Home sweet home.

After a short blood transfusion delay at the hospital, we came home to our new house on Thursday! We've been up to our necks in boxes and projects the last two days, but can't stop admiring the smooth, popcorn-free ceilings (thank you, dear friends!), enjoying the extra space, and working our poor family members like dogs (thank you guys!). We love it and feel very, very blessed.

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Sweet Watts has been all out-of-sorts the last couple of days. The steroids are doing a number on him as are the lingering effects of the chemo and he is just an angry, irritable, weepy little guy most of the time. Prayers, of course, are appreciated. While it is to be expected, it is still hard to watch as parents and to know how to help.

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Happy birthday to my best friend and lover, Michael. There are truly no adequate words to say how much you mean to me. I love you and am so thankful to be partnered with you on this crazy journey. You are the best of the best.

Nap today

He'll sleep as long as I'll hold him this afternoon... And I'm happy to oblige. He is still irritable but no major fits like yesterday.  So thankful that he's resting right now.

Divide and conquer.

It is a busy week this week... It leaves my head spinning, honestly. What a crazy life this is! The kids and I are in Winston for Watts' treatment (with my mom and sister, Suzi) and Michael is in GSO, running point on all the moving and house stuff. Yesterday the closings both went well and we are now homeowners of the house we've been eyeing for over a year... and passed on our beloved whitewashed house to young newlyweds. We brought both our babies home to that whitewashed house and put in a lot of hours of sweat and tears into it, so it is bittersweet to move on. That being said, with the new house we'll have almost twice the square footage with a smaller monthly mortgage payment, so it's only a little bittersweet;)

Michael told me that there was a small army of people over at the new house yesterday to scrap the popcorn ceilings and another group of people signed-up to move all the boxes and furniture today. Thank you guys!! What a huge, huge gift to us. I can't wait to see everything.

Happy baby during chemo.

Sweet Watts has had a hard time this stay. In the course of a couple hours, he went from smiling and babbling and pointing at helicoptors, to screaming nonstop for 30 minutes immediately following his Cyclophosphamide dose. He finally calmed down after some Tylenol, Benadryl, and a visit from Piper (and silly Gigi), but his mood is definitely more subdued and irritable. We are not sure if his fit was in reaction to the CPM or irritability from the steroids or exhaustion. He has gotten a lot of drugs in the last 72 hours and it seems to be catching up with him. For those that are curious, on Monday and Tuesday he got Daunorubicin, Vincristine, and Dexamethasone. Yesterday and today he will be getting Cyclophosphamide, Dexamethasone, and (only today) PEG-ASP shots. Oh, and he also had Triple Intrathecal Therapy on Monday and received Methotrexate, Hydrocortisone, and Cytarabine. And a bone marrow aspirate.

Post-chemo and crying fit.

He is a trooper! We are hoping and praying that after his 12:30pm (and his last 12:30am) dose of Cyclophosphamide that he will not have any reaction and that he will nap well today despite the steroids coursing through his system. 

We are scheduled to go home (to our new house!) on Friday and should be outpatient for the next 17 days. Once again, his counts will bottom out in a few days so we will need to be extra careful and isolated to keep him from catching a virus or infection. After the 17 days, we will start the Consolidation phase of our protocol which is almost all inpatient... But, we'll cross that bridge when we get there.

Thank you for all the support during this crazy time in our family's life. Words can't express how much we appreciate it.

Back for more!

Admitted...or not.

We have found that it is best to hold very loosely to plans these days and to learn to laugh when things change at the last minute. Or at least try to. Michael dropped Watts and me off at Brenner this morning at 7:45am for our scheduled lumbar puncture, bone marrow aspirate, and chemotherapy. We had been told repeatedly that we would be admitted for four days, and had, obviously, planned accordingly. As of last night, our house is almost 100% packed up, my mom, Suzi, and Josiah are up to keep Piper, and we have a Ronald McDonald room reserved for the next four nights. We even took a last family photo in front of our soon-to-be old house.

After arriving at Brenner, however, I was told that the doctors had taken another look at Watts' protocol and decided that he can do outpatient chemo for two days and only admit for the last two. I laughed when they told me. Of all the hospital stays, this would be the stay where they send us home.

So, we are back home. We are going to go buy some milk, unpack the silverware, and enjoy two more days at our house. I'll go to clinic with Watts tomorrow morning for more chemo then will admit for two days starting on Wednesday morning. At least I think that is the plan;)

Please pray for logistics of the move (close on Wednesday, move on Thursday), for Watts' little body to stay strong during this chemo round (while all leukemia cells die, die, die), for Piper's transition to the new house, and for supernatural strength and peace for Michael and me.

Good counts.

Watts' counts look good so we are planning to admit for chemo on Monday. In the meantime, we are packing, playing, and watching our boy LOVE his time at home.

Just hanging out.

Packing.

Finally making our staple granola.

Sharing my Chipotle beans and rice.

A little tent wrestling.

Clinic and delays.

The kids and I went to clinic this morning to get labs drawn. I had hoped that we could discontinue the neupogen shots and get confirmation that we were on track to admit on Friday, but Watts' ANC had other plans. It is 100, nowhere near the 750 needed to begin next chemo round, and expected to possibly still drop down to 0. The doctor isn't concerned at all but chemo will definitely be delayed till Monday at the earliest but most likely till Wednesday. . .which, just happens to be our moving day. I had been joking that I wanted to be admitted during the move but I did not actually mean it!

Our life is a little funny these days.

So, it looks like this week will be more isolated time at home. I'll keep sanitizing our way through the house, gasping at every sneeze, and pressing my palm up to foreheads, but also loving that we are not in a hospital, Watts is infection-free, and that he seems to be coming alive these days. He is babbling, trying to stand, and making the funniest facial expressions.He has such a fun personality emerging!

I could eat him up, I love him so.

Piano player.

Faith and control.

 My kids are doing great, Watts is happier than he has been in months, and we are home. And yet, my heart is all out-of-sorts inside of me. I am struggling with trusting God, not with the big things, ironically, but with the small, everyday things. We are preparing to move and the logistics seem complicated and then the money... oh the silly thing that is money...it just doesn't seem to work. A $3000 repair and no way to back-peddle out of it. Ridiculous co-pays on (life-giving) medications. A depleting Emergency Fund. There's more going out than coming in and, for a Dave Ramsey family, that is enough to break Michael and I out into cold sweats.

Honestly, though, I know this isn't really about money at all.

I trust God with Watts, with leukemia... at least, most of the time.

Why do I kick and scream to let go of the smaller things?

The smaller things are messier, I think. With cancer, I am out of control. I literally have no say whatsoever about the lurking leukemia cells in my son's body. I can curse, scream, and kick but to no avail. I simply have to follow doctor's orders and wait. With the smaller things in life, though, it isn't as black and white. I am suppose to actually work and do things, to be a responsible adult, a good steward, and "up with the sun".

I think that I let the responsibility get to my head and fool myself into thinking that I'm in control and lord over certain, smaller things in my life. Like money. Like schedules. Like what my kids eat. And slowly, ever so slowly, my hands are getting pried open. Goodness knows I have no control over my schedule anymore! And organic veggies and quinoa for dinner? I'm lucky if I can get my son to nibble on a peanut butter cracker. And, money, seductive money, its security and comfort is slipping away too.

It is all a gift, I know. This life, these kids, our health, our bank accounts...and it is all fleeting. I want to live more deeply, with a sweet peace and confidence in Him regardless of my son's health, my back account, my schedule. But, oh! It is hard to have things stripped away.

And when it is all gone, all stripped away, be it now or on my death bed (as everything ultimately is in the end), will I say, truly say that He is all I need? 

Lord, I believe; help my unbelief!

Clinic.

A little cartoon watching as we wait in clinic. Sweet, sweet boy.

Home.

We are home and Watts is doing great. He seems to be acting the most like himself that he has in the past three months (since he initially got sick). He is also gaining confidence in his crawling and pulling-on-things abilities, and is even exploring the house some on his own. Food-wise he is nursing, doing tube feeds at night, and eating very small amounts of table food. He will not let a spoon with baby food anywhere near his mouth.

Praying that the next few days he stays infection-free until his numbers start rising again. I gave my first shot of neupogen to him last night and those should help numbers rise fairly quickly. We go to clinic in the morning to check his counts.

Chemo, blood, home.

We have a few more hours of chemo, then he'll get a needed blood transfusion, then we should be going home! We should be home for about ten days closely watching his counts. His ANC is expected to bottom out to zero in a couple days so we are going to have to be hyper-vigilant about germ exposure. We'll be giving neupogen shots at home to help increase his counts too, we just have to make it infection-free over the next week or so. Isolated or not, we are VERY excited to have some time at home. 

Best day.

We have had such a sweet day at the hospital...I've had both kids and it has been so good for this mama's heart. 

And this miracle is currently happening:

My cup overflowth.

New hardware.

I'm sitting here with Watts as he sleeps off drugs from surgery and chemo drips into his body simultaneously.

Yes, the central line/hickman broke again. Then was fixed. Then leaked again. All in about 12 hours.  Last night was a blur of residents and surgeons and nurses trying to figure out how to repair the thing.

Alisa documented repair #1. Watts is on happy med, Versed, at this point.

By morning, the decision was made to just replace it. By 9am, Watts and I were downstairs in pre-op and by 9:20 he was back getting new hardware.

He woke up livid and struggling but with a new line and no complications.

It was a pretty rough time, honestly. I don't function well with no sleep so the quiet moments in the wee hours of the morning were filled with a lot of tears and angry prayers. I may or may not have told God that it just wasn't fair. I just felt tired of it all...tired of holding Watts down as he screams (new IV had to be placed in his foot and lots of messing with his line late at night), tired of waking him up to have yet another set of doctors look him over, tired of lines, tired of being away from Michael and Piper, just tired of all of it. This was suppose to be an "easy stay".

At some point in the wee hours of the morning, Soren (the on call resident who we know from PICU days) said to me: "He looks great. Just remember, this is just a small bump in the road...he is just fine." And it was like a load was lifted off my shoulders and I remembered the truth: 1) My son is a warrior boy and resilient as heck.  And he is infection-free at the moment and looks great! 2) We have made it through a lot and can definitely make it through a sleepless night and a faulty central line. It is a small, small thing in light of it all. 3) I will in fact someday sleep again. 4) He has always been faithful to us, even in the hardest of times.

And then I was felt like I could breathe again. It is still hard and frustrating, but good to remember that in light of the seriousness of leukemia, a faulty line is seriously just a bump in the road.

Thankful for:

Just a broken line (not an infection!).

Sweet hugs from nurses. 

Coffee after sleepless nights. And then second cups.

Awesome PACU nurses.

Salted dark chocolate.

Keller sermons.

Chemo started ON SCHEDULE! Craziness.

The happy time medication, Versed.

A visit from a sweet friend last night. Thanks Alisa!

A PICU nurse who came up (to save the day!) and started the IV.

A new teddy bear for Watts (from PACU nurse).

"Ninja Nurse," Jo, who seriously went to bat for little Watts with a rude surgical resident last night.

Nurse Laura, who caught a slip-up made post-op and remedied it.

N.A. Linda who stood over Watts singing for several minutes to help get him to sleep.

I am blessed. And still will probably cry when I finally see Michael tonight. . . 

 

PS. I re-listened to a fantastic Tim Keller sermon this morning while Watts was in surgery: http://sermons2.redeemer.com/sermons/peace. Good stuff.

Back for more.

Watts got admitted for scheduled chemo yesterday and, even though we just left two days ago, we are so thankful to be back "on schedule" and not here for an infection. So far, side effects have been non-existent. These five days are suppose to be much easier on our sweet boy. He does have a slight cold that he picked up from Piper, but the doctors aren't worried at all about it.

On a different note, we are currently under contract for both our house AND the house that we have been eyeing for about a year down the street. This has been in the works for the last couple weeks but I keep forgetting to update about it. We are excited and should close on both at the end of the month! Last hurdle to overcome is a cracked heat exchanger the inspector found in our current house... And then the move!

Home again.

We barely made it home yesterday. Like some depressing soap opera, we had the drama of having one of watts' lumens (from his central line) rupture as they were flushing it before we left. They are thinking that some blood clotted in it during the last 9 days (even though he was on IV fluids the whole time) and it burst with the pressure of flushing it. 

Sigh.

Thankfully, the surgeon just happened to be in the room next to us and was able to fix it without watts having to have surgery. . .which is what we were thinking was going to have to happen.

Four hours and a super-sized central line (it's about 8 inches longer now) later, we got home.

We ate a yummy dinner from the spooner's (thank you!), took a walk around the neighborhood, and got the babies to bed early. Watts then proceeded to be up all night long. Poor little fellow is more use to the hospital now than he is being home and was just very out-of-sorts. It is still so good to be home, though, even with the sleepless night.

This morning we dragged ourselves out of bed and went to the Sci-quarium. More on that later... Now I'm going to nap too. Thanks for the prayers and well-wishes along this crazy journey! 

Homeward bound, here's hoping!

I don't handle transitions very well. Or maybe I handle transitions really well and over-compensate? I don't know, really. All I know is that when I find out that we are going to be discharged, I go into manic packing mode and do not like my efforts to be thwarted. I'm sorry, babe. All that to say, I am packed, Watts is napping, and we are set to discharge when he finishing his dose of Vancomycin in a couple hours. We'll be home till Friday then will come back to clinic to check his counts and possibly re-admit for a 5 day chemo stay. They are doubtful that his counts will be high enough, which is just fine with me. If that's the case, we'll come back Monday to check them again.

We had a sweet little family slumber party in the hospital room last night and all slept pretty decently. I needed both babies under the same roof and Piper was thrilled to oblige. She wore her scrubs and packed her owl suitcase and delighted all the nurses and staff (without saying a word, of course... nurses are her heros but still "strangers" according to Piper). It was a fun way to end this tedious nine day hospital stay.

We are very ready for some family time at home and very thankful that Watts' infection was minor and that he is back to his wild, crazy active self. I don't like taking a break from chemo but it has been nice to see Watts come to life while taking this unplanned break from the hard drugs.

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!

Nurse Piper

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