On Wednesday Sofia woke up feeling pretty yucky. She didn't want to eat a thing and had no energy what s ever. This is so unlike her so we knew she wasn't feeling well. Her temp was hovering around 99 for most of the day and finally jumped to 101 at 6pm. We packed a bag and headed up to Stanford. We knew she would be neutropenic so we were guaranteed an overnight in the hospital. Sure enough her counts came back at zero so they drew blood cultures to check for a bacterial infection, started her on antibiotics and admitted us.[...]

Today we are getting our last chemo of consolidation!! It's been almost 10 weeks since we started the phase, but we made it through. With every new chemo we don't know what to expect and these past 10 weeks we got some strong ones, but Sofia did so well!! We are so proud of how brave and resilient she has been.[...]

Wanted to share a special day that we had with Sofia yesterday.

Let me start my telling you that Sofia loves the beach!! I hate to admit that she's only been a couple of times but when she goes she's in heaven. For the past 4 months Sofia has been asking us weekly if we can go to the beach. Given that we have been lying low and it has been rainy we have been waiting.[...]

As you can tell from Mike's last post, we are back to getting our chemo on a regular schedule. We hit counts two weeks ago, so today was the start of 3 out of 4 weeks. Happy to report, that other than our ER scary night, things have been going well. The past 2 weeks consisted of high dose chemo on Thursdays, at home chemo through the port 4 days a week and an oral chemo at night. The first time we had this protocol, Sofia felt pretty good so we were expecting the same. Her appetite has been building and her energy level has been great! Spending our days out in the sunshine has helped everyone!! I know we still need the rain but I wouldn't be upset with the warm temps sticking around.[...]

As I sat down to write an update on Sofia (I'll get to that tomorrow) I realized the date
Today is February 10th, 3 months since Sofia was diagnosed. It is crazy that we have made it through three months, but sometimes it is hard to remember life before. It is just bizarre that 3 months and 1 day ago, childhood cancer was not even a thought in our minds.
What I think about most as I reflect back on the past 3 months, it is this "rare" disease that doesn't seem so rare to me.
When I first posted to facebook about Sofia's leukemia I was immediately messaged by friends who connected me with moms they knew who had gone or are going through the exact same fight. I don't have thousand Facebook friends, I have 252. That first day I was given eight names of moms in the Bay Area who have kids with leukemia. Within the week I was given 5 more names. I had a former employee tell me their sibling had leukemia as a child. I had family across the country tell me about their friends who went through this fight. Even the guy who was installing our baby gate around our pool had a close friend locally who had a son with leukemia. Not to mention the families in-patient at the hospital and the packed waiting room in the clinic. I hate to say misery loves company, but there was a comfort in hearing all of the happy ending stories. Or just talking through the bad or sad days with someone who knows how you feel. But remember, this disease is rare!
Since our diagnosis on November 10th I have also had three friends reach out letting me know their friends child was just diagnosed. They asked if I would talk with the families and my answer is always YES! I can't begin to thank the moms who spoke to me that first week. But, how are there so many kids here getting this "rare" disease?
I keep saying "rare" because this is why childhood cancer gets so little research funding. It is "rare" and therefore it only gets 4%. Let me repeat, the taxpayer-funded National Cancer Institute dedicates 4% of its annual budget to childhood cancer. Cancer is the number 1 cause of death by disease for children in America. I am so ashamed to say that I didn't know any of this three months and 1 day ago. I wish it didn't take my daughter getting cancer to realize this horrible fact. Just 1% more funding would result in $50,000,000 in addition funding for children with cancer.
I do not want to hear about any more of my friends or their friends children getting diagnosed with cancer. So now you know. I encourage you all to learn more about this and if you are donating to a cause make sure you know where your money is going. Know that September is Childhood Cancer Awareness Month. Know that the color that that represents childhood cancer is Gold. Know that February 15th is International Childhood Cancer Day. Then share it, post it, give it attention. My daughter and all kids who had, have or will have are worth so much more than 4%!![...]

So last night we all had a bit of a scare. Following a nice relaxing day at home, filled with our new normal (med struggles, and the like). We were preparing for the night. Gina was getting sofia ready to take a bath, while I was giving Michael a bath. Then, the scare began. Gina came to the bathroom carrying Sofia, telling me in a firm, yet not panicked (so sofia won't freak out) voice,  that we need to go to the ER. I looked up only to see Sofia with blood all over her belly and shirt! So we as quickly as possible got the two kids ready, called the Stanford oncologist and made our way into the car. Being that our daughter is bleeding, and we are not sure how much blood is actually coming out, we decided to go to the closer ER at Good Samaritan. Both of us I think were freaked out, me maybe a little more so than Gina just because I can barely stand the sight of blood. We were admitted fairly quickly so that they could draw blood and cultures to see what would be the next step. This is when it was discovered that the issue was that there was crack/hole in her line. The line that is connected to her port which allows us to administer the at home chemo, as well as draw labs. Because it was not a "closed" line, Sofia was actually pumping blood out of her port which is where the dripping blood came from. So now that we have an understanding of what happened, we find out that we are going to de-access her port, then re-access her port so that we can successfully flush her line. We also find out that the ER at Good Sam does not have Heparin available without the pharmacy having to make it. So Michael and I go home to grab the supplies that we should have originally brought with us, but in all honesty, I forgot to grab on our way out in the panicked state that we were in. As I return, with our supplies, Gina then de-accesses Sofia’s port. [...]