April 3rd we had an echocardiogram during his last hospital stay for high dose methotrexate and got the good news that Thaddeus' heart looked amazing still. So he got the all clear to start the next challenging stage of chemo. 

On April 10th Thaddeus was back to homeschool PE classes. I love this picture; so much love between these two!

April 11th he played his first basketball game. Nobody would ever have known he was going through anything. He scored more points than anyone else on his team!
April 12th he went to the Clark County Fair. He rode every ride and had a blast. It was so nice to have some normal days before we started DI. 
On April 15th we began the fourth stage, Delayed Intensification, with no delays. This stage was very hard with five day a week clinic visits for very hard chemo. It is exhausting enough just GOING to the clinic everyday, let alone getting CHEMO everyday.

Our FB update as we began this stage;
Today we start stage four of treatment which is called Delayed Intensification. It is a 68 day protocol. By all accounts it's not the funnest stage but we know that doesn't have to be Thaddy's story. Please stop and say a prayer for him this at 11 he will have his lumbar puncture with the brain and spine chemo, plus two other chemos and start a round of steroids. One of the chemos is the one that has the ability to damage his heart so please say an extra prayer for it to not be effected. Also, pray for his nerves to not be effected by the vincristine, and his bones to withstand the steroids. We have enjoyed our break but the quicker we get this stage over with the quicker we get to maintenance in June (nightly pills and only monthly chemo in the clinic). We know God is walking alongside us and will give us the strength to get through. If only we as parents could be more like Thaddeus...he greets each day with a smile (even after fasting for 24 hours which is very hard for him) and never worried about what tomorrow brings (unless it's an erwinase shot). His attitude is nothing short of a gift from God. It makes it a lot easier on us! Prayers so needed and appreciated!
April 29th:
Band aids on both legs from nasty Erwinaise shots, red chemo being dripped into his port after he already got another chemo, going on hour 3 at the clinic...and he's smiling and happy. He is truly amazing! Makes this OK for my heart because of his spirit. So thankful he's so tough! All those years pushing him to become the athlete he is; the wrestler, football player...has paid off. This is just another challenge to be conquered for him. Prayers appreciated for his heart, his tummy, his bones, nerves and for a peaceful mind on this round of steroids starting today.  Now say a prayer of thanksgiving if your child is healthy and go give them a hug and kiss!
Giving his "port a cat" chemo. Regularly, little treats showed up in the mail and brightened his day. His knowledge and conversation while playing with this kit was sadly, amazing. All of this is stuff you would NEVER want your kids to know existed ANYWHERE in the world, let alone in their own world.

May 2nd he went to Pole Position to race some cars...this was a tougher day as he was feeling the steroids pretty heavily here. We also were just noticing (but trying to ignore) the fact that his hair was starting to fall out.
Back being Doctor Thaddeus...his play had certainly changed. Here his cat was getting a lumbar puncture. 
May 6th was superhero day at our clinic...We said it then, and I will say it again these ladies are OUR superheroes! 

On the way home we stopped and got the rest of his goalie gear. This was when his hair started coming out in clumps. It was perfect timing though as he was SOOOOO happy about his gear. He couldn't be bothered with something silly like hair.

May 8th Thaddy got up at 6am to go with Christian for a private hockey lesson. He had not done this since the weekend before he was diagnosed. He barely had any hair left at this point. It was amazing how quick it went. All three boys went upstairs and shaved their heads bald together this night.
And this was the morning of May 9th...this was what I had been dreading. I could not be more thankful than I was that I had eight months to prepare for this. He was no longer flying under the radar; everywhere we went people KNEW what was going on. That was tough. 

Afternoon of May 9th he played the first basketball game bald. The kids treated him different for all of five minutes. They quickly saw that yes, he had cancer, and he was still going to kick their butts! =)
Evening of May 9th he was an Honored Hero at the Leukemia and Lymphoma Society Gala. It was an honor and we had a great time dressing up, but he did not feel good towards the end of the night and we had to cut the evening short. The life of a cancer fighter; there are highs and lows in the same night.
May 12th he was still able to sing with his class in his grade level music performance. He amazed us at how he kept going through this very tough stage. You can see that he does not feel great. It again is a testimony to his spirit. We felt strongly that the more life he could LIVE during this stage, the less this cancer would be able to take from him. Whenever he felt like doing something we supported him and encouraged him to participate.
May 13th was his Make a Wish wish reveal at Gorman. Wow, is all that can be said! This day was amazing. He felt so loved. He had a low grade fever and we were SO worried he would not be able to participate. I am so glad it worked out where he could. It started a relationship with the Gorman football team that has been so beautiful.

May 15th he got to enjoy a picnic with his class. Even though he could not attend school full time, he went most days for math and recess. His friends did not even blink when he lost his hair, or when he was accessed, because they had been on the journey with him the whole time! Never underestimate the value of friends. 
May 18th we started the second stage of DI with a lumbar puncture and more chemo. He had done so well with four day a week chemo, tough chemos, in this stage. Chemos that you have to have your heart checked before you take them to make sure you're strong enough to take them. If you are reading this and you are worried about DI like I was...have heart. It was NOT easy, but I hope you can see from what my baby did that it is not a given it will be unbearable.

This sight NEVER gets any easier... Also, as parents we were CONSTANTLY researching. We became T cell leukemia experts. We did not just go along with ANYTHING (thank God we got the oncologist we have. He listens to us, researches with us, and allows us to have input into Thaddeus' care) just because it was "how things were done." We had some hard choices...we refused radiation in the beginning because we found research to support that it would not be needed or necessary. We also followed our gut and our research to refuse the Nelarabine that was to be given in this stage. We have since been reassured by the fact that standard protocol in cases like Thaddy's will not include these things in the future. This is what is hard. They do not KNOW what will keep this cancer away. They try these things that have awful side effects, and then later find it was unnecessary. We pushed math the whole frontline because Nelarabine (which Thaddy did have in consolidation) was supposed to hinder his ability to reason. He went to Mathnasium many times as week (five days a week all summer) and did math at home to counter this and we see minimal side effects in this area. We made the choice to refuse any more of this chemo though after we saw preliminary findings it was unneccesary...these are very hard choices to make though. Because IF he were to relapse that would be on us. But, we research all of our choices and feel like they are in the best interest of our child. Being a Dad and Momcologist can be very stressful
May 19th he was happy to support another boy who is battling leukemia when he went to the clinic (and he actually saw him at the clinic!) Cancer warriors learn to love other warriors, share in their struggles and triumphs, from afar. He has about 15 kids he asks about regularly even though he has not met most of them. Really only they know what each other is experiencing. We are only walking alongside of them offering support. 
May 22nd he played basketball with his school classmates. He was still having karate privates all through DI too. After this he actually even went to Gravady, a local American Ninja Warrior place he loves. We were very diligent with hand washing and hydration and even though he was not confined to home during this tough stage he was monitored heavily by us. He did not become neutropenic (low immune system) until the last days of DI so we felt no reason to restrict him unless he did not feel up to doing anything. He amazed us by having only ONE down day through the whole stage, when his blood was low. Amazing...
May 29th he attended his school field day. He played the whole time with his class and then we left and went straight to the clinic for chemo. He was accessed (needle in his port) but by this time he was able to manage himself well and keep it protected even while competing in field day activities. Again, maybe it sounds crazy...but his soul needed to participate in these things. His body was able and we were not willing to let life pass him by. We were very careful, but allowed him to do what he felt he was able to. 
We left field day and headed straight for the clinic. Our nurses are amazing and let the kids take charge of their own care as much as possible. The cannot give chemo or Heparine but they can flush their lines, draw their blood, and check their labels. I think it gives them a feeling of control over a situation they could easily feel like they have no control over at all. 

May 31st he went to Wet N Wild. He felt great this day, his counts were good, and he had not been accessed for 48 hours, so we thought why not? We did not stay long, made sure he drank TONS of water...and guess what? He had a blast.
BUT, a few days later on June 2nd, his blood was a little low and he got his first blood transfusion since the first weeks of being diagnosed. We had been expecting many transfusions in this stage and this was it! They will consider transfusing under 8.0 and Thaddy was 8.0 exactly...but he does not do good with low blood. When we were in getting filled up I was talking to another mom who's son was in the 6's! He probably could have gone without this one, but as he had not gotten many at all we were happy to have it. He felt so much better right away. Low blood gave him a headache, made him VERY pale, and made him tired. He had company while he got the transfusion. They take about 7 hours from beginning to release so it was nice to have the entertainment. 
June 5th he started his LAST round of Erwinaise shots. This picture was right before he got the first two of the final twelve. Five more visits and he was DONE with them forever...that was the BEST day!
June 7th we were at our happy place the JW Marriott pool. Truly, he is amazing. 
June 8th he went to hockey camp all week in the morning and then left camp to go get chemo. Can you tell yet that he is a total superhero?

June 12th was our LAST day of DI. This was where we got our map to maintenance. It was SUCH a celebration. There were days it felt like we would NEVER get there. But we did. We started maintenance two days later.