Maintenance. Phase 2.

I am writing this halfway out of empathy and halfway out of frustration. I am somewhere between both right now.

Sophia started phase 2 of maintenance on Monday (two days ago) and this seems to be her lowest point in quite some time. As I said in previous posts, each of these segments are broken in to eight weeks over the next two years. Each starts with a spinal tap, include a vincristine infusion and is proceeded by one full week of dexamethazone (steroids). I’m not sure if it is because she hasn’t had steroids in a while or if it is because of the newly increased dosage, but she is NOT taking this well. Mostly she has been crying for the last two days. So much so that her cheeks are badly chapped from tears. She is incredibly volatile and angry at everything. She says that her skin feels “like it is being burned with tiny burns”. I’m not sure what that means, but it sounds very unpleasant.. I finally got her to sleep last night by taking her for about an hour drive until she eventually sobbed herself to sleep. Long story short, this is turning out to be a very terrible part of treatment… And here we thought that it was going to be a lot easier from here on out..

She was taking a drug called Marinol, which is the synthetic form of THC and it helped her SO much during previous bouts with dexamethazone, but we ended up seeing a seemingly very conservative doctor a few months back who became very upset that she was even prescribed marinol in the first place.. Like it was our fault or something, and decided that Soph can not ever have it again.. She then told me that she would willingly prescribe Ativan for her exasperation. So instead of a more natural remedy, we are left to resort to more medications to help deal with the side effects of these treatments… Not happy about this..

We said that we were not going to give her the Ativan unless we absolutely had to, but we absolutely had to just a few hours in to the first day..

This has been the worst week in a long time, and we are only going in to our third day now.

I wish I could find something that would help this girl with the horrible sickness and anxiety these drugs are putting her through.

The other bad thing, or possible bad thing, is that the chemo might not be working right now.. Sophia’s blood counts include an ‘absolute neutrophil count’ or ANC. Her ANC is suppose to remain between 501 and 1500. If it drops below 500, she will be deemed neutropenic, like earlier this year before her blood transfusion, and late last year (around thanksgiving). However the opposite is now happening and her ANC is sitting at over 4000..

Now, this would not be a bad thing for you or I, in fact ours is likely much higher, but the fact that hers is so high right now might mean that the chemo is not doing its job at regulating her cells. And if it doesn’t regulate the good cells, it might not regulate the bad ones, possibly allowing her leukemic cells to rebuild.. They said we shouldn’t worry until next month when they see her at clinic, and if that IS the case, then they will start by increasing the dose of her daily chemo.

So, until then, there is really nothing we can do except try to get through this next week..

Hopefully my next post will be with better news and a better outlook.

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Maintenance – Day 0

I feel like I am becoming worse and worse at keeping this blog up to date.. Seems like months are flying by between updates. Between my work schedule and all of the hospital visits, it’s becoming harder to find time for the little things. I am learning more and more though, that the little things are very important and it is a necessity that said time be found.. or made.

So, today is the last day of interim maintenance II. Sophia’s been through quite a bit since my last update, but has again handled most of it with the same resilience as she has always shown. Her hair finally fell all the way out around February or March, but now in late June its coming back and looks like a fresh buzz-cut. I’m not sure if the upcoming treatments will cause it to fall out again.. but I don’t think it will. Either way, she doesn’t seem to mind much.

She had to take a lot of nasty drugs and chemo during the last few months. Obviously, some sickness and ill side effects accompanied that. I think that the worst of this though has been her mood. It might be partly because of the stress and partly as an actual side effect, but she has definitely become very high strung, snappy and pretty annoyed, all around. It has been a struggle trying to keep her happy yet not spoil her, or better, let her be the boss..

When she gets older, we want her to feel accomplished, not entitled.

I think a lot of that is starting to go away now. She seems to be eating better and less moody. Definitely more active, so for the time being, pretty good provided the circumstance.

In a few moments she will go in to the propofol clinic. Get knocked out and endure another spinal tap (LP) with introthecal methotrexate. We hate the anesthesia because of the obvious potential complications, although luckily she has never had any ill effects from it.. After that, she will have a vincristine infusion and we are free to go.

This is the last treatment in this phase and from here she moves to maintenance. The maintenance phase will last two years and because we have her enrolled in a study, she will be randomized in to one of four treatment schedules.

The study is something they asked if we would participate in when soph was first diagnosed to help with refining the treatment protocols for this type of cancer. The randomization is all based off of the same medications, methotrexate, vincristine and the steroid dexamethazone but different doses of them to see what works best with using the least amount of drugs. We will know in about 5 minutes what the next 2 years of this will look like for us, but we know for sure it will include those medications.

So, she is getting ready to go in to propofol, so I’m gonna cut this short and hopefully I get better at keeping this up. I promise to try my best, is this is as much for me as it for those of you who wish to read it.. a public journal of sorts, and will help should I someday wish to revisit this story.

…or edit it to include aliens, dragons and/or the use of super powers…

The Beginning

I decided to start a blog to talk about my daughter. Her name is Sophia Bijou Valdez. She is now 3 and a half years old. On October 23rd, 2012, she was diagnosed with Acute Lymphoblastic Leukemia (ALL). We are currently on week 3 of Sophs first round of treatment, so having started this blog a bit late, let me catch you up on how this whole mess started.

Sophie, up until now, was one of the most rambunctious and playful kids I have ever met. She loved going to the park, coloring, going for walks.. All of that stuff. She never was much of a fan of movies or TV aside from ‘her shows’ which consisted of PBS morning kids programming… a daily ritual. She was never a sick kid, and even when she did have a cold or any illness, she never let it keep her down. Still running, jumping on the bed, still playing and going 100 miles per hour.

On the weekend of October 20th 2012, Sophie started complaining of pain in her jaw.. She explained it to us as her face hurting. We thought she might have a headache or possibly be coming down with an ear infection.. Although neither of those things had ever happened to her.

Of course, your kids always get sick on the weekends, or after DR’s normal hours, so we decided to wait it out until Monday and make her an appointment if it persisted. It did. Saturday she developed a fever and was still in pain. We suppressed the symptoms with the usual Tylenol or ibuprofen dosage.. It helped for the time being, but by Sunday she was in real and terrible pain. She had stopped eating (she loved eating) because of her face pain, which by then we understood was in her jaw. So we decided a trip to the ER was in order. She had never been.

We arrived at the ER about 9 or 10 Sunday night. One of the first things they decided to do was draw labs. Blood. The nurses were nice and helpful, but terrible at drawing blood from a toddler. She was poked upwards of 5 times and had one blown vein before they got a good draw. This was traumatic for her as she had never had anything like this happen to her. But she liked seeing the blood.

The nurse would come back about midnight to tell me that they couldn’t find anything wrong with her. But her labs were of some concern and she wanted to send us home and follow up with our pediatrician in the morning.. This was a red flag. I asked what was concerning about the labs, and she said it could be a number of things.. One being leukemia, but not to worry about that yet. So the next day, 9am sharp, the pediatrician called us and said come in so she could take a look.. Another red flag. The dr said that leukemia was not a concern to her, she said it was most likely an abscess in sophs jaw that was causing the pain and infection that caused the fever, so she wanted to admit us back to the hospital for a cat scan and other testing.. So we went. Red flag number 3.

By this time we were pretty startled but confident in the dr’s opinion of the matter so we went for the tests. She was admitted to our local hospital at about 5pm. And tests were run. Cat scan, labs, vitals.. Then we waited. They drew blood multiple times saying they wanted to double and triple check their findings.. And then we were left alone for a long time.

We became increasingly worried as the time passed. By about midnight the nurse came in to tell us our pediatrician was coming in to talk with us. No scheduled kids dr comes in at midnight to ‘talk’ to a family.. So the anxiety ensued.. My wife became incredibly worried when she overheard the nurse at the station mention the word oncology on the phone.

You see, my wife lost her mother to breast cancer about 5 months ago.. So all of these blood counts and tests were eerily familiar.. But our little girl can’t possibly have cancer… Right? No, no way.. Something funky, but NOT cancer..

Finally the dr arrived. She came in the room and closed the door. She sat down and started to explain…

She apologized for not sounding more sincere about our concern in her office. She continued by giving us the news… Or rather dropping a bomb on us.. “I believe your daughter has leukemia.” She said. “The C-scan came back negative. Nothing wrong in her face or jaw.” She went on to tell us that she has no idea why Sophie’s jaw hurt, but it did lead them to finding the cancer in my little girl, so if not for that, then who knows. She told us they could not officially diagnose her in our hospital so she was going to rush us to Denver in the morning at 9am to children’s hospital Colorado for further testing.

As you can imagine, or if you are or have been in a moment like this, tears came in a flood. We could not believe it. How in the fuck did our little girl go from headache to cancer in 2 days.. No, no way. Wrong. Not possible. But it was…

9am the ambulance was ready. My wife rode in the back and I followed in our car. We live about 2 hours away from Denver in pueblo CO.. And that was the worst 2 hours of driving alone in my life.. Thoughts raced, tears, all of the worry and wonder surrounding the situation.

The dr’s at CHC wasted no time in getting us in, roomed and met. Within a very short amount of time they had Sophie in surgery for a bone marrow biopsy to confirm the diagnosis.. And they did. She was looked at and poked and stuck and all kinds of terrible shit. They have her a spinal tap or lumbar puncture to check if the cancer had moved to her spine and brain. Fortunately it had not.. But they have her a form of chemo anyway as a preventative measure.. All in all we were at the hospital about a week and a half, two weeks.. It was all so fast that we really didn’t have time to soak in what was happening. By the time we left she had two surgeries, one to instal a central line to sophs chest.. A medical port that she will use to receive treatments and some blood draws, meds and other such stuff. She had, I think, a total of 5 rounds of chemo and numerous blood draws and other tests.. It really was a whirlwind.

To date (week 3) Sophie has had one chemo treatment a week, and as far as we know, that will continue for a while.. But thanksgiving is week four, and the end of our first part of treatment, aptly titled ‘induction’. Sophie is on a terrible variety of medications to help and combat the effects of chemo. The worst of which, being dexamethazone.. Or steroids.. It has some awful side effects and I am so happy for her to be off of them come thanksgiving. But, the full treatment schedule will last about 2 or 2.5 years.. So this is going to be a long, terrible road we have to travel. Fortunately we have (or so we recently found out) a huge and amazing support system for our journey.. My little girl is being so tough and brave and willing to take this on, and that is good because she has to. She and we have no choice but to keep fighting this beast.. ‘Kill the germs’ as she puts it.

Ill write more about what we have gone through and keep you up to date on what we encounter in the future, but this about brings us up to speed.. There is so much more I want to and have neglected to say, but that will be another post.. Until then, my best wishes to anyone who has ever gone through, is going through, or will have to go through this, and good night.

-M