We had such a great week and weekend!! We didn't quite know how high or low Sofia's numbers were so we stayed home most days and swam! She is officially crazy about getting in that pool! We attempted the beach on Friday morning but it was freezing so we came home to the hot backyard.
On Monday morning we went in for labs and her numbers were great!! All numbers were up and her ANC was 2300. We were a go to start delayed intensification today.
We have been nervous about today because the phase is supposed to be very hard, last time Sofia got an LP she threw up for 4 hours and we are getting another bone marrow 1 in a million test to see if any cancer cells show up. We mapped out a plan with our doctors and nurses to try and minimize the throwing up and for the rest we just need to stay positive and take it hour by hour.
We arrived at 8:15 this morning to get some pre-hydration and than Sofia was taken in for procedure. She got an LP with 3 chemos in her spine and a bone marrow aspirate. She was a little upset when she woke up so I held her in my arms and she went back to sleep. She then received two more chemos in her port, one on which (the one they call red devil!) was a new drug for us. Sofia slept through all of it and woke up after 2 hours feeling great!! She asked for rice crispies and a cookie. We went over the plan for starting steroids tonight and went home. As soon as she got home she was playing and dancing like it was just any old Tuesday. She of course could not wait to see her brother!
For dinner she requested a nectarine, a peach and some Rosemary crackers. I can only imagine what she will be requesting when the steroid hunger kicks in! We just gave our first dose of Zantac and steroids which she hated. She will take these twice a day for 7 days, get 7 days off and than again for another 7 days. This in addition to another chemo this Friday and the next 3 Tuesday's.
We know she will not feel great many days over the next 58 days, but today she feels good and that's all that matters.
Thank you all for your prayers, love and support. Go #teamsofia[...]

Well, her numbers are up to 540 (not neutropenic) but not at that 750 yet!!! All of her other numbers are still looking great and she is still feeling well. Here's the tricky part. Once she starts DI she gets a ton of chemo on day 1 and than goes in three days later for another big chemo on day 4. This means day 1 has to be either a Monday, Thursday or Friday as the Bass Center clinic, where the chemo is given, is closed on the weekends. So we thought that since we weren't ready for tomorrow that we would plan for Friday. Apparently Monday is a holiday so they aren't giving chemo 👎🏼. So we check labs next Monday and start next Tuesday.
Though I love having Sofia feeling great, it is beyond nerve racking to not give her chemo when we know she needs it. This will be a 3 week no meds break! Scary but normal for many. We have to trust that this is just what her body needs right now and that this break will just make her stronger to fight!!!
So, lots more dance parties this week and maybe a mid week surprise outing (in a non crowded location).
Thank you all for your prayers, we can feel the power of prayers coming from everyone who surrounds our life![...]

It's been 18 days since we ended our high dose methotrexate. 18 days of Sofia feeling GREAT! This little break really has been awesome for Sofia. With her ANC up between 1000-2000 we were able to get out a little more and have some fun. We went to Great America for Courageous Kids day where Sofia was honored as an Ambassador, she had play dates with old and new friends, she threw out the first pitch at a Bellarmine game, she met her new baby cousin and got to visit with her Great Grandma who was visiting from Florida. And I can't forget, we had countless dance parties!!!! Not only did she feel good but she has had a great appetite and has even gained a couple of pounds!
Even though we have had a great couple of weeks, I've had a little pit in my stomach as I couldn't help but think to the phase ahead called Delayed Intensification. This is Sofia's last phase before she reaches "maintenance ". Delayed intensification is a really rough phase. It goes for about 57 days and she gets hit hard and often with Chemo (2-4 times a week). We know that these chemos will drop her counts making her neutropenic for most of the 60 days. She will also probably need blood and platelet transfusions. She will be nauseous throughout and could lose all her hair (which has grown so much!) She will also be put back on Steroids which if you remember caused extreme hunger, Giant cheeks and a lot of anger and sadness. With her counts so low for so long she will be at risk for infection so we will be locked in for a while. If she does get a fever than we would be admitted back into the hospital. So you can see why one would feel uneasy as this phase approached!
In order to start this phase Sofia's ANC needs to be 750, but since last Thursday she was at 1600 we thought we had it in the bag for an on time start. We had labs on Monday to prepare for a start today. We were quite surprised to learn her ANC was only 240 and she is neutropenic! I swear you wouldn't know it the way Sofia is running around every day. We checked her numbers again today and she was still only at 300. So we will check again on Monday and hope for a Tuesday start. So another weekend of fun and laughs but because of the low counts we are staying home. Noni has found his voice and personality so he keeps us entertained and on our toes! Three year olds love tiny little toys that babies just have to put in their mouth!![...]

We are home and done with Interim Maintenance!!
Our time at home between round 3 and 4 was not fun. Sofia, some how, caught a stomach bug and was sick for about 4 days. Crazy to think that the stomach bug has made her feel worse than chemo. Luckily her counts recovered just in time for her to start her forth and final round of High dose Methotrexate. We checked in late of Wednesday night and she started chemo at 1am. I hate starting in the middle of the night because I have to stay up all night for the start and the stop 24 hours later. Either way all went well and very smooth (4th times a charm).
About 2 weeks prior to this I was contacted by the Love your Melon campus crew at SCU. Love your Melon is a beanie company that was started to raise funds and awareness for Pediatric Cancer. In addition to selling their beanies online they have campus crews at colleges around the country. These kids raise awareness and work with kids battling cancer in their cities. The SCU crew asked to come over to our house on the 28th, which was National Superhero day. When I told them that we were going to be in the hospital they worked up a plan to come surprise Sofia, decorate her room and spend the afternoon playing with her. Well, the day went great! Sofia was so surprised and these girls were awesome. They colored, sang songs and ran around the hospital "flying". The next morning she asked if they were coming every day. It was a memorable way to spend our last scheduled in patient stay.
This morning the Doctor agreed to do an extra set of labs because we were so close to clearing in the middle of the night. Luckily she cleared and we were discharged by 10am. As usual we will have a couple days of nausea and low appetite but hoping she will feel good by next weekend for Courageous Kids day at Great America, where Sofia will be featured as an Ambassador.
Though we still have nightly oral chemo we have about 16 days until we start our next phase called Delayed Intensification. I am scared to death of this phase as it is the hardest of these past few phases. It will be about 8 weeks long and Sofia will most likely be neutropenic and not feeling well though most of it so we will be staying home.
Today, we will just focus on what we have accomplished and enjoy being home as a family. Noni (who turned 7 months yesterday) has started to inch worm across the floor so he wasn't very happy in the hospital where I wouldn't dare let him on the floor!!
So incredibly grateful for all of your love, prayers and support!! #teamsofia #sofiastrong[...]

Well this high dose methotrexate treatment is keeping us on our toes. Every round has been just a little bit different. We did not hit early clearance this time, but we still cleared faster than the first round. Either way, we were very happy to hear we cleared and got to come home and enjoy the beautiful day!! Sofia wasted no time, wanting to get right in the pool. It's pretty amazing how she transitions from hospital life to home life and vice versa, so quickly.
When we arrived to the hospital on Wednesday, Sofia went in for a lumbar puncture with spinal chemo. Though she's had this done a number of times this time was rough. She woke up as she usually does but within a hour she started to feel really nauseous. They gave her a secondary medicine but it didn't help much. She ended up getting really sick and throwing up for over an hour. She has definitely vomitted before but nothing like this. It was so sad to see her like that. They decided to give her another dose of zofran and add in some Benadryl. The vomitted stopped but she was loopy! When we woke up the next morning we had our girl back. Smiling, laughing and dancing around the hospital. We played games, lots of crafts in the playroom and Sofia even gave daddy a manicure (which he still has). We expect this week to be like the others, where she feels ok but has no real appetite until Saturday when she starts to eat and doesn't stop until we start round 4 a week from Wednesday.
With Noni getting bigger this juggling act is getting a bit tricky. We are just happy he's not crawling yet and we can still keep him contained at the hospital. I have to say the best moment of the day when we are there is in the morning when Mike and Noni walk in. No matter how she feels she lights up when she sees her brother and he of course, he gives her a pretty great reception. We are so incredibly blessed to have such amazing kids.
Again, we want to thank all of you for your support and prayers. No days are easy but some days are great, and today was one of those days![...]

Round 2 (of 4) of High Dose Methotrexate is complete!! This past week has been long to say the least. Clinic visit on Monday, Noni's 6 month birthday on Tuesday and admitted to Lucille Packard on Wednesday. Sofia was amazing at pre-hydration on Wednesday before starting our chemo finally at 9pm. She was guzzling all day and hit her pre hydration parameters on the first try. Once the chemo starts she doesn't feel great and loses her appetite. We finished chemo on Thursday night and woke up Friday pushing the water and lots of walks. Unfortunately this hospital stay was extremely frustrating with a complete lack of communication between the doctors. Long story short, our chemo ended an hour late and when I questioned the team they told me it was because Sofia took a "bathroom break" for 40 minutes between doses. Well maybe they think I'm stupid or not paying attention but it just wasn't true. Not even sure what she would be doing in the bathroom for 40 minutes!! I called them on it with my exact notes with exact timing. Sure enough there was not a 40 minute delay which the nurses clearly documented in Sofia's chart. This was one of 4 issues that we had in our short stay. Just too many cooks in the kitchen with the rotating doctors. I kindly told them all to not come back into our room until they take the time to read the chart for themselves.
The good news is that Sofia hit early clearance just 23 hours after finishing her chemo. She needed some extra potassium over the night but everything looked great this morning and we were home by mid day!
Out next scheduled admittance is not until next Wednesday so we have 10 days to relax and play!! Hoping Sofia feels good over the next week and again has little side effects.
Thank you all for your love, support and prayers!![...]

https://www.youtube.com/watch?v=Gwb8RMl5DKsAttached is the link to the Cal High Sports clip about Mike and Sofia. Obviously there was quite a bit cut out but Mike wanted to make sure everyone knew that he did thank all of our friends and family for their amazing support. We also want to make sure that this story bring awareness to Childhood Cancer and the immediate need for research funding so we can find a cure!! Finally as much as we would love a doctor to tell us that they expect a full recovery it is us, those of us who love her that expect a full recovery!![...]

Two weeks ago we checked into the hospital for Sofia's bone marrow aspirate and start of chemo. After 5 nights in the hospital her methotrexate levels were finally low enough to be discharged. Luckily, Sofia experienced minimal side effects and has had a pretty great week being home. [...]

Bay Area friends, Cal High Sports Bay Area is featuring a story about Sofia on tonight's episode KOFY TV 20 (cable 13 or 713HD) at 6pm![...]

It's been a while since the last update as we have been in a holding pattern. After 10 days in the hospital, Sofia's ANC got over 200 and they let us go home. The next step was for that number to reach 750 so we could start our next round of treatment. Well 9 days later we finally hit this morning with an ANC of 780. This has been the longest stretch of waiting for counts since we started. Sofia's last chemo was a month ago! The good news is that with this long of a recovery period, Sofia's feeling great. Her appetite is sooo much better and she's as energetic as always. [...]