Day +1: Into the Plus Days & Starting the Waiting Game

Morning smiles make my day!

The morning was pretty routine. The only thing different was we were waiting on word if they would continue on with the plan to include Kal in a study dealing with an infusion of stem cells coming from a placenta. The placental cells were actually supposed to arrive last night and given 4 hours after his cord blood stem cell transplant, but the plane flying it in had technical issues, thus cancelling the flight. The doctors were concerned that waiting until the next day to administer the placental stem cell infusion would affect his eligibility to be in this study. But, around 1 p.m., the nurse was informed the placental cells had arrived and were thawing in the stem cell lab, in preparation for transfusion.

A little back explanation as to what this study is all about: This company has a hypothesis that for those receiving umbilical cord stem cell transplants, if they receive this transfusion of additional stem cells from the placenta, then those cells (from both the umbilical cord and placenta) would work together and help the body be stronger, build good cells faster, and help keep down the affects of graft vs. host disease. They have not done it on many patients so far, as it is a fairly new study. On the other hand, they have not seen any adverse affects of performing this extra procedure. To me, it's like, "Duh, and umbilical cord and a placenta are used to working with each other. That totally makes sense! Why didn't I think of that?!" I've heard many supposed benefits of the placenta being consumed by the mother, but never heard of it being processed like this and given to a patient after a stem cell transplant, or given to someone for any other reason, in fact. When the doctor asked if we were interested in having Kal participate in this study, we came to a point where we felt at peace that it was a good decision to make. I mean, honestly, all of the medical knowledge, medicines, and procedures that Kal is benefiting from today is because plenty of people were willing to participate in medical studies. Since this study seemed to have hardly any risks from Kal participating in it, we wanted to pay it forward to those in the future by helping out with the study, in hopes that they learn something beneficial from it.

Once the stem cell lab workers arrived, they did some paperwork and prepared all of the equipment. We did have a pretty tense 15 minutes or so, though, because the product was dripping  a little from the IV bag. When the nurse mentioned it, everyone sort of panicked and put the bag back on ice until they could find something and fix the issue. Luckily, they figured out something else that would work just as well, and continued on with the transfusion. It was kind of funny and cute- the stem cell lab workers, and especially the lady who flew in from Chicago (that I believe is among those in charge of this study) were all so excited for this study and to see it in action. The lady from Chicago didn't even want to sit down or leave the room during the whole hour of transfusion because she was too full of jitters and excitement. She called this study her "baby," and said she wanted to visit Kal when he is older and free from his disease.

No hospital stay is complete without some cute hospital selfies!

The rest of the day was busy with different medicine and multiple checks for his vital signs related to this study. Other than that, though, it was just routine stuff. I counted the days Kal has been here, and I can't believe tomorrow will be his 12th day here! I swear, some days it seems to drag on, but it also hasn't felt like we've been here that long, either.

Day 0: Kal Had His Stem Cell Transplant! (:

 

It has been a whirlwind of a day! On one end, Kal received his stem cell transplant today! Woohoo! The time before transplant was pretty lackluster. Just the normal routine medicines, eating, mouth care, and sponge bath. He gagged on some of his medicine this morning, though, but apparently it wasn't enough to have to repeat those does of medicine, so that was great! Kal also threw up this evening while eating. I think the mucous is building up in his throat, as is typical with BMT patients, and so I believe he just had junk in his throat that got in the way of the food he was eating. Other than that, he's been a pretty good sport today. One thing he especially loves to do is check himself out in the mirror that they attached to his crib. Oh man, it is so funny how he loves looking at his reflection! I even have to cover the mirror with a blanket during his naps and bedtime because he will not go to sleep if he sees that mirror. He literally would just spend forever staring and smiling at himself. What a goof!

"Well hey, who's this cute looking baby in my crib?!"

It looked like he was giving himself kisses. (:

For the actual transplant, Kal received some "Benny" (Benadryll), to help keep down on possible allergic reactions to the cells entering his body, as well as some steroids. He's also been taking an anti-rejection drug since yesterday, which is an immune suppressant. I don't remember if there was anything else out of the ordinary that they gave him beforehand. After some family members came up to our room, we connected via Skype with some of our best friends so they could watch and join in the party.

Then, the official lab guy came in the room with his cooler and made us and the nurse sign some paperwork. I could start to feel the jitters and excitement then. It was like waiting to open a long awaited Christmas present, except even more important and special than any other material gift you could acquire. After that, the room filled with nurses, doctors, the social worker, the child life specialist, and BMT coordinator. We all put on party hats and pulled out his BMT birthday cake. My husband had the idea of the cake and to put the number "0" on the cake, since it was like Kal's life was starting over again. All the people in the room thought that idea was super cute! The BMT coordinator and social worker gave him adorable gifts while the child life specialist gave him a banner saying, "Happy BMT Birthday, Kal!" with notes and signatures from the nurses.

Daddy and Kal with Daddy's cute cake and "0" candle idea!

The moment that Kal took a chunk out of the icing... Whoopsie! Hehehe.

I know, as you can see here, Kal is quite the party animal.

The doctor also gave us a calendar for everyone to take bets on when he will engraft  (meaning his ANC (absolute neutrophil count) is over 500 for 2 consecutive days), meaning his body is starting to grow and produce healthy blood stem cells. When you place your guess, you must put money in the envelope and write your name on the day of your guess. Then, whomever's guess was closest gets... a big, warm feeling. The rules are that the money actually goes to the patient, no matter who's guess was the closest to his actual engraftment date. The doctor said the average is between Day 20- Day 30. So, take your guesses, people! (In my book, you're not required to put money in the envelope if you don't want to, but I would still like to know your guesses, just for fun.)

Then we all sang, "Happy (BMT) Birthday" to him, they hooked him up to the little IV line, and that was it! Sort of looks anti-climactic on the outside, I know, but it's the amazing things those little cells are about to do that is the big deal.

That's Kal's new stem cells- his new life in that little bag (the one that looks like blood). Crazy, right?!

On the other end of the emotions in this day, I got to talk with 3 different parents from our floor today and learn about what their children have been and are currently going through. All I can say is... there are no words. There are no words to describe the pain, heartache, stress, and hope that they have been through with their child's medical trials. I already have been able to count so many blessings throughout Kal's situation, but spend 5 minutes with one of those parents, and you'll think of a whole new list of things to be thankful for. My heart aches for them and their sweet children. I pray their children will continue to improve in their heath every day so they can start their road to recovery.

It is a surreal feeling that my son received the possible cure for his Chronic Granulomatous Disease today, from umbilical cord blood, held in a tiny IV bag. That itty bitty bag held the answers to hopes and prayers of many family members and friends. It held the start of a new life for Kal, including a bumpy road of recovery ahead. Yet, it also held the possibility of a distant future filled with exciting adventures void of fear, extra precautions, multiple serious infections, and recurrent hospital stays. It held his new lease on life. In my heart, that little bag of stem cells held a miracle waiting to happen.

Day -1: Rest Day

Today (I'm meaning Tuesday, even though I'm writing this past midnight) is the day before his transplant! Aaaah!

Basically the whole point of today is to give Kal's body, as well as everyone else, a break before his stem cell transplant tomorrow. For the most part, today really has been restful. I feel at peace with this decision my husband and I have made to put Kal through this process of
stem cell transplant, and to accept whatever happens as God's will. We have seen so many miracles along this path so far that there is no doubt in my mind that the hand of God has been at play to help ease our burdens, even long before Kal joined our family here on Earth.

Nothing too "exciting" happened today, which is great, medically-speaking. He is doing well eating with the whole pacifier lollipop trick we discovered yesterday (as described in my last post). We did have one time where he had some mucous stuck in his throat while eating, so he threw up that meal. But, that's just comes with the territory. It's expected that BMT kids (and adults, alike) will have issues with mucous build up in their throat and GI tract as well as eventually getting mouth sores and not wanting to eat. Since it is expected, I didn't worry too much and wasn't too surprised when he threw up.

Enjoying his baby food (this was not the feed he got sick during)

Messy boy!

"I'm the number one, cutest baby ever holding a spoon"

Kal hemoglobin counts were too low today, so he got his first blood transfusion today. Apparently, it is very common to get multiple blood and platelet transfusions during the BMT process as well, so I wasn't too upset or surprised that he needed the transfusion today. We saw his counts lowering over the past few days, so the doctors and nurses warned me this was coming, yet how common it is. Of course, I didn't know or think of  how much blood this unit, let alone this hospital, must go through in a day. Hooray for people that donate blood! It certainly is always something that's needed by someone.

One of my good friends was awesome and brought my husband and I lunch. My hubby requested anything Asian with rice because he hadn't had a good Asain meal in over a week. He really does enjoy typical American-style dinners that I cook, but after going so long without rice, he feels like he is dying without it, haha. That meal totally made his day!

Other than that, today has been pretty chill. Kal is wooing all of his nurses, of course. Sometimes the techs or nurse would just hang around in the room for a little bit, just watching him. Other times the tech would peek in the window to see if he was sleeping or not so she would know if she could come visit and talk to him. I don't know if it is because he is so healthy-looking and happy that mesmerizes them, since they are used to sick, crabby kids in pain most of the time, or if it's just something about Kal that draws people to him. Nonetheless, he is practicing and refining his flirting skills a lot here. He espeicially likes to hold the hand of whoever is using their stethoscope on his chest and tummy. Where did this kid get his smooth skills from, eh?! Hahaha.

Day -2: Last Day of Chemo!

I can't believe we're already this close to the day of transplant! Today he is getting his last doses of chemo. Whoop whoop! He got his last dose of one kind of chemo this morning (because it's only given once a day) and he will get his last dose of his other type of chemo tonight at midnight (because it's normally given every 6 hours, around the clock). 

So, I was expecting that his hair would have fallen out by now? But, apparently, after asking his doctors and nurses, the affects from chemo will actually show up and worsen more later on, including hair loss. They said his hair could start falling out anytime within the next few days, but may take up to a few weeks. It's okay, I'm sure he'll be adorable bald, too. In the meantime, I'm going to have fun playing with the little amount of hair that he naturally has. Today was a mohawk kind of day...except he kind of just looks like the baby from "The Incredibles." (;

Lookin' good in his mini mohawk.

I've seen my prayers as well of the prayers of our family and friends be answered today. Those who read yesterday's post know that Kal was not eating well yesterday. Well, today, we found out a way to get him to eat more. Since yesterday, he still is refusing me feeding him baby food with a spoon. The only time Kal ate yesterday was when Jonald was holding him in the rocking chair- as opposed to the Bumbo he was using before to sit in while eating. So, this morning, I sat him on my lap in the rocking chair and attempted to feed him- no luck. Then, an idea crossed my mind. If he loves his pacifier so much, I wonder if he'll still take his pacifier if I dip it in a little baby food. Ta-da! It worked! So there I was, rocking him in the rocking chair, dipping his pacifier in his food, putting it in his mouth, and then starting over again all until he finished it all. Sheesh, this kid- making everything difficult! Haha. I think he just always wants to prove that he's still the boss. It seriously felt like 100 years until he finished the food, but hey, as long as he ate it, right?! What we, especially parents, do in desperate times. So, that's our new method to the madness. I fed him that way for all of his other feedings for today, and he got down almost 4 containers of baby food, with some mixed with baby rice and formula! Mama for the WIN! Oh yeah! Oh yeah! Doing my mini victory dance inside my head! *Ehem* Carry on...

Kayelee got to visit Kal and us today. She and Kal really enjoyed watching and trying to pop the bubbles I was blowing in the room. It was simply blissful. The look on Kal's face was priceless. He hasn't had much interaction with bubbles before, so when he saw them, he was startled, curious, and excited all at the same time.

Sibling love. They couldn't stop looking at each other. Too adorable!

When Kal needed a nap, I took Kayelee down to the Forever Young Room. It's a play and craft area for patients and/or their siblings to come to and have fun. Kayelee decided she wanted to make a crepe paper flower headband- which really meant she wanted me to make one for her, haha. Luckily, my friend that works at Primary's dropped by and helped me make some flowers. Kayelee also enjoyed coloring and painting. She even colored on a picture of Olaf (from the movie Frozen) to give to Kal and hang in his room.

When we headed back to Kal's room, one of the nurses saw Kayelee wearing her flower headband/crown and said, "Oh, you know what goes with that crown?!" He then went to the cabinet and pulled out a pair of purple fairy wings. Kayelee was delighted and wore them around the unit, showing them off to the nurses. It was a precious moment, for sure!

Showing off her flower crown and fairy wings.

Thank you for all of your love, prayers, and support! It has been an overwhelming source of strength and love. I'm glad Kal's light can be shared this way to brighten so many people's lives. He really is a treasure to have in our lives, and it's an honor for my husband and I to be his earthly parents.

Day -3: Bumps in the Road, Par For the Course

 Today has lasted forever. I kept staring at the clock and thinking how long until this day was over with. There have been some wonderful highs, and then some typical lows.

A beautiful sunset out the window, and a handsome reflection in it. I thought it was kind of poetic how two these two worlds were separated by a simple piece of glass.

I think I jinxed myself for saying in my last blog post that I sleep better while being in the room with Kal. Last night was not the best. The nurse came in every hour to do something: administer the chemo, take off the chemo, change the IV lines, check vitals, or even to just check on him. Don't get me wrong. I love nurses, I have many friends who are nurses, and I know she has to do her job with extra monitoring ever since his chemo regimen started. I just wish at nighttime everyone would just magically not be sick so the nurses wouldn't be required to check in while we're sleeping. Is that too much to ask? (I hope you know by now I like to use sarcasm quite often.)

So, with all the middle-of-the-night wakings, Kal got up extra early, around 6ish, but fell back asleep with his pacifier until a little after 7. Ugh. Mornings. He was getting a little fussy, so I prepared his baby food concoction while the nurse administered his morning meds. Kal kept gagging on his meds, which wasn't too typical of him in recent days. Luckily, he finished all of them eventually. Then, I tried to feed him his baby food mixture, and he was refusing- like, screaming bloody murder and covering his mouth with his fist and arm, flat-out refusing to eat. Whenever I tried to sneak in a half spoon of baby food, he would gag so hard as if he were going to vomit at any moment. That wasn't like him. He was being such a rock star eater with his baby foods in the past few days, and now he suddenly hates it? After talking with the nurses and doctors, we all agreed that this was just the chemo catching up to him and showing some of its affects- nausea and loss of appetite. Boo.

Morning snuggles with Mama

We gave up on that battle to force feed him because we don't want to make him hate eating. It was just so sad, though, to see him so frustrated. I could tell he was so hungry, yet he didn't want to eat anything. That made for one fussy baby. Finally, we got him to calm down, just play, and be happy. Mama and Daddy snuggles also helped out (and us, too hehe!). There was one time he was sitting in his Bumbo and he wanted to play with the side of his crib, so I moved him closer to it. It was so cute- he wanted to grab the bars of the crib and it made him look like he was in Baby Jail. Yeah, well, he kind of is in real life anyway, but he makes being a hospital inmate look cuuuuuute!

Ahh! Let me out! I want my lawyer! (Hehehe)

 

Jonald and I were able to attend church here at the hospital today. They have a Primary Children's Hospital Branch that meets in the Auditorium here. There is only Sacrament Meeting, and it only lasts 30 minutes. I'm guessing that's so the parents (and sometimes patients) don't have to stay away from their room for too long. I even saw some doctors attend the service today. The feeling in that room was overwhelming. It was wonderful to feel in the presence of so many members of the Church whose families are going through medical trials as well. It was like we all supported each other in Spirit, but probably hadn't spoken a word to one another before. For the opening hymn, we sang, "Come, Come Ye Saints," probably in honor of the recent Pioneer Day holiday this past week. Although this song was written about the Pioneers in the past, the lyrics to this song began to have a new, beautiful meaning to me as I am here with Kal during these medical trials. I could barely keep the tears that were welling up on the brims of eyelids from falling down my cheeks. The song brought so much release of emotions, yet peace and strength to my heart. If you don't know the words of the song, here are the lyrics:

Come, come, ye Saints, no toil nor labor fear;

But with joy wend your way.
Though hard to you this journey may appear,
Grace shall be as your day.
'Tis better far for us to strive
Our useless cares from us to drive;
Do this, and joy your hearts will swell--
All is well! All is well!
 

Why should we mourn or think our lot is hard?
'Tis not so; all is right.
Why should we think to earn a great reward
If we now shun the fight?
Gird up your loins; fresh courage take.
Our God will never us forsake;
And soon we'll have this tale to tell--
All is well! All is well!
 

We'll find the place which God for us prepared,
Far away in the West,
Where none shall come to hurt or make afraid;
There the Saints will be blessed.
We'll make the air with music ring,
Shout praises to our God and King;
Above the rest these words we'll tell--
All is well! All is well!
 

And should we die before our journey's through,
Happy day! All is well!
We then are free from toil and sorrow, too;
With the just we shall dwell!
But if our lives are spared again
To see the Saints their rest obtain,
Oh, how we'll make this chorus swell--
All is well! All is well! 

"Come, Come Ye Saints"

Text: William Clayton, 1814-1879

Music: English folk song

After church, they had a table with blankets on them where you could take one for your child. Stitched on to the blanket was a sweet little tag. I love the scripture on the tag, "and he took their little children, one by one, and blessed them." That scripture brings a whole new meaning to me now, about how precious children really are in the sight of God. I can almost envision the angels coming to the hospital and kissing all the children in their sleep.

Showing off his adorable new blanket

The rest of the day just kind of dragged on: fighting for him to eat, distraction play time, and then naps, along with all of his medicines and medical what not. He did finally eat about one package of baby food throughout the day. That's it, though. Poor little buddy. He must be starving.

I saw one of Kal's previous nurses in the unit tonight, as she was assigned to different patients this shift. She asked how Kal was doing, and I explained to her about his refusal to eat much today. She sighed and said, "Well, unfortunately, that's just par for the course." It sounds like we're just getting to the tip of the beginning of Kal's rough days. Hopefully he will do well weathering out this storm. In the meantime, I will be keeping the lyrics to "Come, Come Ya Saints" in my mind and close to my heart to remind me: "But with joy wend your way. Though hard to you this journey may appear, Grace shall be as your day... Gird up your loins; fresh courage take. Our God will never us forsake; And soon we'll have this tale to tell-- All is well! All is well!"

Day -6, -5, and -4: Keep On, Keepin' On, With Blessings!

Phew! Sorry to not have an update in a few days. Honestly, I didn't feel up to posting much about updates, since I was home and couldn't see much of the action myself. Plus, I just missed my baby boy so, so much. Trying to think, and especially write, about him just made my heart ache.

Day -6

According to my husband, Jonald, Kal did well for the most part. He was taking his same medicines well, and doing awesome in his eating solid foods, especially. Lately, Kal has been enjoying peaches and bananas for the most part, but he also doesn't mind sweet potato and pears. Jonald still had no luck with the bottle.

At home, it was such a weird feeling to not have Kal there. As I got up from bed that morning, my first thought was, "Okay, I have to get up Kayelee and then Kal... oh yeah, Kal isn't here. He's at the hospital." My heart sank a little.

I tried to keep busy and enjoy my time with Kayelee the best that I could. I knew I would only have a couple of days with her, so I wanted to make it count. Our air conditioning went out that day, so we went to the pool to cool off. At the pool, I saw a little baby boy who resembled Kal in appearance and age. I couldn't stop taking glances at him. That little baby boy was so happy, enjoying the pool. It reminded me of how happy Kal usually is, and my heart sank a little more. I almost started crying, but for fear of looking like a lunatic, I held myself together. It's a good thing I was wearing sunglasses though, to hide my watery eyes from everyone, especially Kayelee. After her naptime, we (me, my daughter, and my mom) went and watched "Heaven Is For Real" at the dollar theater, to enjoy their AC, and then we watched the fireworks with some of our best friends. (P.S. If you haven't read that book and/or seen that movie, you should... but keep a tissue close if you're watching the movie. It brought my thoughts back to Kal at the hospital, and what a sweet soul he is. My heart sank a little more, but I brushed it off and enjoyed Kayelee sitting in my lap in the movie theater.) Going to the fireworks was really fun and good to see our friends. It took my mind off of Kal for a little while, as I just tried to be in the moment and enjoy the moment as it was. Blessings: great family and friends to spend the night with!

Best buddies for life!

On the other hand, Jonald said Kal had a hard time settling down to sleep that night. Poor baby and daddy! While the rest of us were having a blast watching the fireworks, my hubby was rocking Kal for 3 hours until he finally settled down.

Day -5

First day of chemo. I cannot tell you how much it pained me to not be there for that. I know it usually takes a few days or so for the chemo affects to really settle in, but I just felt like I needed to be there for my baby on such a day.

Kal still did awesome with all of his meds and oral care. He still hates the bottle, but will take formula if it is put into a syringe and given as a medicine. Haha, stubborn little kiddo.

 Can this video of him eating be any cuter?!

The doctors have been really happy at how well he is doing. I think they kind of chilled out/gave up on the idea that he would take the bottle anytime soon, because they said I could come back to the hospital! Whoop whoop! Blessings!

I called the social worker and was lucky enough to get a room reserved in one of the Ronald McDonald overnight, sleeping rooms (since only one parent can stay the night in the room with the patient). Blessings! My mom was helping my sister for the day, so me and Kayelee hung out until she got back home with the car. Since the AC was still out, we walked over to the pool and had a good time.

Also, on a side note, since I was home, I was able to find the probable cause for our basement leaking in water. There was a maintenance guy working outside that I was able to ask, and we found out our underground drip line had a huge split in it, causing a geyser of water to hit our house and fall down into our basement window well. He was very kind and able to fix the drip line right away. Blessings!

That evening, my mom, Kayelee, and I decided to go together to see Kal and Daddy. When I went in the room, I just wanted to hold Kal forever and never let go. Before I got to pick him up, he was laying in his crib and looked up when I walked up and called his name. The smile on his face was the sweetest thing! Sweet blessings. But, more than being happy I was there, Kal seemed to be more enthralled that his Ate (big sister) Kayelee was there. He wouldn't stop watching her and beaming this huge grin. There is really something about Kal that he just loves Kayelee so much. When I held Kal in the rocking chair and Kayelee sat next to us in the chair, Kal was watching his sister's every move. It was Ahhh-dorable! Oh, it just melted me! Super cute blessings for adorable kids, and for the time we were all able to spend together.

When it was time for my mom to go home with Kayelee, I didn't imagine it being so hard to say goodbye to her. When Kal was admitted, I just said goodbye to her before she went to bed the night before, and when she woke up the next morning, I wasn't there. This time around, she was awake and realized that I wasn't going home with her. I gave her a long hug and explained to her that it was my turn to watch Kal. She was hesitant to get on the elevator with my mom, but eventually did. She did not throw a fit or cry, but I could see the sadness in her eyes as she left. I could feel my heart being torn and a piece taken home with her. It is a terrible feeling, being so elated to be back with Kal, yet so sad to see my little girl have to go home without me. I'm getting choked up as I'm typing this, just thinking about it.

Day -4

Yay! I get to be with Kal the whole day today! Honestly, as weird as it sounds, waking back up in the hospital this morning felt amazing. I was so happy to be back, I could hardly sleep last night. I think I actually get a better night's sleep being in Kal's room, despite the nurses coming in and out every 4 hours or more, rather than in the Ronald McDonald sleeping room or at home. It's so funny: since Kal has been admitted, I have been waking up more during the night when I'm away from Kal than when I am in the same room with him in the bustling ICS unit.

Ohhh, I have SO missed these snuggles!

It looks like he's gained weight over the past couple of good eating days that I've been gone. His cheeks look fuller, and his neck is a little chubbier, too. As the nurse told me today, "We support double chins here."

So, apparently he is on 2 kinds of chemo. They both run every 6 hours, around the clock, I believe. I haven't noticed any signs of the affects of the chemo yet, thank goodness. Blessings, for real. He continues to eat his solids wonderfully, and will still get in a little formula through the syringe as well.  Kal continues to be such a happy baby. Even the nurse tech mentioned today: "He just seems so 'with it.' He feels like he is an 'old soul.'" I couldn't agree more.

What. A. Charmer.

During Kal's nap, I was able to have a moment to sit out on the 3rd floor patio today. The warm sunlight was medicine for my soul and energizing. Blessings! I felt like my inner batteries were charging out there. A little Vitamin D from sunlight goes a long way for me. With 3+ weeks (or more) to go here, I think I'll be visiting that patio often to keep my sanity.

On a side note, the guy came to fix our AC at home today. Woohoo! He was scheduled to not come and check our AC until Monday, but then had an open spot this afternoon. Thank goodness! Cool, refreshing blessings!

Well, time for Kal to eat again. This blog has encouraged me to see the light and blessings in every day. I encourage you to do so as well. (:

End of Day -8 and Day -7: I was "kicked out" :(

"We must the onward path pursue,

As wider fields expand to view,

And follow him unceasingly,

Whate'er our lot or sphere may be." 

- Hymn: "Come, Follow Me"

So guys, I must have jinxed myself... or Kal. When the Lactation Specialist came to see me yesterday, she said that basically I would just have to pick a day to stop nursing him and stick with it. After that and some thought, I figured he won't get anywhere with weaning if I keep offering him to nurse every time he refuses the bottle. So, after a little bit of thought, I just decided, "no more." As the days pass on and his body's immune system is becoming more and more weak, I would rather him be safe and away from taking my breastmilk than perhaps ending up in the ICU or worse because of some random infection that could possibly happen from nursing. I keep trying to remind myself to have the future in mind.

Wellllll, about that. Kal has not nursed since around 1 p.m. yesterday (yeah, Tuesday... and sorry, since I'm writing this post so late, you'll probably be reading this Thursday or later, so when I say "today," I am meaning Wednesday). Anyway, yup, his little stubborn self has decided to go on a hunger strike. He absolutely refuses to take a bottle from me or the 2 nurses that tried, no matter what we try and what we change to see what will work. He didn't eat anything the rest of the day, except for a couple syringes full of formula as well as his medicines.  Since he didn't have a wet diaper for a good while before he went to bed, the nurse decided it would be best to hook him up to some IV fluids over the night so he does not get dehydrated. Poor little boy! I felt so bad for him. He was obviously so hungry, and was crying a lot. The only way to succor his anger and sadness was either from the pacifier or if he would be so upset that he'd cry himself to sleep. All the crying made me feel so weary. It is so hard to hear your child screaming and see them looking at you with the saddest expression, as if to say, "Why, mama? Help me, mama! Why don't you help me?" Oh it just breaks my heart and makes me want to curl up and cry. That facial expression is engrained into my mind now, and every time I take a moment to recount it, it just makes my stomach turn and my head spin. Ahh, I can hardly stand it.

His new IV so he won't get dehydrated.

On top of that, Kal's doctors dicussed what the plan would be next to help Kal wean. Their last suggestion was to "kick me out" for a few days. Basically, they said with some kids, it sometimes works if the nursing mother leaves the hospital for at least 2 days, if not 3. That way, he can not smell me and therefore, in theory, would be less likely to reject the bottle, even though the nurses tried to give him a bottle and he still refused. Anyway, they said after at least one day, Kal should supposedly realize that this is his only choice of liquid food he will be offered, so he will, as the doctors put it, "sometime get hungry enough that he will eat from the bottle." Okay, yup, because it's always that easy... At least we have been blessed beforehand that Jonald has this week off so he could help settle us in to the hospital anyway. That way, he could stay at the hospital with Kal while I have to stay away for a couple of days.

Honestly, I'm not too excited about trying this plan out. I mean, what parent would be? I just feel so guilty leaving my sick son in the hospital, and leaving my husband with a cranky, hungry kid that doesn't was to eat from the bottle. The only thing keeping me on this plan is the fact that as much as I hate how stubborn and grumpy he is now, I would hate it more if he got an awful infection and damaged even more parts of his body, or worse, saying that when his immune system will be at it's lowest,  a simple, common cold could kill him. If this plan is our last resort, we might as well try, right? If it doesn't work, at least we can say we tried.

During the night, he must've been exhausted from all of the crying because he slept great through the night. Even though I had been pumping a little and using my awesome-smelling cabbage leaves yesterday, I kept waking up in the middle of the night with so much pain. Without going into too much detail, basically weaning, especially trying to do it that fast, is OUCHIE!

This morning, Kal woke up in a good mood. That is, until the hunger set in. I had the thought that if he would take some baby food, maybe that would help him get the calories and nutrition he needs to help him feel a little better. He was never good at eating baby food at home, but today I tried giving him some peaches (baby food) and he finished the whole thing! A miracle! He then seemed to feel a whole lot better and was able to get a good nap in after that.

Chomping on his pacifier because he's so hungry this morning.

After his nap, he seemed hungry again, so I figured I would try to give him formula again- no go. But, on the other hand, he ended up finishing the package of pears and a half package of squash. Miracle again! That helped him settle into his next nap, along with the fact that he was given another dose of Tylenol and Benadryll. (Side note: his nurse calls Benadryl, "Benny," and it cracks me up in my mind when I hear her say, "Allrighty, we're gonna get Benny for you." At first I thought she was talking about a person named Benny, so it took a moment to realize she was talking about his medicine instead.)

Then, Jonald showed up during Kal's nap. My heart lifted to see him again, but it also sank with the thought that I would soon have to leave both him and Kal there, alone, for at least 2 days, if not 3. I tried to hold myself together as I said goodbye to Jonald, Kal, and Kal's nurse. Once in the car, it took me a good couple minutes to convince myself that it was all going to be okay, and that I could allow myself to go home for a couple of days.

Getting home lightened my mood. Waiting for me were wonderful dinners, side dishes, and goodies sent by our lovely sisters from our LDS Church ward. They are all so sweet and giving.

Also, Kayelee came to greet me at the garage door as I came in. She was so excited to see me. Perhaps the reason Kal is not weaning for now is so I could spend some Mommy-daughter time with Kayelee for a little bit. Perhaps? I was trying to find answers in my mind as to why he's been struggling so hard with this whole weaning ordeal. I think for now, I just need to remember to trust in God's plan, for he has much better foresight that I. (;

More miracles, though! Jonald fed Kal baby food, mixed with some formula and baby rice around 5 and 9 tonight, and guess what? He ate it all again! Jonald said he ate the food super fast. That made my day to hear that, especially when he sent me these adorable pictures via text, with the cute captions to go along with them:

"Mommy, look at how much I ate!!! I was even leaning towards the spoon and Daddy fed me so fast and I ate them so fast, too. It is a combination of peaches baby food, 2 T baby rice, and 2 oz of formula."

"I want more foooooooood!"

How cute are those pictures?! Ahh, I miss this baby so much already. Oh, and my hubby too. (;

Anyway, I better get off of here. I was told Sudafed helps dry up your milk while weaning, so I just took some before sitting in bed to write this, and I am swinging in and out of a sleeping state right now.

We could always use prayers on behalf of Kal, specifically that he will be able to relax and take a bottle when Jonald tries again tomorrow. Thank you everyone for the prayers, love, help, encouragement, and support already!

Hospital Time! Day 1 & Day 2 (Days -9 & -8)

So, Kal was admitted into the hospital yesterday to start the real party and process of pre-transplant, transplant, and post-transplant. We're here! We finally made it! It almost seems so surreal- like you've been planning, struggling, and preparing for an upcoming race, and one day you wake up with your feet on the ground running.

One thing you should know first about the hospital process for a bone marrow/stem cell transplant is how they count in days. Every day in the hospital before the transplant is counted as negative (-) days. Transplant day is Day 0. Every day after that is positive days. Therefore, our first day in the hospital, yesterday, is actually considered Day -9. Today is Day -8. Get it? It's like you're the NASA people counting down for a rocket to blast off. Anyway, I will be trying my best to update everyone daily, or at least every other day, depending on what's going on.

Day -9: Day of Admit

Happy boy before all the medicines

Not too shabby of a view, for sure! Kal likes to watch the cars as they drive by.

I had to zoom in for you guys to see it, but we actually get a view of the Salt Lake Temple from our room! Ba-boom! Talk about an awesome reminder for keeping our sights and perspective in the right direction.

After getting everything situated with paperwork, rules of the ICS (Immunocompromised Unit) laid out, etc., then it was time to get things going. They did all of their vitals they needed to take for him, and then started him on Prilosec (so the rest of the medicine won't come back up and/or injure his stomach) (orally), steroids (orally), Tylenol (orally), and Benadryl (IV). Then they started him on what is called "Rabbit." It's called that because it's actually made from rabbits. I know, weird, right? I'm not the scientist that could explain what they take out of the rabbits, how they process it, and why it works. I just know it works, and that's good enough for me! The "Rabbit" is what will knock down all of his T-cells, which, to my understanding, are basically the first line of defense in a person's body. This will help his body not reject the stem cells after they enter his body.  Oh, and I apologize to those who I misinformed. The nurse told me yesterday that the "Rabbit" is actually not chemo. It is just a really strong, immune suppressing drug. He will be on this for 4 days, and then be on 2 kinds of chemo for 4 days after that.

Don't let the screen fool you. It says it's giving him chemo, but it's really the "Rabbit" infusion.

It's kind of like in the movies, when your army is trying to enter and take over a strong, guarded city with a wall. You first have to take out the guards that are on watch (that's what the "Rabbit" does). Then you take down the wall (with chemo), then you take out the people of the city (I know, pretty harsh, right?) (also what the chemo does), your people enter the city to live (transplant), and then you and your army get to rule the city now, reproduce, grow the population, and live there forever. Tada! Easy as pie, right?! I mean, that's if everything goes as planned, of course.

With the "Rabbit" comes very common side affects. The most common side affects are rash/hives and flu-like symptoms. That's why they administer the Tylenol and Benadryl beforehand, to help keep down any side affects that may arise.

Other than getting a little warm and pretty crabby yesterday, he actually did really well. No "true fever" and no rash. The doctors were shocked that he didn't have those symptoms, as most patients do. A little miracle for ya!

The only other stuff going on yesterday were meetings with Child Life, Social Work, BMT charge nurse, BMT doctors, having the nurse changing the dressing for his central line again, and a sponge bath. Overall, especially compared to some of the other kids here, it was pretty chill. That's a good thing, for sure. The doctors said the best thing you can be here is "boring." That means you have nothing crazy going on and things are going as planned (or even better than expected). If you're not "boring," you're probably in some trouble, medically-speaking. So, here's to hoping we stay absolutely, completely boring throughout our whole stay here! (;

Day -8

Well, I don't want to jinx it, but today has been pretty darn boring, medically-speaking. (Like I said above, boring means Kal is doing really good!)

Morning snuggles: ohhh I just love them! And, doesn't that mini hospital gown just add to his cuteness?! So cute. (:

Not so many new things today- again with all those same medicines. He is napping a whole lot better today, and I even got to catch a cat nap- whoop whoop!

Physical therapy came to check on him, and so did the BMT doctors and Lactation Specialist. I could tell the Lactation Specialist wasn't exactly thrilled that she was called up to our room to give us advice on how to wean Kal to a bottle. Hahaha. It was actually kind of funny to see her trying to give me advice. She was very hesitant, but luckily the nurse was in the room at the same time, and kept explaining to the Lactation Specialist that it for safety's sake that they want the breastfeeding kids to wean to formula, due to increased risk of infection from the mother, and from the mother's breastmilk. She finally suggested that perhaps cold packs and cabbage leaves might help. They've been known to somehow dry your milk supply up, and if there's no milk for Kal to have from me, then he'll be forced into drinking from the bottle. We'll see how that goes. Jonald ran to the store to get me some cabbage, and now I smell like a salad bar, just so you know. Oh you know, it's the new, latest trend, right? Hahaha.

Also, a dear friend was so sweet to drop off lunch and goodies today. Ohh the roasted chicken ceasar salad, cookie, and roll were divine! Plus, she included some sugary goodies to keep things interesting, as well as the most amazing swaddling blankets in the world. It was actually the perfect timing, because that morning Kal's diaper leaked poo on his only swaddling blanket, and I had to just have him sleep in that one anyway, because there was no way he would nap while I threw it in the washer and dryer. Perfect timing= mini miracle for us!

Well, time for Kal to eat. Plus there's some annoying alarm going off saying his infusion is complete (for his flush, I think). We're going to have the nurse try and give him the bottle. Please pray for him that he can wean well, please! (:

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.