Day 3: “What’s going on here?!”

Howdy all!

This may be the first day we have an hour to catch our breath. It is a regular party in this room with all the visits from medical staff. The few precious quiet 30 minute breaks we get are spent checking in with all of you warriors, praying and (once) showering! Napping isn’t an option because hey- I’m a mom. The rule about putting your head down and kids immediately crying is still true here, except that a silent call button that brings staff running to my room is hidden in the pillow. I’m sure of it. Sadly, the disruptions are necessary and very well done.

We also met a speech therapist and occupational therapy team today. We had a blast, said “Bubbles!” for the first time and got to play outside of the crib.
We also took a fun ride around the “block” in one of the hall wagons.

Time for some Q & A:
1) What is happening today?
Today we began our first chemotherapy treatment. It is an IV bag that hangs and drips continuously for 96 hours, along with other fluids to flush his system and protect his kidneys. How long does it take?

He is also getting good nutrition boosters along with his usual baby foods. There are 5 different medicines that will go into him at various times, but we are starting slowly. One is a red fluid, and “the red devil” causes sensitivity to skin. It causes sensitivity to skin, so we are changing diapers and slathering on protective cream while wearing gloves as if he were a newborn. His levels are checked constantly and the nurses are giving him lots of extra attention.
2) What is the treatment schedule like?
For the next 96 hours chemotherapy will be dripped into his system. This kills off all the bad and yes, good stuff too. Then his system will stabilize and the white counts will slowly rise as the good stuff remains. This happens over about a 30 day cycle. The first week is the hardest on him. If he is feeling well and his levels are good, he may be able to come home for a week. It all depends on how strong his immune system is.

3) What is the “central line” and what does it do?
A central line is type of catheter that puts a tiny tube from a central vein between the heart and collar bone. It has a small white tube that comes directly out of his chest and connects to an IV attachment. This allows everything to go directly into the blood stream.
We’re a bit wired…

4) Can I donate bone marrow to help?

I LOVE the offers to help! You absolutely can donate blood and especially plasma, but it is best for it to go into central populations. PLEASE do that if you want to! It helps! Sadly, this is not a problem a bone marrow transplant can fix.
The “sick marrow” is being made– it is in his inmost being. What is bad and imperfect in him must be utterly destroyed and he must be infused with new blood and restoratives. Without the shedding and cleansing of his blood there can be no remission. Yes, I did just medically preach the gospel to you. Our sin and imperfection is in our inmost being and can only be healed with the perfect blood of Christ and continual cleansing that saves and sanctifies us. I tell you, Christ is in every step of this process.

5) Does The Conqueror understand that he is sick? Does he feel unwell?
Yes. Obviously, he can’t comprehend all the details of AML (sometimes I really can’t understand it all!) but as always, he understands more than we give him credit for. Now that he can hear and is speaking in small words, I realize he can interact and answer questions quickly. He never ceases to amaze me.
He is used to hospitals but he seems ready to leave; he has rarely stayed in this setting for so long. He is wanting to get out of the crib and to play. To put it plainly, he is in pain. The spinal tap and putting a tube through the chest hurts for a few days. We are managing his pain as best as possible with medication and extra hugs. He is acting a lot like a kid who is teething or has a fever– just lethargic and fussy. The next few days will be challenging for him physically but his spirit and spunk are at full level! I am so proud of my Conqueror. He is still dancing but his smile has faded a bit.

6) Are we sleeping?
Yes, like a mom of a newborn. When we get to sleep, we crash hard. There are a lot of interruptions and NO free time yet. It has been hard to connect with those outside the hospital but we are trying! We love you! We are comfortable in our surroundings although we should have a new room this month. We get 2-4 hours of sleep a night without interruption and another hour from 10:00-11:00.

What other questions do you have?


Day 2.5: We Like The Night Life

It’s 3:00am! I know a few of y’all are awake right now either because you live overseas or have babies in the house and some of you are insomniacs with a love/hate relationship with infomercials. It is strangely comforting to know we are keeping watch together.
Honestly, we are getting used to the sounds of beeping monitors and sleeping through the nurses’ checks. At the moment The Conqueror and I are in a sleepy stupor state.

Before really shaking off the sleep I was dreaming about a few of the instances that brought me here and realized the beauty of all that is happening. An untold amount of details were coordinated years ago that prepared us for this moment. The relative quiet of the night allows me to reflect and marvel.

My visit yesterday was from a friend from Fort Benning days, 4-5 years ago. The military moved her before the birth of Firstborn, but she drove back to surprise me for his baby shower.
baby shower amy
Picture it: Fort Benning in February. Amidst an estrogen ocean we unravel the saga of her drive and stay with another awesome friend to surprise me. I told her how strange it was because I had dreamed about her the night before! I dreamed we had were in some weird hospital situation and talking, although her daughter was about 5 years older.
She told me pregnancy brain was crazy, her daughter was still little and to have some dessert. She’s encouraging that way, and I collect friends that love dessert!
Yesterday she sat with me in a hospital while her lovely daughter, now 5 years older, told me about her fervent prayers for my baby. The images flooded back like deja vu. My friend absolutely remembered the dream and assured me sleep deprivation wasn’t hitting me yet.. It was an amazing moment.

When my Hero and I moved to North Carolina 3 years ago we really wondered why our orders switched to this location so quickly. We had no idea that we would soon expect a baby, let alone a child with extra special design. As various issues have presented themselves I realize that we are near places with excellent services, a thriving and loving church full of amazing support and we are within the 100 mile distance of child-centered care. It is no coincidence that at this time we are placed near two of the best hospitals in the nation which specialize in care for Down Syndrome and other challenges we are facing.

As I update Facebook I see dozens of friends from all over the world and really marvel at how God has moved our lives. My aunt and uncle live within an hour and visit UNC with regularity while a cousin is close by. A beloved bridesmaid from Texas has traveled worldwide in the past few years but somehow is living in Raleigh this year and has been at my side throughout the past two years. The house we rent is next door to a 30-year retired school teacher with special education experience and adores The Conqueror, requesting ‘dates’ often. Firstborn is in a school where he can thrive in my absence and is currently being cared for my remarkable women who amaze me with their selflessness as my son joins their family.

The list goes on and on. I am certain NO one would choose the circumstances I am in but I find there is no greater peace and energizing confidence builder than to know you are in the right place at the precise moment. It also reminds me I am NOT in control and this battle is not mine. If God is working out all these details, imagine the larger narrative he is crafting! I’m excited; y’all know I love a great story. I can’t wait to hear some of yours!
Mommy and William
Each of you is an important part of this journey. I can’t emphasize the importance of your prayers, encouragement and messages. It is life-giving to this sequestered extrovert! YOU are vital part of this process and I’m thankful you are here for us. We are here “for such a time as this”. The first chemotherapy infusion begins in two hours. Here is to a bit more rest until then!

WE LOVE YOU! (The Conqueror started clapping as I typed that.)

Day 2

Wow. I can’t believe it has only been 24 hours since the last post. Let’s start with a virtual group hug and collective deep breath.

The Conqueror started his IVs at midnight to help flush out his kidneys before surgery. The day started at 5:00am with a new IV bag and some platelets because his counts were too low today. By 10:00 he was hungry and a bit cranky but the nurses were giving him lots of love. I can’t express how amazingly wonderful the staff is at UNC. As many of you saw, we started off surgery prep with a dance party. A few surgeons and nurses joined in!

Surgery was quick; he had a spinal tap to see if leukemia cells were in the fluid (NOPE! HOORAY!) and to place a central line. What’s a central line? I’m glad you asked.

Rather than put in a new IV every time we need fluids, blood or infusions, the central line is a tube that is placed between the heart and collarbone. It goes directly to the bloodstream, so there are a LOT of measures to prevent infection. He is in pain and will be for a few days, although it is being managed well. Our afternoon didn’t have much eating or sleeping, so things got a bit messy.It was downright ugly for a while, but the prayers and extra pain medications worked!

IMG_2965 Another mom in the waiting room was juggling boys before surgery, so we talked about superheroes and Ninja Turtles (what else?) Soon I got my first “How are you so calm? You are so peaceful!” I should have practiced an answer but in my exhausted state I said, “Jesus!” I got an immediate high-five and a “Say that name again! I know that’s right!” Jesus supplies abundantly more than we could ask for.

However, I have southern friends who believe that throwing in a casserole sure doesn’t hurt. When a crisis comes, they don’t listen when you say, “I’m not sure I’m up to visitors.” No, they barge in with food, chocolate, hugs and encouragement. It turns out to be the best medicine for a tired momma.IMG_2969 A dear friend who is close by brought lunch and hugs, while another one dropped off a home-cooked dinner and some chocolate before new infusions. Shortly after she left we had some feeding tube problems that led to major messes. After TWO full bedding changes in an hour and a dressing change for the new equipment, we are finally resting.
Soon a hall-mate came knocking on the door with her 3 month old who will soon have surgery for a heart murmur. The cuteness of this child is overwhelming. This new buddy has had a very tough time and an interesting life story. Before long she was sobbing and I got to pray with her and encourage her. Apparently word is out that some Jesus-loving, God-glorifying people are on the hall. Praise the Lord! The new-found popularity cuts out time for sleep, but what a blessing to be right where God would have me to be!

Prayer requests:
Pray for the staff here and for the many weary parents and kiddos.
Pray for the pain levels and for our first treatment tomorrow to go smoothly.
Pray for solid, healing REST for our bodies!

PRAISES: OH, so many y’all but most of all THANK YOU to all the supportive warriors we have praying and providing so graciously. I am overwhelmed with gratitude. I love y’all “somethin’ fierce.”

Until tomorrow, we are more than conquerors through Christ!

Day 1

Today we officially start our fight against AML!
The day started bright and early when a certain three year old decided to decorate his white walls with red Sharpie at 4:00am. It added excitement to the day but we had a great goodbye. I am so thankful for those that will be standing in the gap for my Firstborn!

After early-voting and a frantic search for his blue glasses, we were on our way!
I really can’t adequately describe the peace and protection I felt during the two hour drive. It felt like going into battle well equipped and with thousands of elite, prepared soldiers at my side and surrounding us. I could almost physically feel the prayers going before us, and for that I thank you all.

We arrived at 10am and things never stopped moving! We met the amazing team of surgeons, doctors, nurses, etc. and everyone quickly fell in love with The Conqueror. This was increasingly impressive after his IVs and missing a nap.He was NOT excited about the IV that must stay until tomorrow, or the new arm band he needs to keep it still.

He’ll have an IV overnight to prepare for surgery tomorrow, when he gets a central line implanted between the heart and collarbone. His treatments and fluids will go through this tube. He’ll also have a spinal tap to see if any leukemia cells are in the fluid. The doctor has been doing these procedures since before I was born, so I’m confident. I’ve also found a few folks who had parents in the military. We even saw a “big kid” in a Superman outfit too! This is where all the superheroes hang out.

Even the cranky ones.
We had a few “Murphy’s Law” moments and some crankiness, but overall we are well and comfortable.
Today was more of a whirlwind than anything, but the blessings are abundant. For now I must grab a few hours of sleep before the IVs are changed and diapers are weighed. Conquering takes a lot of work, you know!

We love you all very, very much.

There’s Bad News and Good News…

Okay, first the 11th Commandment: THOU SHALL NOT FREAK OUT.

I have some major news to share. Here is the lay-out: 1. The news 2. The plan 3. What we REALLY need you NOT to do. 4. What you can do to help

By now you know The Conqueror has Trisomy 21, which is an extra copy of the 21st chromosome. That carries extra genetic material which alters how the body is formed and can contribute to issues like breathing (smaller passageways), heart problems, GI issues, etc. It can also cause malformations in the platelets and cells in the blood. Remember when our buddy became sick last year? As he recovered, we were referred for blood tests because his platelet count was low. This led to a bone biopsy, which showed that his bone marrow is “sick”.

The Conqueror has myelodysplastic syndrome, a form of pre-AML associated with Down Syndrome. This is pre-leukemia. MOST IMPORTANTLY, this is VERY TREATABLE and CURABLE. The success rates are in the 90%s.

I know this is major news, so let’s move right on ahead to what’s next.
einstein bomb

2. The Plan:
The Pediatric Oncology team has been AMAZINGLY impressive. The doctor practiced for 10 years at Texas Children’s Hospital, so my confidence is boosted already. (Whoop!)
The treatment is very successful because it is intense. He will receive 6 cycles of chemo-therapy that will last a month each. This will be done as in-patient care because the immune system will be very weak and there will be side effects. I will be going to UNC with The Conqueror next week to begin the first cycle. My amazing husband will be here with Firstborn in the meantime. We WILL be able to come home for the final week of the treatment cycles if his system is strong enough. In the meantime, I will be rooming with my little buddy and bringing some spunk to “Camp AML”. If all goes well, he will be in survivor/recovery and maintenance by summer and we will leave a trail of broken hearts behind us…

please dont freak out

we want you to pray for us and share requests, but we are keeping this information relatively contained. Please protect our information by not posting last names or details of our care anywhere on the internet. Feel free to direct people to message or e-mail me privately.
PLEASE don’t gossip about us. We want to balance between being a part of a larger family and maintaining privacy and protecting our team.

Try to keep the “I’m sorry”, “I don’t know how you do it” “God won’t give you more than you can handle”, etc. to a minimum if possible. The hardest part of telling people my baby would have Down Syndrome was the pity. It’s hard to charge ahead into a new battle when people feel sorry for you. Humor, encouragement and feeling ‘normal’ is much more helpful!

FIGHT WITH US! The best thing you can do is PRAY for us. Feel free to put us on prayer lists, maintaining privacy and protection as you do it.
You will be able to visit us at Raleigh and see us. While at here, we will need some help with the care of Firstborn after school. We will accept any and all help at this point, but we need a little time to organize. More details to follow.

Before you call or comment, please take a minute to pray and take a deep breath. We are VERY optimistic. Remember, the treatment and cure rate is 95%! We are very used to long separations and trials and we are rejoicing in the suffering. Jesus WILL be glorified in this! Although we never would have picked this journey for ourselves, we are thankful that we may be strengthened and will be able to testify to the goodness and faithfulness of our God all the more and to a new group of people.

We love y’all.

It’s a Bird! A Plane! No, It’s A Biopsy for Superman!

Tuesdays have been exciting for us around here. September 30 brought an ear tube procedure, the next Tuesday was a blood study at the UNC hospital and this Tuesday was a follow-up study and a biopsy. Whew, Boy!

When The Conqueror became very sick last year, his blood platelet count dropped. This happens for lots of reasons, such as illness, anemia, etc. The Duke Down Syndrome Clinic (from the Getting Your Dukes Up entry) recommended a blood draw and a low count led to a follow-up. Suddenly we have been whipped into AMAZINGLY thorough and considerate care for my little one. The biopsy is another minor procedure that takes about 15 minutes. The platelets may be produced but just ‘stuck’, which we can see in the marrow. This is a relatively easy appointment, but it required an early start time and some travel two hours north. This is when GOD showed up and orchestrated things. Get excited.

To arrive at 7:00am would require leaving at 5:00 am with a child that can’t be fed before the procedure. Eek. The traffic would be a problem too. Solution?
A wonderful friend I made years ago during days at Fort Benning moved to a different state and then moved again…to the half-way point between my house and the hospital.
She opened her house so that we could have a sleep-over and I could have an easier drive. We had an awesome time and got to laugh until our cheeks hurt.

The Conqueror and I left and arrived at the hospital before sunrise and the day’s torrential downpour. As we got ready, Superman was in great and somewhat sleepy spirits.
IMG_2771 As we had a blood draw and got ready, an AMAZING visitor showed up.

Now, I have an aunt and uncle that live about 45 minutes from Raleigh. They are there when I need them, although today I was find to fly solo. “BUT GOD”.
My aunt called to tell me that she was driving a family member to UNC for a chemo therapy treatment that very morning at that very SAME TIME. LET THAT SINK IN.

After all our military moves and all the timing variables, a loved aunt was going to be in the very same place at the same time. She took an elevator one level down and spent time playing with my son and laughing with me. Christ ALWAYS provides what we need and abundantly more.

My Superman-Conqueror’s blood platelet count rose by 20 in a week. The biopsy went beautifully and he was cared for so well that he didn’t even cry coming out of anesthesia. We were on the way home before noon and didn’t have a problem driving home despite rain and ‘exciting drivers’.

God is so good to us. Our daily grind is full of Christ and miracles. That is how we are made into more than conquerors and mere men become Supermen.

The Conqueror in the Cancer Center

“How are you?”
The answers we give to this question reveal a lot. Of course, some answers are flippant and simply mean the words used. “I’m okay fine” can mean “fine”…if a man says it. (NOT if a woman says it.)

Some of my favorite responses are “Living the dream”, “Fighting the good fight” and “Surviving”. I’m thinking of those responses today as I sit and feel completely full and empty simultaneously. We spent the morning with people who were fighting the good fight…to survive and heal. We spent the day in the UNC hematology/oncology department.

Have you ever revisited a place from the past and felt a bit haunted? I haven’t set foot at UNC since The Conqueror was three weeks old. It was the day before Thanksgiving and the appointment was by far the worst we’ve ever experienced. Nearly two years later, I didn’t want to return. It felt eerily familiar to push the stroller along the tunnel and feel the breeze of the opening doors. I was thankful to be in a different department.

As I entered the hospital our first stop was…well, the restroom. It was a 1.5 hour drive! I pushed the stroller past a dozen adults. One had a notebook full of charts with a pink ribbon on the front. The next woman wore a scarf over her bare head. A few elderly men looked exhausted in their chairs. The faces of those truly enduring looked at me, a few smiling at my little one. New life brings hope. We all need more hope.

I finally spotted the Women’s Restroom sign under a much larger one that read “Cancer Center”. After a diaper change I started to push the stroller out of the door, which is always an awkward process. It caused me to pause long enough to hear something; a woman in a distant stall was quietly sobbing. You hear crying with your ears but you hear despair and suffering with your heart. It’s a sound you only recognize once you’ve heard it well from your own chest and through your trembling lips.

I paused for a moment wanting to reach out, but knowing better. We rolled on. It was a relief to get to the children’s wing. The bright colors, toys, refreshments and smiling faces brought out the smiles in us. The Conqueror quickly made friends.The waiting area’s toy room was full of fun kids, to include a 3 year old who also had Down Syndrome. Today was his final treatment for leukemia before the maintenance stage. I immediately clapped and celebrated; the boys both joined in. Fighting the good fight is a team effort. Celebrating should be too.

I’m pleased to report that our new doctor was fantastic. He was friendly, attentive, thorough and clearly adored my son. For the past year his blood platelet count has been low which is a concern.
Individuals with Down Syndrome often have an increased risk of Leukemia. Although The Conqueror does not show other symptoms of Leukemia or other potential illnesses, I’ve learned to be diligent and thorough.

The waiting room was full of smiles, toys, a few hairless heads and some tired parents. A refreshment area had treats and fountain drinks. I’m always floored by the amazing service at specialty hospitals. The dolls on display were not for playing house; they demonstrated ports and IV pieces. A little girl played with a puzzle while a blood transfusion slowly dripped into her arm’s IV. Her mother stood over her as mothers do, playing while standing guard. We smiled and gave each other knowing nods. College students in the UNC program came in to play with the kids. The CPALS laughed and spread joy all over the kids. The Conqueror was doted upon by a sweet blonde who will start nursing school next semester. The place had an upbeat and hopeful feeling which is truly remarkable.

As we moved onto our blood draws I considered these families surrounding me. I no longer feel pity or grief; I hated being the recipient of that when my baby was hooked up to IVs and monitors. No, spending a day with the kids, families and staff all fighting cancers feels much like spending a day with a large group of soldiers. There is a silence that screams what words can’t express. The experiences can’t be adequately described but you know when a battle buddy is in your ranks. T
Until you’ve fought the fight you can’t fully appreciate the sweetness of the victory. If there is anything I’ve learned from fighting alongside my Conqueror it is the power of faith and hope. By the time we reached home we were both exhausted but speech, dinner and a nighttime routine awaited. It was a typical day…the ordinary and extraordinary often arrive together. Now that jammies are on, teeth are brushed and the dishes are done I wonder if today’s exhaustion indicates surviving, fighting or living the dream. You know, I think the answer is all three. Fighting the good fight is living the dream.