Round Three of Chemotherapy: Interim Maintenance (March 14 -April 24, 2014)

Immediately after the second round of treatment, the third round began. This round, called Interim Maintenance, brought both relief and stress. It was less invasive in terms of procedures. He only received one spinal tap this round and there was no need to extract bone marrow. I know this didn't mean too much to Jax because he sleeps like a baby right through every procedure and wakes up unbothered by the intrusive procedures. But it was nice that Meg and I did not have to watch the doctors put Jax into a abrupt sleep; going from fully awake and bursting with energy to suddenly going limp in our arms. It was becoming an unwelcome weekly routine for us, so it was nice to take some time off from that.

Round 3 brought us stress because of the chemotherapy regiment that Jax was put through. As part of Interim Maintenance, Jaxsen was subjected to increasing doses of a toxic chemotherapy drug called Methotrexate. The duration of this round was 41 days. On day one, Jax received two types of chemo, one through IV and another pushed directly into his port with a syringe. Prior to receiving the drugs, his blood counts were analyzed to make sure that his counts were high enough to handle the treatment. This happened every 10 days until the end of the cycle.  Each visit, the dosages of chemo were raised to increase the effects of the drugs, which could have also pushed Jax to the limit of his tolerance.

The doctors warned us that the progression of this round could start to have effects on Jax's energy level and could make him sick. This worried us, but it didn't seem to have any effect on our brave little man. He paced his way through the hospital visits and handled the extra meds well. The doctors said that this part of treatment can be so intense that some patients cannot make it to the end because of the increasing doses. But Jaxsen proved yet again to be a trooper, and he responded well to the increasing doses of chemotherapy. You wouldn't even know what Jaxsen was going through if you didn't already know his situation, because he acted perfectly normal for the entire 41 days.

Jax successfully made it through the entire treatment without a hiccup. The only thing that concerned us was that Jaxsen was starting to get some unexplained bruises on his legs and lower stomach. The docs quickly comforted us by telling us that symptoms like that were common during this stage because the chemo was demishinishing his supply of platelets. When platelets are low, patients tend to bleed or bruise more easily than usual. Jax also had another case of "silly legs" after his only spinal tap of the round. This time it wasn't as severe, and he only had trouble walking for a few hours. He soon regained his strength and balance and was off running around in no time. These were side effects that were welcomed, because they were far better than some of the worst case scenarios.

Another thing that we noticed during this round was that Jaxsen was becoming increasingly more sensitive about his chest. He is convinced that every time his shirt comes off, someone is going to try to access his port. It's always a struggle when it comes time for him to take off his shirt to get a bath, put on pajamas, or get dressed for the day. We have to constantly remind him that we aren't going to hurt him, and even after a few moments of gentle persuasion, he's still hesitant to let us take off his shirt. It's heartbreaking to see our sweet, little boy be so bothered by something. Especially something that is going to be a part of his life for the next 2 and a half years.

With the bad also came some good. Jax had his 3rd birthday and birthday party during this phase. His birthday fell at the beginning of his treatment and we celebrated the occasion with family. He also got to take a trip to the birthday closet at the hospital. It's basically a room filled to the brim with toys that any little boy or girl could only dream of having. Each patient gets to visit the closet on their birthday and pick out a toy. Needless to say, it was a prolonged trip filled with "I want that" and "ooh, what's that," but in the end Jax picked a nice set of small monster trucks.

Jax also took two trips during this round. The family went to New Jersey for Easter and Ocean City on the weekend after Jaxsen's birthday (which we wrote about in another blog post). Meg took Jax up to NJ to visit her family on Easter weekend because they hadn't seen him since the diagnosis and they were all anxious to give him some lovin'. On Saturday, they went to a huge Easter egg hunt that was being held at the church where Meg's Aunt Helen worked. Jaxsen quickly mastered the art of finding all of the eggs, but instead of putting the eggs inside of his basket, he opened them up, dumped the candy into his basket, and then dropped the empty egg back onto the ground. Such a stinker. The next day (Easter Sunday), they had another Easter egg hunt in Aunt Helen's backyard. Jax had a blast running around with Lia, Albina, and Maria (his 5-year-old aunt and little cousins). The visit to NJ was a short one, but Meg and Jax still had enough time to relax and catch up with their loved ones.

This round was filled with many more happy moments. It was during this round that Jaxsen was given the opportunity to paint with the elephants from the Barnum & Bailey circus. We also had a photoshoot with the amazing Jeff Will, who turned one of the photos from the shoot into a HUGE canvas that was going to be displayed at our St. Baldrick's event. However, due to some unforeseen circumstances, our canvas arrived one day AFTER the event! We were able to meet up with Jeff a few days later to get the canvas from him, and boy were we blown away! It looked amazing, and we're so thankful that Jeff chose our family to honor at the event. We will cherish that canvas for years and years to come!

Yet another happy moment was the arrival of Jaxsen's cape from Capes4Heroes. He was even given a certificate of superhero status! Capes4Heroes is an organization that sends hand-made capes to ill and disabled children to help them regain confidence and feel like superheroes. Jax was so excited to wear his new cape and go zooming around the house. Mommy and daddy both got a good workout tossing him up into the air so he could feel like he was flying. 

Although this round was tough on Jaxsen's little body, he has proven once again to be a trooper. With the support of our family, friends, and the wonderful foundations that we are a part of, we have made it through another round...all while keeping smiles on our faces!