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..

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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.

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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.

 

 

 

Consolidation with a smile.

On friday our day started at 5am. Sophs appointment was in Denver at 7ish, so we make the two hour hike before dawn to the hospital.

We began the portion of treatment called ‘consolidation’. It is an 8 week stretch of meds and LP’s.. and I’m not talkin’ vinyl here.. That stands for ‘lumbar puncture’ better known as a spinal tap. I have written about these before, but what they do is use a drug called propofol administered by the anesthesiologist to put her out. I should mention that my wife doesn’t like to be in the room for this, it is scary. Sometimes Sophie starts twitching or gasping her eyes might roll back, but propofol works pretty quick, so she goes out within a few seconds. Anyhow, the procedure is also pretty fast. They stab a needle in to the base of her spine and pull out some spinal fluid, then they replace the fluid with a chemo called methotrexate. It’s job is to help prevent the cancer from moving in to her spine and brain..

So that is quick, they bring her in to the recovery room and she wakes up within about 10 or 20 minutes.. Although this time she woke up almost immediately. Too soon I think. She was very out of it, which isn’t normal for this procedure.. Slurring words and such, but it went away as she came to. About 10 minutes and she was okay.

Then they administered her last treatment of vincristine, another chemo. That one went in her port. (The surgical implant in her chest) an that was that. Within about 20 minutes we were in the hospital cafeteria eating pancakes.

She has to have 3 more LP’s. Every Friday through the end of December, so it is 5am drives every week for us..

The other part of the first 4 weeks of this process is a pill form of chemo called mercaptopurine or 6MP for short, that she has to take every night on an empty stomach. She can’t eat for 2 hours before taking this due to nausea, so the idea is to have her sleep through the immediate side effects. This stuff is designed to drop her good, growing blood counts back down to not okay levels, so there is a chance that she could be neutropenic again before the end of the month. But this drug stops on the 27th of December and then we go on to the next 4 weeks of consolidation.

She really is taking this all pretty well, Friday she had 3 separate forms of chemo and it didn’t even get to her. She ate and played and was merry. She does know what is happening tho.. For instance, her hair is spotty.. There is more there than has fallen out. It has got really thin and you can see some small balding spots.. But it is hanging in there as much as she is.. but my wife said out loud that we should shave it again, and she turned around to us and said “Why? Because it hasn’t all fallen out yet?” Haha! She just knows things man.. and I don’t know how she keeps in such good spirits with all of this going on.. But she does. I’m very thankful for that. Goodness knows that I would be a lot less agreeable if it was me in her shoes.. Damn kids and their smiles.. 🙂

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Just before her procedure.

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About 30 min after her procedure.

…night and day