Cousin Time

We had a good weekend with the cousins. We pretty much stayed home since we are to be limiting Alexis's public appearances, but we did take one morning to head to Lone Elk Park where you drive around in your own car and get up close and personal with elk, bison, etc. Wherever they are at, the cousins have fun bonding. Conner especially thought Jack was great this time as he taught him about being shirtless and rough and tough.

Home sweet home

Our big and really only news today is that Alexis got to come home from the hospital. When they disconnected her fluids from her port, she said, "goodbye pole." We are excited to all be under one roof. The Carslake cousins came into town this weekend to see Alexis. We aren't sure if she is more excited to be home or see her cousins, but Alexis can't stop smiling. 

Uneventful

We welcomed having an uneventful day today. Our day was filled with arts and crafts, language lessons with Ms. Casey, naps, and visits from nurses and doctors. Even the latter visits were pretty uneventful. We got confirmation that the tests for bacterial and viral causes have been negative. So, everyone is pretty comfortable moving forward with the assumption that the cause of the seizures is a side effects from the intrathecal methetrexate, since no clinical findings suggest anything else. 

As a result, they are rescheduling her intrathecal chemo for the next two Tuesdays to make up for missing this Tuesdays dose. They are going to use a different chemo at least in this next one and then proceed from there. Some kids who have neurological side effects from methetrexate can just have one and then never again or they can have more sever reactions. So, we are going to switch it up for at least one dose, but may eventually come back since we know that medication is so effective against ALL. For now, we will proceed with Tuesday and then revisit at a later date. 

As for the seizures, those have gotten farther apart and some less in length. So, the neurologist is happy with the results of the medicine. The medicine will continue to work better in her system and make those less frequent. It was nice to not have to watch as many of those today and to see more smiles. Uneventful days are nice these days. 

We ended the day having craft time with her oncology fellow that we love as she explained the whole thinking behind the treatment plan from here. She also reassured us that the methetrexate that Alexis is to get via iV next month does not see the same side effects as when placed in the spinal fluid. 

Mom even got a little break from the hospital to take Gavin to meet the teacher. He was excited to see his new room and give Mrs. Melanie (his teacher) a hug! 

Big heart

Rewinding the clock back 11 years, Laura was matron of honor in her good friend from college's wedding. One of their other good friends, Jessie, was also a bridesmaid in the wedding. During the reception, Jessie spent about half the night on the dance floor. However, it was not in the typical way you would think at a wedding, but instead was her dancing her heart out with the groom's brother who was wheelchair bound from spinabifida. The joy on his face that night is something I have never forgotten, and neither is the thoughts I had about what an amazing and special friend with a huge heart I had made in college. 

Fast forward a few years to Alexis's birth, a few more to Conner's, and a few more yet to Gavin's, and each time Jessie showed up at our house for a few days to help take care of my kids, give parenting advice, and just be a great supportive friend. Each time leaving her own kids to be there for me. 

Fast forward to present day when Alexis was first diagnosed with leukemia, Jessie right away responded with an "I'm coming down email." I politely ignored it as a) I have the hardest time accepting any help and b) I wasn't sure when would be the best time to take advantage of that help if I thought that was necessary. Soon after, she followed up with a second email asking when and then, knowing me so well, a third email saying, "this is the flight I'm booking tomorrow." 

So, Jessie arrived Saturday night, the same night Alexis was admitted to the hospital. She spent the next three days she was here watching the boys, running them around, cleaning the house, and playing nanny. She brought down arts and drafts to do with them and kept our lives together for us on the home front while we dealt with all the medical issues at the hospital. The boys couldn't tell me enough stories about Jessie. She had left her own kids and instead of getting a break, worked her tail off to give as normal of days as possible to our two boys. 

Two of the nights, she drove down late to sit with me at the hospital and play with Alexis. This in and of itself is amazing, but she also had a special insight into our experience as about two years ago her daughter had encephalitis, and was hospitalized for two weeks (she thankfully is okay today). So, the exact tests and experience was coming to life again with Alexis . As she sat at the hospital, she was offering ideas on how to speed up the CT scan process and what questions to ask. Her support was invaluable at this time, and I can't help but think she was put here at this exact time for a reason. I have always believed that things happen for a purpose. Did my dad get leukemia so I would have a greater understanding of what Alexis is experiencing? Was Alexis born with special needs so I could empathize more with friends who have had babies with health issues? Have I experienced these things to provide a greater good in the future? Is Alexis going through being special needs, lung issues, orthopedic issues, a cancer patient, a diabetic, epeleptic, etc because of where life may lead her and her need to do great things by drawing on these experiences? Those thoughts are what get me through these experiences, as otherwise, there is no way that one little girl would have to endure this much. Did Jessie have to experience the insane fear of her daughter going through encephalitis to be able to support me in the proper manner? Is there a reason for how life plays out? 

I don't have the answer to those questions, but I look back to eleven years ago and the selfless acts since, and I do know I'm so blessed to have this amazing person in my life. She inspires me to be a better person, to think of others feelings and what I can do to help them, to look beyond myself and my own issues and really empathize with others. She shows me to be firm in offering help and to follow my heart. To have such an amazingly big heart that allows a person to have such an impact on others is a true gift. I will be forever grateful that I get to feel that impact and learn from such an amazing person. Thanks for giving me some joy and hope during one of my darkest days. You are a great example of a true friend and a selfless person, 

Tremors

As the San Francisco area was experiencing tremors from an earthquake, we have been experiencing our own tremors in the hospital with Alexis.

On Monday morning, she started dropping things (Uno cards, markers). At first I thought it was just her being a pill, and I started to get frustrated that she was acting up. Around 1:00, her language teacher came to work with her in the hospital, and first thing she said was, "are you rolling your eyes at me?". I didn't really think anything of it at the time, since Alexis was being silly all morning. As they continued to work, Alexis was getting very droopy eyed and looked really tired, as if she was nodding off. So, as soon as Ms. Casey left, Alexis laid down for an hour nap. 

I thought a nap would do the trick for spirits and alertness. However, she continued to drop things after nap time. That's when I had the thought that neuropathy could be setting in from the Vincristine chemo, a known side effect. I started watching more closely, and I soon noticed the dropping occurred at the same time as her eye rolling and head drop. Every time she rolled her eyes, her head would bob to the left, and she would lose all muscle control (causing her to drop whatever she was holding). These would occur roughly every minute and last 2-3 seconds. She was lucid before and immediately after each spell, even picking up where she left off in counting sequences during games. 

I alerted the nurse and pretty soon we had a team of doctors examining her. They noticed the same trend and were worried enough that they ordered a CT scan, as that was the best test available after hours. So, we found ourselves doing a CT scan late into the night on Monday night. 

The next morning on Tuesday, we were visited by a neurologist and a neuro surgeon. The CT scan had showed some enlarged ventricals in her brain, so neuro surgery was consulted. If there is additional/too much fluid in the brain, this can cause swelling and pressure which can result in seizures. So, they wanted to follow up with additional tests to see if these were really frequent seizures she was experiencing caused by swelling in the brain. The neurologist did a physical exam and observed her. At one point when Lexi was asked to take a few steps, the neurologist asked Dad if he was holding her up because she could not walk on her own. Dad replied no, it was because she often loses muscle control during the episodes, and sure enough on cue, Lexi promptly had one where her legs went limp and Dad grabbed her under the arms to keep her upright. After the exam, the neurologist confirmed he thought they were seizures, and ordered an EEG to confirm the diagnosis and determine the kind and frequency. 

So, off to Mercy Mom ran to get an ultrasound that had been done on Alexis' head when she was a baby. In the meantime, Alexis was taken down with Dad to have an EEG at Children's. This involves placing electrodes on her head and measuring her brain waves. They saw a total of 11 seizures in the half hour we were down there, as well as some frontal lobe activity. From the EEG, they said the seizure waves were not consistent with known epileptic disorders. She was having 'general seizures' that involved the whole brain, as opposed to specific more targeted ones. So, they didn't think it was epileptic in nature, but will not ruled that out 100% until more tests come back. 

We were told the other tests they wanted would have to wait until later in the week, since her lungs had too much fluid from her pneumonia and were too compromised to safely give anesthesia. So, the hospital waiting game was the plan as of mid-afternoon on Tuesday. 

Then, a couple hours later, her medical teams met, and decided that they simply couldn't wait to determine the cause of her seizure activity (literally hundreds plural in a 24 hour time period). They were concerned the cause of the seizures were potentially fatal diseases such as encephalitis, menangitis, HSV (herpes), or other diseases, so they booked an OR for Tues evening to take her into surgery to test spinal fluid for these diseases. They also managed to arrange for an MRI at the same time for a single sedation given the risk. This was all done after hours with doctors staying late, so we knew the severity of the situation.

Alexis' anesthesiologist explained shortly before the procedure that earlier in the morning she had canceled Alexis' lumbar puncture surgery for chemo on the grounds that it was unsafe to sedate her. However, in consults with Lexi's neuro and oncology teams later in the day, the anesthesiologist now no longer considered this a 'planned surgery' (which she would block), but an 'emergency surgery' given the need for immediate diagnostic information (which she would do despite the risks involved). The risks had not changed, but the risk-reward balance had.

Alexis then went into a two and a half hour procedure at 5:26pm last night, and we, as parents, went into a total state of shock. 24 hours earlier we were excited about her cold getting better and being fever free and were prepared for a potential discharge from the hospital. Now we were worried that not only did she have Leukemia, but a second life threatening disease. Was this possible, and if true, could an immunity-suppressed cancer patient have any chance of fighting off a disease with high mortality rates in 'healthy' children? 

After the procedure, one of the oncologists came to talk to us. He said her spinal pressure was 25, which he believed to be in the normal range. He said the fluid was clear like water and not cloudy or bloody. So, those were both good signs. He said the MRI confirmed a slightly enlarged ventrical. However, the MRI confirmed (and their ability to compare that with her neonatal ultrasound) that although slightly larger than "normal", it was non-consequential and probably an additional birth defect that was not causing the seizure issues here. So, they considered this a negative MRI...also good news. 

By early indications, we believe this is not an epileptic disorder, but rather is more likely either a bacterial, viral, or fungal disease... or a chemo induced side effect. They are unofficially leaning towards the latter, but they need a couple more days for full test results and diagnostics. 

In the meantime, we have started her on powerful antibiotics and an anti-viral medication to cover any of the known diseases in question. The diseases are simply too progressive to wait for the test results, so they start meds now and back off if negative, rather than the other way around. We also have started her on anti-seizure medicines that they will have to tweak over the next few days to minimize those. Now we wait for the seizure medicine to take hold (12-second mark of video depicts one minor episode), and we enter the waiting game for test results again.

Pneumonia

It took a few days to get to a diagnosis, but we've finally determined that Lexi is battling a little case of pneumonia. During the last 3-4 days she has been in the hospital (Thurs/Fri as outpatient, Sat-Sun as inpatient), cultures repeatedly came back negative, and doctors and nurses routinely listened to her lungs and said they were clear, meaning they thought they were dealing with a virus (no anti-bitoics) vs. infection or pneumonia (treat with anti-biotics).

But late Saturday night, Mom finally won a two-day battle for Alexis to be given a chest x-ray anyway as a precautionary measure, given her tracheomalacia and past respiratory issues (including a 2+ week hospital stay for RSV a few years ago). Sure enough, the x-ray came back and revealed fluid in the lungs, indicating she has pneumonia. Immediately thereafter they started her on 10-days of anti-biotics, with the hope being the first few days can be via IV here in the hospital, and the rest can be oral anti-biotics at home, but of course you never know.

In general, she seems to be doing okay all things considered. This is just the fourth straight day riding a rollercoaster of being fever-free for a few hours, then spiking a fever and being down and out for a few hours. Today was a high fever early in the morning, then normal temps for most of the morning and early afternoon, then 103.3 with some chills late afternoon. But it came back down again into the evening, so all we can do is hope is stays that way overnight. Being fever free for 24-48 hours probably is her ticket home, but more importantly, it's her ticket to continue her chemo treatment protocol on Tuesday, which includes another surgery for intrathecal chemo (shot into the spine) if she's healthier by then. We hope there isn't an interruption in treatment due to this, but of course we'll have to stay flexible and adjust things as best we can if there is.