I wish I was the kind of girl who would jump in and happily hand wash a dish when it was huge and wouldn’t fit in with the dishwasher load, but I’m just not.
Nope. Not about that life.
Should be. But. Just. Can’t.
So, since most everything goes in the dishwasher, I let this be one of the last switches I’ve made for our family, and now that I see how easy it is and how terrible the “good” options are that I bought, I’m (per usual) annoyed at my learn-the-hard-way lifestyle.
The snow day Monday, Steve stayed home from work and couldn’t play with the kids at all or come near me because he was feeling so bad. This was a bummer, but boy oh boy did we have quite a week in store for us. This was truly the calm before the storm.
Tuesday was another snow day, and I did have such a great morning with Cohen, but then it was off to the hospital with Hudson for an I.V. and an injection.
This radioactive substance attached to the Neuroblastoma in his body and let us know, head-to-toe, where everything was for sure.
We finally made it home and Steve was feeling sick still. He went on a run to get some medicine, but never made it there because there was a pipe burst in our rental property.
A pipe burst near the water heater causing it to dump its entire contents and everything it was trying to refill onto the ceiling causing it to cave in.
All flooring on the first floor, the entire ceiling on the first floor, counters and cabinets in the kitchen must be replaced.
While I was on the phone with the insurance, I had Hudson screaming wanting to nurse, Cohen grabbing my hand to play, and Hattie dropping a ball on my lap to throw. All in all quite a stressful evening, I must say.
Oh yes, and earlier that day I realized Hudson is losing his hair.
Chemo will do that, and we totally expected it. So, I took some pictures before it started falling out to celebrate and remember the hair he was born with.
We also did a little at-home hair cut the day I found the first of it in his bed and some that came out in my hands.
After crying for quite a while, I called my sister, who had these simple yet all too true words of wisdom, “He may be losing his hair, but if you didn’t have this treatment you’d lose Hudson.”
Talk about perspective.
So, I gathered myself up after mourning the beautiful hair I was so (foolishly) proud of and decided to celebrate it instead.
Though I feel good about everything, I will admit I even shed tears writing this and looking at the pictures, still. I don’t know why this one little thing is so hard for me.
Most babies don’t have this much hair anyway, and it will grow back, but for some reason it strikes such a spot in my heart and makes me ache every time I think about it or more hair is left behind on his sheets, carseat, or my shirt.
That was the hair he came into this world with. It was such a wonderful day, and his hair was quite the topic of conversation as I was delivering him. I just remember how beautiful my baby was upon entering this world almost four short months ago, and I guess I’m selfishly not quite ready to give that up. Stupid, I know, but it’s the (ugly) truth.
Hudson came out of the scan and nursed like a champ. That night at home, however he was not able to get milk from me.
This was so upsetting. My mom went to make a bottle of my frozen milk for him, and I had to leave the room because he will refuse a bottle if he can see, hear, or smell me at all.
I went into my room, laid on my bed, and sobbed. I was just so drained emotionally from the day, from what was to come Thursday with chemo, and I just fell down on the bed and let it all out.
I think I needed to. Doing all of this by myself at the hospital, I have to hold everything together, and I’m glad in a way that I finally had something that made me release those emotions.
Then, I got to thinking about what I had eaten that day with all the stress and being at the hospital had brought. About 500 calories.For the entire day.
I wiped my tears away, ran downstairs and started grabbing the best foods I could to replenish my supply. I pumped that night around 10 so my body knew I still needed to produce milk, and by morning we were back in business.
Thank goodness this happened with my second baby, so I knew how to process what was happening, and I didn’t think I was just drying up! Thank you, Lord!
Thursday morning we were back in the clinic for a full day of chemotherapy. This was Hudson’s second round, and this day made everything else we had been through (and would go through in the next couple days) totally worth it.
Dr. Dole told us the following news: Hudson’s tumor has gotten considerably smaller, his genetic testing all came back favorable and low-risk, and Hudson will have a normal life expectancy! Tears of joy! Thank you, thank you thank you, LORD!!!
Such a beautiful Thursday, but we would quickly realize, tough times were not quite finished in the Marshall house.
Friday, Steve took both he and Cohen to the doctor. The night before, while in the middle of hourly diaper changes, Steve told me he was just so cold. His temperature read 101.7. I grabbed Tylenol and a half hour later it read 103!
Got the Motrin, but fifteen minutes later it read 105.1! I was so scared. He was shaking and shaking, Hudson needed me, and Cohen was coughing so hard in the next room, I just knew he had something, too.
With help from a sweet friend, who is a nurse, we chugged some Rehydrate and brought his temperature down to where he could finally sleep. The doctor says it’s an infection possibly sinus or bronchitis.
Our babysitter has a sinus infection, and Cohen tested positive for the flu after waking with his own 102 temperature.
Hudson and I took to the nursery with the air purifier and camped out in there for a few days. The hardest part is seeing Cohen (with a mask on and changing my shirt every time I come in contact with him, which isn’t that often) and not being able to help my baby at all.
And all of it…no matter how stressful, how tough, how emotional; all of it I’d do all over again for moments like this.
Thank you, Lord that we will raise these brothers together as it should be. We praise You for this beautiful gift!!
-Wonderful genetic testing!!!
-Loss of more nodules!!
-Growing and gaining weight!
-Family and friends who leave food on our doorstep and in our infusion room, call with concern, text with love, and rejoice along with us!
-Wonderful jobs for Steve and myself that are so good helping us still through this
-Amazing doctors who go above and beyond. Dr. Kim Kohsla and Dr. Dole are a Godsend.
-Sweet Anna, who we prayed for last week, is home safe and recovering…thank you, LORD!!
-Chemo. last Thursday will knock the tumor down even more!
-Wonderful bloodwork this Thursday
-Steve, Cohen, and Ruthanne (our babysitter) get healthy enough to be around Hudson by the doctor’s Wednesday estimate
-Me going back to work (still nervous a little!) Tuesday
-Hudson and I do NOT catch any of this sickness!
I write to you today almost nine years exactly from the day I decided to live for the Lord, and there are some things you should know.
1.) Reading scripture is essential.
All Scripture is breathed out by God and profitable for teaching, for reproof, for correction, and for training in righteousness, that the man of God may be competent, equipped for every good work.
2 Timothy 3:16-17
This is something I didn’t really understand until I began Bible study. To read, study, dig deep into what the Lord has left for us to live our life by is huge.
Every day, in big and small ways, we need Scripture.
One way to do this is to have a go-to every day. This is an app I have on my phone that serves me well.
It’s easy to personalize with different devotions, and I can even link up with friends who have the app.
2.) Community is Biblical.
And let us consider how to stir up one another to love and good works, not neglecting to meet together, as is the habit of some, but encouraging one another, and all the more as you see the Day drawing near.
Being a homebody who can sit and read for hours without socially interacting with anyone, I fought this one hard.
It wasn’t until I was urged by a friend and by Scripture that I began really being active in a community of Christians.
It’s been unbelievably special.
Our Bible study meets Wednesday nights, and we have something called House Church every other Sunday evening. It is basically a family study where the kids learn a lesson and play while the adults discuss a study or the sermon after we’ve had dinner together.
It’s a lot of Jesus in our life.
It was a big change, but it was so very worth it. If you’re unsure of where to start, your church elders can lead you into a community of believers.
3.) His mercies are new every morning.
As a new Christian, it can be overwhelming how great our God is. How He loves. How He lives.
This verse can help us:
The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness.
Each day I need His mercies. I have to pray,”Lord help me be better than I was yesterday.”
This hope is what keeps me going. That we don’t have to live in fear of never measuring up to Jesus.
Jesus died on the cross so we can have a new start. Be forgiven. Washed as white as snow.
Live there. Keep taking in that while we will not ever be as perfect as Christ, we can be forgiven, dust ourselves off, and try even harder the next day.
4.) This is the path less traveled.
This will not be easy. In fact, it is written
If you belonged to the world, it would love you as its own. As it is, you do not belong to the world, but I have chosen you out of the world. That is why the world hates you.
They hate me? Because I am a follower of Christ?
For lots of reasons I both do and don’t understand.
Either way, like Peter writes about living in exile, it’s just the way it is.
It’s hard because for the most part, we like being liked. So when someone hates us, makes fun of us, casts us aside because we live in a way they don’t understand, it will be hard, new Christian.
Put on the suit of armor. It is a battle, but take heart. It’s the only one really worth fighting.
5.) This is a relationship.
Jesus longs for you. To be with you. To talk with you. To listen to you.
Just like any other relationship, in order for it to work, we have to show up. Every single day.
Behold, I stand at the door and knock. If anyone hears my voice and opens the door, I will come in to him and eat with him, and he with me.
With a childlike excitement He hopes I follow through with my promise to pray, study, and come to His feet each day.
I don’t want to let Him down.
He died for me! No one else in this world loves me like that.
What is the only way I can reciprocate that love?
By loving Him back. Showing up. Playing an active role in my relationship with Him.
Instead of feeling guilt when I sleep longer than my alarm or when I go a couple of months without starting my day in the Word, I pray, “Lord, help me put You first.”
I can do nothing without Him. I can do everything with Him.
New Christian, this is a journey. But this walk you will take is full of more rewards than you can even fathom right now.
Take this scripture and envision yourself each day as you are tempted to live your life outside of the Lord.
Arm yourself, sisters and brothers.
Stand therefore, having fastened on the belt of truth, and having put on the breastplate of righteousness, and, as shoes for your feet, having put on the readiness given by the gospel of peace. In all circumstances take up the shield of faith, with which you can extinguish all the flaming darts of the evil one; and take the helmet of salvation, and the sword of the Spirit, which is the word of God, praying at all times in the Spirit, with all prayer and supplication. To that end keep alert with all perseverance, making supplication for all the saints, …
I think what I’m most surprised about is how normal our life is right now.
Other than Hudson sleeping more than usual, we are just the same as we were before December 10.
It’s not like our life has come crashing down on us. It’s not even like I think about it all the time. It’s just a part of our new lifestyle.
We check his Broviac when we change his diaper to make sure the dressing is still properly attached. I flush his Broviac once a day with Heparin, and I wipe him down with Chlorhexidine before putting him into his jammies each night.
This may seem like it’s not normal at all, but after just two short weeks, it’s just our new normal. No biggie.
We still play, laugh, talk with friends, watch movies, celebrate little things here and there that the boys do each day, and go to work. We still do everything we used to, it’s just got a few more steps to it than normal.
Hudson is so happy, and is getting close to rolling over back to belly. He loves looking at his big brother and staring at the fireplace. He loves when we talk to him, and especially when we read to him. He’s loving being a thumb sucker, and I secretly love it, too.
When I look at the big picture, we’re going to be okay, and we are okay.
We have to keep positive to make life fun and healthy and loving for our boys. If anything, we’re growing closer as a family each time something new comes up with Hudson. Best of all, we are growing in our faith in the LORD though our walk with Him has taken this unexpected turn.
~Hudson has lost many of his nodules, but he still has four major ones that are yet to go away.
~That Hudson and Cohen will do just fine when I go back to work on the 6th.
~That a little girl named Anna, whose momma has posted about her heart surgery coming up on Friday will be laid on the hearts of everyone reading this blog, too. Lord, please heal her sweet little heart!
~That the body scan will show Hudson’s tumor has shrunk considerably.
~Good chemo session on the 9th
~That my students aren’t affected by my need to leave and be with Hudson when I need to be with him. That they will still learn a lot from me and take important lessons with them that will help them in high school and beyond. That I can be a good teacher for them even though my heart and mind are here with my boys.
~Friendships that the Lord has given us. I cannot believe how many people are so compelled to pray for Hudson and our family, write us sweet messages, and just stick by us through the tough and celebrate the good with us. What a blessing every single day!
~Another nodule that was on the back of Hudson’s head, and a source of constant concern is GONE…GONE GONE GONE!
~That I found a homemade recipe for wipes that I love and will feel so much more comfortable combating “chemo rash” with after our next treatment on the 9th.
~That Mommy and Daddy shared our 10th Happy New Years smooch on the couch after both nearly falling asleep before midnight.
Songs. Books. Tummy Time. Comb-overs.
All in a day’s work.
Then you will call upon me and come and pray to me, and I will hear you. You will seek me and find me, when you seek me with all your heart.
I do hate it. I do wish it wasn’t sucking up the first six months of Hudson’s life and pulling our family apart during what should be a bonding time with our new baby. I do wish, more than anything, that I didn’t have to see my baby hurt or watch people put drugs into him time and time again, but this is no tragedy.
Nope. Not even close.
Tragedy was hearing a heartbeat and then three weeks later seeing blood.
Tragedy is never getting to hear the precious heartbeats of two other babies we will never hold on this earth.
This family knows tragedy, and this simply isn’t it.
This…this is a pause. A murky spot in a family’s life. Because Hudson will survive this. The Marshalls will survive this.
When people wonder how I stay so positive or how I’m so strong, I think of two things.
First, I am positive because, really, what’s the alternative? I get all “Why us?” and then what? What do my boys get from that? What does this family get from that?
Instead, we cry our eyes out when we have to, pull ourselves up once we’re done, and we push forward because it lets us live. It lets us laugh (especially Hudson, who has developed the most adorable belly laugh), it lets us chase each other around the house, snuggle with hot cocoa and watch Christmas movies, and then it lets us laugh some more.
Let me make this perfectly clear: this is not my strength. I am held up solely by our Savior.
All the glory goes to Him.
Every time I (the girl who passed out when they drew blood for pregnancy) watch a needle go into my baby without even getting the slightest bit queasy, or loving on him to help him through pain, when I would normally be sitting with my head down trying not to fall over, that’s all Him.
I pray for strength every time.
I ask and I receive.
That doesn’t mean it isn’t hard or isn’t troubling; it just means He helps me make it through.
It’s crazy. Every time I have to flush a Broviac (port) line, scared to death I’m going to mess up, or stay with him through a procedure where I see way more than I wanted to, I make it all the way to the end.
To the part where he is resting and happy again, and then I fall apart. Not a moment before.
Yes, part of that is me fighting for him, but I cannot take the credit. It would be a lie.
With that strength and positivity, we faced Hudson’s first chemo treatment and second admission into the hospital head on.
This stay was especially tough on Cohen because he didn’t see me at all for three days, and he has been having a hard time trusting that I’m not going to leave for a few days again. This morning, he said, “Mommy, you don’t want to take care of me.”
This broke my heart- I mean really broke it in two-but I have to keep focus on the big picture.
Focus on the one thing I know is certain: when Cohen has his little brother to grow up with, this will all be worth it.
I know that he doesn’t understand it now, but that’s what parents do. We do the tough things that help our kids in the long run. We hurt for them, and we shoulder the responsibility because that’s what we do. It’s our God-given privilege to do so.
Doing the tough stuff for our kids definitely hit home at our stay at the hospital, which was much more eventful than I had planned. I expected Thursday to be his first day of chemo. The end. However, true to hospital fashion, it was not that simple.
First, we weren’t sure if his Broviac was working properly because I had a hard time flushing one of the lumens the night before. On top of that, we had to go down to X-Ray to make sure it was placed correctly because the model they used on him made the nurses wonder, so we went down there first.
X-Ray is relatively quick, so we got an EKG and an Echocardiogram, too as a baseline for what his heart looks and sounds like now because one of the drugs can harm his heart. Then, we did a hearing test because another drug can harm his hearing, and we needed a baseline for that as well.
They tested his urine (cotton balls in the diaper…genius), flushed his Broviac (which nurse Jenna did with ease, thank goodness!), and then we did chemo.
Thank goodness for my momma who rushed over from work so Steve could spend an hour and a half of Hudson’s first treatment with him.
It would last 6 hours total once he got two hours of fluids to make sure he was hydrated.
Friday was big for Steve. He went back to work and we had our babysitter, Ruthanne stay with Cohen for the full day.
For Hudson and Mommy, Friday was more of what they did Thursday with the addition of an anti-nausea drug he got all three days, chlorhexidine wipes for his arms, back, and legs to help prevent blood infection, and the newest addition to our life, changing diapers every hour with gloves to help as much as we can with the rash that comes from the chemo.
It’s awful. Thank goodness for prescription zinc oxide.
Chemo day two went well, but that night was rough because that was the night the rash appeared and he screamed every time the nurses changed him.
He had to have a blood transfusion first, and handled his final day of round one well, but we were told he would need to either stay the night again or come in the next day at 2 p.m. for a drug called Neupogen.
He would have to receive his first dose in the hospital for observation then given by me through his Broviac for the next 7-10 days. This will help his bone marrow regenerate.
Crazy how quickly one can go from being the momma that is freaking out about putting saline into her baby’s nose to suck out snot to being the momma who administers drugs through a tube in a hole in her infant’s chest.
Thank goodness for our wonderful home care nurses who will be here to teach me how to do this properly. I’m nervous about this because it took 20 minutes to give Neupogen to him today, but I know this will just become one more part of our new normal, and we’ll be just fine.
I do keep the big picture in mind, and it helps for sure, but the Devil is trying his hardest to creep into my positivity, tear down my hope and faith that the Lord is healing my baby.
I have to fight it every day.
Those thoughts pop into my head as sudden fears and worries when I know better than to worry. I am so thankful for my friend, Danielle who told me that when we don’t know what to pray that just saying, “God, help!” can be enough. That He knows how to help us best and pull us through.
I cannot count how many times I have prayed, “God, help!” this week.
So thankful that every time I do, I can tell the Devil to get out of my head.
That I believe wholeheartedly that the Lord has His hand on my baby boy.
I know this with all of my heart, but that doesn’t mean that this faith of mine is not tested time and time again every single day.
But Momma, like Hudson Xavier, is a fighter.
God, I know You know my heart.
I know You are holding our family together.
I know You have the power to heal our baby so we can live this beautiful life You have given us together.
All the glory to You, forever and ever.
*Good genetic test results
*Strengthen our ties to each other (Steve and me) as this takes a toll on any marriage. We have been though a couple of heartbreaking things together that is helping us handle this, but that doesn’t mean we don’t need prayer.
*For Cohen to somehow understand that Mommy has to care for Hudson at times, but that doesn’t mean I don’t want to care for him. That he will find peace with what we have to do to help his sick baby brother and know that I love him more than he can ever possibly comprehend.
*First round of chemo done and no sickness!
*A baby who sleeps through the night!
*The every hour changes is done!
*Such a fun time together now that we’re home playing as a family.
*Finding out that I have five weeks of FMLA left so I can keep my job and insurance!
*Finding that insurance is going to cover Hudson’s treatments.
*All the prayer across the globe for our baby boy
*Wonderful friends new and old who are helping in so many ways (babysitting, messages, texts, surprises on our front door, meal train, funny videos with the belief that laughter is the best medicine, and just loving on us when we need it most).
*People who are coming to the Lord in prayer who aren’t usually speaking with Him
*HUDSON IS HERE AND IN OUR ARMS!!!
“In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one.”
“He replied, ‘If you have faith as small as a mustard seed, you can say to this mulberry tree, ‘Be uprooted and planted in the sea,’ and it will obey you.'”
Thank you for joining us on this journey. Your prayers are so appreciated!
December 16, 2013
Saturday, December 7, Hudson woke from his nap, and it was time for a diaper change. When he stretched out with his balled-up fists reaching for the sky, I went in for our routine tickles and raspberry belly laughs.