Doctor's Appointment Update 8-9-11

We had an appointment to follow up with the Chemo doctor today. Things still look good with no new growth. He white level counts have climbed two tenths and she weighed 99 pounds.

We had an opportunity to visit with my Cousin, His wife and My aunt and Uncle. My cousin had a farming accident Friday and hurt his hand pretty bad. He seemed in good spirits. Please pray for him and his family as they go through their struggles right now. In farming your hands are are pretty important things, and I know that they'd really appreciate the prayers. I wish that Katrina and I were in a better position to help them out some how. They are just good down to earth, friendly people, whom I really feel it a pleasure to call family.

An update on my brother, he's doing well. They seem to have the brain swelling and blood thickness under control He's up and around being a nerdy teenager again.

Friday Update 5-13-11

We found out after the testing with the rehab lady that Katrina preforms well mentally until there is an outside distraction like a time constraint or other things going on. Then things don't work so well for her. Our insurance authorized eight sessions so we'll have lots of homework in between.

We also met with the chemo doctor again this week and her MRI still looks clean. I was really worried going in though because our luck has been touchy lately.

We've also had some very generous gifts given too us. Although we don't know who you are we want you to know we are truly grateful. Thank you.

Chemo Follow Up 12-28-2010

We had a follow up with the Chemo-therapist today. He showed us Katrina's MRI from last week side by side with the one from September. They looked almost identical. He said that given that he blood counts when pretty low during radiation she would probably do even worse with Chemo so, given that their hasn't been any change in the MRI, he doesn't see any benefit to risking that when it may not be needed. So for now we'll just watch some more.

10-26 Doctor Visit Update.

They've pretty much decided to watch and see what the cancer does, instead of jumping into chemo. We have an MRI and followup scheduled next month. If the cancer doesn't come back it doesn't sound like they plan to do chemo. Also, Her white blood cells are back in normal range, although she did lose a little bit of weight. Things are going good. That is about the best we could have hoped for.

Nerves

As the first of November draws nearer I find myself looking  forward with trepidation. I'm worried about how she'll handle returning to work. I'm worried about how I'll handle returning to work. I'm worried about the doctors deciding to do chemo and setting us back. Our insurance allotted rehab appointments run out next week and I'm worried about how things will go. She has made leaps and bounds of progress thanks to rehab and soon we'll be on our own.

We have some Doctors appointments next week so unless something negative happens look for another post later next week.

Spinal Tap

Her spinal fluid did NOT have any cancer cells in it. Now we just have to hang in there, keep at therapy, and try to gain weight until we go back to meet with the chemo folks later this month to discuss what we are going to do.

Nothing New

I figure that I ought to post an update just in case anyone is wondering. No news so far. If we haven't heard anything we'll call on Wednesday to find out about the spinal tap. She is doing good. her hair is coming back slowly. She has been reading a lot lately which is a good thing as far as exercising her eyes. 

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.

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.