Oncology visit to discuss last week's incident

Alycia:

Today Sean and I went to the oncology clinic to figure out what last week's incident means to the future of Charlotte's chemo plans. The answer - not much. The attending oncologist came in, already briefed about last week's emergency. Charlotte declared she's tired talking about her seizure, so the child life specialist sat and distracted her by playing doctor with a doll and all the same medical devices they use in the clinic. While Charlotte put in a port access into her own stuffed Cheetah, hooked it up to an IV and blood pressure cuff, we talked with Dr. Barnett.

Dr. Barnett assured us that he thinks we made the right decision to watch Charlotte. He is convinced the seizure was due to the chemo meds. Usually, he explained, the kids who do have a seizure, do so during the stage we had the month before, we she had a lumbar puncture (LP) every week and chemo placed into her spinal fluid. Even though that's not when this occurred, he thinks the seizure is the brain's reaction to the chemicals. When the kids do seize, it is usually within 5-7 days after the LP. Her MRI looked great, and the EEG "different activity" he strongly believes is due to the seizure, and not to some underlying seizure tendencies. His recommendation was to use another chemo for the next LP on December 5th. I can't remember the drug name right now...it starts with an "A". Then, we will return to the regular spinal chemo, methotrexate, for the LP after. The replacement chemo is the same they used for the very first LP, before they knew if Charlotte had ALL or AML, which is standard protocol. It is my understanding that kids with ALL are treated with methotrexate after that point. Kids with AML continue to use the other. While Dr. Barnett explained that for some kids, their reaction to methotrexate is such that they decide to permanently switch chemos, but there isn't enough statistical data that shows positive outcomes when compared to using methotrexate, so he'd prefer to give her a "rest" from the spinal methotrexate, and go back to it at the end of December.

We then went and received the last dose of "Interim Maintenance" chemo. Our next appointment won't be until December 6. At that time, we begin "Delayed Intensification". It involves steroids again, on 7 days, off 7 days. We have chemo on day 1, day 4, day 8, and day 15. When I asked what the side affects are, they did say she will probably lose what little fuzz she still has left on her head. She will also experience more nausea than she probably has in the past.

Currently, Charlotte is no worse for the wear from our adventure last week. She is happy, healthy, and still the same person she always has been. Her immunity levels are almost what a normal person's are. I would say it is accurate to say that Sean and I were the most traumatized.

My plan is to stay cool, and index for blessings... (inside 29th ward reference :-) ).

At the clinic, getting chemo. Charlotte is on her 3rd art project, a Thankful Tree. Each leaf has an item she is thankful for written on it. The first leaf was "Mom". She knows who cooks her dinner!

Sean:
Charlotte's clinic visit went well today. The doctor said most likely her seizure last Wednesday was caused by the Methotrexate chemo she's been taking, which is a normal reaction from some patients - still scary though. Anyway, today's visit and chemo dose marked the last of the inter maintenance phase. She now gets a two week break before she starts the next phase (2 months worth) called delayed intensification. Her energy levels are still very high and she's still doing rather well.

A special thank you to everyone for your prayers, support, care packages, words of encouragement, special fasts, donations, and love.

Update on Charlotte

Update on Charlotte: the EEG test came back and showed some "different" activity in the left posterior of her brain. Could be harmless after effects of her seizure and it may return to normal electrical activity with time. We were given the option to put her on a med that can help control future seizures, but no guarantees. Also given the option to not medicate right now and if it happens again in the future, then we can medicate. We chose not to medicate at this time (she's already on enough drugs), but we do have an emergency nasal spray type medicine that we can administer if she has another seizure that we observe lasting longer than 5 minutes. We finally got out of the hospital about 7 pm last night - exhausted, scared, but very thankful Charlotte is back to her normal sweet self.

Thank you for your comments, words of support, thoughts and prayers. Seeing them really does help know that there are always others out there with similar experiences and love to give. Doing my best to stay strong.  
-Sean

The techs are applying the sensors for the EEG.

All wired up and thinking it's funny.

Home Tonight...

Tired but home tonight. Charlotte shows no outward negative signs of her seizure. The EEG did show "different activity" in her left posterior of her brain. The neurology guys said it could be leftover from what happened yesterday, or it could be she is pre-disposed to have seizures, which isn't to say she would definitely ever have one again... or she could. So we were given the choice, start medication now for seizures, not knowing if what they were seeing was something leftover from yesterday or whatever. The medication does reduce occurrence of seizures, but doesn't guarantee she won't have one. And if we do put her on medication, since they aren't sure what they were seeing, they would want to wean her off it again in 6 months and see how it goes. Or we could just watch and wait. If it happens again, we will begin seizure meds knowing that we are needing to. They said both options have merit. Oncology said she could be the 10% that have this reaction to methotrexate. We now have an appointment to see them again on Monday. Charlotte will have another lumbar puncture then in the OR. Given choices, Sean and I decided to watch Charlotte. We have emergency meds to administer if she does have another seizure that lasts beyond 5 minutes... then we call 911 again. I feel good, but this was scary. These neurologists assured us there are many kids and adults who have seizures, and are able to manage them. They are scary to witness, but the larger percentage patients who experience seizures live without negative results. The plan is to prepare for the worst happening again, and go forward like it won't. We aren't going to be hovering over Charlotte's bedside the entire night, watching her sleep.

More info about yesterday's seizure

For those who haven't heard yet, yesterday morning we had Charlotte rushed to the hospital in an ambulance after calling 911 and determining she may be having seizures. She had no apparent convulsions, jerking or flailing, but she definitely wasn't acting like her normal self and gradually started to stare at the wall and just drool until EMS arrived. On the ambulance ride she did have convulsions so the paramedics gave her a sedative to calm them. At the hospital she appeared to have minor convulsions and she was given additional sedation. She then had a CT scan, MRI, Lumbar Poke.

All the tests came back normal, but Charlotte was disoriented most of the time, confused, scared, angry, and desperate to get out of there. She ended up staying overnight in the ICS, and this morning she had an EEG test. Most of the day yesterday she was incoherent, slurred speech, but thankfully today everything seems "normal" again. Her doctors believe the chemo she’s been on to suppress the cancer may have caused her to have a negative reaction, so they're looking into a different chemo to use now. We're still awaiting final approval from the neurologist (based on the EEG results) about whether or not they will release her from the hospital today. She's currently doing some painting crafts in her room, full of energy, and happy - in total contrast to what she was yesterday.

Praying that the EEG results come back with normal results and that we are able to return to a somewhat normal life again. Thank you for your support and prayers. I was so scared yesterday for my sweet little girl and I’m so thankful she is back to her normal sweet self. My stomach is still in knots from all the stress and anxiety, but it's nothing compared to what Charlotte had to endure. This little girl is a fighter and God must have His angels watching over her. God bless. Thank you for your continued prayers, thoughts, love and support.

-Sean

From ALYICA:
Charlotte asked a few staff members if she'd be home for Thanksgiving, and they said that they can't imagine keeping her that long.  No other seizures since yesterday.  Still waiting for the EEG and the doctors to come by and talk with us.  Neurology said they'd be in later, but I haven't seen them yet.  The EEG is going to be a portable unit they bring here to her room.  Originally, neuro wanted her to go downstairs, but they like to keep the immunocompromised kids up here.  It's supposed to be here in 20 minutes.  I finally see the doctors outside the door.

Emergency

Today began normally. I got up, went to work, then Sean called and told me that Charlotte was acting weird. She didn't seem to be able to talk and was making spit bubbles. I don't know if yelled is the best word, but it's the only one I can think that fits... I yelled at him not to call me, to call the hospital. By the time I shut down my PC, clocked out, gathered my gear, and hit the parking lot. I thought to call our neighbor, Eve, who is a nurse at Primary's. Thankfully, she was home and immediately agreed to go over to our house.

Before I reached home, Sean had talked to the clinic and Eve. He was told to call 911. There apparently was a police car, an ambulance, and a firetruck. Sean called as I was getting off the highway, and told me they were headed to Primary's in an ambulance.

I reached Primary's before the ambulance. So I filled out the paperwork and they led me back to her room a few minutes later. The Charlotte we know and love was not home. Her arm was twitching and her eyes were not focused on anything. The ER staff gave her another dose of anti-seizure meds, and I could see short glimpses of Charlotte coming aware, and then losing awareness. She tried to get up and struggled into my lap, where she fell asleep. When her oncologist came in an hour later, she started to become belligerent. She couldn't make sense, her tongue wouldn't form words correctly and she found it very frustrating. She kept trying to leave the room. We could understand enough to hear her say she wanted to go play, and she needed to go to school. Finally, she settled down and fell asleep in my lap.

They took a CT, didn't see anything, so they ordered an MRI and another spinal tap, thinking it might be an infection in her spinal fluid. Sean stayed with Charlotte for the MRI, and I ran home to pack a bag and get Naomi situated. Charlotte will be staying the night here. When I returned, the doctors and Sean told me that her MRI looks good, and her spinal fluid showed no infection. The theory behind the seizures is that Charlotte is experiencing "Chemo toxicity" A redundant term if I ever heard one. They will do an EEG tomorrow, to watch her brain activity, and we will know more then. She is talking and walking almost normal now, and she is full of energy. I'm trying to convince her that now is bedtime. Sean is home with Naomi tonight. I hope we will join them tomorrow. If not, I won't fuss.

"Interim Maintenance" Update

At 8:00 am, Charly had another chemo appointment today. Last night, Sean asked that I take her. I emailed work and took the day off - Thanks Dr. C and everybody! Charlotte also had another lumbar puncture today, to judge how well the "Interim Maintenance" cycle has gone. The final dose for the cycle is on November 15. Again, the doctors remarked on how well Charlotte is doing. No mouth sores, no significant stomach pain, no burning rash on her hands and feet. Her counts were excellent - no need to transfuse blood or platelets. Her ANC (Immunity levels) is great. We have been blessed. Again, I was warned they were increasing her chemo again today. They reminded me to dose her with Zofran before bed to help her from having nausea.

We went to the sedation clinic adjacent to the oncology clinic, and Charlotte had an LP. This is the first in-office LP that I attended. In the sedation clinic, they give Charlotte a dose of Ketamine and Versed through her port. A nurse practitioner quickly gets her spinal fluid sample, and then within minutes, Charly's brain starts working again. The nurses say she is quite funny at how happy she is. It's a little disconcerting to watch the intelligence to fade from her eyes and she is just a big smile and blank eyes. When she started to come back out, she kept trying to touch the ceiling, where a cloud picture covered the lighting. She also said that her back poke was fun, we should get back pokes more often. It was so funny, I remembered I had a camera and started to film her. Those few minutes of fumbling for the camera were all it took for her to regain even more coherence. We finished up with chemo and finger painting, and made it back home by 1:00 pm.

When she is done with a lumbar puncture, she's supposed to keep off her feet and relax. By 3:00 pm, she was through with that. When I left to find Naomi and pass on a phone message, she followed me. Charly helped spin the rope for Kayla and Ellie's attempts at (is this correct?) single dutch jump rope. They even convinced her to try jumping. Worried that she was going to develop a spinal headache, I encouraged her to invite the girls over for activities at our house. They painted and glitter glued and cut out construction paper with fancy scissors. Charlotte had a great day. I'm hoping we will see that the chemo doesn't even put a break in her stride again.

Naomi's Cheer Competition

Naomi's team took 2nd Place!  Way to go Naomi!!