Yet again I find myself thinking I can keep up with all that I have to do. But, here we are realizing that I indeed have been slacking with this and keeping everyone up to date as to what is happening. Last time, she was completing her second round of chemo. Since then, she completed her third round which appeared to have more side effects than the two prior. After the chemo is finished, Alexandra is quite shaky (legs inability to stand and hardly walk) for a few days after. Thankfully, she still has not presented with any nausea or vomiting. Some of this is combated with Zofran for a day or two after she comes home because some of the drugs can cause delayed nausea. 

The beginning of December, Allie appeared like she just wasn't feeling well overall. She was very quiet, not wanting to move much, and was napping a lot. Which, if you have gathered any thing about this lady, that is surely not her norm. As the day went on, she began to develop a fever that reached 100.4. Because she is immunocompromised, there is a protocol that if she has two fevers that reach 100.4 or if she develops a fever of 101.5 or greater, we have to immediately call the Pediatric Oncologist and await their instruction. She teetered with 100 degree temp throughout the night and in the morning her temp reached 101.6. So we followed the protocol and we were told to come to the clinic immediately. They immediately started her on broad spectrum antibiotics (a precaution because the initial assumption is if you have a high fever there is an infection somewhere). Swabbed her for RSV, COVID, etc, and hooked her up to fluids. We were told that she was going to be admitted and the Nurse Practioner who could take another class in bedside manner, told us to prepare to not be home before Christmas. 

After taking labs, they find out that she is neutropenic ("abnormally low amount of white blood cells"). If you don't know, the white blood cells are what help your body fight infections. When we say "abnormally low", I literally mean 0! She had nothing! Specifically it was 0.07 when normal for her age is STARTS at 4.5! Also her platelets (this causes the blood to clot) was 1. Normal, 150,000-400,000. Lastly, her hemoglobin was 6 where normal is is about 10-12. So needless to say, she had MANY reasons for feeling so yucky! She had several blood transfusions in addition to receiving numerous rounds of platelets. It was then a waiting game to see if her numbers would go up enough to where they would discharge her home AND if that would take place before Christmas. On the 20th, when Allie was standing in front of me, she went to blink and her eyes crossed over. They went inward which is something that doesn't happen. As the night progressed, it continued to do it. It was messing with her vision and she was having trouble keeping her balance and walking. When the doctor's would come in to do rounds, they weren't seeing it but continued to say that they believed me. I personally feel if you believe what I am saying is true, then there needs to be some action on it. So, I contacted her team in DC that did the proton therapy who agreed with me that she needed an MRI. She received the MRI only to find that she was having swelling of the brain again meaning that her shunt was not working correctly. 

Cool thing about her shunt is you can change the settings on it to open it up to allow it to drain more. It is a cool magnetic gadget that they use to make this happen. They "dialed it down" (such backwardness of words) and after two days, it appeared to be working and the swelling went down. Her neurologist stated that "prayers must be working" because they fully intended to come in that morning to do a shunt revision (replacement). She was discharged on the 23rd of December. 

Fast forward to Christmas (the kids had a BLAST), she had not eaten for two days and was hardly drinking, so we ended up in the ER that night. She received fluids and was admitted overnight. The next day it was like she perked up and was fine. She was eating and drinking enough that her Oncologist stated that she could go home. 

Now today, after being postponed because of not having power (thank you snow), we are currently in the hospital for our LAST ROUND OF CHEMOTHERAPY!!!!!! I didn't want to say anything until she had officially started. The first drug is up, she is sleeping, and this momma cannot wait until the weekend where we can walk out of here!!!! She has follow-up for a couple of weeks so they can measure her counts and make sure everything is going well there. She has a follow-up MRI on the 21st and if that is all clear, they will be scheduling a surgery to have her port removed, hopefully in February! 

Although the chemo is done, she still has a lot going on. Her eyes never fully recovered but they got increasingly better. So we will be seeing an ophthalmologist, follow-ups with PT, Neurology, Orthopedics, the list continues. There will always be potential risks or long term things we have to look out for and although that will be down the road, we still have to monitor her for any potential symptoms that could indicate new disease. Her Radiation Oncologist (Team in DC), stated that once she hits the "all clear" mark at 5 years, we can then "take a sigh of relief". For now, we will just go with one day at a time. ❤️