Let me back up a bit though.
The past few days have been tough for Ellie and myself. I tend to think that the term "mood swing" is a joke. That implies that there is a "swing" to a good mood, and I even imagine a balance between the good and bad moods. For about 3 days, the good moods were almost nonexistent. She vacillated between a "I can tolerate this" mood to a "hysterical rage" type of mood. Life has not been fun for her, and rightly so. We can only imagine the type of pain that she is in, and while the steroids are helping her physically, they are wrecking havoc on her little mind.
(Side note: I quickly realized that I was a large part of the problem. For whatever reason, she would scream the loudest when I was around. I suppose this is an instance where mom gets the worst of everything. With that in mind, I tried to keep her occupied with other guests/nurses/volunteers. But, when it's 10pm and we are going to bed, I'm the only one around. This led to her screaming hysterically one night for over three hours. I promptly texted my mom and dad and apologized for all of the ways I was mean to them when I was on steroids as a teenager. While I know that the steroids are absolutely necessary, I also know that they are absolutely terrible.)
|Passed out in the morning after a long evening of crying.|
|Feeling a little bit better and finally eating some food!|
Ellie is also sitting up on the edge of her bed which is a huge improvement.
|Meeting Cleveland Indians Pitcher, Carlos Carrasco.|
We have made it through this tough time, and things are looking up. She received more platelets yesterday, and late this morning, Ellie received another lumbar puncture to administer more chemo into her spinal fluid. She was then sent back to her room and given another dose of an IV chemo drug. With both of those things accomplished, she was free to go home! After waiting for her prescriptions and discharge papers, we finally left the hospital around 5pm. Hallelujah!
|Waiting to go in for her lumbar puncture.|
|Resting after her procedure.|
|After not being able to eat for 12 hours, Ellie was ravenous.|
She requested a hot dog and fries.
|After 12 days, Ellie is finally heading home!|
Ellie goes back for blood work on Friday, and will likely receive more blood and platelets. This will all be done in a clinic at the hospital as a day patient. More than likely she will go back again on Monday to get more labs done on her blood. We will then go back next Wednesday for her next chemo treatment.
As hoped and expected, she hardly has any white blood cells (count of 0.9). As the bad stuff dies, so does the good. If her numbers were higher, it would mean that the leukemia isn't dying. Her numbers are low, so we know it's going away. But, with this comes a very compromised immune system. ANY virus could quickly send her to the hospital. With that in mind, she will be quarantined at home for this first month until we know that she is stable. Quarantining her at home also means severely limiting visitors that come into our home. So if you've offered to come over and help, thank you so much! But, for these first few weeks we have to politely decline, only to keep Ellie safe.
We have strong hope that since she is now home, she will begin to recover more quickly. She happened to be asleep when I met with a Physical Therapist the other day, but she gave me ideas on how to help Ellie regain strength in her legs. We will begin working on that tomorrow.
These past 12 days, it has taken a village.
To Mimi and Papa: Thank you for taking such good care of Eva and Nora. Never once did we have to worry about whether they were ok. Knowing that they were with you allowed Mike and I to be completely present for Ellie when she needed it most. You are such a blessing to our entire family.
To Nana and Grandpa: Thank you for coming to the hospital and helping us take care of Ellie. That extra support made all the difference. You helped take care of us, so we could take care of Ellie. Mom, thank you for taking the night shift that last night in the hospital.
There are so many people that we are deeply grateful for. The list feels never ending. For now though, please know that we have read every text, email, link, card, and they have all meant so much to us. Our Ellie is loved. Our family is loved. We are ever so appreciative.
I could go on, and maybe later I will. But at this moment, our family is finally under one roof together, and it is time to go to bed.