Getting Used to our "New Normal" Part 2 Interim Maintenance

The little things people take for granted...before he was diagnosed he was SOOOOOO excited for the Sprouts near our house to open. All during his early days in the hospital he would ask if he could ever go see the new Sprouts. Finally we were confident enough to take him...with a mask! He was very happy on this day, his sister was VERY nervous! 

Our darling Eyleen got her ticket to come spend the month of January with us as soon as she heard of Thaddy's diagnosis. It was so wonderful to have her "home" with us during this time. We adore and love her so much. This was Thaddy's second big outing to Disney on Ice which was gifted to us by Candlelighters. It was nice to be out as a family enjoying ourselves. Granted we used a gallon of sanitizer to get in there. =)

January 30th...this was the second round of Erwinaise shots. Thaddy and I went alone to the clinic for the first two. I am SO glad these guys did not witness how painful they were when he wasn't expecting it. As soon as they heard how bad they hurt they wanted to come and support him. Do not let the smiles mislead you though...we were all dreading it. 

This was February 6th and also our last day of stage two consolidation. There was a blood and bone marrow drive at his school. Jamie went and gave blood and we swabbed our cheeks for the marrow registry. Thaddeus threw up tons outside while waited for Jamie. He looks happy here but he was not feeling well at all. Consolidation was not a walk in the park! 

February 11th we got the approval for Thaddeus to become a Wish Kid...something we never thought would happen. It was bitter sweet. He was very excited, but we wanted nothing more than for him to NOT qualify. 

We are so blessed by our clinic, doctors, and nurses. This is what Thaddeus sees when he goes to get his chemo...amazing. 

On February 17th we started stage three; Interim Maintenance. We had a six day hold between consolidation and it was AMAZING! It allowed him to go into this stage with an ANC of 4300. The cut off was 750 to start so he started off in good shape. This is the stage he got high dose Methotrexte. Each time we were admitted into Summerlin Hospital where the chemo would run for 24 hours, then we would begin the process of trying to flush it from his body as quickly as possible. We were so fortunate he cleared each time within 72 hours (it may have been his disco ball lol) so we were only hospitalized three nights each time (every other week for four stays). The hospital stays were rough, but when we were released it was GLORIOUS! We had our first taste of not going to the clinic everyday. As much as we love everyone down there, spending our days there was NOT fun. 

This was a trying time for me as I would spend the night in the hospital and go straight to work, then back. I am sure, not my best teaching days! I remember this moment when I surprised Christian and Juliette at Ihop where they were eating with Mema. I had probably worn this dress for three straight days, no shower...but my other babies were so happy to see me. It was hard on them. They wanted us with Thaddy (as a matter of fact, soon after this Christian made me get back to the hospital...always the protective brother!) and they tried to be so brave, but it was tough.

It is awful that our kids get this toxic sludge looking chemo from the 70's still. This giant bag went into him over 24 hours, four times. About 12 hours in he would get very sick. We knew we just had to keep pushing water and get it flushed out. 

 

Always such a good attitude! Thankfully, he got no mucositis or mouth sores which are common side effects. He stayed busy playing this Little Tykes basketball game that his Childlife Specialist always had in his room ready and waiting for him! He also would use it for weight lifting each day too. 

 

After his first hospitalization he went snowboarding for the first time. He continued to snowboard during all his weeks off. Not many kids can say they learned to snowboard during interim maintenance!

Team Thaddeus had a strong showing for the Make a Wish run. Thaddeus had been released from the hospital at 3:30 AM the morning of this race. We only had a few hours sleep before he woke up and ran this 5K...crazy yes...amazing? Absolutely!

During this stage he began to wrestle again and just be more physical and active in general. He was not accessed for a week at a time so he was finally tube and needle free which gave him more freedom. This was the stage we started getting GLIMPSES that things were going to be OK. 

 Thaddy's wonderful teacher, and my dear friend, Ms. Peacock did everything she could to keep him part of the class. The technology teacher Ms. Davis, who was also amazing, even had Skype sessions when Thaddy's class was in the lab. They went above and beyond to make sure he remained part of the class from afar.

It was so wonderful to see our old Thaddeus returning with each day. This was good for ALL of our souls the first day he put this helmet on and said, "when does football start?" We had been told in the beginning he would NEVER play again, then maybe after treatment...we kept asking certain that our boy would not only play again but play again soon...spoiler; we were right! 

He also returned to karate. He started back with privates to eliminate the exposure to germs and also so he would not have to spar. It was so good for his spirit to get back to his happy places! Mr Gurrerro is a doll and was so good for him to work with during this stage. 

February 26th we got a phone call from our beautiful Doctor Waseem that the precautionary bone marrow he did at the end of consolidation had come back 0% MRD. He did it to double check the miraculous day 29 results. I have this message saved on my phone and still listen to his wonderful words everyday. 

On March 7th his favorite Nurse Lyn shaved her head in his and other kids she treats honor. Christian also shaved his head, and Mrs. Spendlove's daughter cut her beautiful hair as well. It was amazing that they were willing to do this for our kids. We are so thankful for their caring hearts. Thaddy's hair fell out not long after this, and we have enjoyed watching his and Nurse Lyn's hair grow back together! This gal is one special lady. "Grandma Roger" was meant to walk this path with us and we love her dearly!

On March 10th Thaddeus went back to school for the first time. He went everyday he wasn't in the hospital for half days. It was the best of all worlds; he could sleep and still get math and friend time in. 

March 29th Thaddeus went back to gymnastics privates here and there. He is such a talented gymnast and we were anxious to get him back in the gym.

Just in time for our LAST High Dose Methotrexate stay, on March 31st, the sibling ban was lifted and Christian and Juliette were able to spend time with Thaddeus in the hospital. It made the last three day stay MUCH easier. 

After this stay we moved into the fourth stage of treatment : Delayed Intensification. We were fortunate that his numbers were beautiful and we were able to start with no holds.