Tuesday, July 30, 2013

Infection update

We found out that Watts has coagulase negative staph...which is a good staph to have, if you have to have a staph infection. The doctor seemed encouraged.

Watts has also seemed to turn a corner and seems much more like himself. It'll still be a few days before we'll go home, but we are thankful for good news and thankful to see Watts feeling better.

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.

Sunday, July 28, 2013

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.

Saturday, July 27, 2013

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.

Friday, July 26, 2013

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.  

Thursday, July 25, 2013

Tuesday, July 23, 2013

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!

Saturday, July 20, 2013

Some words for Watts on his first birthday

With Piper we started the tradition of writing letters to our kids on their birthdays. Here is Watts' one year old letter from his papa.


Newborn Watty
We headed home last night at 11:15pm after Watts' labs came back with good levels (showing he has cleared enough HD Methotrexate out of his system).  Today we celebrate our one year old at home! Please pray that Watts starts feeling better soon, though. The side effects of the powerful chemo drug are amping up and making him very, very miserable.

Friday, July 19, 2013

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.

Thursday, July 18, 2013

Day 3

Watts is feeling pretty puny. He's sleeping restlessly and not wanting to eat. I'm concerned about him possibly developing some mouth sores but haven't spotted any yet. We just started the rescue drug and have drawn labs to check his levels. Hoping they are good so that we can go home tomorrow night in time for Watts' birthday on Saturday!

Piper came and spent the morning with me (and Watts). It was so sweet to have more time with her because I miss my girl so much when I'm here. Now she is napping at home while Michael works.

We are in the throes of trying to figure out this whole back-and-forth hospital thing; trying to figure out how to pack, how to coordinate care for Piper, how to eat while we're here, how to park, etc. It was simpler when we were at the Ronald McDonald House full-time because so many things were taken care of for us (parking, meals, housing). During the short stays, though, we feel like its important for Piper to be based out of Greensboro as well as for Michael with work. I'm sure we'll get really good at it eventually, but right now it is just confusing. Currently, I've been here full-time and Michael and Piper have been coming out to visit in the evenings for dinner. Michael and I plan to have a pow-wow once I'm home to talk through what worked and what didn't work during this stay.
 Also, I really would like to have visitors, which would make my days way less long, but I need to figure out how to do that with Watts' erratic schedule. Confusing stuff!

Prayers for great levels and no mouth sores would be appreciated! And wisdom for us parents as we navigate through all of this.

PS. A giant monarch butterfly just shocked me by flying up and landing on the window sill of our 9th floor window. It hung out for a few moments and then flew off. Took my breath away.

Wednesday, July 17, 2013

Induction Intensification, Day 2

Watts is sleeping to the sound of 'ocean waves' and I'm watching the mello yello color chemo drip drip dripping into his little body. HD Methotrexate, crazy powerful and disgusting stuff. Hopefully it's hunting down those lingering leukemia cells and annihilating them. Some babies have strong reactions to the high dose of this drug (horrible rashes, mucousitis, etc.) so we are hoping and praying for none of those happen. The doctors say the side effects should peak in 7-10 days.

Here's the low-down on what is happening chemo-wise, written by a super helpful friend (and another Infant ALL mom): "After his LP [lumbar puncture], he will get 6 hrs of just fluid. Then they start the mtx, one runs for 20 mins, then the next will be in 3 bags about 8 hrs each. The clock starts with the 20 min dose. 24 hrs after after it starts they will draw blood to check the mtx level. Then they will check again at the 42 hr mark as well as start Leucovorin (rescue) drug at that time. Then they will check the mtx level again at 48 hrs. If the 42 hr level is less than 1 and the 48 hour level is less than .40 you can plan to likely go home at 72 hrs. If that is not the case, then they will check again at 72 hrs, then it goes to every 12 hrs until it is less than .10."

We should be here for three days, then home for a four day break, back for three days (doing same chemo regimen), then home for four days. All of that can vary depending on how quickly the methotrexate clears his system. After that we'll have a five day stay and he'll be getting etoposide, mesna, and cyclophosphamide. That will be the end of Induction Intensification and then he will move on to Re-Induction.

So we will finish up with chemo at about 8:30pm and then hope for good levels so we can shoot to  go home on Friday night. Sweet boy is ready to go, I think. He has been out-of-sorts and feeling crummy.  Hoping for a good night sleep tonight for him (and me!).

Admitted and good news!

The last 24 hours have been a blur but the long and short of it is, we are here, admitted in Brenner (with an ANC over 1000!), and Watts is currently snacking on early morning crackers with a side of chemo (HD Methotrexate). After a cranky day yesterday, I am hoping for a happier little guy today.

After getting his labs back yesterday morning, they sent him down to the sedation suite for his lumbar puncture and bone marrow procedures. While under, they gave him some chemo drugs and got the samples needed to test for remission. Watts and I moved up to Rm 912 and a couple hours later got the news: Dr Buckley's professional opinion is that Watts is in remission! The results have to be confirmed by the pathologist, but Dr Buckley seemed very happy and confidant. We are thrilled to say the least. This doesn't change anything for his course of treatment or even mean that he won't relapse down the road, but it does mean that his body is responding to the chemo and that it has wiped out all visible leukemia cells. The next two years will be spent killing off any lurking leukemia cells, because left alone, they can multiply rapidly. At least, that is my understanding of it. [Other leukemia mamas, am I understanding/explaining this correctly??]

So we are back. It is so different admitting this time round...Watts is happy, looks healthy, and I have all my bags packed and organized, complete with room air freshener and finger nail polish remover. Last time we came here in an ambulance and I was in a frantic here-take-my-boy-and-help-him state. Watts was so, so sick. We know now that he had a staphylococcus aureus bloodstream infection which, in healthy people is very, very serious. In people with compromised immune systems like Watts', it is even more so. Yesterday I asked Dr Buckley more details about the early days of Watts' infection and he said that, if left untreated, it was probably a matter of hours before the infection would have killed him. Not days, but hours. This news, while sobering, also makes me feel like celebrating too. As the doctor said, 'Watts has come a long way,' so, in my mind, an ANC of 1000 is amazing (given where he started from) and remission is something to get up and dance about!

So, we are rejoicing over the news while still gearing up for the marathon that is Infant ALL chemotherapy...

Off to drink some more coffee and gaze at my now-sleeping warrior boy.

Sunday, July 14, 2013

Sunday sale

Today we came to a verbal agreement with some buyers for our house and are now in the process of completing paperwork! We are very, very thankful. This afternoon we checked out some open houses in the neighborhood but still plan to move forward with the other Walker house. We will probably put in an offer in the next 24 hours. Side note: I definitely do not recommend selling and buying a house while dealing with your child's cancer at the same time. It is worth it, in our opinion, because we desperately need more space, otherwise we would never have been doing this right now.

Watts is doing well. Sleep is erratic (he skipped naps yesterday and then got up at 4am this morning) but he has great energy and seems happy and healthy. I would love to see him eat more (we have regressed to him almost exclusively nursing), but the doctors do not seem worried because his weight is fine. In other ways he seems to be trying to catch up developmentally: he pats us on the back when we pat him, he says "mama", he makes the craziest faces to get laughs out of us, he waves, and seems to be understanding a lot more of what I say to him. Although he is having to relearn a lot of things that he already knew before this all started and is having to play catch-up, he is a trooper and we are so proud of him.

Heading to bed now to try and catch up on much needed sleep. Yes, it is 8:20pm.

Saturday, July 13, 2013

Saturday morning

The kids and I just took a rainy day walk after a big breakfast of pancakes and sausage with Papa before he heading off to a elder/staff retreat. Watts is taking his morning nap and Piper is watching a show because I deemed it an appropriate rainy morning activity. My heart feels full to the brim.

Watts' appointment went well yesterday. His counts are up a little bit (to 330) which isn't anywhere close to where they need to be to readmit, but still shows that they are going in the right direction. We'll go back Tuesday and check them again. The doctors are thinking that he'll be ready to admit at that point. We aren't worried at this point and are grateful for another weekend at home; Watts seems to be thriving here, crawling and "talking," and playing more every day. It is delightful to watch!

We are currently in negotiations with some buyers interested in our house! We are so hoping that we can make it work it with them. It is all a balance of figuring out how much we can go down in our asking price while still having money to put down on a down-payment on a new house. We are not going to be making a profit, but our new house payments will (hopefully) be about the same as our current payments. We are cautiously excited!

Thursday, July 11, 2013

Thankful (1000 gifts)

For a rainy summer. Makes being stuck in the home so "cozy" (as Piper would say).

For an offer coming in tomorrow on our house!

For the house we love (that's one block away) coming BACK on the market.

For a jolly happy baby boy. I could just eat him up I love him so (as Piper would say, quoting Max).

For the luxury of having a king-size bed.

For the gift of having both babies with me all day long. So blessed.

For the unexpected gift of extra days at home (though I'd LOVE to see high #s tomorrow).

For care packages dropped off on our porch. It thrills Piper and me every time.

For a newly fixed oven and an incredibly handy husband.

For dinner brought by a precious friend... and a double BOB stroller! 
Good grief, I am officially spoiled. 

Chocolate chip cookies and Homeland Creamery ice cream.

Theology of Suffering

I've thought a lot over the past couple of months about what it means to have a theology that can bear up under the weight of significant hardship. For a while now, I think I've had a hidden fear that if things got bad, my doubter-heart would buckle and I would either shake the fist at God, or be crushed by the pain. There have been many days of lament and so many tired times since everything started with Watts. More than the last 5 years combined, I'd imagine. We have felt ragged and threadbare, trying to keep our eyes up to see the 3 feet in front of us (most of the time, that's what we can manage). I think my fears of personal collapse would have come true if there wasn't space for hardship in our view of God. In all of that struggle, I have been more grateful than ever for a theology that not only bears the weight of trouble, but sees suffering as an expected and central part of it.

What if we believed this cancer was the result of some wrong decision we'd made? Or due to a lack of faith?

What if we thought God was apathetic and just watching the suffering of us and so many we've met?

These views just wouldn't hold up for me. Instead, I see a truer theology in words like these:

in the Abbey of Gethsemani
There's a statue of Jesus on a monastery knoll
In the hills of Kentucky, all quiet and cold.
He's kneeling in the garden, silent as a stone,
All his friends are sleeping, he's weeping all alone.
And the Man of all Sorrows never forgot
What sorrow is carried by the hearts that he bought...

(Andrew Peterson, The Silence of God)

It's the Suffering Savior of Isaiah 53, the Empathetic God of Hebrews 4. In this season with new depths of trial, I'm drawn to this compassionate God, and to his promise not that he will spare us from hardship, or even explain it all, but that he will not leave us alone in it. A promise to be spared trouble would not be believable, and to be alone in it would be hopeless. But thank God for a Gospel that says, expect that trouble will come and that I know the pain you feel and will be with you in it.

Wednesday, July 10, 2013


 I wrote this a couple days ago but forgot to post it.

Home. Home has been beautiful, and really hard. I knew that it was coming even before I left the hospital, this mishmash of emotions, this deep, deep happiness juxtaposed with the grief, this joy over being home curtailed by the stress over going back, there's a lot going on in this heart of mine. But that is nothing new, if you know me at all.

Every minute is full here. There are no quiet moments to stare at the clouds and ponder life, there are babies screaming and never sleeping (so it seems) and dishes to wash and stories to tell and snuggles that need to be given. And its so good and so hard because life looks like moving and never sitting down and trying to learn to trust when your heart feels weak and trying to not miss today because I'm worrying about tomorrow.

This morning I felt so weighty, so burdened with questions about the unknowns. It is a crazy thing to try and "plan" when there is nothing set in stone. The tears spill on laundry and the fears and sadness comes in waves. This is just so hard, this scary nomadic living, and I long for it to not be so and I feel my heart gripped by the what-ifs.

Dan Allender writes powerful words about fear:

To allow God to transform our fearfulness, we must first acknowledge our fears. This means resisting the impulse to act as if they weren't there, deadening our strong feelings through busyness in distracting activities... Second, we must struggle with our worry. This is in contrast to the philosophy that advocates, "simply trust Jesus and your worries will disappear." Once you acknowledge your fears, you're in for a real battle. It's only after struggle that you will experience lasting peace (see Psalm 131). Third, through Scripture and prayer, remember God's power and His marvelous acts of past help. Begin with Scripture, where we confront the astonishing nature of God. Time and again the Bible records God's works in history to save His people from incredible dangers. You might also remember testimonies that you have heard from friends or family. But most important, remember how God has worked over the years in your own life. He did it in the past; He can do it in the present. Then, finally, with the confidence that you have gained, move out into the world. At first, the process may be slow and painful. You may feel great pressure to retreat to a safe place where there is no hurt. But keep in mind that the safe places, those with no hurt, are also the places with no joy. The fear of the Lord overwhelms the fear of the world.
(The Cry of the Soul, pg 104).

I long for joy so I'm choosing to walk into the hurt too. And of this I know to be true, He has been faithful to me.

After my "heavy" morning, the kids and I ventured out (with antibacterial wipes, mask, and ergo) and walked to the corner coffee shop, spent $7 on fancy coffee drinks and smoothies (Who am I? My old thrifty-coupon-clipping self was dying inside), and had a precious time playing games and talking. The clouds seem to always lift.

Tuesday, July 9, 2013

ANC update

Watts' ANC was 180 this morning, up from last Friday (104), but nowhere close to being the 750 needed to re-admit and start the next round of chemo. Dr Buckley said that he's not worried at this point and that it isn't unusual for counts to take a while to recover, especially because of how compromised Watts' were at the beginning of all this.

So, Watts and I will go back Friday morning and do this all again. If the counts are the same, they'll do the bone marrow biopsy to find out why. If they are high enough, they'll do the bone marrow biopsy to check for remission and then re-admit to start chemo. If the ANC has only increased a little bit, I think that they'll send us home to wait some more.

Patience is a virtue and one I've always struggled with... It sure feels like I'm in some kind of crazy crash-course-boot-camp in learning how to wait!

Monday, July 8, 2013

Thoughts on being home...

Nothing is sweeter than being surrounded by my little family.

It feels like I've returned to the days of having newborn... 
very little sleep and very little time without a baby in my arms.

Computer time, shower time, and reading time, is way harder with two kids around.

Sleep-deprivation causes frequent trips to the store because even with a list, 
I will wander up and down the aisles in a fog and forget half of my needed items.

King-size beds are awesome. As are gifted linens. Thank you!

It takes about a week to unpack from a month away. Just in time to re-pack.

Seeing old friends and worshiping at Hope Chapel is food for the soul.

*Tomorrow morning Watts and I will be going to Brenner for a lab check, possible bone marrow biopsy, and possible re-admission (if counts are high enough to start next chemo phase). 
Pray for an increased ANC!

Friday, July 5, 2013

(Really) Quick update

We are home, mostly unpacked, and loving it. It feels surreal, really. I've found myself walking around, amazed to have my family all around me and to be in our own home.
Watts has come alive since being home! He was having difficulty in the hospital crawling, pulling up, and putting any weight on his legs. His PT and OT could barely get him to stretch out to pop bubbles. Yesterday, Watts crawled several feet across the room and has been back to smacking Piper when she takes his toys. He is noticeably happy to be home.
Watts and I went back to Brenner to have labs drawn this morning and his ANC is 114, a normal count would be in the thousands. We were hoping that it would have been higher, but Dr Russell didn't seem concerned because Watts' other numbers were still good (platelets, hemoglobin, etc.). We will go back on Tuesday to check counts again. If his ANC hasn't increased at that point, they'll do a bone marrow biopsy to find out why. If his counts are in 700 range, they'll do a routine bone marrow biopsy, admit us and start the next round of chemo. Most likely, though, his ANC will just be in between and will be home for awhile longer till they improve more.

I asked Dr Russell if I should pack a bag for Tuesday and he said that I should really be living in a state of constant readiness, similar to expectant moms near their due date. It's crazy to think about packing up right after unpacking, but hopefully it'll be for just a short visit (3 days).

Wednesday, July 3, 2013


As Hannah talked about this morning, Watts' ANC jumped up to 104 (from 22 yesterday). We were excited, thinking this meant we were within days of coming home. Around noon our doctor came by and talked through how things were going with Watts and asked if Hannah had any questions. Then he said, "Well, I think you guys should go home". Not wanting to be disappointed by a false alarm, or to go home only to head right back to the hospital, Hannah said, "You think we should, or are you saying go home?" And, to our delight, he said "Go home".

So we are home, and after 38 days in the hospital, home has never felt so good! Thank you for all the prayers, thoughts, encouragements, and gifts. We feel blessed and very loved.

On our anniversary...

It’s hard to know the words to write on a 9th anniversary… My heart feels full of words and thoughts and memories, but I cannot figure out how to express them, to make them articulate what I feel I need to say.

I married young and very foolish. I thought I knew it all but in reality knew very little…
But I did know this, Michael was a man that loved me selflessly and whose life reflected so much more of Jesus than mine did, and I knew enough to know that those were two good, good things. So, I married him. Thank the Lord, I married him.

Michael’s love for me has never wavered. Never, ever wavered. Like a rock he is, in a sea of my emotion and feelings—serving, loving, and dying to self for my good and for the good of our kids. Not that my emotions are a bad thing (because, goodness, do I ever love emotions!), but somehow together we are the perfect match. I feel things deeply and he hears me, loves me, and balances me out with perspective and truth.

We’ve had our rough times of marriage, times of learning to communicate, learning to fight well, and learning to deal with some rough life circumstances, and we’ve pulled through. And now, here we are, in our roughest season yet, every parent’s nightmare, and I have no doubt that regardless of what the next two years brings, we are going to make it. And be stronger and more “in love” than before.

Can I just say how very thankful I am to have him by my side?  I do not know how I would do this without him. I have seen this man hold our writhing, feverish son and sing hymns over him for hours. I have seen him sleep for weeks in a crib by our sick son’s side. In the early weeks, I have seen him do work from the ICU room, late at night, and early in the morning so that he can be faithful to his job. I have seen him dance with Piper to silly songs in the hospital room while functioning on no sleep. I have heard him speak words of truth to me during dark hours and breathe hope into my weary soul. Goodness, I love this man.

I do not know where I would be without you, babe, and I know for certain that I love you a million times more NOW than I did when I walked down the aisle to you. I know you’re probably rolling your eyes at my exaggeration, but, seriously, I love you.

Anniversary present...

...in the form of an ANC (absolute neutrophil count) of 104! Yesterday it was 22, so we are thrilled to be in the 100s. What does this mean as far as going home? Not sure yet. My understanding is that the # could go up and down a few more times before staying consistently high enough to go home. So maybe a couple more days if he stays in the 100-200 range? We'll see what Dr Buckley says when he comes by.

Best anniversary present ever!

Tuesday, July 2, 2013


Watts' numbers came back and his ANC is still 25, the same as yesterday. Sigh. We are thankful that the numbers aren't worse, but, goodness, we'd really like to see that number improve. The doctor isn't concerned at this point and said that he won't be until another week passes.

Tomorrow is our anniversary... 9 years. I was so hoping that we would be home but doesn't seem like that will be the case. I have heard that Olive Garden is delivering meals to onc. families tomorrow night... how awesome is that?

Trying to be patient and praying for a better ANC in the morning.

Monday, July 1, 2013

Monday morning update

Watts' ANC is even lower today so they are doing cultures to see if he has an infection in his blood stream. Platelets are still good so Dr Buckley said that at this point he isn't concerned about the low-count being from lurking leukemia cells. He thinks that the low ANC is simply from a virus/infection that Watts picked up. Watts' still has a low-grade fever off and on, some slight nasal drainage, and diarrhea, but over all has handled all of this like a champ.

I am so relieved that the platelets have stayed up, that I am not even bemoaning the fact that we're no where closer to going home.  Perspective is always a game-changer for me. We'll see how I'm feeling in a few hours...

Right now I'm thankful for:

Great platelet numbers.

Breakfast with Piper this morning.

Daisies from our house brightening up the room (thanks, Mom!).


A hard-working husband.

Blue sky breaking through the gloomy clouds outside the window.

A jolly little guy (despite feeling crappy).

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