NavigatingLifeWithLMS

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I had been a special needs parent to, as I like to call her, my Unicorn-Superhero-Warrior-Princess, for over three years. We have had countless admissions. We had spent time in every unit of Doernbecher Children’s Hospital but one, the one I never thought we would stay in. The one I thanked our lucky stars we didn’t have to encounter, live with, and also try to navigate…10S – hematology/oncology. There, in that unit, we began a new roller-coaster ride in this already terrify, yet somehow rewarding, theme park life seemed to be building for us. They called this new ride Acute Lymphoblastic Leukemia, and the name alone gave me nightmares.

This experience all began in January with a cold, a hardcore cold. Koda, our youngest, had gotten sick, which had never happened his first year of life. The cold knocked him down for about a week. We knew, just knew, Kailanie would end up with the cold too. Sure enough, it hit her, and it hit hard.

We did alright keeping her at home hooked up to the concentrator for oxygen, and on her Bi-PAP when needed. We had a pulse-ox monitor at home to keep an eye on her oxygen saturation. We even had a suction machine to handle all the extra secretions. Her condition was just not improving enough. After evaluating Kailanie for the second time in office, her pediatrician decided it was time to take her to the hospital.

After getting sent home on antibiotics for pneumonia she was taken back to the hospital. Kailanie was just not bouncing back like she should.

While in the hospital her blood cell counts were doing an odd little dance. Her immune system was gone, but it showed signs of trying to fight back. The hematology team was consulted for the second time in a few short months. Hematology was stumped and desperately trying to figure out why her cell counts would be “off” on two separate occasions.

A little background information: At the end of November through the beginning of December Kailanie was in the hospital recovering from a jaw distraction surgery to improve her airway. Kailanie ended up with pneumonia while intubated and her cell counts refused to come back up. Her team was so concerned about her; they consulted with infectious disease and hematology. Eventually, Kailanie’s cell counts came back up.

Hematology had told us, during this admission in January, it couldn’t be anything like leukemia since her counts had recovered after the issues in December. They thought it could be something genetic. Testing was done, and her numbers continued to be carefully monitored. The decision was made to do a bone marrow biopsy hoping it might give us more clues.

The bone marrow biopsy was done on Thursday, February 8th. We waited for what seemed like an eternity for preliminary results to come in the next day. I was at home trying to get things done around the house and hoping Kailanie would be able to come home. We finally got word that a couple of the cells looked like they could be leukemia cells, but that did not mean they were.

I knew they were leukemia cells the second I heard they could be. My heart sank, and I couldn’t move. I was already grieving with “what if” thoughts. I was kicking myself in the butt for all the negative anxiety thoughts I had been having about “what if all this could be cancer?” I felt as if it was my fault for manifesting the entire situation.

I remember the pain, anxiety, sheer terror of it all hitting in waves. At one point I was standing in my kitchen sliding against the cabinets in full-blown panic attack with tears streaming down my face and forming puddles on the floor. All this while my innocent unknowing one-year-old was trying to comfort me.

I was thinking “this could be the end…but it can’t end like this. Not this. Not now, after all we have been through! How does she deserve to fight through this too!” I got myself up and decided I was done being terrified. We were going to win this battle, there was, and still is, no other option.

On the way to the hospital, I heard a few songs in the radio, I can’t remember which songs they were, but I remember feeling as though the universe letting me know it was all going to be ok. I had cried all my tears and was ready to put my big girl panties back on along with my “we got this” attitude.

As I arrived in the hospital room, still on the 9th floor, Kailanie and Jon (Kailanie’s dad) were waiting to be transferred up to 10S. Jon had to take Koda to Jace’s school for a family Valentine’s Day activity we were all supposed to attend.

Soon, there I stood, just my Unicorn-Superhero-Warrior-Princess, and I. For the first time in a long time, in the same hospital that had quickly become our second home after Kailanie was born, we felt out of our element. How did we get here, and how could this happen to us?

When we arrived, I could tell they weren’t used to our kind on 10S. The kind of parents that already knew the in’s and out’s of the hospital. Parents that knew the drill for vitals, ordering food, housekeeping, activities, silencing the IV pump, etc. We were seasoned in hospital stays, unlike the usual first-timers their staff typically encountered. Still, none of our previous admissions could have prepared us for what we were about to battle. Or for what would become our lives in the coming months, even years. We were in their world now, and this was a whole new ball game.

As I stood there next to Kailanie Dr. Parker, the hematologist that said she would be shocked if the results of the bone marrow came back positive for leukemia, delivered our life-changing news. The words “Kailanie has leukemia” shook me to my core, but in my heart, I already knew this.

I had been in some fairly scary situations with Kailanie in the past. Cancer had taken both my parents, which made this situation scary on a whole new level. From somewhere deep down inside, I found the strength to suppress my terror and sadness. We proceed to play the most horrifying game I have ever played of 20 questions with the doctors. I didn’t want, but needed answers. I quickly discovered there were not many answers at that time.

We waited in limbo, unable to start any form of treatment until we had final results and scans. The scans would prove to be the tricky part. The team needed an MRI done to figure out where to do a spinal tap. To do the MRI, we need the rest of the hardware out from Kailanie’s jaw surgery out, which had to be done sooner than her plastic surgeon wanted to.

After finally getting the MRI it was decided that a spinal tap would not be possible. There were too many meningoceles (sacs of cerebrospinal fluid around nerve endings from the LMS) to safely perform the procedure. They eventually decided to tap Kailanie’s shunt to obtain a sample of cerebrospinal fluid (CSF). Luckily, the fluid was negative for leukemia.

We were now looking at B-cell, low-risk Acute Lymphoblastic Leukemia, the best case scenario for our situation. Even though the spinal fluid was negative it still needed to be treated. How would they do that with Kailanie? They had no idea if the chemo would stay in her CSF long enough to treat it, or where to inject it….all because of the meningoceles.

Kailanie’s treatment had to be altered. Her amazing oncologist Dr. Schlis, along with her equally amazing neurosurgeon, Dr. Sayama, had a challenge ahead of them. Together they decided to treat her with high-risk chemotherapy during one phase of her treatment. Right before the high-risk phase we finally received word that Kailanie was completely IN REMISSION!

So far, we have survived some not very pleasant medications, just to name a few:

• Dexamethasone- a steroid causing bad mood swings and hardcore appetite
• Methotrexate- required four admissions consisting of four to five days each
• Pegaspargase (PEG-ASP)- this one requires an EpiPen for “just in case” reasons

We just recently found out Kailanie needs radiation treatment because they cannot otherwise treat the CSF properly. The team is worried that more chemotherapy might cause further health issues. Radiation will last for ten days, then she will begin the final phase of treatment, maintenance. We hear maintenance is a lot less intense.

Our family has high hopes of getting back to normal, well our crazy version of it anyway. This journey has involved more time in the hospital than even we as special needs family thought possible. It has taken a toll on every one of us. One thing is for sure, we will NEVER stop supporting our Unicorn-Superhero-Warrior-Princess. WE ARE KAILANIE’S CROWD

DON’T FORGET!

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UPDATE

Kailanie is thriving in the maintenance phase of treatment. She is back to walking completely independent, and even running. She will officially be done with treatment for leukemia on September 17, 2020.
✌️💜