Been a while.. again..

As usual, it’s been some time since my last update. I figure, this is a long term illness, might as well be a long term blog. As far as we know, Sophia still has a couple of years before (with any luck) she is finished with treatment. I suppose an update every couple of months isn’t too bad..

So, what’s new? Well, you know.. Good days and bad days. More good than bad, thankfully. Soph is still taking a couple types of chemo (methotrexate and mercaptopurine) in pill form 7 days a week. Spinal Taps and vincristine infusions every 12 weeks. Other meds still include zofran, septa and now some nasal spray steroid to help with breathing at night.

This nasal stuff was brought on by a pretty big scare. Started out with a mystery illness that swept her up for a day or so.. This was in January. She woke up very dizzy and out of it. For some reason she was having a hard time putting words together. She just seemed very odd. Well, against our better judgement we let her attend school and about an hour in to it I got a call from her teacher saying to come quick. I ran..

When I got there, soph was really out of it. Her lips were blue-ish, she was having trouble walking and talking.. Very weird. I called her oncologist thinking that this was something very specific. Perhaps a weird drug side effect or something.. But they ended up being as stumped as I was. That didn’t really make me feel any better..

So, long story short, she ended up having to get a bunch of cardiology tests.. I guess the symptoms led them to believe that her heart was the culprit.. Something called left ventricular hypotropy or something.. I’m sure I’m not saying or spelling that right.. But the idea was that it was some side effect of the chemo. Had to have a few EKG’s a few ECG’s and a few other things over a couple month period.. Well, turned out the ticker was in okay shape. The tests were inconsistent and the cardiologist decided that instead of pressing the issue that she should have regular cardio checkups every few months and leave it at that.. So I suppose that is good. We never found out what caused the mystery illness, but it hasn’t happens since, so again.. Best to leave well enough alone. I guess..

That also lead to us seeing an ENT doctor. (the kind that work on ears, noses and throats, not the kind that work on the ancient tree people.) and that lead to the nasal steroid because of problems breathing due to tonsils and adenoids, not bad enough to require surgery yet, thankfully.. Anyhow, one thing leads to another and as far as it sits now, the docs are just gonna ‘keep an eye’ on all of that stuff as apparently none of it poses any immediate threat. Good news, I suppose.

Beyond that, things have been pretty smooth. She seems to like pre-school a lot. Her hair is growing back fast and spring is on the way, so hell, what do we really have to complain about, right?

Tuesday will mark the start of the next ‘hell week(s)’. Up to Denver for her next spinal tap, infusion and big ugly steroid burst. Her birthday is just one week away, and it sucks that she will be feeling pretty shitty for that.. But it’s only one week out of 11 for that junk.. Better than every 14 days like it was at the beginning. MUCH better.

So, that about sums up the recent goings on. I’ll likely post some photos of the procedure on Tuesday and definitely post some pics on her birthday. Gonna be the big #5!!

Damn kids.. Growing up too fast..

Goodnight, all. Until next time, be well.

The thanksgiving curse..

Been a pretty quiet couple of months around here. Since Sophie is on her daily Chemo at home and only has to do her spinal taps and infusions every three months, things are pretty relaxed for the time being. That is, up until a couple of days ago..

One year ago, on thanksgiving, she was taken to the ER for a high fever. I’m thinking this might be an annual thing because the evening of this thanksgiving, 2 days ago, she developed a high grade fever that landed her back in the ER again this year.

The fever was 102 at its highest, eventually giving her shakes and she also developed some breathing trouble. She was officially diagnosed with ‘reactive airway disease’ brought on by a respiratory infection. Sounds worse than it is, I suppose. They gave her a nebulizer (fancy breathing machine) along with some Albuterol for her breathing. She has to do that every four hours and then take a daily steroid (prednislone) as well.

Unfortunately, the fever persisted into today and she had to be re-admitted in to the ER for the second day in a row.. That magic number of 101 degrees.. 101.7, actually.. Damn you, 101.

Anyhow, we just got out. Waiting to hear back from the doctor at Children’s Hospital, but we can at least get her some Motrin to get the fever down now and with any luck, this will just run it’s course and be done with. We shall see..

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.

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…

‘Phuck Cancer’

January

Seems likes it has been a lot longer than it really has since I last posted. Little over a month, but I suppose a lot has happened in that time.

So, last thing I was talking about was the rash.. Turned out it was some crazy average child virus that Sophia somehow caught. Thank goodness it was not due to the last cycle of treatment, otherwise it would have happened every week. It did have the dr’s stumped, but when a pediatric dermatologist from the hospital had a look, he said it must be a virus and would go away in a week or so. We ended up having to use lidocaine like lotion on her though.. for those first 4 or 5 days, she only slept a few hours a night due to the pain, but as said, it went away and all was well.

She ended the last treatment cycle last week, and she is now currently one week in to a two week break before she starts Delayed Intensification. This last cycle wasn’t terrible, but I suppose it wasn’t great either. I brushed on the specifics a few posts back I think. The hardest part of this last cycle was the escalating dose of methotrexate. If I am correct in this, she started off with an infusion of 50mg and that was increased every week until her last dose last week of 350mg. Pretty heavy shit, indeed. She had vincristine every week as well.. But that has been the same since the start.

The methotrexate infusions didn’t make her terribly sick, as anticipated. Just a bit here and there. I have definitely noticed a loss of appetite. Big time. It’s like she wants to eat because she is use to it.. meal times, that is, but once she gets something in front of her it is rare that she will dig in. Little bites, nibbles and snacks, but she doesn’t really eat a full meal anymore. Sometimes.. but it is rare.

The thing that really freaked me out (I didn’t know this would happen) is that her finger and toe nails have all started falling off.. really creeped me out at first. I noticed that she was missing a nail and I thought she may have tore it off playing or something.. Then another and another and so on until I realized what was happening. They never told me about that one.. She just lost her pinky nail on her right foot about 10 min before I started writing this. We bandaged them up one by one. It doesn’t seem to bother her at all.. But damn, it creeped me out.

The next phase of treatment (delayed intensification) will be 57+ days. She starts on feb 25th. As I was told, days 1-22 will consist of another fucking steroid called Decadron. She will have bursts of 7 days on 7 days off for this period. Not as bad as that terrible month of dexamethazone, but I have really come to hate these steroids.. personally I think they are worse than the chemo.. luckily it is not a drug she has to take very often. She has to have an EKG before this cycle begins because she will have to take a medication called doxorubicin, and apparently this can effect her heart.. in what way, I don’t know. She will also get a chemo called pegasparaginase, and of course, our old pal vincristine.. The spinal taps will continue as well.

So there you are, that is about the skinny of what has happened and what will happen over the next couple of months. I promise to keep this blog better updated, I have just had a crazy month at work.. In a good way, but I have had little time to keep up with this. So I’ll try and do better.

My next post however, will be amazing news. We finally heard back from the make a wish foundation (Soph became eligible for a wish in January) and she is getting something pretty amazing.. But I’ll leave that for next time. 🙂

Good night all.

Rash? (Pt.2)

So they sent us home from the hospital last night. I suppose it is good that we didn’t had to spend the night.. But this is still getting worse..

The ER doctor said that it IS most likely a reaction to the methotrexate dosage, but since the rash isn’t accompanied by any respiratory problems, it is one of those ‘discomforts’ that can happen.. The rash has now spread throughout her feet, legs, hands and arms. The bumps have become more defined and are pretty painful.

They gave her a prescription for Hydroxyzine, an anti-histamine that is suppose to be stronger than Benadryl. It did help, she slept through the night last night, and it does seem to help relieve the itching.. But the rash is still growing. I think it might look worse than if feels. She is having trouble walking because the rash is all over the bottom of her feet, but other than that, it doesn’t seem to be bothering her much.

So, today we are waiting on a call back from oncology to see what they think about it. As far as we we told yesterday, since it is not messing with her breathing or causing any severe pain, it may be something that she just has to push through for the next 8 weeks.. So the remedy, as with many other side effects, is just to pump her full of even MORE drugs.

Lame..

Rash?

Christmas was pretty good. We had two weeks off from any hospital visits/procedures, other than the daily mercaptopurine chemo pill, and the septra on he weekends, Soph got to enjoy her short Xmas break. Great people came around to show us support, including a huge group of bikers who brought family, friends, a bunch of police and even Santa Clause himself to our house to see Sophie and give her some goodies. However, the roadmap started moving forward again on Dec 27th. That Thursday, she had pre chemo labs, passed her blood count requirements and started interim maintenance on the 28th. This new part of treatment brings us to something expected but not yet encountered during her treatments so far.. Infusions.

As I have mentioned in a previous post, this round she is getting methotrexate administered through her port. (Usually administered in her spine) Being as this is her first time having this drug in her veins, we are told to expect a few different side effects, also mentioned in a previous a post.. But currently, we are potentially encountering a very unexpected side effect.. A crazy rash..

As far as we can recall, we have done nothing different in the last few days, aside from the new method of receiving the MTX chemo and taking her Zofran in a bit larger dose, everything has been pretty normal, but last night she started complaining of foot pain.. Then itching.. It just got worse. She only slept about 3 or 4 hours last night due to the pain in her feet, and by this morning she had a full blown rash all over her feet. Tops, bottoms, toes.. The whole nine. Her feet are red, bumpy and itchy and it is continuing to spread.. Neither hydrocortisone nor Benadryl seemed to help it for very long.. If at all.

We called the clinic emergency number this morning, a number that is programmed in to our phones for things like this.. or worse. The doctor on call told us it would be a good idea to come in to the hospital to check it out, especially since neither of the two above mentioned medications seemed to have provided any relief.. So, seemingly, this could be a bad reaction to the chemo administered on Friday. We shall see.

So instead of hanging out at home and having a great Sunday, we instead made the hike to Denver so we could get this sorted out.. By the time we got here the rash made its way to her hands and arms.. And it is seemingly still spreading. Her upper extremities are not in bad shape yet.. But neither were her feet early last night, so this thing must be moving along at a steady pace. We are currently sitting in a room at the hospital waiting for the doctor to come in and check it out.. Obviously I am hoping that this isn’t something that will get worse.. But the problem I foresee is that this was the first of 8 weeks worth of this type of chemo, so if it is related to the new treatment.. What do we do?

Well, I’ll let you know as soon as I find out… But rash or no rash, it still seems to be a good time for funny faces.

Christmas Break

We went to Denver yesterday for another 7am procedure.. we live a couple hours away so have to leave town by about 5am for these things. Bad luck tho.. we found out when we got there her appointment was an hour later so we could have slept until 5 and left at 6.. HA! This was the last LP/methotrexate for the rest of the year (2 weeks). so we have a great Christmas break.

Starting on the 27th of December, Soph has to have labs drawn, and provided she passes her blood count requirements, she begins the next part of treatment on Dec 28th. They told us this next phase has potential to be REALLY rough on her..

as i have explained before, the LP’s (spinal taps) are a procedure where they draw out spinal fluid to make sure the cancer has not spread to her brain or spine. They replace the spinal fluid they take with a chemo called methotrexate.. well the next phase of treatment, she will be getting methotrexate in her veins. They will begin what they call an ‘escalating dose’, which means that at the beginning they give her a dosage and over the next 8 weeks that dose will keep increasing. This shit will have some nasty effects on her.. the usual nausea, vomiting, hair loss crap.. but this one is most likely going to give her terrible mouth lesions.. bloody, pussy soars in her mouth that will make her not able to eat or drink.. and they are very painful.. Basically, they will stop increasing the dosage when these soars start to get bad.. so in other words.. she gets pumped full of more and more of this stuff until her body cant handle it anymore.. then they keep giving it to her at that dosage..

so that is going to be pretty lame.. pretty lame indeed..

So far she has been on the lighter side of all the side effects that these drugs are suppose to cause, so i can only be hopeful that this is no different.. we shall see..

so that is that.. ill keep posting over the next 8 weeks and show the progress of this medication.. but i want to take a moment to talk about something else here..

Obviously, we all know about the tragedy in Connecticut yesterday.. First off, this is an awful ordeal..  My heart goes out to the families and friends of everyone effected.. That should be a given.. there is no reason a child should have their life taken, especially under a terrible and unnatural circumstance, as yesterday proved to be..
But i have been sort of upset about a few things surrounding the people who were NOT directly affected by this..

I dont have an opinion on guns and rights and health and all of that jazz.. well, i do, but im not going to push it out on to the world to show how different or similar i feel on such matters.. what DOES bother me is this, I have read so many posts and even had phone calls from family saying “hug your children tonight” .. really? tonight? Now, i am not saying that a situation such as this does not make me feel lucky and grateful that it was not MY child who suffered something like this.. but what i am saying is that i think it is even more tragic that it takes something terrible to make us realize how lucky we are.. whatever the subject. Like the husband who’s wife cheats on him and he realizes that he needs to have more time with her.. more dates and i love yous.. like the super storm in NY that wipes out electricity for months and now we are so happy to have heat in our homes.. There is NO reason that we should be thankful for our children last night.. we should be thankful for them EVERY night.. forever.

I hugged my kids every night before this.. I hugged them every night before the cancer, i hugged them every night because I love them. I hugged them every night because they are truly the only thing that matters in a crazy world full of things unknown.. and i will continue to hug them every night after this has blown over and we have all gone back to life as normal.

Be thankful for what you have everyday… for the rest of your life.

 

 

 

Pre LP

Sophia just before her lumbar puncture/methotrexate procedure.