Feb 25-2008

I am sure by now (if you are still following me) that blogging on this site is proving to be a therapeutic outlet for me.

I hope I am not overwhelming or annoying you. I will do my best to try to get to the point.

We have some good news! Logan had her MRI today and it seems that the swelling has gone down, the tumor has collapsed on itself (think deflating balloon) and we are ready to begin radiation treatment. Dr. Steinbok is happy and we couldn’t be more grateful to him.

Sadly,however, as it goes in the world of cancer though there is good news and then it is followed by a bit of bad news. The bad news  today is that her MRI showed another new small tumor on the base of her spine. At this time that can’t say if it was always there and we couldn’t see it because it because of the scar tissue fro other surgeries, or if it is a new tumor that has grown in the last week. Dr. Steinbok can’t be sure. He knows that there was tumor mixed in the CNS fluid and into the spinal cord but this spot is new on the scan.

Basically, it doesn’t matter- when pathology  comes back it will help us to know if we are dealing with something that is more aggressive. Or it won’t. Either way it doesn’t change the treatment plan, it just adds worry to an already dire situation.

Today we are being moved from the surgical ward to the oncology ward. It is sadly a bit like going home, it is where our people are.

The dietitian, Marlene was in today and she did a great job solidifying our concerns about Logan’s weight and eating habits. Logan is only in the 10th percentile for her age group in weight. She is now only 65 lbs She has lost 13lbs in 18 days. This is very concerning and feel strongly that Logan may not be able to tolerate radiation if she continued to lose weight at this rate once therapy begins.

  I am heartbroken to write that we will be forced to insert a feeding tube tomorrow and Logan will be nourished through this tube for an indefinite period of time. This tube will be inserted up her nose down her throat and directly into her stomach. It will be yellow and as Logan said today- It will be ugly.

  Jared and I will be responsible for feeding via the tube by syringing liquid nutrition during the day and by hooking her up to a slow drip pump (similar to an IV) at night. Logan is completely devastated about the tube and feels like a failure because she can’t keep solid food down. She is embarrassed to have to have this thing hanging off her as another reminder of this disease and honestly she is just a bit mad at the world today.  I, myself,  am trying to be objective. On one hand I am relieved that she will be getting some much needed nutrition and we can stop the endless cycle of s arguments about meal, but on the other hand I am completely crushed by this setback. It is another invasive procedure and another thing cancer has taken away from her-  the luxury of food. We both cried tonight. The hurt seems never ending.

On a good note, I wanted to share that through my endless research and reading (the internet is not a cancer mom’s friend) I found a study seemed promising for Logan. I printed off the info and gave it to our oncologist. She is presenting it at tumor board to get some feedback. It is a chemotherapy regimen that seems pretty aggressive chemo but the results have been outstanding and there is a girl on the study that has a history similar to Logan and she responded extremely well to this treatment. If the doctors agree that it seems as promising as we think it is, Logan could be a candidate. The study originated in Italy and although Logan could not participate in the actual study she may be able to receive the same drugs and dosages that are documented.

  There is some concern, so our plan would likely be to test the chemo for 2 months see how she tolerates and then go from there.  We will then decide if we move forward with chemo and then do radiation or do radiation only and eliminate the possibility of this chemo. It is terrible when your choices are both not great but my heart tells me to try chemo once again. Radiation scares the crap out me and maybe this would buy us some time before we have to use it.

Today was a big day for us, presenting this chemo regimen, and waiting to hear feedback from the doctors has left us emotionally drained. I think we are getting to a point of exhaustion that we’ve never experienced before. I have never felt so tired in my life. Not even after giving birth.

I can only describe it as being in a dream state- but more of a nightmare really. I have this feeling like someone is chasing me and they are only a few steps behind me waiting to grab me from behind. I am foggy but antsy.  This absolute roller coaster of emotion actually makes me feel physically ill and it is like nothing I have ever experienced before.

Fear is around every corner, every blood test, every scan, just waiting to jump out at us but happiness comes in waves as well. I find I feel joy seeing the spirit of these sick little kids. They have so much to bare yet they are still so innocent, trusting, and simple. To see the world the way they see it is one of the only gift in this difficult time. Witnessing Logan and all the other children fighting for their lives without pity slaps me in the face daily.  It’s pretty hard to feel sorry for myself when I look at them.

We also have a lot of love getting us through. I have to keep telling myself to focus on the good.

I will end this blog with a story. I could tell so many. These walls are filled with stories.

For those of you who know me, I have been blessed with the gift of the gab, actually, to be honest I just never shut up- and I talk to everyone. Anyway, last night I met a family from Victoria. They were air-ambulanced to Children’s and their 10 month old daughter (Eden) was diagnosed with a brain tumor the size of a golf ball. Of course they were beside themselves and consumed by shock when they got to hospital. I spoke to them briefly was completely terrified for them. I just ran into them again.Twelve hours after they arrived here Dr. Steinbok, Loggies surgeon began surgery on there tiny girl and after 7 long hours of waiting the parents got the best news ever. Dr. Steinbok got ALL the tumor out it  looks low grade and benign. It is too soon to tell say 100% but her doctors are already using the word cure for this little pumpkin. Amazing.  

Amazing and worth sharing. It may have been an ordinary and normal day for you but here at BCCH there was a miracle. A much needed one, in this building filled with so much grief and sadness and pain. It was a tiny miracle her name is Eden Grace (the name of an angel) and she has her life back.

Hope, and miracle moments like these help us get through the crappy days. Our miracle is just a work in progress and we need to be patient. I feel like posting a MIRACLE COMING SOON notice on our door.

Loggie is overwhelmed with the support you are giving to her. She enjoys looking at this site and seeing your messages. They are a good boost for all us to know we are not alone. As we were reading all the messages together  I asked  Logan if she ever wondered why. If she ever pondered how come happened to her and not to someone else we know. She paused for a long time before she finally answered. “No, mom, there is really no point wondering why me and why not someone else. If I didn’t have this cancer then maybe someone else would have to have it. I would never like knowing that, I would never want anyone I love to have to go through this. I’d rather just do it myself.”

What could I say to that- except I love you.