Short update.

We are still home. Watts just started eating again and sleeping better, thank goodness, so we are just waiting for his counts to come up. His ANC is currently still at zero (pictures of him playing in the dirt were taken when his counts were still high, fyi) and it looks like he'll need a blood transfusion tomorrow. His hemoglobin level was borderline today so we are going to check again tomorrow morning before heading into the weekend. It is a long ordeal (6 hours+) for him to get blood so we are hoping that his level will rise just a little bit overnight.

We are very thankful that he is fever and infection-free so far! Now we just need a few more good nights of sleep so we can stop feeling like zombies :)

Zero.

Watts' ANC is zero, as we expected, so we are holed up and waiting for his counts to start recover. He doesn't need any transfusions at this point but we will go to Brenner on Thursday to see what his hemoglobin and platelet levels are doing. If they are too low, we will stay and he will get some transfusions.

After discharging from the Etopside/cytoxen stay, Watts stopped nursing which has led the doctors to think that he has some sort of sores down his throat from the chemo. Sleep has also been very broken due to nausea and possible pain. Despite the side effects, Watts has been loving being home and is generally good-natured if he has mama or papa close by. And he hit another developmental milestone: he stood for about twenty seconds today! Our little trooper.

Please pray that he stays infection-free while his ANC is so low. 

Please pray that he starts eating again. Thank goodness for the ng tube or we would probably be back in the hospital.

Please pray that Piper and I don't lose our minds as we are isolated in the house. Ha! But seriously.

Home again.

We got home yesterday right on schedule which was really strange and wonderful. We are so use to delays and horrible side effects that it felt a little surreal to leave at a decent hour and to come home with Watts feeling semi-normal. He did have several bouts of nausea yesterday that resulted in several outfit changes for both of us, but overall he seemed (and seems) in good spirits.

Next up on our protocal/road map is several days at home while we for counts to bottom out and then recover. After they reach a certain level, we will head back for the 21 day High Dose Ara-C stay. We have been told that it might take longer than 8 days for his counts to recover so we aren't sure when our start date will be. Early November sometime.

Today we start on Neupogen shots to help his white blood count recover faster.  Neupogen is one of Watts' ubber expensive medications. Because of our prescription plan (that we've maxed out) with our insurance company, the social worker and I had been told that Watts' neupogen shots would be $300 a week. When she called with our prescription for these next two weeks at home, she was told that it would be $800 a week. Because she is amazing at what she does and an advocate in every sense of the word, the social worker contacted the pharmacist at the company and was given a completely different quote... of $120 a week! We have no idea what changed or whether we will get that quote again, but the social worker did a little happy dance in the hospital room. I am very thankful...both for a cheaper price and for people that will go to bat for us. What a gift. 

This picture was before the last hospital stay but was too cute not to share. Thanks Anna and David for Piper's bike. Watts loves it too. 

And a shot from today...

After five months of hanging on to his blonde locks, Watts' hair is almost gone. He had some long "bangs" in the front (see bike picture) but was completely bald in the back, prompting us last night to give him a hair cut and even things out. I am obsessed with his bald head. Watts can rock any hair style.

Evened out front.

Bald back of head.

Day 4.

 Watts is doing great. Side effects have been minimal and seem to mainly make him sleepy. After weeks of broken, sleepless nights, I am not complaining about; I'm more rested now than I have been in ages.

Every time we make it through a hospital stay with minimal side effects, it is such a relief. With less than 24 hours to go, we are thankful. Very thankful.

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We met with a child life specialist yesterday and she evaluated Watts to see how he is doing developmentally. She used the Denver test on him and found that Watts is mostly on track with where a 15 month old should be. He is a little behind with his gross motors skills but that is to be expected given the frequent hospital stays and harsh chemo. The physical therapist also came by (Watts hasn't worked with one in a couple months) and, after working with him, said that she was really happy with how Watts is doing. Infant ALL kiddos can have some developmental delays due to the aggressiveness of treatment, so to get confirmation that he is on track is encouraging. Honestly, I can hardly believe that Watts has continued to develop in the midst of all of this. Amazing, really.

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For my own sake, since I have neglected our family blog for so long, here is what he is doing at 15 months:

Babbles constantly and has said the following words: ball, bubble, mama, dog, and no. Although mama and no are the only words he is using consistently. Also seems to be saying "what is that?" [Child Life Specialist was very impressed with his communication skills.]

Crawls, pulls up on things, cruises, and will stand for about two seconds.

Is good at communicating what he wants through grunting and pointing.

Has the craziest, goofiest facial expressions.

Is obsessed with dropping small objects in containers.

Is very social and lights up when new people come into the room.

Has a love/ hate relationship with Piper. Playtime with her usually ends with Watts screaming "noooo!" until his whole body shakes.

Things he loves: anything to do with music, animals, the peek-a-boo game, being outside, loud machines (esp. helicopters), and electronics.

Loves to dance and has some hilarious moves where he shakes his elbow and bobs his head.

Loving on his puppy dog.

Watching music videos with Papa.

Watts, we couldn't be more proud of you. 

You are our little warrior boy and we love you more than you'll ever know.

Extra wide window sill?

Definitely a playground.

L

Day 2 (Etopside stay)

He slept last night. Oh ironies of ironies. To sleep better in a hospital than at home says a lot about how often we've been here and, of course, the energy-zapping chemo coursing through his veins. We are 20% done with this stay; here's hoping all goes as scheduled and we leave as planned on Friday. 

Watts and I are trying to pass the morning by throwing things across the crib and listening to a little Indelible Grace. Keeping him off the floor is like wrangling a small angry tiger. He wants to crawl, wants to mess with his lines, and wants to follow Piper out of the room when she leaves. Despite the restlessness, he is doing well so far with the chemo with no detectable side effects. We'll start back up in a little while. He is getting two hours of Etopside, thirty minutes of Cytoxan, and four hours of the rescue drug, Mesna. We'll do the exact same thing for all five days.  

He is asleep now in my arms. Chemo is going. Doctors have come and gone.

I long to not be here. I long for all to be well in Watts' body, for cancer to not exist, for our days to be filled with park trips and play dates, and to not have to gather hair from my son's bed. As I shuffle past so many aching families in the halls of this floor, I long to make it all go away. Some stories I know, most I don't, but the weariness and grief I can see all around me. It is all wrong, really. All terribly, terribly wrong. 

This aching broken world, what hope is there in it? Death is inevitable, it haunts the healthiest of us, and ultimately strips us of all earthly loves. We walk through our days not knowing what tomorrow will bring, not knowing the number of our days. How does one live in a place of such fragility? How does one not break under fear of the unknown, the pain that inevitably lies up ahead?

We were made for something more. A broken Eden has us all breathlessly waiting and crying out for His return, for our true home, where all shall be made right. Cancer and death will have no place. Aching hearts will be filled. He will be there.

In the meantime, as we all trudge through these weary days, each of us facing our own challenges of sorts, of this I know: God is for me (Psalm 56). He rides the storm, holds me up in the darkest hour, and gives meaning to the bleak days. Oh Lord, you have been good to me. Come quickly.

Here we go again!

Watts and I are checked into 909 and waiting on chemo to arrive. Watts is unpacking my tote bag and anxiously watching for helicopters out the window; I currently have goldfish dumped on my legs and am watching all my chapstick being rolled across the couch. At the smallest sound outside, Watts starts grunting and tries to climb up the window to peer out at the helicopter pad. Obsessed is a very appropriate word for this boy and noisy machines. My mom (aka Gigi) and Piper are out doing art and will soon check in to the Ronald McDonald House. When we told Piper yesterday that we were going back to the hospital, she was thrilled and wanted to leave immediately to see all her friends... particularly Ms Heather and Ms Kathy at the RMH and Nurse Kimberly. The hospital is her playground and I am grateful. 

Oh, Watts shocked us all by gaining weight in the last two weeks for the first time in 5 months. He went from 22 lbs to 24 lbs 6 oz. Food and weight is a pretty constant worry so this is a huge praise! 

Sunday update.

Watts (barely) made counts so it looks like we will be admitting first thing tomorrow morning for a five day stay. I am so thankful that his counts are rising and so thankful to move ahead with treatment, but also dreading going back and making my boy "sick" again. It is a difficult thing to wrap my head around, even five months in, the whole bringing-my-happy-son-in-to-make-him-miserable-with chemo thing. Intellectually I know that these drugs are life-saving, but as a mama bear I want to grab him and run away to someplace free of pain and side effects. But, oh, I am so thankful for Brenner and for treatment and our doctors and nurses.

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In other news, we had the privilege of walking with Team Watts for the Light the Night walk yesterday (to raise money for leukemia research). Yes, Watts was neutropenic, but we kept him on the outskirts of the crowd and were loaded up on with antibacterial wipes and soap. During the actual walk, we brought up the rear with the paramedic bicyclists trailing us. It was a really fun evening.
Thank you to all who came out to walk in Watts honor and thank you, Jessica, for organizing. I'm sure this will be the first of many, many, walks to come.

Piper, without hesitation, rode a horse for the first time.

Team Watts!

Thankful.

[Watts' counts are still too low to admit so we are still at home. We will check counts again on Sunday to possibly admit on Monday.]

Beautiful Friday weather.

Knocking out some house projects (thanks to Gigi!).

Pictures of my nephew, Nathan Edward, who I am unashamedly obsessed with.

 Early, early morning coffee.

Gigi's help this week.

Watching siblings interact and love on each other. Most Some of the time.

Vacuum lines in the carpet (thanks to Gigi!). 

My goofy, hilarious kids. 

Michael, who does more than his share of the nighttime wake-ups with/for me.

Bless him.

 

Front porch sitting.

Monday sleepiness.

Watts is one happy guy the last couple of days. Sleepless, but happy. Last night he was awake for a couple of hours in the middle of the night for some reason (weird side effect of weekend antibiotic?). After trying for a few hours to get him to go down in his room, we groggily brought him into the middle of our bed where he started patting us on our heads, kissing us, bouncing on all fours, throwing himself on to our pillows, and giggling. Even in our exhaustion, it was hilarious. At one point he caught sight of some rays of the street light coming through the blinds of the window. He looked at the light, looked at us, looked back at the light, and said, "Wooow...woow, wow!"

In other news, his counts are very low so treatment will be delayed. We will go tomorrow to check his CBC again because his platelets are so low that he may need a transfusion. After looking back on old blog posts, I remembered that he did the exact same thing after the second round of MTX; his counts dropped, he needed some transfusions, and they took awhile to rebound. After all the craziness of the last stay, I am thankful for a little more time for his little body to recover at home.

So, on this rainy, dreary Monday, we are once again isolated in our neutropenic house, but are soaking up this happy (albeit sleepy) boy and enjoying having my mom back.

All is well.

Although we've been home for a couple of days now, I feel like I can just now start to catch my breath. Since leaving the hospital, Watts has had some temperatures that have been hovering at around 100, some very painful mucositis (in his diaper area), and some nausea. As a result, my days have looked a lot like me hovering over him and following him around, taking his temperature multiple times an hour, talking frequently to his doctors, and anxiously waiting for the temperature to crawl a little higher and send us straight back to the hospital.

But it has dropped today! Deep breath. 

And no more nausea. Thank goodness.

The last couple of days have not been my finest hours. This ambiguous waiting and watching...ugh, it has been super hard on me this time round. Michael, on the other hand, has been awesome and encouraging, and reminding me daily to enjoy the time that we do have at home instead of simply waiting and dreading being sent back. I am thankful for him and his wisdom, even when it takes me a few days to actually listen to him:)

So, the rest of this weekend, I am hoping to breathe and rest and spend some time outside. Maybe even wash my sheets and hang some pictures on the wall. We are scheduled to readmit on Monday for more chemo (five day Etopside stay) if his counts are high enough, but until then I want to smile a little bit more and hover a little bit less.

Cast your cares on the Lord and he will sustain you.

~Psalm 55:22

Home.

We are home, praise Jesus.

Day 7, I think.

This will be brief but wanted to update for all of you praying!

EEG is done. Everything looked normal, but he didn't have any episodes while on it. 

Hopefully they will never happen again.

Watts' poor hair took a hit from those EEG probes. 

We are trying to decide if we are going to buzz it now to hide the patches.

Fever has gone up and down the last couple of days. 

He has been afebrile for 24 hours now, though.

He needed blood yesterday again and it seemed to be a happy person's blood :) 

Within minutes of starting the transfusion, he was giggling and joking around.

His ANC is still good. It took a small dip but then climbed back up again yesterday so they are talking about us going home this morning. 

Watts is really nauseated. We are not sure if it is lingering effects of the MTX or whether he caught the stomach bug that apparently is sweeping the Ronald McDonald House, but he is throwing up a couple times.

Despite all of the above, Watts is happy, playful, and spent a good portion of yesterday evening racing/crawling back and forth on the couch in the room. Praise the Lord.

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Please pray for the nausea to go away. Please pray for wisdom for the doctors. Please pray for my nerves...unanswered questions and weird symptoms do a number on me...my mind goes to places that I don't want to go. Pray for our time at home (if we get home!) to be restful and good for Watts specifically. 

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We have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. 

Romans 5:1-2

EEG

Watts is currently hooked up to a million wires for a 24 hr EEG. We are hoping and praying that he does one of his weird eye things while on the monitors.

As of right now, the doctors are thinking that the disoriented, cross-eyed moments that he has been having, are NOT seizures but are more disorientation caused by the HD Methotrexate. Which would be fantastic. Apparently, not only can MTX cause mucositis, rashes, loss of appetite, and mouth sores, it can occasionally cause high fevers, disorientation (difficulty walking across the room, keeping eyes steady, etc.), and sometimes seizures. They don't know for sure that MTX is the source and they don't know for sure that it is not seizures, so they referred us to Neurology who, consequentially, ordered the EEG. And that's where we are now... waiting with our wire-laden boy, hoping to push a literal big, red button when he starts acting disoriented. Hoping for sooner rather than later.

I've been doing okay for the most part, but, after the agonizing process of watching them place the EEG probes on Watts' head, I feel very grumpy and very tired. I am searching my heart for all blessings that surround us...even here.

Watts' fever has broken. 

Gigi is here to help with Piper. What a gift! 

Michael did the hard work of holding Watts down for the EEG.

Hot showers after sleepless nights. 

The EEG is painless (after the initial placement of the probes). 

Dark chocolate with toffee and almonds from Trader Joe's.

Watts is currently napping peacefully.

Watts' is done with HD Methotrexate!

We've had some encouraging visitors that have brought us food and hugs. 

 The last four nights we have had our absolute favorite night nurses.

This YouTube video. Watts loves it...as does 95 million other people. So strange.

Grace and forgiveness for my ugly times.

Long night

Watts' fever kept climbing yesterday and was around 102.7 before Tylenol brought it back down. Around 7 pm, he displayed some brief behavior that seemed like possible seizures ( his eyes crossed and he seemed dazed four separate times). It was very scary and had all the doctors and nurses racing around, checking vitals, and hooking him up to leads. They are running a bunch of tests on him (most have already come back looking great) and we should see one of our favorite heme/onc. doctors sometime this morning. It was a long sleepless night but we are thankful that Watts has been acting normal and even playful at times.

Please pray for the fever to break, for answers about the seizures, and for peace and strength for us.

This is a marathon. 

Fever update

Watts' fever is up to 101.7 so they are starting him on antibiotics. His ANC is good so they are not sure what is going on at this point. Cultures so far have come back negative. Although we should be going home right now (methotrexate regimen is finished), we obviously will be here for longer. Please pray that his fever drops soon and also for strength and endurance for us.

Fever

Quick update: Watts spiked a fever late this afternoon (100.7). In the pediatric cancer world, anything over 100.5 is not good. Cultures have been drawn and he is being monitored closely. If it continues to rise, they will start him on an antibiotic regimen. He was acting irritable and puny, but he has perked back up with the help of some tylenol and is smiling and playing as I type this at 9:15pm.

Our hope is that this fever has been caused by the methotrexate (we have been told that can happen sometimes) and that it is not something more serious.

Prayers, as always, appreciated. 

Day 3, Round 2

Today has been a good day! After having the nurse practitioner come up with the idea of using some Lidocaine on his irritating foley, Watts slept great last night...therefore, we all slept great!

Yesterday, the last of the HD Methotrexate dripped into Watts' body. Hallelujah! He is now continuing fluids and receiving the drug, Leucovorin, to rescue the "normal" cells. He cleared his first blood test at 42 hours, now he needs to clear the 48 hour one and we should be going home at 72 hours (tomorrow at around 4pm).

Side effects wise, Watts has been gagging some but is still nursing and tolerating his night feeds. If it is like last time, he'll stop eating once his side effects peak on day 5. Until then, we are enjoying our happy guy. We even got to do a little music therapy yesterday with Collin.

Thank you for your continued prayers. We can not put into words how much we appreciate the prayers, love, and support.

5 down, 29 to go...

Anticipated inpatient days for this round, that is, of the dreaded Consolidation Phase.

We surprisingly started "on schedule" yesterday, with Watts' mucositis peaking on day 5 and almost resolving by day 7 (yesterday). He has no diaper rash, some rash around his hickman dressing, and only occasional gagging from the mucositis. He is nursing again but still wont touch table food. All that being said, after checking his CBC (Complete Blood Count) and CMP (Comprehensive Metabolic Panel), we were given the green light to proceed.

We have now finished 16 of the 24 hours of HD MTX. Lord willing, at 4pm, he will have the last High Dose Methotrexate drip into his body and will never, ever need it again. This is the fourth round of the awful drug and I pray that it has done its dirty work. Dr Russell told us yesterday that at this point in treatment, the leukemia cells in Watts' body could be gone. Or they could be down to the thousands, or the hundreds, or even to just one. One leukemia cell, left untreated, can reproduce quickly. So, hypothetically, all of this chemo, all of these hospital days, the next two years that stretch before us, could be for one little bitty leukemia cell that is hiding in a dark corner in Watty's body. Pray, pray, pray that that one lone cell dies.

How are we? I don't know, really. He sustains us daily but this journey is challenging. We are weary of the hospital, of our son being hooked to lines and tubes, of the waiting...always endless waiting. The nights here are also typically sleepless and leave me longing for the sun to rise. And usually, as it does finally peak over the top of Brenner and chases away the shadows outside our window, Michael and I have to apologize to each other for insensitive, frustrated words spoken to each other in the dead of night. Cancer is hard on marriages. I am thankful for mornings filled with new mercies, forgiveness sought and given freely, lots of coffee, and a napping son.

The Lord is good. It may seem strange coming from my lips, as my son fights cancer, but, strange or not, I know His goodness to be true more than ever before.

“We can ignore even pleasure. But pain insists upon being attended to. God whispers to us in our pleasures, speaks in our conscience, but shouts in our pains: it is his megaphone to rouse a deaf world." 

 ― C.S. Lewis, The Problem of Pain

 The Lord is near to the brokenhearted
    and saves the crushed in spirit.

--Psalm 34:18

 

Round 2 (technically 4) of HD MTX

We have been re-admitted for more chemo (and a blood transfusion too). Loading up on fluids now...chemo will start in a few hours. So far, he's all smiles!

Thankful.

He nursed! Praise Jesus.

Watts was up all night long playing in the middle of our bed and making the craziest faces.

He was so hilarious, we couldn't even be frustrated with the lack of sleep.

I got the chance to hear Michael share his heart at CRU and lead worship last night.

The topic he spoke on? Suffering. It was powerful to say the least.

There is color on my living room walls. A beautiful blue/gray.

This house is starting to feel like home.

My mom has all of October blocked off to help us, particular with all of the inpatient days.

 Very thankful.

Someone dropped off a giant mum for my front porch the other day... 

A fun surprise to find!

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Thank you all for praying for our boy.

Side effects (so far)

Watts is smiling and crawling around this morning, which is so wonderful to see, but he has also stopped eating/nursing. He has also been gagging intermittently and vomited several times yesterday and last night. A clear sign that the mucositis is back. Thank goodness for the NG tube or we would probably be readmitting this morning out of fear of dehydration. Instead, I can pump and we can bypass the mucositis and go straight to his belly.

Once again, his side effects should peak on Thursday, which is also when we will go to clinic and decide whether to start the next round of the same awful drug, HD Methotrexate. My guess is that if he doesn't start eating again, we will be delayed. We definitely do not want a repeat of last time, when this and also this happened. I shudder to think about it.

And yet he is still smiling. Oh to have the resilience and joy of a child!

Thank you for your continued prayers.