The end of ‘Induction’

Today is the last day of induction for Sophie. Induction is the first part of the treatment roadmap. We ended induction with a trip to Denver for an outpatient procedure that included a bone marrow biopsy, a lumbar puncture (spinal tap), labs and a chemotherapy called methotrexate.

This has undoubtedly been a tough first month.. The dexamethasone was hell, but she finally took her last one of those last night.. The DR said the effects of it should start wearing off within about a week. She should start to regain her ability to walk soon. It sucks seeing your kid like that.. Like I said, she went from running up walls and doing flips on the grass to barely being able to place one foot in front of the other on a flat surface.. But thankfully that part is over now. She also gets to quit taking the ranitidine and the nystatin, so all that she needs for the time being is the septra on the weekends. Thank goodness.. But they did say that starting with round 2, she will have a new list of meds to start taking.

This procedure went great, she is in recovery right now.. And then we get to eat some food. We have just one week off before she starts round two of treatment.

It is called consolidation. And it begins next Friday..

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Just out of the procedure. Still out from the propofol.

The Devil in Dexamethasone

For the first 4 weeks of treatment, Sophia had to be on a drug called dexamethasone. It is a type of steroid. This has been the most horrible medication that she has thus far had to take. We have been told that she may have to take it again in the future, but as of now, the end of the induction phase of treatment also means the end if the steroids. I am so thankful.

These things are crazy awful. They have so many horrible side effects, and many people think (myself included) that they are worse than the chemo. For one, they make her insanely hungry.. all the time. For instance, for breakfast she might have a PB&J sandwich, a couple bowls of cereal, a plate of chicken nuggets and a bowl of applesauce. It seems that no matter how much she eats, it is never enough. She will eat huge amounts of food, and complain of being hungry minutes later. We have moved to an organic, free range, whole foods, hippy dippy diet. So the food options we have for her are in some way healthier than most.. but all she has any desire for this last month is food.

Among the other side effects which include anger, constipation, and appetite and water weight gain, is loss of motor skills.. She has been having a lot of problems keeping her balance or holding things. Walking up stairs, and getting in and out of bed or the car.. We have to watch her when she goes to the bathroom so she doesn’t fall over.. and that sucks. She has taken a couple of heavy spills. One that even knocked the wind out of her.

It is a complete 180 degree shift from the girl she use to be.. She had amazing coordination and timing. Now we have to help her walk through the bedroom, or sit on a stool. Her face is very puffy and she has the buddha belly, some of the other side effects of this medication.. I am SO happy that for the time being, thanksgiving is her last day of having to take these pills.

Day 22. I am thankful that dexamethasone is no longer going to be on our ‘meds-to-administer’ list.

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Neutropenia is a bummer..

For those of you that dont know what Neutropenia is, click the word to find out..

Due to the Chemo and meds, Sophie is considered ‘Neutropenic’.. it means she has absolutely no defense against any type of infection or illness.. no immune system..basically a common cold will have her hospitalized. She cant eat leftovers, she is suppose to stay away from raw or unwashed veggies and fruits, even yogurt.. her body cannot even regulate beneficial bacteria like pro-biotics.. all causes of possible infections for her.

I should mention that we have to be insane germaphobes now.. Lysol, Clorox wipes and Hand sanitizer are our best friends at the moment.. we have to do EVERYTHING in our power to prevent any type of illness in our home due to Sophs lack of immune system.. Tomorrow morning we are having our heating/air ducts cleaned, not only because they are most likely disgusting, but because a lot of bacteria and germs and dust and pet dander (you name it) can be flowing around in there.. so in short, our house and everything in it have to be decontaminated.. all these extra precautions that you never think of..

The day before yesterday, our youngest son Jagger (8mo) came down with a cold.. We all had to have flu shots and they gave us the ‘dead virus’ version of the immunization.. so thankfully it is not the flu.. but an illness nonetheless.. So the struggle right now is that we have to sort of quarantine Sophie in her room, and keep the baby in the opposite end of the house. My wife, son and I have been wearing those medical masks like we are afraid of SARS or something.. we have even been wearing them while we sleep.. I have been sleeping on the living room floor with sick baby Jagger, and Shay in the bed with Sophie.. i dont think the kids have even seen each other in the last few days.. but that is what we need to do at the moment.

Thankfully Jaggers pediatrician allowed him to be on an antibiotic so hopefully the possibility of contagion is no longer a worry.

As long as we can keep Sophie from getting sick, she will be home for Thanksgiving. IF she happens to come down with a fever or runny nose or something.. i think we will be eating turkey in a hospital room, but it is looking like that wont happen at the moment. Thankfully.

The Beginning (pt. 2)

I suppose I should elaborate more about our initial hospital visit and what has been going on since then.

We stayed at Children’s hospital Colorado for a little under 2 weeks. Sophia’s diagnosis was confirmed our first day there. Tuesday. The first thing they did was put her in to surgery to do a bone marrow biopsy. They also drew out spinal fluid to see if the cancer had made it to her spine and/or brain. Fortunately, it had not. I believe they call it CNS 1. If there were traces if cancer in her melon, it would have been CNS 2.

All in all, sophs diagnosis is the most common firm of childhood cancer, with none of the even-more-awful frills or add ons. Not to say that this is in any way a good deal, but if we have to have a shit situation handed to us.. It is the best of the shit situations…

The success rate for this type of cancer is very high. We have been told anywhere from 80%-90%. There are so few cases of child cancer compared to adult cancers, that the treatment process that they detailed is incredibly apt to work. But just the same, when this happens to your kid.. however good the odds.. All that runs through your mind is “my baby has cancer, cancer kills people, and my baby has it.” Not a good outlook I suppose, but what else are we suppose to think? It’s the initial shock, you know?

I should mention how incredible this hospital is.. Phenomenal. The staff is so great, the accommodations are top notch, and the doctors don’t fuck around. When we got there, the oncology floor was all but full, but they quickly made room (ample room) for us, and wasted NO time getting to my baby girl. I couldn’t have been happier with their service. And no, they didn’t pay me to say that..

So, during our stay, Sophie was officially diagnosed, endured 2 surgeries, and had a total of about 5 chemo treatments, one blood transfusion and one platelet transfusion. I feel like that is a lot for a 3 year old to handle, but she did.. with grace. They consider the last day of hospital treatment as day one of her official treatment plan. So we begin. A full 2+ years of this..

We are now entering week 4 of treatment, and she has since had one more introthecal (spinal tap) treatment and 3 rounds of chemo. This next Friday, the day after thanksgiving is her end of what they call ‘induction’ the first phase. It ends with another bone marrow biopsy and spinal tap. From here we get to officially see how the treatments have worked. From the weekly blood tests, they say it is working great. But again, we will only be one month in to a couple of years of this. All we can do is remain hopeful. I suppose that is all anyone in a situation similar to this can do. You hope for the best. She is such a tough cookie in dealing with it all. As much as she keeps saying “this sucks” she has not lost determination. She takes all of her meds on her own. She cries, but goes to the doctor and gets her pokes and chemo and blood draws and just goes through with it with very little resistance. She knows she is sick and she knows it is serous. We have not kept anything from her. But her understanding is, I’m sure, limited. She says things like “I just can’t give up” and “we have to kill those germs”. It is amazing to see her deal with this.. heartbreaking and amazing. But on we go. I am hopeful that in a few years, she us going to understand what she did. How she beat cancer. I don’t know if it is denial, or faith, or what.. but I know that she will beat this.

She just has to…

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