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.

When I was a child my Papa was in a serious car accident. My grandmother died and he suffered a major head injury. This trauma left him with significant damage. It took away some of his ability to self regulate so he’d often do things very fast like eating and walking. Because his body couldn’t keep up with is mind he would often hurt himself or make himself sick. His name was Charlie.

 ‘Slow down Charlie’ was something you’d commonly hear members of our family scream out to my Papa. Over time it became an inside joke and something we would say to each other whenever one of us needed to slow down, recharge and refocus.

We have been telling Logan to ‘slow down Charlie’ for the last few days. Thank god she finally listened. We all need the break.

I think mentally Logan’s mind has caught up to what her body has been through. She is resting. We are relieved- rest equals healing right?

Doctor’s have been in to see her today, as they are every day, but today they advised us that they think she may have a minor problem with her swallowing and also her coordination.  Her abilities in her right hand seems to be declining. It is almost similar to someone who has Parkinson disease, shaky and unsteady.

Dr. Steinbok was consulted and he told us not to worry quite yet- pretty standard conversation between doctors and parents of children with cancer. I wonder when is the right time to worry?

We are going to do another MRI tomorrow morning to see what is going on. He thinks there may be more swelling than he originally anticipated and right now it is causing these new deficits. This is ‘best case scenario’. Worst case, this is a complication of surgery and she is now in someway damaged, or paralyzed permanently. 

The decision is keep her on the steroids (which makes her mean and angry Loggie) at a higher dose for few more days. The hope is the swelling will come down and we will see an improvement.

Night time seems to be the worst…I think she tries to be alert and strong all day for her visitors and then when nighttime comes and we are alone she has the freedom to collapse and be honest that she is not feeling well. Her headaches are worse at night and it worries me that she is not eating much. She is tiny and fragile and we worry about sustaining her energy and her weight. She is nauseated and complains about the nausea making it difficult to eat. All day long we suggest food but nothing appeals to her. It is frustrating, it so primal for a mother to feed her child.

I want her to eat and I am trying to encourage her to, but honestly this roller coaster of emotion is making my appetite dimish. There is so much anxiety. 

  The doctors keep telling me to put into perspective that she just did have had major brain surgery. I like everything to happen right now. Maybe I need someone to tell me to “slow down Charlie”

Her incision is healing up remarkably well (Dr. Steinbok is a master) but I also think  the reiki she has been getting from June and Grandma have been helping too.

On that note, I have a story to tell you about Reiki. For those of you who don’t know what it is- basically it is energy/touch healing and Logan loves it.

A lady by the name of June Hope has been committed to helping Loggie with her healing since day one…she has been giving Logan reiki and also teaching Logan how to give it to others. Apparently Logan responds well to Reiki and as such, asks for it regularly. June is considered a master of the technique and tells us that Logan has an innate ability to share this energy with others.

On Thursday night when we were in the ICU only about 4 hours after Loggie had come out of surgery (remember she shouldn’t have even been awake yet)  a little baby only 2 month old kept crying out beside Loggie. The stress of the crying  would cause this little babies heart to beat irregularly which made it seem like she was having a mini heart attack causing her to stop breathing.

We were all very upset as it was but being beside this baby made our situation even more intense. Alarms would go off and people would frantically race around. It was hard to Logan to rest and the situation was making me very uneasy and panicked. During one of the babies attacks, I looked over at Loggie  to comfort her. She had her left hand up in the air. It was full of tubes and she was barely able to hold it up on her own.

I thought she was scared so I asked her what she has doing. In the softest most compassionate voice she told me she was sending that little baby some of her Reiki.

I was speechless and in awe of her…in her weakest moment she was sending that baby her energy even though she had so little to share. 

This kid blows me away. I honestly believe she is so much more than my daughter and her purpose here is huge.

Being her mother is an honor and she is teaching me so much everyday.  

I have cried a lot these past few weeks and I am grateful to have some perspective. I spoke to June about how Logan could be so profound and how at times I feel so weak.

She explained how she saw our relationship.

 “I Imagine you standing in front of the creator and it was your time to come to earth. God was handing our life journeys brain cancer was pulled.  You were next in line. NO way. you said, NO, please I cannot bare the burden of  having such an awful disease in this life. Please choose something else for me. You thought you’d escaped.

Fast forward to years later, and Loggie stood in that very same line up where again the creator issued brain cancer. 

Only instead of fearing it Logan said “no problem, I can handle it”. Her only stipulation was that she needed someone to hold her hand, someone to care for her and be beside her through her struggles. That is why God chose you.”

June’s perspective really struck me. She is right, Logan is such a teacher. She has always show such acceptance and strength for her circumstances and she is here to teach me. I have so much to learn from her, I know that. How I wish now I could have pulled the brain cancer card instead of her. Watching her suffer is heartbreaking but watching her strength is also such an honor. This whole experience is truly bittersweet.

Just over a week ago I started this blog. Today, there is over 300 people that have joined this page to support Logan. Each one of you have joined us on this healing journey and we appreciate all that you are offering to help Logan get better. Thank you.