I think I may have been on a bit of a high myself last night when I posted about Logan. I was excited that she came out of surgery so well and I jumped the gun sharing how ‘great’ she was feeling.

The last 12 hours have been very tough for Loggie-.. she is complaining that her headaches are excruciating. She spend the night  screaming, crying and moaning in pain. We tried giving higher doses of morphine but that didn’t seem to help at all. It has been a very long night.

We spoke with Dr. Steinbok, this morning and he thinks she may have some blood or air pockets that have accumulated in the brain from surgery and is causing new pressure. Apparently this is common and we simply have to wait and see.

We are encouraging Logan to take things a lot slower today. She moved around too much post surgery. We hope taking it easy will help alleviate some of the pressure in her brain.

I guess I do have to keep in mind that most people would still be sedated and likely wouldn’t feel the pain, however we are dealing with Logan and she refuses to be the norm.

We have not received the pathology report yet, that may still take a few days. Our surgeon shared with us that he feels the tumor looks a bit different than it did in the previous surgeries. He said it is a bit more grey (whatever that means) He told us to hang tight to see exactly what we are dealing with- we understand but know that whatever the pathology report says, this tumor is just being a pain in the ass and is relentless. We need to change that.

We will begin our preparation for radiation this week. They will build Logan an immobilization cast which will bolt her into place in the machine. She will also get her tattoos this week. I am sure she would like something fun but they are just going to be small dots that mark the radiation field. There will be lots of information shared and the doctors will spend numerous hours reviewing Logan’s scan’s before they get started.

If all the preparation is done and we get the pathology back then the plan is to start treatment the following Monday.

Radiation will last a little over 6 weeks and will be given 5 days per week. She is receiving a ‘boost’ or a double dose to the posterior fossa (the area where most of the tumors are). 

We have been advised that every few days she will likely need blood transfusions so her counts stay up and she can continue to tolerate the treatment. Hemoglobin cannot dip below 100 during treatment and after all her years of chemo Loggie is rarely above 100.

I can’t begin to describe to you how conflicted  we have been over the choice to do radiation. Radiation has terrible, long term (life long) side effect. I guess in some ways there is no choice, it has to be done but we have much concern and many internal struggles over the decision to go ahead with full brain and spine radiation. We would have preferred a more targeted approach although we have been advised it would not be as effective and the chances of one of the many other small spots growing would be to great.

There are so many risks to consider, but due to the extent and spread of the tumor, we truly are left with no choice. The risks of radiation and long term side effects that Logan will likely experience are better than the risks of the cancer. I can’t believe we have to make this choice.

We had a ‘team’ meeting and our doctors advised us that they feel there is about an 80% chance that there is tumor in parts of the brain we cannot see on the MRI. There is also likely billions of tumor cells floating around her CNS fluid.

 During surgery, Dr. Steinbok was able to see that the tumor had made its way down the brain stem and was mixed in with the spinal cord where the two meet. This news is devastating and very concerning. It has never shown up on any MRI and I guess that is the point. You need all the information in order to make a clear decision. Dr. Steinbok is the only one who has seen first hand the extent of Logan’s disease. The scans can only tell us so much. He agrees with this radiation approach and so his opinion and  this new information solidified our decision.

  Radiation was suggested shortly after Logan was diagnosed but it was decided that she was too young and that radiation would be more detrimental than beneficial. We have held on to the radiation card for such a long time praying we never had to play it.

Now all we can hope for is that we waited for the right time to play this card. We pray that radiation will be safe, healing and effective  against this tumor and for Logan.

We also need to make a decision around her next regimen of chemotherapy.

  Since we decided to radiate the spine chemotherapy can be quite toxic in combination. It looks like we may have start chemo after we finish radiation instead of using it to boost the effectiveness of radiation. 

If all goes well, we should be able to go home Monday but as we all know in this crazy world of cancer, things can change.

Thank you for all your kind messages and  beautiful words. I do believe Loggie’s soul has a purpose and has brought many of us together. She is a gift and despite this difficult journey, we have learned so much by being surrounded you all.

I can’t believe how so much good and beauty can come from such an ugly hardship. Bittersweet.

Logan told me tonight that her favorite songs is “Lean on me” she told me if every anything happened to her she’d like that song  to be played at her funeral. Broke my heart. She is too young to have to think so deeply, but she is so wise.

All we can do is lean on each other.

I will blog soon.