Journal #54 – Her 1st Absence from School

October 7, 2016

Why hello everybody! It’s been forever! No news = good news… right?! Meaning Marvel has been doing quite well!

She’s been on a steady dose of 2 mL of tacrolimus (prograf) twice a day. Mood swings pop up here and there, but have settled down with her body getting use to the smaller dose these past 2 months. Her protein leakage has been bouncing back and forth between negative and trace, but that raises no alarm. She’s a fighter!

Mid-September marked her 2-years since starting prograf. And she’s currently been in remission for 5.5 months! Praise be to God!!!

 

We did have a bump in the road first thing this morning…

Both Marvel and Tank slept on a mattress in our room last night, they don’t do well with rain or storms. Just after midnight, I woke up to Marvel coughing. It was “that cough”, the one you know will be followed by throw-up. Sure enough it came, along with her tears. Me jumping out of bed woke up Hubs, so we both were cleaning her up in our bathroom, settling her down, and rearranging our sleeping spots. But it didn’t stop there…

Every hour, she threw up. She threw up twice in the 6 o’clock hour. I called Children’s first thing when they opened and left a message for our Nephrologist. Then I started texting our family doctor who quickly responded. He phoned in a prescription to help with her vomiting and gave me instructions if she didn’t get better. (I want to note that God is amazing, I have proof with our family doctor. He’s always been available to us and voiced how much he loves our little family and wants us to contact him anytime we need anything. We have the best family doctor!) I tested Marvel’s protein, leaking trace. Not a big threat at the moment, but keeping a close eye because it could quickly turn for the worse. Then I texted Hubs at work with a small list of things to bring home to settle Marvel’s tummy.

Time passed, and she continued throwing up every hour. Like clockwork! I called Children’s back, around lunch time, and finally got to talk to Wendy. She helps me a lot when our doctor is unavailable. Wendy rocks! But she advised to withhold food and drink for a while, to let Marvel’s tummy rest and try to get better. We’re withholding to an extent, Marvel is just so weak and thirsty, we can’t help but help her a little.

Marvel did get herself down for a nap, which almost never happens, and slept for an hour and a half. Poor thing really needed that nap! By the time she woke up, Hubs was home with the tummy-settling foods and medicine. I just gave her her first dose. Hoping it helps keep things down. She’s still acting weak and lethargic, but we’re gonna kick this stomach-bug in the tooshy!!! BRING IT!!!

Journal#53 – Comfort & Confusion

August 7, 2016

This is what happens when Marvel’s personality, mood, and sleep patterns have been thrown off due to medicine… And when she’s on the brink of another relapse. We go into chill mode and try to keep things as mellow and happy as possible!
We’ve got mattress in the living room, low-sodium chips for snacking, video games, YouTube videos of Disney World, and me crocheting next to my strong girl.

It’s truly hard seeing her like this. She doesn’t want to be bothered, so sissy is being distracted with videos. My sister-girls are usually inseparable, wanting to be together even when it’s their “alone-time”.
Sitting next to Marvel to crochet, she was quick to let me know she wanted nothing crazy, she typically loves me coming to snuggle her and play.
She’s so distant in these conditions. I know it’s not her fault, and I’m trying to teach her about her medication and how it can throw her off on the inside to where it shows on the outside. She’s not old enough to completely understand, but I won’t stop trying.

I’ll be calling Children’s tomorrow to update them on everything. We’re struggling finding the right dose of prograf while also keeping her personality in tact and keeping her in remission. Praying my little girl comes back to us and for healing!

Journal #52 – Noticeable Side Effects

August 5, 2016

Dramatic mood swings, dropping items, and being so tired… Marvel has had some side effects from her prograf increase. Last time she increased, she was lethargic, but not as bad and there was nothing else paired with it. So we voiced our concerns to our NS medical team. We were instructed to take her prograf from the 3.0 mL to 2.0 mL until blood work could be done and we could see if her behavior improved.

We were sent in for labs the following morning.

Daddy doing some entertaining (aka: distrating from “being poked” for blood) by playing with the snapchat face thing.

She did great, again! Took some deep breaths, said her verse, and told the nurse to “lay the needle flat”. We’re not sure what Marvel really means by that, but everyone just says “ok” 🙂

The day after, we received a call saying her protein level was at 2.8 (normal is 3.0). They asked how she was doing… so far, the only change was she wasn’t as tired. The nurse told us doctor’s orders were to stay at the 2.0 mL for now, update them in a few days as to if she’s improving or not, and we’d go from there.

Marvel’s mood swings have become less crazy… she’s able to keep hold of things better… her lethargy is improving. So far, it’s good news. After the weekend I’ll call to update our NS team and see where she goes from there!

Journal #51 – Prograf Increased

July 16, 2016

Hello! I know I’m a tad late posting the latest update, but Marvel is doing great. Last time I journaled, I informed that we’d be taking Marvel back for labs. I didn’t post an update right away because we found out she had to increase her prograf dose and go back for more labs in 2-weeks. So here’s all that…

The day after the actual appointment, Daddy took Marvel back for labs first thing in the morning. He said she screamed and cried and it was horrible. Obviously she knows how to work her Daddy, because she doesn’t do that with me. What a girl! So labs were done, and I was called the next day with results. We had to increase her prograf medication by a half a milliliter. All this due to her growing body and having to keep up! So now she’s up to 3mL twice a day.

We were informed to take her back in two weeks for a follow-up lab. Me and her sister took her in, Daddy had to work. Talking to her in the past, asking when she’d like to be informed of doctor visits and labs, her request was no to be told until it was practically happening. Keeping to her wishes, I didn’t tell her until we were waiting our turn in the waiting room.

Tears formed in her eyes and questions were rolling out. I told her it’d be the same as last time. One stick for some blood and that’s it. Thankfully we didn’t have to wait long. And as soon as Marvel saw the nurse, she started telling her how to draw her blood. Haha… She’s funny! She wanted to sit in my lap, so she did. When she started to get too worked up, we went right to our strategy and she said her verse (Phil. 4:13). A few deeps breaths to calm her down and she said her verse again, and again. It was working perfectly. Then the nurse stuck her, Marvel let out a little “ouch!” and that was it. Marvel even watch her blood coming out into the vial. Usually she doesn’t have to have a bandaid or wrap, she doesn’t like them, but this time she had to have one. No biggie for my big girl!

We had done her second labs, and no call from the nurse or doctor. I let a few more days pass… No word. Usually that’s a good sign, but I had to call to make sure!

All clear! Marvel was up to the level she needed and doing great on her 3mL dose! Thank the Lord!

She had a check-up & labs in December… and in mid-September it’ll mark Marvel’s 2-year anniversary on prograf. And on the 23rd of this month… She’ll have been in remission for 5 months!

We are so proud of our girl… Our big girl! Who starts Kindergarten next month! She has overcome so much and continues to amaze us.

Thank you to everyone who continues to pray for our Marvel. Your prayers are being heard by God and appreciated by us. Thank you so much!

Journal #50 – Long Time, Let’s Catch-Up!

June 9, 2016

Hello strangers 😉 It’s time to catch-up on all good news about Marvel!… Since I’ve neglected to write any updates since February. And a reminder, she began, yet another, remission at the end of February and has since been doing great.

Of course, allergy season has brought on sniffles and coughs, which throws off her disorder just a bit. Her little body got back on track a short few days later.

That was the only hiccup. Thanks be to God!

And since my last update, Marvel has… continued loving Gymnastics, graduated Preschool, started summer Tee-ball, and lost her first tooth!

Back to the subject of today… Marvel had a Children’s Clinic check-up where everything went fine. I withheld telling her about the doctor visit until we were about ready to walk out the door. Don’t worry… I left plenty of time in there to talk to her and explain that it’d only be a simple check-up, no needles today.

The Children’s Clinic had one heck of a surprise in the waiting room… A DOG! Perfect! He knew tricks and let the girls pet him as much as they wanted. Such a great idea to get her mind off of any worries she had.

The visit went real smooth. Only bump is that we have to take her back. Since they scheduled our appointment in the afternoon, we have to drop by soon to get labs done. Labs have to be done where there’s no medication in her system. She’s not going to like that morning… I’m gonna hate it. My poor girl!

I’m sure I’ll be posting an update on labs when we get that done, within the next week. But until then, we’re very happy about Marvel staying in remission for almost four months now!

For a little special treatment, we let her pick where to eat… She could pick ANYWHERE! And there’s no yummier place than Freddy’s 😉 Complete with ice-cream sandwiches and messy faces!

Until next time, we leave you with Marvel’s verse…

I can do all things through Christ who strengthens me. – Phil. 4:13

PS: Marvel’s good news check-up came on a great day. Happy 32nd Anniversary to the two craziest, most loving, and strongest parents I was blessed to be given to. I love you Mom & Dad!

Journal #49 – Drop the Meds!

February 23, 2016

Today, Marvel took her last bit of prednisolone. Her steroid medication. YAY! Praise be to God!

Now it’s time to ‘drop the meds’!

BAM!

 

Tomorrow, we start the 2-year countdown. As long as she stays in remission for 2 years, and all her labs at that time check out, she will then begin to lower her prograf medication!

 

We cannot express how much your prayers mean to us, they’re being heard and God is healing. Please join us, and continue to pray that Marvel will stay on this path of remission and, soon enough, be able to stop all medications… God’s will be done with her timing and health.

Brenae’s verse… The one that helps her calm down in the hospitals and clinics… The one God gave to her years ago when He started to guide her down a character-building path… The one that summarizes our strong Marvel and all the wonders she holds…

I can do all things through Christ who strengthens me. – Philippians 4:13

Journal #48 – Almost to the Countdown!

February 9, 2016

On Thursday Marvel will lower steroid medication to 1mL. She’ll take that for 2 weeks, and then… DONE! No more prednisolone.

And the countdown begins.

In 2 weeks and 2 days, we start our 2-year-remission countdown. PRAYING Marvel will make it this try because once she’s been in remission for those 2 years, we can start weaning her off her prograf. Guessing that’ll be a long road as well.

Everything to do with NS is a really long process. We’re so thankful for good doctors, helpful medications, and most of all, our strong girl!

God has blessed us. Marvel’s NS has taught us that even struggles are a blessing. They teach us, remind us to turn to God for all matters. His will be done. To constantly seek His guidance in everything, big and small, good and bad. NS helps keep our whole family humble.

I ask you to continue to pray for her healing and guidance, and most importantly, God’s will. And we’re thankful for all the prayers.

Ah, yes… And she turned 5 years a few days ago – Frozen Fever Birthday!

Journal #47 – Just going along…

January 9, 2016

“Happy New Year” to everyone!
Our little family had a fun afternoon together out on the town. We hit up Fast Lanes for some games and carousel rides, and settled down for some amazing pizza.

But down to the last few hours, we rang in the new year at home, as usual. We’re big home-bodies anyway. Hubs didn’t make it to midnight, neither did Marvel. But I woke up Hubs in time for a midnight kiss. Tank, on the other hand, was on hyper overload. I don’t know why, but it lasted well after midnight. She was still awake when Daddy woke up for work (given he does have to get up for work early, like 2-4 am early)! So Tank got a kiss and Marvel got a kiss on the cheek. And we wouldn’t have our new year’s any other way. We had each other, at home, snuggled in blankets, and it was perfect!

Lots of things starting up this upcoming week for Marvel. She use to do preschool once a week, she’ll be starting twice a week and she’s oober excited… and gymnastics opens back up! And she’s got her birthday next month, the big 5! Plus both girls always love going to Sunday school.

Medical wise… Marvel is doing great. We’ve lowered her medicine all the way down to 4mL now, every other day. In about a week, we lower to 3mL… She lowers one mL every two weeks. So, praying she continues to stay in remission, she should be off her steroids in about 7 weeks.

She’ll continue taking her prograf at 2.5mL twice a day until she’s been in remission for at least 2 years, late October was when she started remission. Then after those 2 years, we take her in for labs to see if we can lower. I know it’s a long ways off, but it’s her goal and we look forward to her reaching that goal, no matter how long it takes! We know she’ll get there!

Thank you all for praying for Marvel. God hears all our prayers. His will be done, always.

I hope Marvel’s year is full of lowering medication, staying in remission, and not getting sick what-so-ever! She’s turning 5 soon, which means kindergarten is right around the corner, and we’ve been talking about signing her up for t-ball. She loves to be involved in sports and make new friends, staying in remission allows her to not miss out. Praying her year gives her as much normality as God sees fit!

May God bless you and your families for all the years to come!

Journal #46 – Increase in Prograf

December 15, 2015

Marvel had her check up at our Children’s clinic last week. We got a call from the hospital with her lab results, and we’ve had to increase her Prograf for the moment being.

The nurse who called from the hospital was quick to deliver the news and get off the phone, so I didn’t get all the information. Thankfully, an old high-school acquaintance, the same doctor friend who first diagnosed Marvel, answered my questions. So thankful for her!

Marvel’s prograf levels were low, she’d outgrown her dosage. She had been taking 2mL twice a day, and we’ve increased to 2.5mL. Going back to get more labs later this week to make sure her body is accepting the prograf the way it should be.

I hope you join us in praying her levels even out. She’s already been on prograf for over a year, she can’t start weaning until she’s been in remission for a couple years, and however hong it takes to wean all the way off from there.

We’ll be praying her body figures out all the medication and accepts it, her body evens out her kidney issues, and praying she doesn’t relapse again. Of course we’ll fight through everything she goes through, but we pray her road gets easier.

Thank you all!

We’ve been making crafts and putting up fun, homemade decorations. Me and Marvel hope you’re spending lots of quality family time together. Today, our little family made a gingerbread village!!!

… and just in case I don’t get back on before … Merry Christmas!

Journal #45 – Children’s Check-up!

December 10, 2015

Marvel had her check-up at our close by Children’s Clinic.

In the past, we’ve informed her of her appointment in advance. Tried informing her a few days before… She doesn’t stop talking about it and fretting the day. Tried informing her the night before… She doesn’t sleep good. Tried informing her the morning of and getting dressed… She cries and stresses the whole way there. So I didn’t say anything about it, at all. And we pulled into the parking lot. She questioned “we’re not going to the hospital?”…

“Nope. No hospital. Just a check-up.”

Then the tears and the wailing started. She stressed herself out so bad that she was shaking. Finally calmed her down, just in time for Daddy to get there. He snuggled while I filled out paper work. Thankfully we were called back quite quickly. Breezed through vitals. Onto our exam room. We didn’t wait long there either. Doctor came in, questions, exam… Everything is great. Marvel is doing wonderful.

And everyone got a kick out of Tank not having a care in the world and being goofy, while her poor sister was stressing out and clinging to Daddy for dear life!

Unfortunately, she had to gets labs done. That wasn’t fun either. She stressed out just sitting in the chair, on her Daddy’s lap, when the nurses weren’t even close to her. Calmed her down by having her repeat her verse, “I can do all things through Christ who strengthens me”. Once the nurses got close and started looking for a vein, we really had to work hard at keeping calm. Said her verse a few times, counted to 10, then to 20, talked about Ariel… Done!

A treat was much deserved after all that hard work… She chose mm’s, and Tank had to get the same. Chocolate makes everything better!

My Mom had a great idea to just ask Marvel about when she wants to know of her appointments. Marvel said she wants to know the day before we go… We’ll try that next time and see how she takes it. Hopefully much better than this last visit, this was her most trying clinic-visit yet!

Thanks to all who pray for my girl. We’re truly blessed to have so many prayers and so much support. Thank you from the bottom of my heart!