What We Learned

So what exactly did we find out today? Nothing. Okay, so that's not entirely true, but that is kind of what it feels like. So let me try to use my amazing psychic abilities to anticipate your questions.

Are they going to do chemo? Maybe, but not right now. Her immune system still hasn't recovered enough from radiation that they would even begin to feel comfortable assaulting her bone marrow with Chemo.

So, what are they doing? They took her blood to test her immune system as mentioned above. They also took some spinal fluid to see if there are any cancer cells floating around in there. She is just inside line between what they consider a serious case and a not-so-serious case on the not-so-serious case side.  They are also trying to decide what needs done because the vast majority of medulloblastoma tumors are in children so they are trying to "Extrapolate" aka guess what should be done in the case of an adult. There just aren't enough cases of adult medulloblastomas for there to be any conclusive steps to take in order to ensure the best chance for survival.  that leaves us with a benefit vs. harm question. If there are cancer cells floating around inside her fluid then we will need to move forward with chemo asap. If not, I don't know.

But, wasn't her scan clean? yes, but it only shows things that are visible. We don't know what is going on microscopically. Additionally the doctor said that these tumors have about a fifty percent chance of coming back within 10 years. Not only that but medulloblastomas will sometimes show back up in weird places outside the brain (liver, lungs, etc.) which is different from most brain tumors.    

We feel kind of "Yuck" about all of this, but it is just another mountain that we will have to surmount as best we can. Not what we had hoped, but not a surprise either.

Nervous

I'm super nervous this morning. In a little while we will head down to salt lake to discuss chemo. It feels more like we are going to sentencing hearing rather than a doctors appointment. Maybe I should where a suit and tie and contact a lawyer ;0P

But seriously, I'm afraid because if they decide to do chemo, especially if it's inpatient, it's going to feel like we are back to square one. She has made LOADS of progress in all areas since we finished up radiation and I'm terrified to have that all stripped away. Yuck!

Well here we go again for another adventure in this crazy journey.  

Facing the week ahead.

Well, this week we will meet with the chemo doctor. Katrina, desperately want to get back to work and her biggest worry about Chemo is that it will set the date for her return back.

Now that radiation has been over for a while she seems to be getting stronger all the time. Her stability is improving and the stubble that is coming in on her head is getting  to where it feels pretty prickly.  We've been kind of in a holding pattern since radiation ended. Regardless of the outcome of her appointments this week it will be nice to be moving in one direction or another.

Best News in Three Months

As Katrina mentioned in her post Her MRI scan came back clean. Not just good, but Completely Clean! The Doctor said the little bit of tumor that was left has melted away. We are thrilled! After three months of bad news and trials we got the best possible news we could hope for at this stage.

So, what remains to be done? She needs to work on getting her energy back up. Her balance continues to improve as well as her speech and cognitive ability. We meet with the Chemo Doctor on Wednesday of next week to see if they still want to do Chemo just as a precaution. For the next couple of years we will have quarterly scans and follow up appointments. Then those will slowly decrease in frequency until she survives the 10 year mark.

She is doing more things around the house and I'm starting to have to keep a pretty close eye on her to make sure she isn't doing too much. We've also been getting out and doing some Geocaching which we haven't done very much since she started school to get her masters. It has been a good way to get her out of the house and walking around a bit.  We also started H with her own geocaching account so that she can start keeping track of her own finds. She has tagged along with us since she was born, and she mostly just likes going to new parks, but I figure she's old enough now to understand what we are doing so she might as well have her own.

MRI

I had an MRI today. Dr. Schmidt said it was a clean scan. I hope it means no chemo!

This time of night

I hate this time of night. Mostly because of what happens. You see, this is the time when every thing falls away.I feel like an actor who suddenly finds himself alone on an empty stage in a dark and empty theater. The craziness of the production is over and he is very much alone and lost.

All the things that keep me rushing all day are over. The thing that was keeping my mind busy after everyone else is asleep is done and the loudness of the silence in our home seems oppressive in contrast to the madness of the day.

I find myself sitting face to face across the room from my worries and fears.They have waited patiently all day and before I rest they insist on reminding me who they are and what they represent. Tomorrow or the next day or the day after will I suddenly find myself facing the world alone? The truth is I don't remember how. Will our finances continue to work out like they have, or will next month be a mess. Are the kids doing okay. Am I doing the things I should to help them through. Is Katrina doing okay. She struggles with this emotionally a little more each day. Am I doing enough to help her.

They each wait their turn and say "hi I'm worry # 32 and I'm still here."

That's why I hate this time of night. My defenses falter and I find my weakness exposed. Alone in the empty theater before I lay myself down for a handful of hours sleep.

She did really well today. She ate quite a bit, relatively speaking.  Hopefully she can keep it up, but it seems to go in rounds.

Today was kind of crazy.

I suppose I should start with an update. Things went good today. Katrina ate and did well. She has even started trying to do some of the house work. Little things like rinsing dishes and changing diapers. I don't mind her helping more for her sake than mine. She is the type that just has to do things, and as long as she doesn't get to crazy with what she tries to take on it should be good therapy. With the potential for chemo coming up I'm afraid that all this progress maybe short lived. Kind of a tease before it's yanked away again.

I know she's super worried about chemo as well. She tears up any time someone mentions cancer and I think she trys to hide the signs that she has cancer when we are out in public. I tell her that her bald head is a badge of honor and that she has gone through a lot to earn it. I don't know if it makes her feel any better but I really think she should be proud of what she has done and the battles she has fought. She has done great.

It was kind of a crazy day today. This morning I discovered that the sewage clean out plug in our basement had become dislodged. So every time we drained the tub or flushed the toilet part of it was leaking out. I don't know how long it has been like that but I suspect it has been since just before or just after we got home from the hospital. I might not have caught it if I hadn't bathed this morning before I went down stairs. To make a long story short I ran to a couple of different plumbing stores modified some parts to build a plug that would work since the threads were rusted out and then cleaned up the mess. It took the better part of the morning. It also explains why I couldn't get the house to stop stinking. I don't know if anyone else noticed it but I sure did.

This afternoon we took the kiddos to the pediatrician for some minor things that we needed to get them in for but haven't been able to until now.  The doctor wanted a urine sample from our daughter "H" and she adamantly refused to give one so we got to bring stuff home to collect one. We hadn't been home ten minutes before we were running back to the doctors with a fresh urine sample.  Kids sometimes.  

Thursday

I'm going to write before Scott tells me to.

I have been eating better, but I think it is only the medicine. That is okay. I need all the food I can get. Last I weighed 95 lbs. My goal is to get over 100.

I want to go to bed now.

Wednesday

I have emptied all my e mail and now Scott wants me to write on the blog.

I meet with the chemo guy on the 28th of Sept. I really hope he says I don't need it, but I think he will say I need it.  I go for an MRI next Wed.  and meet with Dr. Schmidt. If he says I don't need chemo, then I may not get it.

I am trying to gain weight so I am not so skinny. I try to eat good. The WII Fit still says I am underweight, though. So I will eat more if I need.

Busy Busy Busy

It seems like we are so busy all the time. Just moving from one thing to the next.

So Her blood count has improved and although it is still bad hopefully we've turned a corner with it. Her appetite is still doing well too so hopefully she starts gaining weight. 

The university called today and set up an appointment for an MRI followed by one with Doctor Schmidt (our nuerosurgeon) next week.

harder to do this

It's getting harder and harder to remember to blog as the days have started to just kind of smudge together. She woke up at 3:30 this morning with some nausea and then promptly threw up after eating breakfast.  After that the rest of the day went pretty smoothly.

Now, I don't know if her appetite is improving or she is forcing herself to eat more, but she has been consuming more. And that is defiantly a good thing. When I laid down in bed the other night I put my hand on what I thought was her bony hip, it turned out to be her thigh. That should give an idea of just how skinny she is getting. Thighs just shouldn't be bony.

Things are going okay. Her balance was a little off today and we had a rough start with nausea, but she did pretty good in that department the rest of the day.

Lots of little meals.

I'm trying to get Katrina to eat lots of little meals as opposed to trying to eat three normal meals and then throwing up. It went pretty good yesterday. I'm also giving here a multi-vitamin which i cut in half and give her in the morning and at night. I'm wondering if some of the complications that we have seen over the last week have been from malnutrition. Hopefully this new plan of attack will conquer it.

On a separate note we don't have anything going today. It's weird not to have some sort of appointment or some other medical related thing to do on a week day.

An Agonizing Decision to Make

                 Last night was long and it caused me to reflect on how things are going. I realized that I haven't been and won't be able to give the after school program as much attention and devotion as I should. I also realized that I wouldn't be able to give my wife the attention and devotion that she deserves right now. Therefore, I put in for a family medical leave of absence today with the intent to return sometime in late October or the first of November if everything goes as planned.

                    It was an agonizing decision to make. but when it boiled down to three factors. First, I really feel like my inability to function at 100% has been holding the program back as it gets going this year. Second, I am concerned about what illnesses I might bring home to her with her compromised immune system ( I have had multiple loved ones battle cancers of all different sorts and in the end it has been the compromised immune system that killed them). Third, while I was waffling on what to do I asked Katrina what she wanted. Tearfully she told me that she wanted me here with her but that she didn't want me to miss work.  That cinched it, my priority has always been her so the second half didn't matter.  

Tales from the ER

Yesterday after Katrina woke up from her nap she was having a bit of trouble walking on her right leg. If she put any weight on it it just seemed to give out. Additionally her left Eye was dilated really big and didn't seem to be reacting well. After a quick call down to huntsman we were off to the ER. we spent the night there being discharged at 5:30 this morning. They never really figured it out, but her symptoms slowly got better. We discovered that she also had a bit of a fever which is another thing they told me last week I'd need to take her to the ER for that went up and then back down while we were there.

Like I said, we are home now and she seems to be doing pretty good. She even wants to go to rehab today so away we go for another adventure.

The End of Radiation

Well, we've done it. We have completed her course of radiation. Her blood work came back with a critical white cell count again today so the doctor wants us to get more done in a week. Fortunately, we only have to go to our regular doctor for that and not all the way to salt lake. She is still getting sick once in a while and
I hope that since she is done that will go away. It was kind of hard to say goodbye to all the ladies down there. 

So where do we go from here? Towards the end of the month we meet to discuss chemo. For now we get a little bit of a break. Although, I am anxious about what is going on inside her head. Is there any change? It's just one of those things where you just have to wait and see but I wish we knew whether the radiation worked or not.

Labor Day

She is still doing pretty good. She had a little episode of nausea at my parents barbecue and I think it embarrassed her more than anything. I keep telling her that they all understand, but she is still pretty upset about it.

As for me, I've taken up the game of golf. My mother-in-law is thoroughly convinced that this means I have finally snapped under the stress of all this. She has even gone so far as to recommend several fine sanitariums where she thinks I would fit in nicely. Okay, maybe she didn't "actually" recommend any hospitals for the insane but that doesn't mean that she doesn't want to. I'm not any good at it but it has been really nice to get out and do something just to get away.

Work starts for me tomorrow and I'm a little worried about that. I want to be able to take care of everything here and I don't know that I can be as functional there as I'd like to be. Still, I don't have much choice.

The last day of radiation therapy is tomorrow.

Better

She did loads better today. She ate a bunch for break fast; eggs, hash browns, and bacon. she even ate a few other time through out the day. All told, I think she ate more today than she has over any couple of days last week.

sick part V

Well she lost about 2.5 pounds which brought her down to 93.9lbs. Not as bad as it should have been, given the small amount she has eaten this week. The changed her meds up a little and hopefully that will help her start feeling better. Her white blood cell count is now in the "Critical range." which means a sprint to the emergency room for any fever, as well has extra careful hygiene and limiting visitors.

Sick part IV

things are not going good. I anticipate a big drop in weight tomorrow at weigh in.  She didn't eat hardly anything again today and what she did eat she threw up most of. I'm wondering if she isn't beginning to lose muscle mass. I escort her around by the arm and i noticed today that the muscle felt smaller than it used to. I don't know why she is getting sicker when she should be feeling better. We meet with the doctor tomorrow so hopefully we'll know more then. I'm scared.