The gift.

Our days are full and yet very simple. Watts and I are buddies and hang out all day, every day. We play and read and drive Piper to preschool and paint and play playdough and coerce bites of food. We play outside and run errands and do chores around the house.

These are simple days and the greatest of days, if I slow my heart down to rest and truly see them for their beauty.

Watts has a head full of hair now, his cheeks are chubby, and his eyes sparkle most days without a hint of medication dullness. His labs have shown no sign of relapse.

He's come a long way. We've come a long way.

Watts, one year ago.

[It is with some degree of hesitancy that I write the next few paragraphs because I am so fully aware that my life is a cake-walk compared to some... And yet, I will write, cautiously, because it is where I am today.]

I have to fight each day to stay in today. Fear is at my heels at any given moment, if I am being honest, and it is a struggle to stay fully present and joy-filled in the day that is before me. But fight I will. Each day, each moment sits on my lap like a well-wrapped gift and I can choose how I am going to unwrap and engage with it. I know now, of course (and my grey hairs can attest), that the present may or may not be what I want and it may bring pain, but it is still mine to unwrap and choose how I will engage it. Will I move into the moment with honestly and open-hands, or will I enter it with a numbed heart and clinched fists? It makes all the difference, really.

It is my story, both pain-filled and beautiful.

This cancer journey has taught me many, many things, and one of the things that it has taught me is how little I really know about anything. I use to want to figure it all out, to know what's up ahead, to know that if we fight/love/work hard enough, then the labor will result in fruit. None of that is true, of course. Hard work pays off sometimes, and sometimes it doesn't. Chemo treatment works sometimes, and sometimes it doesn't. Prayers are answered the way we hope for, and sometimes they aren't.

Life is mysterious and pain-filled and God works in ways that I cannot even begin to understand. All of this world is broken. He promises to make all things new but we only see glimmers of it now...and daily we live in the tension of knowing His promises and yet having to wait for their fulfillment. We often find ourselves busy and striving for an ever-elusive happiness when, in reality, most days we feel as if we are just scraping by with bleeding hearts and broken dreams. Our work feels futile more often than we want to admit, violence and war fill the headlines, and our babies get cancer. We feel we have to fight for hope, fight for peace, and fight for our very lives at times.

And yet, sometimes it is in the darkest of seasons, that we have the eyes to look and to see the brightest of stars. Sometimes it is in the pitch-black of night that we can start to see God for who He is, apart from the blessings and happiness that we want to get from Him.

Sometimes it is when things are upside-down that our blinders are stripped away and we can see the deep beauty in this world, despite the brokenness. 

Sometimes it is in the most broken of days that we finally learn to stop striving to make life work, and we start resting in the moment that it is right before us, the gift that is on our lap.

Sometimes it is in the deepest darkest moments of our lives that we can see God and see His deep and ever-present and far-reaching goodness...regardless of the circumstances.

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The thought of losing my boy takes my breath away. It catches me at funny moments during the day and all of a sudden I find that its hard to swallow for the rock-size lump in my throat and I can't seem to get my lungs full of enough air. But my son is alive. And perhaps if he wasn't, I wouldn't write of the darkness bringing clarity or the goodness of the Lord even in the midst of pain...

But as I watch others who are walking down roads filled with grief and pain that only my worst nightmares hold, I see their faith and hear their words of His goodness and it shakes me to my core.  

In their faith, once again I see and believe, He is good.

Half birthday, little rascal, and update.

Yesterday was Watts' half birthday and we celebrated with sweet treats (which our noodle boy didn't eat a bite of) and a park trip on what seemed like the most gorgeous day of the year to date. We celebrate half birthdays... just as we try to celebrate every little thing these days.

Other birthday celebrations:

6 months old, pre-diagnosis and before we started celebrated half birthdays.

Watts' first birthday. He was so very sick this day.

Watts' 1 1/2 birthday. 

Watts' 2nd birthday (and Piper's 4th).

What a gift to celebrate our little warrior boy! A little bit about him: He loves all things trucks, cars, and planes. He loves scary things, loud things, and gross things. He loves to dance, sing, and play the guitar and piano. He likes to dress like Papa (Michael) and "Taco" (his uncle, Charlie). He is talking up a storm and we love to hear his little brain thinking about about things.

He is also a little rascal these days. His goal, on most days is to terrorize Piper. He can do this a number of different ways but one of his main tactics is the age-old favorite of mimicking. Or maybe it's arguing? I'm not really sure. Piper will say that her favorite characters on Paw Patrol are Everest and Sky to which Watts will respond, "My favorites are Everest and Sky!" And then Piper falls apart. The thing is that they are not Watts' favorites...he really is only saying it to annoy Piper. So, basically, it has begun. The whole younger-sibling-terrorizing-the-older-sibling thing. I did it to my older brother so I am now paying for it with my offspring... that's how it works, right? He also bit Piper till he drew blood yesterday. Just like I use to do.

Thankfully, Piper is forgiving and Watts can be a good playmate, so there are many beautiful moments of playing and affection between the two. Piper is always asking him for hugs and snuggles and he is sometimes obliging. We are so thankful for this little rascal and these normal, simple sibling interactions. Although sometimes they drive us crazy, we find ourselves humble with gratitude at the end of each day.

Watts continues to do well in treatment. We are in the middle of a couple of weeks of Mercaptopurine (6mp) and will go back to Brenner on the 26th for a lumbar puncture (chemo in his spinal fluid), Vincristine (through his port), labs and a doctor's appt, and possibly a transfusion of IVIG. If I did my calculations correctly, this will be his second to last lumbar puncture. Lord willing.

Watts' appetite continues to be hit-or-miss, but, as one of his doctors said last week, "It is what it is right now." Watts is getting sufficient enough calories in him to not need intervention and this will hopefully change once he is off treatment. His periods of nausea and loss of appetite tend to be around steroid weeks and for 24-48 hrs after his weekly PO Methotrexate that he gets every Monday.
In addition to nausea, Watts tends to get drowsy on the 6mp and will sleep for 4+ hours if I let him. I don't, most days, because this inevitably backfires the next morning.

His labs have all been right where our team wants them, there have been no signs of relapse, and he hasn't needed any transfusions except for almost monthly IVIG transfusions to help boost his compromised immune system. We are thankful, and nervous, and thankful.

Thank you for the continued prayers and support of our boy. We are grateful and do not take it for granted.

A rainy day.

[I (Hannah) wrote this a couple weeks and forgot to post it.]

The rain came down heavy this morning as I drove the familiar drive to Winston. Rainy drives on Hwy 40 always remind me of the very first drive, the one in the ambulance with me in the front seat and Watts in the back, being worked on by the paramedics. They would murmur words I couldn't hear to each other but would periodically quip to me that he was doing "just great". I didn't believe them. It was some of the hardest and longest minutes of my life when I couldn't see my son and I was alone in silence. And I didn't know that the worse was yet to come. I didn't know that he would begin to swell and that he would struggle for breath in the blur of the Brenner ICU, that his little 10 month old body would begin to go into septic shock and that I would have to fight to keep a hold of his hand because there would be so many doctors and nurses in the room. I didn't know all that then, or I might have broken in two.

It was actually sunny and beautiful that May day but I cried so hard that I keep remembering it as a dark and stormy day. Just like today.

Watts sang in the backseat as we drove to his appointment this morning. He bobbed his curly head of new hair to the music and pointed out trucks that we passed on the road. A heavy fog covered the downtown buildings of Winston and the rain pounded our windshield. And then, just as the tears started to come in my own eyes as my mind lingered on old memories, a small bird, perhaps a sparrow, broke through the clouds and swooped across my view. His eye is on the sparrow, I remembered, and I know He watches me. And I was reminded again in that moment of how He loves me and my little boy. Every step of this cancer journey I've known this truth with every fiber of my being.

We've come so far and yet we have so far to go. We are so happy with where Watts is and how is doing. He is developing right on track and has remained mostly healthy and out of the hospital since starting maintenance. But every day we watch him. Every day we think of cancer, we treat for cancer, we talk of cancer. We look for bruises, for lethargic behavior, for fevers... We hold our breath for labs and count down the days till treatment ends. And not in excitement but with dread. We hate the toxic chemo but also never want it to end. 

Oh Lord, this cancer journey reminds me of our earthly journey. Our time here on earth is strewed with brokenness and pain with glimmers of Your beauty and restoration in between; little glimpses of the sparrow breaking through the rain clouds. We ache for Your return, for You to make things ultimately and permanently new, and until then, we wait with baited breath. We wait in brokenness and in pain at times. We hope, O Lord, in things unseen. We rest in Your love demonstrated by the cross. We rest, O Lord, help us rest.

"We strain to hear..."

"Happy New Year from the Van Patters. We are thankful for so many things as the year 2014 comes to a close and 2015 begins, not the least of which is that Watts' labs continue to remain cancer-free.
Thank you for your continued prayers and love for our boy (and us)!"

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Just as I was set to post the picture of my cute kids and cheery words yesterday morning, I received a devastating text from Mandy, a dear friend and mother that I met through an Infant ALL support group. Mandy has meant the world to me over the last year and a half. Our boys were diagnosed a month apart and, although she and her family live in Charlotte, we have journeyed through treatment together and have sent each other thousands of texts and have even been able to get together a few times.

She has been my lifeline and the kick-in-the-pants I've needed at times when I've lost myself in cancer woes and anxiety. Her love for Jesus, her optimistic outlook on life, and her encouragement through the ups and downs has been priceless and a sweet gift from the Lord.


 Watts (on left) and Drew (on right) over the summer. 

Yesterday morning I received a text from my dear friend that her sweet boy, Drew, had gone to be Jesus unexpectedly during the night. He had not relapsed but was sick with what they had been thinking was a virus that his immunocompromised body was having some trouble fighting off.

Please pray for Mandy and Wes as they grieve the loss of their son. There are just no words that seem adequate to say but I'll (again) quote Wolterstorff's Lament for a Son:

“How is faith to endure, O God, when you allow all this scraping and tearing on us?
 You have allowed rivers of blood to flow, mountains of suffering to pile up,
sobs to become humanity's song--all without lifting a finger that we could see.
You have allowed bonds of love beyond number to be painfully snapped.
 If you have not abandoned us, explain yourself.

We strain to hear.
But instead of hearing an answer we catch sight of God himself scraped and torn.
 Through our tears we see the tears of God.”

Ashes and Hope

I had the privilege of leading the folks of Hope Chapel in an Ash Wednesday worship service tonight. I wanted to share my opening/welcome words in hopes that you'd be encouraged at this beginning of lent.

Ash Wednesday is about death.

For some, death isn't something we like to think about. It's dark, depressing-- a thought to be avoided. For you, Ash Wednesday can be a beautifully sobor dose of perspective. There is some urgency to God'scall on your life to love him with your whole heart, soul, and mind, and to love your neighbor.

For others, death may seem all to near. Just six hours ago, Hannah and I slid into a pew in a chapel in Winston Salem for the funeral of a 23 month-old toddler named King*, who died of leukemia on Friday. We wept and mourned the inexplicable loss with the people there. This should not be so. Many of you here have had difficult months and years and you feel the reality of death. For you, Ash Wednesday can be a beautifully hopeful reminder that there is MORE. Lent begins with Ashes but ends with Resurrection. Hope prevails. Death has lost its sting.

So wherever you are tonight, welcome. 

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*Hannah also wrote up some thoughts about today....

Today was Baby King's funeral. To say that his funeral was beautiful and honoring would be an understatement. The room was filled with his family, friends, and beloved nurses, and I sat and wept and ached for heaven.

Michael sang the song, Psalm 126, during the service:

Our mouths they were filled, filled with laughter

Our tongues they were loosed, loosed with joy

Restore us, O Lordea

Restore us, O Lord

Although we are weeping

Lord, help us keep sowing

The seeds of Your Kingdom

For the day You will reap them

Your sheaves we will carry

Lord, please do not tarry

All those who sow weeping

Will go out with songs of joy

The nations will say, “He has done great things!”

The nations will sing songs of joy

Restore us, O Lord

Restore us, O Lord

Good numbers (and pictures)

Watts' numbers look good today so we should be discharged in a few hours! Here are some photos from our 9 day stay...

 

 

Play time.

Watts is a wild man, super happy and very active...and his ANC reflected that today! It jumped from 0 to 168 so we might be going home late tomorrow if his numbers continue to look good. So very thankful.

Until then, I'm going to keep watching Shark Week every spare moment that I get (until I get home to no cable).I am mildly obsessed and regretfully stayed up till 11pm watching it. Not smart when every machine decides to malfunction during the night. Ha!

Another Brenner day and rambled thoughts.

Watts is sleeping off a traumatic morning of changing out his NG tube and I'm taking some much needed deep breaths too. Holding my son down as he screams out in fear and pain is very disturbing...even though I remind myself that it is necessary and for his own good and oh! so minor in light of everything else going on in his body. But add on top of that a slow-moving xray technician, having to re-tape the darn thing 5 times, and knowing that there is mucositis in his throat, I am probably going to have some PTSD issues from all of this. Watts, thankfully, will wake up from his nap and hopefully won't remember anything. [NG tube had to be changed because, after a week of super gluing and duck taping it, the leaks could no longer be stopped.]

He's sleeping heavy on my chest now, his breathing deep and raspy as the mucositis continues to heal. I'm listening to the whirling sound of the feeding pump, pumping milk into my boy, accompanying the sporadic ticking of the IV machine. Always tick, tick, ticking. Old episodes of Shark Week are on in the background and the nurses are in and out, starting more antibiotics, administering medications, and waiting on us hand and foot. In the "quiet" moments, I find myself processing, thinking, and trying to recover emotionally.

Watts' blood counts are even lower today (ANC is now at 0...down from 75 yesterday). Which means, more waiting. No known discharge day. More delays to chemo.

We should be on vacation this week. It would have been our first real vacation in a few years and Michael was going to take two full weeks off. I was dying to go to the beach and we would have been there over the 8th, which is my 30th birthday.

Instead we are here. 

There are moments that I feel so overwhelmed... with sadness, with loss, and an indescribable feeling that I am missing out on life. That my little family is in a stagnate place somehow as the rest of the world whizzes by. People travel, go to parties, vacation, sleep in the same bed as their spouse and under the same roof as their babies, and we are here in this tiny room day after day after day.

It isn't true, I know. This life that we are living is not stagnate, but the most intense kind of living, full of pain and questions and completely out of our control. It is a fight of life and death. A battle in a sense that we are waging against the enemy of leukemia. But some of the days are really hard. . . and some of the hours are really long.

Right now I am going to snuggle my boy, watch some more Shark Week re-runs, and pray for a deep abiding peace in the midst of the storm. And contentment in the hardest times. And joy, sweet joy in the moments that are truly beautiful.

PS. I did have a lovely lunch dropped off for me by Debra Morrison. Thank you! Not eating hospital food was a treat!

Perks to being more inpatient than outpatient (in the last two months)

-You don't have to buy diapers.

-You have a constant supply of fresh linens.

-You have a night team constantly checking on your boy so your role switches to shooing them away (instead of worrying about him yourself).

-Daily mopping.

-Music therapy and Art therapy!

-Having a team of doctors and nurses a button-push away.

-The suspense of waiting for the daily ANC blood count is better than any of the latest thrillers.

-Living for days (and weeks) in a hospital room makes your small house seem huge.

-Your tolerance for chaos grows on a daily basis.

-You realize that you aren't missing anything by not having cable at home...except for Food Network and HGTV. I mean, what in the world is Honey Boo Boo?? But I might die if you take away Chopped or Renovation Raiders.

-You start longing for normalcy...even daily chores and cooking seem so, so appealing. Not ironing, though. Never ironing.

More of the same...

Blood counts are the same today (ANC is 48) so we are doing more isolated hanging out and waiting. He slept well last night and seems to be feeling good today. I'm going to talk to the doctor about trying to get him off tube feeds but I'm thinking it might take some time...even though his mouth looks so much better, he's still holding his mouth in weird positions and seems sensitive. We are stir-crazy but are just so thankful for a happy boy!

More details...

I have two hands again (Watts is napping in his crib!) so I thought I’d write a bit more. I’ve found that writing is therapeutic for me, a way to document this journey as well as semi-process some of this chaos.

On Sunday, Watts began bleeding out of his mouth. He had bled before from his mucositis but this blood was significantly more and did not seem to stop. After a call to the heme/onc. doctor on call, we headed to Brenner Emergency Room. We hoped that he would get platelets and they would send us home in time for Piper’s birthday the next day.

Instead, once we got there, they picked up a slight fever (100.1) so they decided to start antibiotics. He also needed platelets so they admitted us. ANC was around 600, I think. Watts was acting no worse than normal so I was hopeful we’d still get to leave the next morning.

After hours downstairs, they moved us upstairs and Watts and I settled in for a long night. Monday morning we found out that they wanted us to stay another night so that they could monitor his “fever”. I was frustrated because 100.1 is not considered a fever BUT because E.R. started antibiotics we had to wait to see what the temperature was going to do on its on.

Long story short, they were right. His fever started climbing, his ANC plummeted, and his blood cultures came back with growth in them.  He has some sort of blood infection going on and we won't know what it is till the cultures grow some more. In the mean time, he is on two antibiotics and a heap of pain medications for the horrendous mucositis that has now swept all the way down his GI tract to his poor diaper area.

So here I am, camped out again at Brenner, but unfortunately with Watts not doing chemo, but fighting another infection. This is very much par for the course, I’ve been told, but it still triggers some awful memories of the first blood infection that was at the beginning of all of this.

This practice of thankfulness is challenging but a sweet reminder of the good that still surrounds us… 

Today I am thankful for:

 

My husband, who is a rock star.  

The sweetest “birthday party” in the hospital room last night.

My resilient, hilarious, precious 3 year old.

Presents for Piper from the nurses and the RMH staff.

Watts’ strength.

My mom-in-law who dropped everything to come help.

My sister who hung out yesterday, wiped up vomit, and brought me Thai. 

Gas cards from sweet friends and family..

The cool walk this morning with Piper from the RM House.

His mercies are new every morning, great is His faithfulness. Once again, He sustains us.

Unexpected hospital stay

Watts has been hospitalized for a blood stream infection. We are not sure yet where it came from but could be related to his horrible mouth sores. He seems to be responding to antibiotics so we're hopeful that they caught it early. We'll be here for a week probably getting this treated. Chemo is also on hold. Pray for relief from pain...he is still very miserable from mucositis.

Mouth sores and anxiety

I can feel the anxiety rising up in my throat, a warm flood of panic that wants to consume me. The day starts seeming impossible, the clouds seem to loom, and I can see no good, no blessings or gifts around me.

I've come to learn during this leukemia marathon that there are two times that I tend to always struggle with fear and anxiety: when I don't get sleep and when Watts is in pain. There are other times too, of course, but those are historically the worst for me. Once again that rings true...

Watts is having a hard time. The mucositis is throughout his mouth and, most likely, all the way down his GI tract. He is drooling out blood (because he can't swallow) and his breath reeks of rotting flesh. We are still home but monitoring him closely and will be readmitted if his pain worsens. I hate, hate, hate this. Throughout this whole process I've been trying to be fully-present and trying to find the beauty in it all, but this? This I would like to fast-forward. It is no, no good.

 I cried over Watts this morning as I was trying to get him down for a nap and I found myself directing my tears and anger towards the Lord. Why? Is it not enough that he has leukemia? Why does he have to feel like this? Are you even watching this? Do you not see this baby? I wept. And in the quiet of that moment, in the honesty of my rage, it struck me---He is weeping too. Both now for the boy that I love and in the past, for his own beaten, tortured son.

He knows the cry of my heart.

A very humble thank you.

This isn't recent, but I love this old picture from June.

 We have been blessed. From the beginning of all of this madness, we have been surrounded and cared for by so, so many. I don't even know how to begin to thank the many, many people who have blessed us in the last two months. Sometimes when I'm rocking Watts to sleep, my mind will wander and begin to think all of the crowds of people who have prayed and worried and wept for our son. And us. We have been sustained by those prayers, those words of encouragement, those cards, emails, and those special friends who sent texts at the same time every night during our 38 days in the hospital. Thank you.

For the gifts and meals and puzzles and crayons (and on and on and on), thank you. Each one, in some small way, eases things a little. A gas card to help with another car trip to Brenner, a restaurant gift card to fuel our weary bodies, money to put towards some of our medical bills, coffee money, etc. Thank you. As a frugal family, your generosity has allowed us to breathe a little during a financially stressful time. We are so grateful.

For those that have mowed our lawn, watered our plants, cleaned our house for our open house and showings, fixed our lawn mower, and who knows what else, thank you.

To the family who have wept and worried with your grandson and nephew, holding vigil out in the lobby during the terrifying early days, thank you. Particularly to the grandmothers who have spent days and weeks caring for Piper during our long stay at Brenner, thank you. 

We are very blessed and very, very grateful. 

Home again!

Watts didn't clear the methotrexate last night (was only .02 off!) but did this morning. Watts and I left Brenner within minutes of getting the results and are now home and resting. It is so, so sweet to come home.

Watts' mouth sores seem to be getting worse but his rash and mucositis seem to have plateaued. His nauseau also seems to be getting better.

Thankful today for...

My crazy hilarious almost 3-year old.

A new chemo bag.

A resilient boy. 

A hot shower in my own home.

The comfort of a favorite meal.

Mid-morning coffee.

Family and friends who drop everything to come help when needed.

Understanding remission

Remission is a confusing word with leukemia because it doesn't actually mean what it sounds like... Remission after induction treatment does not mean cured. I think that my previous post about Watts being in remission was a little confusing for people so I wanted to clarify some things.

With leukemia, remission after the first phase of treatment means that chemotherapy has reduced the number of detectable leukemia cells (I read somewhere that it brings the numbers from the billions down to the millions) and has returned blood counts to normal. It is the goal of the first round of chemotherapy---I think I remember the doctors saying that somewhere around 90% of leukemia patients achieve remission of the first phase of chemotherapy. Remission is the expectation of treatment, it seems, rather than the exception. It is a good, good thing, but remission does not mean that treatment has changed in any way, that Watts is cured, that all leukemia cells are gone, or that Watts won't relapse.

It is a something to celebrate while keeping it all in perspective... once again, this is a long road.
I'm so sorry if I was confusing about this before.

Round 2, day 3

We are hanging in here at Brenner. Poor Watts has had a rough time handling the second round of HD Methotrexate. His mouth sores have spread, his rash on his chest is inflamed (again), and the mucositis seems to be getting worse by the day. His side effects are suppose to peak a week after the first dose, so that means that all of this could keep getting worse till Tuesday. Sigh. It is pretty awful to watch as he chokes and gags on all the mucus in his throat. He has stopped all eating/nursing by mouth and, as of last night, starting nightly continuous feeds through the ng tube. As a die-hard breast feeder, I have agonized over this decision but know that it is best. Dr Russell explained that kids/babies with great nutrition tend to respond best to chemotherapy, so I am on board. I'll keep pumping, use the milk that I have, and supplement as needed.

We may go home super late tonight, just like last week, if his levels show that he has cleared enough of the methotrexate. We'll go home loaded up with pain meds, feeding pump, and a very weary little guy. If not tonight, then they'll keep checking through the weekend and we'll leave as soon as he clears.

We'll have a couple days at home then are scheduled to re-admit for a five day stay on Tuesday. After that, we'll have a four day stay then some days (weeks? I can't remember...) of outpatient treatment. After that, we'll do the whole nasty Methotrexate regimen over again (4 days here, 3 days home, 4 days here, 3 days home, then a 5 day stay that isn't MTX) followed by a 21 day stay for treatment. After that, the hospital stays should decrease.

It is a long, hard road.  

Second round, day 1

We are back at brenner, readmitted on schedule to start round 2 of the awful HD Methotrexate. Watts already had his Lumbar Puncture and is currently napping while the IV pumps him full of fluid. He is going to get blood in a bit and then will start chemo around 4:30pm. Please pray that the side effects are minimal. He has already experienced mouth sores, mucusitis, and rash and now, just as they are starting to heal up, he is going to be hit again with more of the awful stuff.

I just keep trying to picture this chemo drug waging war on the millions of lurking leukemia cells...it has already wiped out billions (enough to put him in remission), now it needs to finish off the remainder. Please, Lord!

Day 4, Birthday eve

I'm waiting on labs to come back to know if we can go home tonight...it's currently 10:15pm, but I don't care. If he has cleared the methotrexate, we are breaking out of here. Today has been rough. Rough physically on Watts with nausea, rashes, mucousitis, and general irritability, and rough on me emotionally. Well, maybe physical for me too since I'm running on 3 hours of sleep.

On the eve of Watts' birthday, I long for things to be different. I want to be home finishing up his birthday cake, wrapping up presents, and putting streamers down the hall. But that is not to be. I'm curled up next to Watts in a hospital bed, smelling the stench of chemo on my sweet boy's skin, and shushing him as he cries out in discomfort in his sleep.

My cry/prayer tonight...

Rock of Ages, when the day seems long
From this labor and this heartache, I have come
The skies will wear out, but you remain the same
Rock of Ages, I praise your name

Rock of Ages, you have brought me near
You have poured out your life-blood, your love, your tears 

To make this stone heart come alive again
Rock of Ages, forgive my sin.

Tuesday morning

 

Watts' has had a cranky 18 hours or so. Because his numbers have also dropped some, they are giving him a blood transfusion today. This isn't surprising or even disappointing since we've been told to expect them periodically. We are hoping that he perks back up afterwards and is back to playing and laughing at us.

Here's a short description of why he needs blood transfusions:

Blood transfusion using cells donated by healthy volunteers can help replace red cells, platelets and other blood components. Some people with leukemia, lymphoma, myeloma and other blood diseases or disorders such as hereditary anemias and aplastic anemia need periodic blood transfusions for several reasons:

• The disease process itself can sometimes interfere with the normal production of red cells, white cells and platelets in the bone marrow. For example, almost all patients with leukemia (which primarily affects the marrow and blood) require some transfusions during their care.
• Many drugs used for chemotherapy can temporarily impair blood cell production in the marrow and depress immune system functions.
• Stem cell transplantation patients receive high doses of chemotherapy, which depletes stores of normal blood cells. 
• *Info from the Leukemia & Lymphoma Society website 

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He did get to work with the OT on the floor this morning. It was his first time really getting to try and crawl and pull up on things outside of his crib. He was weak (and irritable) but also very determined to crawl and grab the toys that the OT would set just out of reach. Way to go, Watts!

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A moment in time:  I'm sipping on coffee that was just delivered to us (THANK YOU!), Michael is in the crib with Watts, Piper is on a play date with Gramma, and Watts is napping while receiving a blood transfusion. Crazy how life changes... and now this is our new norm!

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And I'll end with this picture... of our hilarious, resilient, precious first born.