NavigatingLifeWithLMS

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Sometimes as adults, we have so much to say to our young ones, only they can’t always understand everything that is said to them. This a letter to Kailanie, my baby girl, to read when she is older:

From the moment we found out I was pregnant with you, we loved you. When we went in for our first screen ultrasound, and indicators of future struggles were found, we loved you more.

With every ultrasound, measurements of your growth, genetic test results stumping the doctors, and everything else, we loved you more.

With so many unknowns of your future and health, all we could do was love you more.

My entire pregnancy with you I was your protector. I prayed, meditated, talked to you, and did everything I could to keep you safe. I hoped and wished for you to be born healthy with no immediate medical concerns. So, when you were born healthy on October 28, 2014 (at 4:58AM)., with only a hard to break bag of water, short umbilical cord, small chin, and a spot over your kidney that flared when you cried, I loved you more. I loved every little part if your 5lbs 13oz and 19½-inch tiny body more.

After finding your cleft palate and I had to stop breastfeeding you, I knew I needed to love you more, so I did. Then, shortly after that, you were admitted on December 10, 2014, for failure to thrive. Your dad and I were terrified. At one point they did a test on your umbilical cord. The results could have been terminal. What did we do? We loved you more.

At the time of your first surgery to make your NG tube a G tube and remove your appendix, again, we were terrified. All we could do was love you more.

Before we found out about your Chiari Malformation, you did a lot of vomiting and choking. Your airway would completely close, and you would turn purple and blue. We were so scared and felt so helpless every time we had to rush to the ER. All we could do was love you more.

Through your Chiari decompression on June 10, 2015, and later shunt placement, we held you close. There was no other way to help you, then to love you more.

After stumping genetics since before you were born, on September 25, 2015, we finally received your genetic diagnosis of Lateral Meningocele Syndrome. We were scared but excited to have a name and some answers. Knowing our journey had just begun, we held you tight and prepared to love you more.

Through ear tube and cleft palate surgery in November 2015 that left you with severe obstructive sleep, and opened a whole new can of worms, we loved you more.

We were so happy for you when you finally gained independence and mobility by learning to butt scoot in January 2016. We couldn’t help but love you more.

With every hospital admission, sleep study, fight with CPAP masks, another Chiari decompression, cord untethering, shunt work, eating more solids by mouth, and working on your speech…we loved you more.

You started pulling yourself up in January 2016, then started walking with parallel bars in August 2016. You advanced to using a walker in January 2017. Even more amazingly, on July 21, 2017, you walked across the room completely unassisted! We couldn’t have been more proud of you. And you guessed it; we loved you more.

September of 2017 started a series of events that mark the darkest and scariest year of our lives so far. Your abdomen started to swell because it was filling with cerebrospinal fluid (CSF). For some reason, your little body stopped absorbing the CSF. After 5 surgeries that included externalizing your shunt and cauterizing your choroid plexus, they had to lead your shunt into your heart. During that long 3 week stay, we held you tight, and loved you more.

In November of 2017, after Turing 3 in October, you started preschool!! We were SO proud of you. It was a scary and exciting transition for you. To help you adjust, we loved you more.

We had a huge scare, again, starting on November 29, 2017, when you had your jaw distraction. Seeing you intubated was hard enough, but dealing with you having viral and bacterial pneumonia with a UTI made it harder. The hardest part was talking to hematology about testing for cancer if your counts didn’t come back up. We hoped, wished, prayed, sent you healing energy and vibes, while loving you sooo much more.

You got sick with cold at the end of January 2018. That cold turned into the scariest moment in your little life. I would have given anything not to hear the words “we found leukemia cells” as preliminary results of your bone marrow biopsy on February 9, 2018. Acute Lymphoblastic Leukemia was your official diagnosis just days later. Alone with you and scared, I held you close and tighter than I ever had before. I begged and pleaded with the universe to save you. I loved you more than I ever thought was possible.

Before you were able to start treatment, we needed an MRI, which meant the rest of the hardware from you Jaw distraction had to come out, and a port needed to be placed…at some point they also gave you a programmable shunt. The doctors had a hard time coming up with a game plan for treatment. While we waited, we held on tight, and loved you more.

Your first initial stay with the leukemia diagnosis was about a month long; the longest one yet. You took your first chemo like a champ and held on to most of your hair, even after dad shaved you head just a few weeks in. Short hair and all, we loved you more.

After 4 intense rounds of methotrexate, requiring 4 hospital admissions, your hair was falling out like crazy. By the end of July, you didn’t have much left. You didn’t seem to mind because you kept smiling. Dad and I protected your bald head from the sun, and continued to love you more.

On September 17, 2018, you officially started the last and final phase of treatment, the maintenance phase. On September 17, 2020, you, my Unicorn-Superhero-Warrior-Princess, will be done with treatment for leukemia. We celebrated this by all of us, including Auntie and her family, going out to dinner. When we got home, we all sang “happy maintenance phase to you” to the tune of the Happy Birthday song. We celebrated your huge victory and, of course, we all loved you more.

The next day, September 18th, was your first day of preschool for this school year. You cried a little the first day. The next week you were going to class on your own. We realized then just how grown-up you are becoming. Needless to say, we loved you more.

The last few weeks you hemoglobin and platelets have been low. You have had 4 platelet and 2 hemoglobin transfusions. Your counts are slowly recovering. As we prepare for your birthday party and your 4th birthday on October 28, 2018, we are hoping, wishing, praying, and thinking positive about your future. Yet again, we are loving you more.

The point is: you have survived so much in 4 years. I can’t count how many times you beat the odds. You have blazed your own trail and are making history. You are not just a miracle in the making, Kailanie, you are the miracle, my sweet girl!

As your mom, there is nothing that could make me love you, or your brothers, less. I will always be here cheering you on through the good and the bad. When you need me, I will be right here for every up, down, hope, and dream. With everything you do, no matter where life takes you, I’ll always love you more! This is your journey, princess, and I am here to love you through it.

As an after note: I cried while writing most of this. I relived every moment, the good and the bad. I didn’t include all her important moments, but tried to touch on the most important ones. I wouldn’t trade any part of our lives with Kailanie for the world.

I wish you all peace, love, and happiness ❣

DON’T FORGET!

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One last note

Rare Disease Day is February 28th, Childhood Cancer Awareness Month is all October long, Pediatric Cancer Awareness Day is September 27th. Let’s show these rare disease/disorder and childhood cancer kid’s we are here to support them every month, every day, every hour, every minute, and every second. They are fighting huge battles no one should have to fight. This is their journey, we are here to love them through it!