For some reason this time it was easier to go through; we were actually again in Santa Monica: same room, same view over Santa Monica Mountains: it was very relaxing and pleasant and we got to enjoy a few beautiful sunsets that pleased all of us! Léo also didn’t get as tired from the high dose Methotrexate and didn’t loose much of his appetite this time around. The nurses were amazed! He is a little king over there, they all treat him so nicely… he is a little angel after all! 🙂 He also got to meet a 16 years old, Emily, who became his best friend! She was so sweet to him, they spent a lot of time together, playing and chatting. Charlotte also paid him a visit and spent the whole afternoon with us on Friday: it was much fun for both of them and while Léo was sleeping we got to play Uno together!

Léo cleared his chemo as fast as the first 2 times and we are hoping that he won’t get too many side effects, like last time: only a mild mucositis (which was still painful but manageable) and some butt issues… We know a bit more how to handle them and/or to prevent them, which should help. 😉

Here are a few pics of this hospitalization and former pics from the last 2 weeks. We have one more hospitalization to go and we so look forward to be finished with this phase. Then, upcoming… 3 more months of intensive chemo, pretty similar to what we went through with consolidation, but this time at least we know a bit more how things will go! 🙂

The second round of Methotrexate went very smoothly; we got transferred to UCLA Santa Monica hospital, which was way more convenient for us (we walked there: it’s only 2 blocks away!) and also more relaxing as the whole team seemed more laid-back over there. We also had a wonderful view of the Santa Monica mountains, which made our stay quite pleasant! 🙂

Léo cleared his molecule in a hurry again, but we asked if we could stay just a bit longer, hoping that he wouldn’t develop his mucositis if he received a few more hours of fluids. So far it seems to have worked out… we are keeping our fingers crossed!

His ANC is at 1700; last week it went up to 2600! We are anticipating that his counts should be similar this time around and we look forward to enjoying California sunny weather in the upcoming days!

Léo is doing great; he has a lot of energy and was so happy to leave the hospital after 3 and a half days of being hooked on to his port: he ran around all over the hospital with Charlotte when they came to pick us up!

Next step: the same in a couple of weeks, with another lumbar puncture, which means that we will be hospitalized in Westwood. If he stays on schedule, we will be done with this phase at the end of July: we are moving forward! 🙂

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. 🙂

Last Friday, as we were warned, Léo broke a fever. It wasn’t very high and it got controlled pretty quickly, which made us think that there was nothing too serious. But still, we had to get him admitted to the hospital right away and he received his antibiotics for 72h. He was really tired and not completely himself on Sunday but recovered nicely on Monday and yesterday the docs woke us up with great news: we could leave the hospital that morning and plus, Léo’s blood counts were great! He recovered very nicely and didn’t need any transfusions. A little fairy with a magic wand visited him over night: his ANC went from 90 to 400! 🙂

He is even allowed to go outside! Yesterday we stayed home most of the day (we both were tired after a rough night at the hospital… nurses woke us up pretty much every other hour!!) but at night we took him and Charlotte out for a bike ride and he had a blast! This morning I am going to take him out to see “his” fountain in our area. Then we will go to an empty park with Charlotte later on this afternoon. They both like to go there as there is grass and plenty of room to run and play!

On Monday, we will go back to clinic for a blood test. If his body is ready we will start the next course of treatment on Tuesday. We anticipate that he should be. If his ANC is high enough we will take him to the beach to enjoy the sand and the sunset before we start his rounds of hospitalizations: 4 times every other week and he will be put under for a spinal tap (and chemo in his spine) twice (once a month). He is doing this 4 times as he was originally considered as “high risk” leukemia; other kids do it only twice. Studies show that this way we lower the risk of relapse even more… so we could even do it 6 times!!! 😉

Anyway, we are off for a great week: Léo is back to himself, his appetite is back (he lost 750g in a week and should get it back just as fast!) and it feels great to see him like this! 🙂

Léo had his last dose of chemo (for this phase) this morning and he didn’t need any transfusion, which we were really happy about. However since his ANC is still really low (down to 100 again) we have to keep him inside at least one more week.

Next Tuesday we will check if he is ready for his first Maintenance period. Probably not, as it might take about 2 weeks again for his ANC to go back up. However this time the break will be welcome as we now know more about the whole process and we are confident.

We are more shooting for the first week of June instead of next week. He will be hospitalized at UCLA Mattel Hospital 4 days every 2 weeks. And hopefully between now and then he will be able to enjoy outdoor activities for a few days. 🙂

Léo is in great shape. His appetite is good, he is active again after a couple rough days last week. While I am writing, he is playing and dancing with Charlotte in the living room: a lot of energy and smiles around here! It’s great to see him like this after a rough couple months of intense chemotherapy. 🙂

One more week to go and this phase will be over…! Geez, what a roller coaster it has been! Last week Léo received a blood transfusion and we had to repeat it (blood plus platelets this time) yesterday as he was bruising again spontaneously and he was kind of weak.

This last phase of treatment was pretty nasty, but this is what the doctors were aiming for. So, we are all good! After next week we will wait until the counts go back up to start the next phase, called “Interim Maintenance”. Today we were told that each hospitalization could last from 3 to 5 days, depending on how long it will take for the molecule to get out of his body. We will have to see.

As of now, we have to be really careful since apparently a lot of kids end up being hospitalized at this time of treatment if they catch a virus. Let’s hope that again Léo will be the exception! 🙂

A few more days at home then… at the next blood test (i.e. next Tuesday) we will see if we can take him outside before we start the hospitalizations. Our little one still doesn’t seem to mind: he has fun inside too! 🙂

We went to clinic this morning and Léo was seen by his team: they all were so happy to see him in such good shape! 🙂 Today he seemed a little tired though and more cranky than usual. His blood results were: ANC back to 100 (it was 800 on Friday and we took advantage of it all weekend long, betting that his numbers would keep climbing up!) and low in red blood cells. So tomorrow we will go back to clinic for a blood transfusion, which should help with his energy level. For this week, we will be keeping the treatment schedule, i.e chemo every day; I learned to administrate it intravenously at home. It’s easy if we just forget that we are actually giving chemo to our child! But anyway, this saves us trips to clinic, which is always welcome. We are all in good spirits, as we feel like we have gone through this already and we know that Léo bounces back. The end of consolidation is coming up and in roughly 3 weeks we will start the first maintenance stage: yeah! 😉 In the meantime, we will keep our little one safe at home.

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We got good news this morning! Léo’s blood counts are back up and we can keep moving forward: what a relief! His ANC is 800 and the rest of his counts are great: platelets and red cells, no need for transfusion and/or bone marrow biopsy. It seems like our little one keeps making good healthy cells. GO, Loulou!!! 🙂

Tomorrow we will be starting the last 2 weeks of “consolidation”. We know that Léo went through it smoothly the first time, so we hope that he will feel just as good this second time around!

And best of all, the counts will keep climbing up, so we can enjoy sunny California for a good 10 days! We already took advantage of it this morning, and of course Léo LOVED it!