Leo’s ANC was 1,700 yesterday so we went up to 75% of his oral chemotherapy. Everything went well; Leo brought his doll, Paul, which he “put to sleep” before he went under…! He started the steroids yesterday night and this afternoon he is recovering with a long 3+ hours nap. We will test him again in 2 weeks but it looks like his body started to adjust to the medication, which the docs were happy about.

We are trying to face the steroids week in a more relaxed way and we hope that with higher blood counts it’ll be at least a bit easier. Then we are planning to go to the mountains (Idyllwild) for a couple days (March 9th-10th) before we go to Palm Springs for a week early April: we look forward to it, it’ll feel good to go out of town! 🙂

Leo’s blood results came out good today (ANC= 1,300) so we went up 75% on the methotrexate but we kept the other med down to 50%. We will see how he is doing next week and adjust again if needed. We really thought his ANC was much higher, as his energy level was so high! Leo is doing really well and he is the only one in the family who didn’t get sick this week while we all got a pretty nasty cold…! Go, Loulou: he is a strong little one! 🙂

We are all enjoying the beach and the outdoors, but since it’s again a little colder we are planning to go to a Natural History Museum in the morning.

It looks like maintenance can be easier to go through when it’s uneventful; it’s a good feeling and we hope it stays that way at least for a little while! 🙂

Next step: next Tuesday for his monthly lumbar puncture and the rest!

Leo’s ANC was 2,500 this morning and we could tell: he is back to himself, happy, laughing hard and ran everywhere pretty much all day long! A welcome relief after the 5 days of steroids, which are always a challenge for all of us, and the last few weeks when he became so weak. That would be great if he could be stable in maintenance soon and keep that energy level; that way the steroids would also probably become less dragging… 😉

This morning I took him to Temescal Canyon; he hiked on his own for a good hour and didn’t want to be carried at all… We looked at flowers and birds; we also saw a little rabbit! It was really nice and relaxing. Leo looked at roots and was amazed at the shape of the cracked dirt underneath his feet, which he thought looked like leaves… so sweet! 🙂

On Sunday we went to the beach to celebrate Alex’ birthday; the kids really had a great time, and so did we: the weather was delightful, the water still a bit on the cold side but that didn’t stop our little ones for taking some into their buckets to build sand castles! We met Ninon and her family by chance there; it was really pleasant and the kids had fun!

We started his meds again today, half dose for 2 weeks; we will go back to clinic on the 19th and see where he is at. If his counts are stable (and if he doesn’t get sick in the meantime!) we will go up a bit, otherwise it would still be ok to be at 50% until his body gets adjusted to it.

It just feels good! We hope it stays that way for a little while; we really needed a break from this roller coaster!

We were (kind of) surprised this morning when we got Leo’s blood results: his ANC was down to 190! The rest of his blood counts were great, so we were told that it was linked to his recent viral infection. Mama was getting concerned but apparently there is nothing to worry about: his bone marrow just needs time to recover. We did the procedure today (his lumbar puncture and chemo in the spine) and he got his I.V. chemo but we are holding off the rest of the oral treatment for now. We started the steroids though… it looks like we can’t get away from that one! 🙁

His general anesthesia went very well this morning; he is less scared now, although still pretty apprehensive. It helped to talk to him and have him “practice” the whole deal on his doll “Paul”! He had to wait until noon again though (NPO since last night), but he was very patient, so sweet and we kept busy with all sorts of projects brought from home and given out by clinic’ staff! Every time he goes up to the 6th floor for his procedure, he gets to pick a toy; today he chose very mean looking warriors from some kind of TV show (!) and he also picked something for Charlotte: that was so sweet, she was just thrilled! 🙂

We will check him again next Tuesday and see if we can start the oral chemo again and at what dose. Leo is much better, is less weaken by this gastro-enteritis and got most of his energy and appetite back. We saw what it is when he gets sick and we hope that it won’t happen too often! 😉

Leo developed a type of gastro-enteritis this week, which really wiped him out! 🙁 We brought him to clinic on Monday to be checked; we were told just to watch him. He got better but yesterday night he had a really bad diarrhea and vomited a lot. He pretty much emptied himself up and we ended up at the ER for rehydration at 11 pm at night! It helped him a lot and he was better this morning.

We are also obviously very tired from the whole thing, Alex got the same thing and Charlotte developed it tonight… but we are glad Leo made it through without developing a fever. This is the first time he got sick and now we know that he can resist it on his own, pretty much. His ANC was at 1500 on Monday, which surely helped him to fight this virus.

We restarted his chemo treatment at half dose on Tuesday for the full week. Then next week he is scheduled to take 75% of the dose. Soon we should know what dose he should be using to be stable in maintenance and we look forward to it.

It’s hard to say how he got this viral infection, as we have been, like always, so careful… anyway, it was scary but he made it through! He slept pretty much all afternoon long today to recover. 🙂

Léo just had a blast with his grandparents the last 10 days! 100% attention was the key to go through the steroids smoothly…! 😉 Then they all had a great time in Carpinteria while Mama had a few days on her own to relax a bit more. It was fun for everyone!

On Sunday we did the “Galette des rois” celebration and Léo ended up being the king! It was funny because he got the first piece in which the “fève” was but since he didn’t finish his slice we kept looking for it… we ended up eating pretty much the whole “galette”, even if he was the king since the beginning! We didn’t force ourselves too much though, as the cake was so good! 😉

Léo turned 3 yesterday: our big boy is becoming more independent and loves it! He put his pajamas on his own Sunday night for the first time: he was so proud of himself! We were all so happy to celebrate his birthday together. Grandpa made a delicious cake that surely was appreciated! 🙂

This morning we went to Zimmer Museum (a place for kids in LA): he enjoyed himself so much over there. There was a plane and an ambulance he could drive: that was much fun! 🙂

Before then we stopped by clinic for a blood test; since his ANC dropped (down to 630) we were told to stop all medications again.

We will test him next Tuesday and see where he is at; then we will cut the doses in half until his little body gets adjusted to all this cocktail of meds. He is doing well, just a little cranky!! 😉

We were so glad, and actually pleasantly surprised, this morning when we got Léo’s blood test: his ANC was at 1,000, which means that there is no need to adjust his treatment at the moment. We will probably check him again in about 2 weeks to see where he is at, although our next appointment so far is only scheduled for the end of January. We look forward to having him stable in his maintenance and we hope that his blood counts will remain high like this!

Today Léo met a little pal, Cooper, who was diagnosed with the same disease at about the same age, Pre-B ALL, but at “low risk”. They are just 4 months apart; Cooper will turn 3 at the end of April. Their experience is very different compared to ours (his chemo treatment is much lighter), but the little one is doing just as well. He is not bothered by the treatment either. In that way Cooper is, according to his mother, being compared to Léo very often at the hospital! 🙂 They were both happy to have a play date, and especially Cooper, as he doesn’t have any siblings to play with and since he also needs to be kept away from his little pals for now. Léo shared his room and toys very nicely. It feels good to connect with another family going through just about the same thing!

We had a nice, relaxing Christmas “staycation” and we look forward to having family over tomorrow. We wish you all a Happy New Year!

We got good news yesterday, as Leo’s ANC climbed back up as expected… not too much though, only up to 800. We were told that it may take him up to 6 months, since the beginning of this phase, to get used to the meds and be stable in maintenance. This is nerve racking since we were so happy to have him back at the early stage of this phase, but we will get there; it’s a matter of time, this just has been too much and we can’t wait to have a more normal life, to get a chance to forget somehow… if possible! 😉

We are back on everyday oral chemo and antibiotics over the weekend. Since his counts are expected to drop again between now and next week, we need to avoid crowds again: parks are ok if not too crowded, no trips to museums, the beach, markets and malls. At least we don’t need to keep him inside, which is good! If his counts drop again, they will lower the amount of medicine by half for the upcoming month of tx, then slowly climb back up until we reach the dose again. This would give a chance to Leo’s little body to get adjusted to his treatment. At least they have a protocol and know how to handle all this without the threat of a relapse, which is always reassuring! 🙂

Christmas will be quiet at home, just the 4 of us and then we will welcome GrandPa and GrandMa at the end of next week. I am hoping that since he may be neutropenic at the beginning of their stay that we will skip the steroids… which would be so much easier! We will see what they have to say at the next hospital visit Friday the 28th.

Leo has been more tired lately, although he is still pretty active. We mostly go around the block (he walks or takes his bike); this morning he picked up leaves on the ground for an art project at home. He had fun, and mama too! 🙂

We got Leo’s blood test results this afternoon and his counts dropped to 400. We were told to stop all medications up til next week. In a way, this will give us a break! This apparently was expected; they need to find out what the proper dosage is for Leo in his maintenance: each child is different and has to be monitored. Next step is next Tuesday for a new blood test and we will go from there.

Leo is still doing very well; he has just been just a bit more cranky lately, which makes sense now!
🙂

Nous venons de terminer les 5 jours de corticoides de Léo et on sent tout de suite la différence! Nous nous réjouissons de pouvoir préparer Noël sans avoir à nous soucier des médicaments et des séjours à l’hôpital. Ceux qu’il doit avaler tous les jours ne le dérangent pas du tout et il les prend comme un chef, sans broncher!

Les enfants sont allés choisir un grand sapin ce week-end et l’ont bien sûr tout de suite décoré avec beaucoup d’entrain. Il est beau, bien coloré: le bonheur! 🙂

Margaux est retournée en France dimanche dernier; elle nous aura bien aidés tout au long de ces mois plutôt difficiles! Léo aura beaucoup appris avec elle. La séparation a été dure des 2 côtés et on espère qu’elle pourra revenir nous aider cet été. C’est Mimi, la babysitter de Léo, qui a repris les rennes quand papa et maman sont au travail.

Ce matin, Léo a commencé la journée en demandant pourquoi le jour “tombait” pour que la nuit commence… et vice versa, pourquoi le jour se lève et que la nuit s’en va. Ah, les belles questions des tout-petits! Puis il a remarqué qu’il pleuvait: “pourquoi il pleut dehors? c’est les arbres et les fleurs qui pleurent?”… puis en écoutant attentivement les trombes d’eau: “ils pleurent beaucoup!! Pourquoi ils sont tristes, les arbres avec leurs feuilles?” J’ai trouvé ça tellement beau; voilà de quoi inspirer Mémie pour un poème!! 😉

Cette semaine le temps devrait s’améliorer après une bonne semaine de pluie; nous en profiterons pour retourner au parc. Léo y est maintenant très à l’aise et est content de se retrouver avec d’autres enfants. On cherche toujours à l’éloigner discrètement des petits nez qui coulent… il le comprend bien, tout se passe tranquillement; c’est nous qui sommes encore à tout vérifier partout, mais on va s’habituer: on est déjà bien plus à l’aise!

Il a aussi retrouvé sa petite copine Ninon la semaine dernière avec grand plaisir et son copain Julian. On est bien content qu’il puisse jouer avec des enfants de son âge; et la petite compagnie est évidemment bien appréciée. Il va aussi maintenant à la bibliothèque deux fois par semaine avec Mimi. Il y retrouve un petit groupe d’enfants de son âge avec lesquels il chante ou écoute des histoires racontées pour eux. C’est très bien fait, il adore! 🙂

Samedi Léo a aussi pu venir avec nous à l’audition de violon de Charlotte; il a tranquillement attendu que ce soit son tour sur les genoux de sa maman et s’est bien réjouit quand il l’a vue arriver sur scène: “C’est Charlotte!”, bien fort! 😉 Elle s’est très bien débrouillée; elle a joué “Mary had a little lamb” et son petit frère l’a applaudie bien fort!

La maintenance est vraiment une phase dans laquelle on commence à respirer… mis à part les 5 jours de corticoides à haute dose qui transforment complètement notre petit chéri! On va s’y habituer. Charlotte fait preuve d’une patience extraordinaire envers son petit frère; elle est vraiment mignonne avec lui. Ils jouent énormément ensemble… et ça rigole bien souvent! 😉

Prochaine étape: mardi 11 déc, prise de sang pour voir où on en est. Pour l’instant Léo est à 1500; on aimerait bien que ce soit son chiffre pendant toute la maintenance. En tout cas, il est là où il devrait être selon l’équipe de UCLA et mardi les résultats de la ponction lombaire étaient bons!