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.
