Léo has been great ever since he started maintenance: completely back to himself, such a joy to see him like this! We went out to Joshua Tree National Park this weekend, our first little getaway of the year: it was much appreciated by the whole family! Léo couldn’t hold himself: “I love the desert, it’s SO fun!”. We looked for Jack rabbits and big horn sheeps, but couldn’t find any… still, we enjoyed hiking and Léo walked pretty much all the way to an oasis, which was a hike of 3 miles! He didn’t want to be carried, or even being helped walking on the rocks: he was just happily zooming ahead with Charlotte, like you will see on these pics!

Today Léo’s ANC was at 1,100, which is great. We are aware that his counts may drop at some point, but there is no new restriction and we can keep enjoying the outdoors! He goes to the park or the beach pretty much every day and he is curious about any kind of food… even salad!!! 😉

Maintenance is still heavy in a way since he has to take a lot of medications orally, but he is taking them pretty easily, which helps a lot! Next step is the Tuesday following Thanksgiving: Vincristin + LP and chemo in the spine, followed by 5 days of steroids. We will make it through! 🙂

Well, maintenance started this morning; Leo was ready, his ANC was at 1,000. He did very well this morning, like usual. We then started the rest of the medications tonight: there is quite a bunch, it’s pretty impressive… a long road is ahead of us and we will follow it slowly but surely, always hoping that we truly beat these freakin’ cells!

Léo had so much fun at Halloween with Charlotte. They were so cute, so happy to look for the lights and ring the bells of these gorgeous houses north of Montana. We chose a more quiet street and were among the first kids trick or treating; it was much fun and their bags were so full of chocolate and candies! 😉 It felt really good to hear their happy and energetic little voices saying out loud “Trick or Treat”! 🙂

It’s really moving to watch Léo being so happy rediscovering life; he is just so excited about everything! Next week we will take our first trip of the year, just for a couple days, in the desert of Palm Springs: we so look forward to it! 😉

Every day we take a step forward to a more normal life and we are thrilled to be able to go to places again! Sunday we will also take them to the science museum at USC: it’ll be fun too! 🙂

So, we are still waiting for Leo to be ready; he is doing very well and we went to the pumpkin patch on Saturday: he and Charlotte had a blast over there, especially in the jumpy! 🙂 This was our first taste of a more normal life and it felt great!

We will test him again on Thursday and probably start maintenance on Friday. In the meantime we will enjoy the week! 🙂

We found a very nicely decorated street close by that will be just fine for Trick or Treating and not too crowded. We all look forward to it! 😉

Since our little one was still neutropenic yesterday we didn’t start maintenance. He was also borderline for a transfusion, but they let his body recover on its own (his cells were on the way up), which we were happy about. We will test him again next Monday to see if we can start next Tuesday. It may even take 2 more weeks, we will see, and in the meantime we appreciate this little chemo break before we start the upcoming months of treatment.

It will certainly be lighter, but still Léo will be on chemo every single day. His protocol is based on a three month cycle: oral chemo everyday, methotrexate orally once a week. Finally, two months out of three he will have vincristine (I.V.) and a lumbar puncture + chemo in the spine. We will repeat it 4 times and then the following year it’ll be a little lighter. We will just have to find the right time to give him his oral chemo, as it has to be taken on an empty stomach… we will figure it out and we will get used to all this. It is a huge relief to have the intensive part behind us and of course we hope it worked and that these cells will never show up again.

Léo is in great shape; he is very active, plays, laughs a lot and he looks forward to Halloween! 😉 We will go to the pumpkin patch as soon as his counts are up, which should be right on time for us to carve a Jack-O-lantern! He had a lot of fun at Charlotte’s birthday last Saturday and he looks forward to seeing his own little friends again soon. A few playdates are already planned! 🙂

Oh, what a GREAT feeling: we are DONE with the intensive part of treatment!!! 🙂 🙂 🙂 and more 🙂 ! Leo is doing very well; we are waiting for his blood counts to see when we can start maintenance and if he needs another blood transfusion. But in any case he will be able to be on a regular diet very soon and go outside pretty much when he wants to, we won’t have to keep him away from other kids anymore. We will have to wait about 3 months for him to be stable in maintenance though. We will see how he does! In any case he did great all these past few months; we heard this morning that most kids repeat this very last phase… but no need for our little one! Yeah-yeah-yeah!!!!! 🙂 🙂

Today I asked him what he would like to eat: “carrots and raspberries”! Well, we will do a feast soon! 😉 And… he can go trick or treating! We’ll just plan to do it early this year to avoid crowds. Our little spider man will enjoy it! 😉

So, Leo ended up having his transfusion today along with platelets as his numbers dropped down to 20,000 over night, along with his ANC (700!). Everything went very smoothly; it was just another 4 hours at the hospital. His favorite nurse (Lorraine) had a few activities ready for him: it was so sweet and it kept him busy. Leo played with play dough, drew quite a bit, “read” stories and watched a bit of a dinosaur story. He fell asleep on the way back home until 4pm and then he was… FULL of energy! What a boost that he got; his donor was probably a marathon runner !!! 😉 We took him outside tonight for a bike ride as he will probably be neutropenic starting tomorrow. He was so thrilled and saw a couple of fire engines, a few crows and small details on the floor and elsewhere that made his day! 🙂

No more hospital until next week… and this one will be very light: just a “push”, his last dose of chemo for this phase (the one that he will actually get once a month while in maintenance).

We simply feel lighter and lighter!

Today everything was poorly organized at clinic (too many sick kids at the same time!) and we had to wait until 11:30 am for Leo to get his chemo and that had to run over 2 hours. In the meantime we got his blood results: ANC surprisingly was at 1,100 and his Hg down to 7.2 again. We will go back for a transfusion tomorrow morning at 9 am, as they couldn’t get it ready on time for today; oh well, it seems like it was enough hospital anyway! This time everything will be ready for him and we won’t have to wait. He might also get platelets as his level was pretty low; we will test him again in the morning and we will go from there.

We were told this morning that 50% of kids end up starting the maintenance phase just a week after they are done with this very last phase, and since Leo recovered so well so fast we might be starting on the 23d of October! Then we will be able to bring him along to do the groceries, take trips the park and even to the library if it’s not too crowded… we look forward to it, and I think he will readjust to all this very fast! 🙂

We just came back from clinic and Leo is taking his nap; when he wakes up we will take him outside: a nice unexpected break for a few days before he becomes neutropenic again over the weekend! Still, just a couple more weeks to go…

We are scheduled for the last strong chemo session tomorrow morning: yeaaaaahhhhhhh! Leo may need another transfusion, we will see… he is energetic though, just a little pale. Last Friday we had to go to the hospital on an emergency basis for rehydration. Leo was so nauseous, he just couldn’t eat or drink anything; we saw it coming and were able to make it on time before getting worried about it. It was quick, just a good hour all together over there. It helped him a lot and gave him a boost of energy. He has been doing very well ever since then; he still doesn’t have much appetite, but we know it’ll come back soon! 🙂

Well, we are just so happy to be almost done; next week it’ll be just a push of one chemo… then normally a week after we start the maintenance phase! 🙂 🙂 🙂 Geez, what a year!

We went to clinic today and we spent pretty much the whole day there. Uncle Marc was with us, which made it more fun to go through! 🙂 Léo didn’t wait too long for his LP, which also made things smoother; he was put to sleep at about 10:30 am and woke up just about an hour later.

He had to receive a blood transfusion today as his hemoglobin was so low (down to 7.2). Chemo is still working very well and the team is really happy. We also found out today, should any relapse come up, Léo would only receive more chemo, no radiation… because of his age, which sounds so much better! Anyway, we still hope that we won’t have to worry about it!

We are almost done… it’s hard to believe but it’s true! This week mama will do the nurse at home again once a day to give him his chemo intravenously. Then we will just go once a week twice before maintenance starts! Feels great! 🙂

Léo had a busy day at the hospital today and received a lot of chemotherapy, but everything (including his LP) went very well. On top of this he received his flu shot: what a cocktail! 😉

We also got a chance to speak about the upcoming months a bit more with the docs this morning, and it looks like maintenance should be easier to go through. It depends on the kids though and it’s apparently hard to predict how Léo will be, even if he did “extraordinary well” over his whole course of treatment. We are very optimistic, and the docs told us we should be! Apparently the worse risk of relapse is over (thanks for letting us know about this now, i.e. at the end of this intensive part of treatment…!!!) and if he doesn’t relapse during his 33 months of maintenance, he will be considered fully cured. We so look forward to hearing all about this! 🙂

Home schooling was also strongly recommended. Leo might end up going to school only in Kindergarten! (3ème année de maternelle). Oh well, this is what they do in Switzerland and other countries and the kids do just fine! We are still looking into our options, but in any case we won’t keep our little one isolated and he will have plenty of occasions to make friends with his little pals during play dates and various park activities. Anyway, we still have time to see it coming and this is the least of our worries!

We were warned that during this very last phase most kids end up being hospitalized for fevers, so we will have to see… fingers crossed! By this weekend he will be severely neutropenic again, so in the meantime we will enjoy the outdoors as much as we can! 🙂