First of all, she went through a full 4 weeks of Ommaya taps, while taking an oral chemo daily for 3 weeks (as well as 3 other daily medications). She stunned the entire team with how quickly she got used to doing the taps. Before each one, she would do a tap on her stuffed bear (named Maya the Ommaya bear), during which she would complete the entire process: putting on sterile gloves, cleaning the site 3 times, putting the sterile drape on, inserting the needle (using a real needle, but only with her hand over Ms. Sammi’s hand), pretending to collect some “CSF” in the test tubes, and finally flushing the chemo in. Other practitioners outside of the neuro-oncology team have been coming to observe, and the neuro-oncology NP always makes sure they have Charlotte show them the “Charlotte way”. She has even been given her own official “Ommaya educator certificate”. The actual tap takes just a few minutes, and each week they send off a sample of her CSF to make sure there isn’t any malignant cells present. So far, all 8 samples have been negative for malignant cells! Praise God! 

The part that is hardest for her is laying flat for 30 minutes after the tap is over. She is able to listen to Bluey that is piped directly to her hearing aids, but the taps mess with her eyes immediately afterwards, so that she can’t watch anything and she can get a bit impatient.

The effect on her eyes has really been the biggest side effect of the taps. Before this, she would turn her head 10-15 degrees to the left to look more out of her right side of her eyes. This was her way of correcting the “nystagmus” she was having. Nystagmus is where the eyes bounce left to right when they are trying to focus. By turning her head those few degrees, her eyes were able to reach the “null point”, or the point at which her eyes were able to focus without any bouncing and her gaze would be steady. 

Now, post taps, she has a much more severe head turn to be able to focus. Many times she will turn her head over 45 degrees either to the left or right and look out of the corners of her eyes. We had been seeing much more nystagmus immediately after the tap (during that 30 min of laying flat) but it had been going away. It progressed slowly to the point where she was constantly walking with her nose at the 11 o’clock position. The thought is that this is due to the inflammation caused by the cytarabine (the second chemo given via her Ommaya- the one that we give 2x/week for 2 weeks). The other tests done on her CSF would confirm that there is some inflammation, and most likely cause would be the cytarabine. 

The same week that we started the cytarabine (Week 3), she got hit with the rhinovirus. It’s basically a nasty cold, and it absolutely devastates counts in patients with already weakened immune systems. During week 3, Thursday she started having a couple sniffles. Friday, she had a fever that required an emergency room visit (thankfully her counts were high enough that we didn’t need to stay). Since then, she’s been needing frequent platelet transfusions, and we didn’t start her second oral chemo (if you remember, her regimen included alternating between 2 oral chemo agents every 3 weeks). She did 3/5 days of taps during week 5, but we didn’t finish out the week because of the combination of inflammation and poor counts. 

Starting today, she isn’t getting any of the chemos or other drugs and is having a full break from the regimen. We had been giving her Neupogen shots last week to help her counts recover. Thankfully, those started showing positive results on Friday. We shall see what they look like on Tuesday. We are doing our best to balance treating any remaining cancer while not completely obliterating her bone marrow. Between her initial chemo regimen and radiation, her bone marrow has been through quite a lot, and you can tell based on her counts.

During this hiatus from posts, she had a birthday! She is now SIX years old! Every single birthday at this point is a huge cause for celebration and immense gratitude for the time we have together. We were able to celebrate with both sets of grandparents as well as my brother and sister in law! Charlotte (and all of us!) loved being surrounded by family playing her favorite “Bluey” games with her. 

She also lost TWO teeth! She sewed her very own tooth fairy pillow and was super excited to receive a Sacagawea dollar from the tooth fairy for each tooth. She also just completed work on her very first quilt! She made a mini quilt for her little stuffie. This has been a great activity to practice some hand-eye coordination and she is very proud of the result!

Hopefully I will get back on the horse as far as posts, but those updates are the generalities of our life these past weeks. 

Prayer Requests:

Thank you so much for all of your continued prayers!

Jesus, I trust in You!