The feeding tube is in and she had her first feed last night. UUUGGGG!!! It was a terrible experience for Logan…she hated it! It was a terrible experience for me. I hated it.

I don’t think ever in my entire life I have heard a kid scream like she did while they were putting in that tube. She freaked. She was hyperventilating, shaking and as red as the ripest tomato on the vine. I swear at some points during the process she wasn’t even breathing. I am not sure how she got through it, but she did. Thank God.

  When it was all done, and finally inserted properly (don’t want to feed her lung) Loggie wiped away her tears and apologized to the nurse for screaming so loud into her face. The nurse smiled and Loggie rubbed her hand and told her not to feel bad, that she did a good job.

FRICK!!!!  We all cried.

The feeding is stressful and is going to be a big job!~ Right now it is taking us about 30 minutes to prepare for each feed. We need to start getting by getting a sample from her tube. We use a syringe to withdraw stomach acid and we test that stomach fluid for the proper PH levels on a small multi-colored strip. This is to make sure the tube is still in the proper place and hasn’t made its way into an organ other than her stomach. After we are sure everything looks right, we have to syringe the stomach acid back into her belly through the tube. So YUCKY.

  Once those steps are complete, it’s time to eat- for her, not us.  I am pretty sure we won’t have much of an appetite after that grossness.

At night, the liquid nutrition will be put into bag and we will use a pump similar to an IV so it can be released slowly. These feeds take about 4 hours from start to finish. Once the pump beeps we have to flush her line to make sure it is clean. If all goes well we will aim for 2 feeds a night and 3 feeds a day. Twelve to fourteen hours of feeding, pumping, and very little sleep leaves us feeling a bit like the parents of a new born baby.

We will also be taught how to give bolus of nutrition through out the day…meaning if she is not getting enough through the night than we can basically give her a quick shot of nutrition rather than a full 4 hour feed. She was 64 lbs today so down a bit again.

Hopefully in addition to the tube feeds she will be able to start eating and we can use this process more as a supplement than her total nutrition plan.

 A decision was  also firmed up today about treatment. Radiation will begin on Monday.

Full brain and spine is the only option. We are very saddened by this.

  Today doctors confirmed that the new spot is definitely new tumor since surgery at the top of her spine they also told us tumor is in her spinal cord fluid. Not good.

Radiation will be given over 31 cycles or just over 6 weeks. She will receive a boost in addition to the basic dose to the back of her head where most of the tumors are. After radiation, we are going to give her a 4 to 6 week break to let her bone marrow recover before we start Chemotherapy. The chemotherapy regimen will consist of a cocktail of cisplatin and etoposide. It will take about a year to complete the entire protocol if she can tolerate it.

I guess this is what ‘bringing in the big guns’ looks like in the brain cancer world.

Our doctors have very little information to go on.Dr. Hukin who is our oncologist and is the head of the neuro-oncology department told us  in our meeting today that in the 10 years she has been working at Children’s she has only ever had one case with a similar pathology and such much wide disease.  I couldn’t help but ask, and no, that child did not survive. The thing about Logan’s tumor is that the pathology says it should be a fairly low grade tumor, however, it is not behaving as a low grade tumor would. It is metastasizing and seems to be spreading quickly. The samples from surgery we have are small because the tumor is in such a difficult mostly inoperable spot. So this is all we can go on.  The final report says the tumor is a mixed glioma. We are treating it as it is behaving, high grade.

  This a new approach. Usually low grade tumors don’t respond to this type of treatment. But the thought  is because of the extent of Logan’s disease and how quickly new spots seem to be popping up we need to think outside of the box and respond to its behaviour and not its pathology.

We trust Logan’s doctors and we agree with the treatment approach. This is the chemotherapy I researched and presented. I hoped we could only do chemotherapy but we have been advised that a combined approach at the point is best. Having to make this decision has been extremely difficult, and one that we hoped we’d never have to make. Talk of radiation has always been on the table since her diagnosis 3 years ago. However I have never felt good about it. Internally, even though I know it has come down to this, I struggle deeply with the choice to subjecting her growing brain and spine to radiation. I am afraid of who she will be after this treatment, I am afraid of the irreversible side effects and the damage that will occur.

But I have to let it go. There truly is no choice so all I can do now is hope that Logan will be OK. That this will save her life and that the side effects will be minimal. I have to accept what will come next- and I am working on that.

Logan is happy that we made  the decision to start radiation before chemotherapy and that she will get a break in between. For Christmas, our dear friends (family really) Reid and Diane graciously gave us a trip to Maui. The plan will be to go at the end of April when radiation completes. If  the dates line up and Logan tolerates the treatment well she should just be finished radiation 10 days before we leave. She not start chemo for a month after that.

PERFECT timing and something to look forward to and work towards- Sunshine, beach time, relaxing and drinking cocktails out of pineapples seems like a good dream to focus on right about now.

 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.

FEB 21 CONTINUED
WOW! Thank you first off for all the love and support that was sent to Logan today.

I am happy to report that it paid off! Your energy, love, strength and amazing commitment to helping her heal…no doubt gave her strength to make it through the surgery- with flying colors I might add.

Most people who had a surgery that involved any area of the brain stem  would still be vented (a breathing tube) and sedated to make sure everything was OK. But our Loggie would have none of that,  only 6 hours post op, She is eating chicken noodle soup, and 2 popsicles. She some how managed to convince the nurses to take out most her tubes and she is sitting up on her own.

The risks of this surgery worried us very much since Logan has a build of up scar tissue from previous surgeries. There was a very real possibility of her heart stopping when the brain stem was punctured…fear overwhelmed us today wondering if we’d ever see her sweet face again. 

Today was an incredible day. I read Logan the messages you all sent to her. I read the well wishes from her caringbridge site and all the emails from her school…she started to cry.

  When I asked her if she was sad or if she had any pain…she shook her head  no.  She mouthed the word happy.

There could never be a more moving or powerful moment in my life. To witness completely and true gratitude for the gift of life and for the gift of those who care about her has left me incredibly humbled.

I learned more today about the importance of gratitude then I will probably learn in my whole life. I pray I never forget it.

 Because she is doing so well, she will be moved tomorrow from ICU to the Neurological ward where she will stay and be monitored for a few days.

The radiation oncologist met with us today during Logan’s surgery and feels we will be able to start radiation on the or about the 3rd of March. That is a week Monday- we are nervous that it isn’t giving Logan enough time to heal but also know we can’t give this tumor time to grow.

Our amazing surgeon Dr Steinbok, debriefed us after surgery. Apparently, Logan’s tumor had once again filled with liquid. Her tumor has a cystic cavity in the middle of it and although the tumor isn’t able to be removed the surgeon was able to drain out that fluid. Picture a balloon that has a slow leak. Without the support of the fluid, the tumor collapses on itself. Although it is the same size- takes up less space freeing up the pressure in the brain stem and causing far less symptoms.

Amazing and I know relieving that pressure makes a huge difference. We are only a few hours post-op when everything is swollen and sore and Logan told me how much better she feels. “Mom I feel better than I have in such a long time”

She is a bit dopey right now, actually she is totally stoned. The morphine infusions will continue to be given each hour through the night to keep her comfortable. I asked the doctor tonight if we should be giving her so many narcotics, it really does seem excessive, but it turns out that kids can metabolize far more opiates than adults (who knew) so she is getting the perfect dose for her little body..

We will have a better idea how she is actually feeling in the morning when we wean her off the painkillers a bit, but I am expecting a full recovery in record time.

We love you all very much and are truly blessed for the care and concern you have for our family…

Thanks so much to all you members of “TEAM LOGAN”  they say it takes a community to raise a child. Apparently it also takes a community to heal one. We  proved that today.

With Love from us to you!

Feb 19th- one week after finding out Logan has relapsed and today we had another MRI of the head and of her spine. We have no results on the scan as of yet but what we do know is that the tumor in her brain stem is causing too much pressure for them to begin radiation right away. The doctors feel that Logan’s best chance will be to have surgery first to try to de-bulk the tumor and then start both a regimen of both chemotherapy and radiation (full brain and spine). It is the doctor’s belief that the tumor is probably in other parts of Logan’s brain. Cells that we can’t see on the scan could be present and that means there is a very good chance it will continue to spread throughout the spine. It also means that our best chance of preventing this is to radiate before it happens.

Surgery is planned for Thursday. It is going to be a bit more risky than any of the other surgeries she had previously and we are worried. Please, Thursday send us good thoughts, love and prayers for Logan’s recovery

The first step (again) to beating this is just to make it through the surgery. After the operation Logan will be in the ICU for about 3- 4 days and then  she will be moved to the surgical ward for another 5 days to give her some recovery time. It is her doctor’s hope that radiation can start approximately 10 days after surgery but that will depend of the amount of inflammation and swelling in her brain post surgery.

Jared and I  have decided to pull our RV down to the hospital and this is where we will ‘live’ for the next few weeks. We are lucky that the hospital designates a spot for families to bring down an RV and are grateful for the ability for both of us to be close to Logan while she needs us. If anyone wants to reach we will have on our cel phones with us.

Thank you all so much for all your kind words and support. This has been an incredibly difficult time this third time around. Having been at  this cancer battle for so long already everyone single one of us is feeling a little less hopeful, and enthusiastic with this latest setback. That is not entirely true, I am feeling depleted and worried and tired, Logan is not. She continues to be our pillar of strength. She must be pulling her energy  from that you are sending her- so thank you and keep it coming.

I will update you all as I can.

I will keep you all posted as updates arise.

Love to you all

The Lays