Party, Deep Breath, and Dive In

After discussing where to "party" before (possibly) starting the stem cell transplant, we decided on driving down to Vegas, spending a few days there, and then spending some days up in Richfield for the 4th of July. We figured that would be a short enough drive that the kids wouldn't go completely crazy in the car and it was the closest place we could get our fix of Filipino restaurants and goodies.

Vegas was fun, and we got to see some nice, more "family friendly" sites. My favorite part would have to be the food, though, especially the Filipino food! The kids did great overall, other than getting tired of their carseats.

Don't let this adorable picture fool ya! He got pretty darn tired of that carseat after a while.

During our stay in Vegas, as I was walking to the car one day, I received a phone call. Upon looking at the caller ID, I could tell it was a number from Primary Children's Hospital, as I have received numerous calls from various offices there in the past, in regards to Kal. My mind flashed to the though that it may be the Bone Marrow Transplant (BMT) clinic with some news about the possible matched for Kal. I took a deep breath:
"Hello?"
"Hi, I'm looking for the parent of Kal _____.  This is ______ from the BMT clinic. How are you doing today?"
"Good."
"Good! I was calling to inform you that we have found an umbilical cord blood match for your son, Kal, and so we are ready for transplant."

In that moment, all the noise around me crowded in, and it was as though everything was so loud and muffled, like I couldn't hear anything clear anymore. I didn't even know how to respond, so I just muttered, "Oh. Really? Okay, great."

She continued to fill me in with all the information I needed to know, the upcoming appointments, etc. Reality just swooped down and took my words away.

I read a blog about a girl who underwent a bone marrow transplant in the same hospital. She described the BMT clinic as people who stay mostly quiet and out of the way until one day they swoop in and drop a bomb on you all of the sudden. I think that sums it up pretty well.

When I got in the car, I shared the news with Jonald. So many emotions that I had pushed to the back burner were beginning to resurface. I was not expecting them to actually find a match for him this soon. Because of his mixed races, I have heard stories of it taking maybe 1 to 2 years, if not longer, to find a match. Therefore, mentally, I just put it in my mind that a transplant was not in our near future.

Well, there we were- sitting in the car, flabbergasted, yet happy and excited, yet nervous and scared. We knew it was a miracle to have a match so soon, but also realized there were stormy seas ahead. It's a good thing we decided to go out of town when we did, as the timing was perfect. Now that we knew Kal was for sure going through transplant by the end of that month, it was time to party hard!

On our way back up from Vegas, we were able to visit Cove Fort, where my grandparents served as missionaries there before. Then, in Richfield, we stayed a couple of nights. It was great to reminisce of my childhood, where we would go down there for every 4th of July. I got to share with my family the things I enjoyed and experienced as a child on the 4th, such as the parade, races in the park, the money dive (they throw coins in the pool and you get to dive for them), and the fireworks. And, of course, we had to make a couple of visits to the Ideal Dairy to get a slush with ice cream! We also checked up on my grandparents' old house where they used to live, and, on the way out of town, stopped to visit their gravesites. It was as though I could feel their spirits and love surrounding us there.

Overall, it was a nice break for us to get out of town as a family. It was as though we were taking a warm, deep breath before diving into a frigid ocean.

By the way: I love how our kids' expressions on their faces are exactly the same in these pictures!

A week and a half later, on a Monday, we were at the hospital for the pre-transplant work-ups. Labwork, physical exams, meetings with specialists allllll day. He was actually fairly good through that day, though.

On Wednesday, oh gee, what a whirlwind of a day. My Visiting Teacher was kind enough to watch Kayelee while I tried to pull the house together and plan things. My aunt came and helped me sort out toys and sanitize them. When I took some toys downstairs in the basement, however, I found about half of our belongings down there sitting in puddles. Somehow, there must have been water leaking through the basement window. Great, exactly what I needed, less than a week from admitting my child into the hospital. At least Then, I received a phone call from Scheduling to set up a time for Kal's central line (broviac, double lumen) to be placed the next day. They wanted us at the hospital at 6:15, meaning we would have to leave home around 5:15, which means I would have to wake up about 4:45. I replied, "WAIT, 6:15 A.M.?!" Haha if you know me, you know I'm not a morning person. Oh well. After that, the BMT clinic called me with my lab results. (I had to be tested to make sure I had not been in contact with a certain, common virus in the past that stays dormant in your body afterward. If I had, then nursing him would greatly increase his risk of infection.) Good news! The test results were negative. Bad news: they still wanted me to wean him... by that following Monday. Like, we're talking, in 5 days from that time. Whaaaaat? I mean, I understand where they're coming from, being concerned about the antibodies transferring in the breastmilk, thus raising his risk of infection. I just wish I would've had a little warning.

Thursday was also a long day. Kal got in his central line, and also had an EKG, echocardiogram, and a hearing test while he was under sedation. After that, he was seen by his Immunologist in the post-op area. Once he was a little more awake, he had to have labs done again in the BMT clinic. They also decided to do a dressing change because there was a good amount of blood under his bandage. When the nurse took off the bandage to clean and change his dressing, I had to hold Kal down so he would not touch his open wound. That meant I got to be face-to-face with his fresh, open wound in his chest. Just the sight of the cut in his chest and the tubing running under his skin and out of the cut made my stomach queasy. But, finally, they finished up and sent us on our way. All in all, we were at the hospital for about 10 hours.

Friday was a little less eventful. We had an appointment with the Neuropsych specialist, which was fun because Kal just got to play with toys while the guy observed him. Then it was more lab work and a physical exam from the BMT clinic. After that, we got to meet with the doctor that deals with all of the BMT kids and sign all the paperwork. We were there at the hospital for about 4 and 1/2 hours, which seemed like nothing compared to the day before.

By the way, weaning Kal over the week/weekend has been super fun. *Sarcasm* We tried 6 different kinds of bottles, breast milk, formula, and even a mix of breastmilk and formula in the bottle. We tried my mom and Jonald giving him the bottle instead of me. I feel like we tried everything, but to no avail. Only once did he drink 2 oz. of breastmilk, and only once did he drink 3 and 1/2 oz. formula, but other than that, he has hated the bottle. For real, we've been riding on the struggle bus since Wednesday. I let the BMT clinic know of our bottle-feeding fights, and they said to just try and enjoy the weekend, and that he would most likely wean himself when he gets mouth sores (from the chemo) anyway.

Anyway, although a lot of this post (especially the latter end of it) may seem like I'm complaining. I hope you don't think that. I have witnessed so many miracles through Kal's journey of trials. It has strengthened my faith immensely. Yet, even if I have strong faith, that doesn't mean that I will not face challenges in this life. In this blog, I want to be real in my feelings about this experience. I'm not perfect, and these are hard things to deal with, especially seeing everything that our son, Kal, has faced so far. But his light strengthens me. Our family and friends strengthen me. My faith strengthens me. So when I am overwhelmed and am feeling weak, I have all of those things and people to lift me higher, to lift my weary soul. I am so grateful for what I have and who I have in my life. I couldn't even imagine being more blessed, despite it all. I have seen the hand of God in my life much more through these trials than probably all throughout my entire life.