We gladly went out of the hospital last week without foreseeing what was coming… Léo developed a nasty side effect from the high dose methotrexate on Monday afternoon: a kind of mucositis, which left him with aphtous lesions all over his mouth and down his throat… he was unable to eat or drink and had trouble breathing and sleeping. That was intense! 🙁 We had to go to clinic to rehydrate him intravenously on Tuesday as an emergency and thank God I knew he needed to be helped, as we were told to only come back in 2 weeks for the hospitalization!

He didn’t have much appetite until Thursday, which left us really puzzled and stressed about the whole process. But all together (now that we are reassured!) he actually recovered fairly fast and is now back to normal! Little ones really bounce back up… 🙂

What a stressful week, but we now know what to expect as he might react the same way at the next hospital stay. We will find out on Tuesday whether his body is ready to receive the next dose. If so, we will be back on Thursday all the way through Monday and maybe Tuesday if he is in heavy pain again. Let’s hope for the best! 🙂

We are back from the hospital! 🙂 In fact we ended up staying only a few days (4 all together) for this first step of Interim Maintenance. We got admitted on Thursday as Leo’s blood counts magically climbed back up, from 0 to 700 overnight! Like last time… The head of the department at the hospital told us that it’s his way to react to treatment. Léo is apparently unique in this matter: he goes down completely (to zero most of the time!), but doesn’t get sick and then climbs back up beautifully, very fast and very high. This is a sign that his bone marrow is in great shape. So, we’ll take that! 😉

Anyway, this first step of maintenance was very impressive as Léo had to receive high dose chemo constantly for 24h and then had to be on fluids to clear it up. His electrolytes were tested regularly and the goal was met after 48h, which was again very fast. Apparently he has a very fast metabolism. Léo as usual was very cooperative and patient. We even had to poke him twice (without anesthesia!) as the needle in his port got disconnected a couple times… he was the one informing us that something was wrong, which I found amazing! He was very brave, even if he obviously didn’t like it! 🙁

For the upcoming scheduled hospitalizations, we can expect him to do the same thing. We will see if he is ready in 2 weeks. We are scheduled for the 29th of June and we are planning to spend a 3 days weekend at the hospital. Most of the kids don’t go neutropenic but of course Léo may be the exception and if he is, we will have to wait until his blood counts are high enough to be able to keep going. So, we will see! In any case, it is a good feeling to be able to finally project ourselves a little bit for a few weeks!

Léo is a little tired from the whole process, he is a bit nauseous from time to time and doesn’t have much appetite. We feared a fever today but it didn’t break, even if he has a little sore throat. Hopefully his appetite will be better tomorrow. We talked to the doctors and it’s all to be expected so far… It looks like this phase will be a little easier than the last few months. Hopefully Léo’s blood counts will stay high enough so that we can enjoy the summer!

We are still waiting for Léo’s blood counts to go back up… this seems to have become a leitmotif! 🙂 On Monday we were really surprised as his ANC was back down to 100! When we left the hospital last week they told us his counts would keep climbing up, so we took him outside every day and over the weekend: bike ride to the beach, play in the yard at his former preschool… he had so much fun! 🙂 And yesterday when we drew blood back at clinic his ANC was still at 100. We guess that he is fighting his little bottom problem on his own. Oh well, it’ll go back up! The rest of his blood counts are excellent.

We will check again on Monday. If his ANC is at 750 or above, he will get admitted in the afternoon and we can start treatment on Tuesday. The sooner we start the quicker it’ll be over! 😉

He is in a good mood, we keep him at home but he is playful, happy and hungry. It seems like he got his weight back. 🙂