It’s hard to believe but we are seeing the end of this ordeal…!!! 9 more weeks to go, 2 more chemo IV/steroids treatments and only 1 lumbar puncture with chemo in the spine! We are planning to go all for of us in May for that very last procedure; we will take Charlotte out of school and the we will celebrate!! :):):)

Leo has been doing great. He has been experiencing morning nausea (and the rest! :() though pretty much every morning these past few weeks so we put him on a daily anti-nausea medication. It has helped a lot, which is a relief. For the last couple months we only went to clinic once a month, as Leo ended up being stable in these last few months of treatment and able to tolerate the 100% of the meds… which was the goal since the beginning of maintenance, but never happened!! But apparently the way he reacted to his maintenance is also a good sign, like Dr. Moore told us a few months back.

So, we are just happy and we wanted to share our joy! Leo just spent a couple weeks at home with Alex while Charlotte and I went to France. We all had a great time! Life will slowly go back to “normal”!! 🙂

We were told that the last year of treatment would go fast… now we can say that it does!! We “only” have 6 more rounds of steroids and 2 LPs to go through. Leo did very well last week and his lumbar punction results came back clear. We haven’t seen a sign of “bad” cells in almost 3 years now… so fingers crossed until June 15th, 2015!!

Now every 4 weeks Leo gets his I.V. chemo, is on steroids for 5 days afterwards and gets a transfusion of IvIg. The morning at the hospital is just a bit longer but everything goes well and the team over there is always very sweet with our little one… who will turn 5 in January!! The IvIg transfusions have been going well so far and we hope that his immune system will go back to normal soon after treatment is over. We heard that sometimes it takes time and since his is completely destroyed by the whole treatment we will have to see.

Leo has been SO energetic lately and so happy with everything! 🙂 Last month he asked us so many questions about the disease, he felt like it wasn’t fair that he was the only one having it…! The head of the department, Dr. Kempert, took the time to answer his questions and especially the “why did the bad cells come to my body?”; she took it seriously, talked about DNA and all and the next day I had to show him what DNA was… molecular biology can actually be really fun and interesting for a 4 years old!! He truly enjoyed it and was proud of himself explaining it afterwards to Charlotte!! 😉

Charlotte is also doing very well. In her Thanksgiving notes at school the first thing she wrote down was: ” I am thankful for my little brother who is almost done with his cancer”. So sweet… I wonder what the teacher had to say on this pretty deep statement while other classmates were probably thankful for lighter things in their lives! She has been SO supportive throughout this whole process, she has been amazing.

We were thrilled to spend 10 full days with my brother Louis, who came visit for Thanksgiving. We had a lot of fun all together, it was so nice; we ended up spending a couple days in the desert of Joshua Tree, which was also much welcome! We now look forward to going to Red Rock Canyon (Las Vegas) for Christmas to spend time with our Boisvert family. It’ll feel good to relax. We will be back on time for Leo’s next treatment Dec 30th. We will kick in the New Year with hope in our hearts! 🙂 🙂

We started the countdown!! :):):) Leo is finishing up his steroids round and then we will have “only” 10 more to go! What a great feeling and plus these past couple times it has been much easier to deal with, which we embrace as a pleasant surprise.

Leo is in great shape; he has a lot of energy and is a happy camper! He has been stable these past few months with 100% of the meds and a high ANC: between 1,400 and 2,100. That makes all the difference, as we can do more things without being too worried about him getting sick. We went to Universal Studios one morning, where both kids enjoyed Despicable Me and Simpsons rides a few times, and we took a few short trips to relax. Since his little friend Mathieu moved to Santa Barbara we have been there a few times so that they could meet and play; they are little pals and love playing bots with each other! 🙂

Charlotte has also been doing great; she lost a few teeth over the summer, which she was obviously thrilled about!, and is ready to go to third grade. She did a couple dance camps over the summer, that she really enjoyed, and went with Alex to Maine to visit family. They all had a blast over there and we all look forward to being able to go all together as a family. She also switched from violin to viola and has been enjoying it!

We are still debating if Leo should go to pre-K this year a few days a week, but it seems like it would still be safer to go for another year of various activities. Maybe in the Spring we will get him ready, especially socially, to go to Kindergarten; we will be in touch with Mc Kinley Elementary school during the year and we will see what they have to offer. In the meantime we signed him up for the aquarium, which he really enjoyed last year, and we will go back to Outside the box a couple times a week. We are looking forward to meeting the English teacher recommended there to teach Leo how to write and read. He has showed a lot of interest lately and actually knows to read quite a bit of words already, both in French and English. Mr. Leo also enjoys learning new words and takes pride in using them!! The other day I heard him say with mischievous and proud little eyes in the car “Mama, I am sweltering”, word that he learned in the show “Word Girl”…! 😉

Mama has been active with her flute and created a group with a couple of friends to tentatively raise money for research in defeating cancer. We will be giving our first concert at UCLA Mattel Children Hospital, where Leo is being treated, to raise funds for UCLA kids research lab. We are very excited about it, and please feel free to contribute and/or pass the word around if you wish to participate to the fundraising (simply click on the widget!).

We all enjoyed a few days in Paso Robles area last week: it was a fun way to end up the summer vacation!
Coming up: looking forward to Grandpa and Grandma’s visit next week, then September 9th we will go for treatment with LP/chemo in the spine (3 more to go after that one!!) and removal of his little birth mole while he is asleep. We keep moving forward and hopefully things keep going like this! :):)

It has been a while since we wrote on the blog! Leo is doing very well and we were really happy to be able to spend a few days in San Francisco this past week! We went everywhere, Leo had a lot of energy and both were really happy to discover this amazing city. We did a lot over there, we visited a few kids museums and did quite a bit of sightseeing. Charlotte had to see the monuments described in her American girl doll books! 😉 As for us, we mostly got to relax, which was much needed. We took the cable car and the bus a few times; the kids enjoyed it and Leo wore a mask when we felt it was too crowded and he did very well. 🙂

We had a huge bump on the road back in February; we ended up spending a full week at the hospital. It was very scary, Leo went down very fast and it took him a few weeks to recover fully. We kept him away from his activities with other kids for the rest of the winter, as we saw how dangerous it is for him to catch a nasty virus and we didn’t want to go through this twice. We keep moving forward and we hope it doesn’t happen again!

Now that Spring is back and flu season is over we will have him enjoy his activities at Outside the box again and at our local library. It doesn’t seem like he missed any of it though! We kept him busy with a bunch of play dates and various outdoor activities. Leo has now friends his age with whom he plays nicely and laughs a lot! It’s so nice to hear his little voice giggling!:):)

As far as treatment is concerned, we still have a little more than a year ahead of us and we are still trying to figure out the dose of his meds for his maintenance. It seems like every time we reach the 100% there is a problem, which is apparently expected. All of this is quite of an adventure! We keep checking him every 2 weeks instead of once a month, but it feels better like this and we can adjust the meds accordingly.

We will go back to clinic on Tuesday for his monthly chemo and steroids and at the end of this week we will meet other families with kids in treatment at Camp Ronald Mc Donald. Everyone we talked to told us that the experience over there is really heart warming. We will see, but we go with an open heart and we look forward to having the kids spend a weekend full of outdoor activities while we get to relax again as the hospital team won’t be far in case of a problem!

We ended up connecting with other families with other little boys in treatment these past few months; another little one, Alex, 5 years old, diagnosed last year, lives in Santa Monica just a few blocks away from us. All of them are very positive too and the kids are also doing great. We meet them every Sunday morning at a special karate class organized by a great person who is willing to help these kids through breathing, movement and self-control. All sibling are also welcome to join the class. Charlotte got the hang of it and is now ready for her yellow belt! 🙂

Here are a few pictures of our recent trip to SF: enjoy! 🙂

Leo was tested yesterday and is doing very well; his ANC is at 1,200 and they decided to keep his meds at 50% since he seems to be more stable that way. We will go back in 2 weeks, but again only for his vincristine, no lumbar puncture and chemo in the spine that time around again! This second year in maintenance so far is much better. His next lumbar puncture is scheduled for January 3 and we will only have 3 more during the year of 2014! Yeah!!!

At the hospital last month we were told to keep his activities but to be very cautious for the winter as many viruses of all kinds will, of course, be around. We taught him to put a mask on when we feel like he should be protected. He understands it very well and is very cooperative. That way we can take him pretty much everywhere and it feels good. For instance last Sunday Alex took Charlotte and Leo ice skating while mama was playing in her concert with LADSO orchestra: they had so much fun and even if it was crowded we felt comfortable having our little one ice skating with a mask on! 🙂

December 7th we will be walking in Santa Monica for a few hours in the morning in honor of the kids being treated for cancer. We created a link to collect funds for research (i.e.”Cure Search”, what UCLA is using for its protocols for Leo and the other little ones). Here it is if you wish/can participate: http://www.curesearchwalk.org/la/boisvert42

Thank you!
🙂

Leo has been in maintenance for a year now and is doing very well. 🙂 He is full of energy and is very active. He loves going to his daily activities and enjoys being home schooled for preschool. He likes his French lessons on Wednesdays with his very nice teacher and his babysitter Emilie is still taking a great care of him. Things have been good and stable, which is what we all need!

He had a good time at his soccer classes and will try hip-hop next week, which might be a better fit for him. Outside-the-box organized activities seem to be his favorite: he is in a nice group of mostly home schooled kids; they do 30 min of storytelling, music, arts and crafts and theater, i.e. 2h all together and our little one looks forward to going there every Tuesday! The music class is especially good over there; they are currently listening to Carnaval of animals and scatting with Ella Fitzgerald! He loves this and has a lot of songs and music in mind! 🙂

As far as treatment goes, we are still trying to find the right dose of medications. It looks like this is going to be like this until the end of the whole deal. He was at 75%/50% and this morning, since his ANC was down to 600 again, they cut the medicin again: 25% (mercaptopurine)/50% (methotrexate). We will do so for 2 weeks until his next clinic appointment, which is scheduled Nov 5th. We were told that the most important is that he takes some medication. It seems like his body reacts to the meds fully, like always… 🙂

We took a trip to Arizona last week; Leo got to meet his cousins from Paris/China for the first time and Charlotte got to see them again after 4 years. They all had such a great time and we hope to see them all again soon!

We are getting more and more confidence in Leo’s treatment success as we are getting further away from the intensive part of treatment. It feels good and we hope it stays this way! 🙂

We had a few easy, uneventful months while Léo was stable in maintenance; he was back to himself, happy and energetic. We just had to make sure he was taking his medicin properly. When we went to San Diego at the end of June we could sense that he was a bit more tired, as he couldn’t walk for too long and wanted to be carried pretty much all the time… sure enough, at the next check-up early July his ANC dropped to 560 (from a solid 1,200 for 3 good months). We were really surprised and were told to cut the chemo dose by half, which we did. The week after he was down to zero, completely neutropenic and had to be kept at home… a step back that reminded us a little too much about last year! He was extremely tired, passed most of his time on the couch being uncomfortable and experiencing strong headaches. Poor little one, it was so sad to see him like this. 🙁 We stopped all meds obviously and were told to come back a week after (i.e. yesterday) and to get ready for a bone marrow biopsy on the Friday of that week if the counts were still low. It was so hard, we feared relapse even if we could tell that Léo was getting better pretty much every single day in the middle of that week of waiting. Fortunately the counts were up again yesterday, back at 1,000 and our little one is now feeling just fine, although still a bit tired and cranky.

They believe he became immuno-suppressed by the accumulation of his oral chemo meds. I guess this will happen again, but hopefully not too often! Right now he is taking only a quarter of the doses, and we are scheduled to go back next Tuesday for his monthly treatment: the last LP of the first year of maintenance! We are moving forwards, but geez, what a bumpy road this all is!

To celebrate the good news after these intense moments we will be going to Catalina Island for a few days over the weekend. We also went to the Science Museum yesterday and Zimmer Kids Museum today, along with Margaux: the kids had so much fun, it felt so good! 🙂

Coming up: 2 more months of trying to find the right dose again before we start the second year of maintenance in October with only 4 lumbar puncture per year.

Léo got his blood test after his first month off the hospital and they were great: ANC high, 1300, platelets and hemoglobin at a good level too. It was a relief and we hope to be less stressed about it next time around! His LP results came back negative; we are on the right track and we hope it stays like this. We talked to the head of the department and got a chance to ask what we could be doing on the side to help Léo stay on the right path. She said he is doing so well that we shouldn’t change anything! So, we will take her word for it and we will keep him on his healthy diet. 🙂

Léo’s hair is growing and we will let it grow and grow… until we can braid it!!! 😉 It’s so nice to see him like this. He is so active, so happy, except for a few days a month when he is on steroids. He loves his music and soccer classes and we might even put him in school one or 2 mornings a week in the fall. We will see how stable his ANC is. It might not be necessary anyhow, we will see, but Sigal, the owner of his former preschool, would love to have him back and we know that they would be really careful with him over there.

We are scheduled to go back to clinic (only for chemo this time around) June 19th; then we will start the fourth trimester of maintenance: 2 more LP to go before we start the second year of maintenance. Time flies, and in these circumstances we want it to fly fast!! 😉 Being stable in maintenance is really good.

It has been a while since we wrote a paragraph on the blog; well, these past few weeks have been pretty uneventful, which gave us a nice break. Leo has been in great shape and even the steroids didn’t bother him too much last time. He got his LP this morning and everything went very well. His ANC seems to be finally stable and the docs are happy since Leo is able to tolerate the 100% dose really well. 1,000 is a good number and we don’t need to go back to the hospital before next visit, scheduled on May 21. We have been waiting for these good news and we warmly welcome them!
🙂 🙂 🙂

Leo’s week is now pretty busy. He started music classes with a group of children on Wednesdays, which he loves. He explores all sorts of instruments over there and gets to learn fun songs. He will start soccer next week (a group of 6 other 3 years old!) and hip hop in the fall. Hopefully he will get to meet little pals he could have nice play dates with on the side.

The rest of the time we homeschool him and we go to local parks and museums. He loves to learn and moves forward pretty fast. This month our theme is Asia; we do all sorts of art projects, read children books about different Asian countries and explore Asian food and music. Our little one loves it, along with Charlotte who jumps in full of enthusiasm!

Our week in Palm Springs was so nice. Both kids had fun swimming and in the beautiful relaxing outdoors.

Life finally feels like back to normal, with just a few medications to take every day. We are used to it and keep hoping for the best! 🙂

We went back to clinic this morning and Leo’s ANC was good: 1,400. We went up for the methotrexate to full dose and kept the 75% on the other chemo. Léo should be considered stable in his maintenance soon; we were told it could take up to 6 months, and there we go…

Léo has been feeling really well lately; he looks good, has rosy cheeks and is full of energy. He goes to the library twice a week with Emilie, his babysitter; they have a program for preschoolers that teaches them songs, which he really enjoys to learn. Charlotte loves to play school at home with him and teaches him all sorts of things, and among them rhyming and equations… I guess it’s never too early once the kid shows interest!! 😉 Anyway, our little one is happy and stimulated!

This weekend we went to Idyllwild; the kids went sliding on fresh snow and had much fun! Charlotte and Léo also both got to pet a bunny, a cat, a turtle and a snake at a Nature Center over there and really loved it. Tomorrow we will go plane watching at Santa Monica Airport and go choose a pet for the family. We might go for Guinea pigs though, we will see!

We hope that the upcoming 2 weeks will be pretty much uneventful: it’s so much better like this, it’s relaxing and we need it! 🙂