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 morning...today 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.