We are still waiting for Leo’s blood counts to go up, which is making us a little nervous; the team is giving him one more week off chemo. Apparently it can take up to 3 weeks for the little ones to recover after this last month of treatment, but fast recovery is what they aim for. He got hit pretty hard during his last round of treatment!

Hopefully by next Monday, he will be ready (they want his ANC to be at least 750) and we won’t have to perform a bone marrow biopsy on Tuesday to understand what is keeping him for growing his cells at a faster pace. We are thinking that he fought against a little cold, which might be the reason why he got stuck at 300 between last Thursday and yesterday.

Well, let’s keep our fingers crossed and, as always, hope for the best! In the meantime, still no outside activities to be safe: it seems long, but still no complaints from our little one!

Yesterday we found out that Léo’s ANC was… zero!! Meaning that his immune system is completely down and we have to keep him inside again for a few more days. At least we are not at the hospital and he hasn’t broken a fever yet; let’s keep our fingers crossed! We are obviously all being very cautious and keep our good washing hands habits. Charlotte is being so sweet and cooperative. Léo also hasn’t lost his energy and/or appetite, which is very encouraging.

The team is waiting for his ANC to be back up above 750 to continue his chemo and finish off the last 2 weeks of “consolidation”. That may take a few days; we will check on Thursday where he is at and see if he would be allowed to go out over the weekend. That would be very welcome and we certainly would take advantage of it, as pleasant and sunny California weather is finally back!

Léo still doesn’t complain about being kept inside; he keeps himself busy at home and gets a lot of attention! All together, it’s all good! 🙂

Léo spent the last few days at home without any fuss, even if the weather out was delightful. I guess children simply follow the flow! He was a bit tired Thursday and Friday; he even had a slight runny nose, but not too bad. He was very active and playful today. We took both of them to Raouf’s and Mary-Kay’s; we stayed inside, as we still have to be careful until we hear more about his ANC status on Tuesday. They had a blast, played and laughed a lot! 🙂

Tomorrow we will be decorating and hiding the eggs inside the house and a friend of Charlotte, Melody, will be joining us in the fun!

Happy Easter to you all!  Here are some pictures.

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This morning was quite an ordeal! First of all everyone seemed overwhelmed at clinic, which was really frustrating as no one had the time to answer my questions straight! There were so many children who needed to be seen or have a procedure done and they all  came, like we did, at 8am! It’s amazing to realize how many of them have cancer, from babies to teenagers… leukemia, neuroblastoma, brain cancer, all sorts of stuff we don’t want to hear too much about! Léo looks great compared to some of these kids…

Since Léo didn’t have anything to eat since 9pm last night (like every Monday night) I was still hoping that he would be among the first ones to be sent upstairs for his LP procedure. But this time, his blood counts were low: his ANC dropped from the encouraging 2200 last Thursday to… 600, meaning that the red flag is now on and we have to keep him home and watch him closely for fever! This was predictable (and the doctors are really happy that he is responding so well to his treatments!) but, still, yet again we have to adjust and hope for the best! We were warned that the road ahead of us would be bumpy, and it is!!!

Anyway, before the procedure, he had to receive a platelet transfusion, which delayed us quite a bit: by the time he was ready to go upstairs it was 11:30 am and he still didn’t have anything in his belly… not even fluids, as the doctors were so overwhelmed they forgot to give some to him!!! I was beside myself… but Léo, as always, did pretty well, even if he was regularly asking (sometimes screaming!) for an apple, polenta or tofu!! 😉

It seems like this second part of consolidation won’t be as easy as the first 2 weeks, but we took advantage of this break. It also feels good to see that his body is creating new cells so beautifully… too bad the chemo has to destroy pretty much all of them!! Still it’s encouraging! And his hair looks like it’s growing back… 🙂

Tomorrow will be the end of the second week of consolidation; Léo did beautifully! Still no side effects whatsoever… such a relief for us! 🙂 He is active, running everywhere now (his limp is almost gone: yeah!), living his little life like it should be at 2 years old. He is having trouble to share “his” IPad with his sister, who obviously doesn’t always appreciate it…! Charlotte has been so nice and patient with him, which is also really heartwarming. Both are so happy to be back home together.

Yesterday Léo got a transfusion, “a little boost” (as they call it at the hospital… put this way into perspective, frankly it’s not that bad!!) to help with his blood counts. His lips were really colorful this morning! We didn’t even notice that he was anemic: not even tired from it! Sometimes we feel like this treatment will actually go by quickly if everything still goes smoothly like it has been lately… and we want it to go as quickly as possible, get over with it and be in maintenance with a chemo taken orally only once a month for the next 3 years… ah, that will come! His treatment schedule is becoming our routine and we keep our fingers crossed that he doesn’t get sick!

After this first part of consolidation, i.e. starting next week, we will go to clinic only on Tuesdays to get different kinds of chemo (and still his spinal taps for 2 more weeks… then it looks like this will be done only once a month!). Then he will start a second round of what we just went through, but without Tuesdays’ sedations and spinal taps. It helps to have a road map as they call it at the hospital: it keeps us going!

This second part is called “consolidation”… better consolidate these great results!!! Léo received A LOT of chemotherapy this week and went through it amazingly well. No nausea, no fatigue, no loss of appetite, just a happy child, having fun dancing with his sister and playing joyfully. Yesterday we heard that his ANC was 1500!!! (what it actually should be in a healthy body!) Go, Léo! We hope it stays like this as the chemo he is receiving this month may make that drop; in any case, we know what to do when his counts are low so we are less worried about it. This weekend, if the weather permits, we will bring him to the beach; when he was hospitalized we had a little game of describing the sunset, (which Léo got to see almost every day with delight before he got sick): he was so good at it, we look forward to give him a chance to see it again. This week he walked around the block every single day with Grandpa and Grandma; he is still walking a little funny but that should get better soon. He is for now still sleeping with his orthopedic boot, which helps a lot!

We ended up going to a park, where there was absolutely nobody besides us… the perfect place for now! Here are some pictures; Léo was so happy, looking at every detail everywhere… so heartwarming to see him like this! 🙂

We really had a good time, it felt great to see Léo in such great shape! Plus he started to walk again… and almost ran when he became a bit upset earlier!!! Now we know a bit more how he will be between 2 series of chemotherapy when his counts are good. This is really something to look forward to! We are ready to move forward to his second stage of treatment called “consolidation”. He needs to go through it to make sure his stupid cells don’t ever dare come back into his body! He will start Tuesday with a lumbar puncture and spinal tap under sedation and receive his chemo every day from Tuesday through Friday. This will repeat twice and then we will give him a break again, a chance for his blood counts to go back up. He might be acting totally normal in the meantime or be a bit more tired and nauseous. We hope he won’t break a fever but if he does we know how to handle it and at UCLA they know what to do… which is reassuring!

He has been so cooperative with everything, never pulled his wires, never screamed or asked to leave his room: he has been a dream of a patient!  You can click here to see a slideshow of pictures from his hospital stay.

Yes, Leo is home.  He got home last evening, had some dinner (polenta, which he has been asking for ever since he got to the hospital), played some, watched some TV, and went to bed.  His operation went just fine, but he had a breathing tube while he was under so he’s breathing a little funny.  Nothing to worry about.

He’s still not walking on his right foot very well, but he is motivated to get walking again, so that should come around soon.  Chemotherapy is going to be on Tuesdays from now on, so he’ll head to the clinic on Tuesday.  In fact, he’s going in every day from Tuesday to Friday next week for one thing or another.

But for now — yay!  He’s home!

Lots of stuff happening today.

We’ve been waiting for a while for Leo’s ANC to go up to a level where they could operate on him to put in a CVC and take out his PICC line.  Well, yesterday we found out his count was around 600, so they are going to operate on him today.  Hopefully all will go well and he will be released from the hospital soon — we’re thinking today or tomorrow.

In other news, the results from his biopsy came back and they are rather positive.  He is still in remission, first of all.  But better than that, they couldn’t even see any cancer cells at all under the microscope (they did see some the first time).  This doesn’t mean he’s cancer-free, of course — they can’t check everywhere — but it is excellent progress after one month of treatment.

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