Thankful (Thanksgiving).

We were able to attend the (almost) annual Van Patter/Guthmann Thanksgiving in Waxhaw this year. [Our two families have been spending the holiday together since Michael and I were teenagers.]
We knew that it was a bit of a gamble to go since Watts was two doses into his steroid week, but it seemed worth it to make our first trek to Charlotte in over half of a year. We were just there for the day, but we are so glad we went! We were also able to see a number of my aunts and uncles and my Gramma Shirley and Grampa Ed. Such a gift.

Watts made it till about 5 or 6pm yesterday before he started falling apart and we scooted back to Greensboro. The steroids have since taken our sweet boy over and have made him miserable. Today he has spent the morning crying and clinging to us; one moment he will stare off into space blankly, the next moment he will be screaming and clinching his fists till his whole body shakes. Nasty stuff, those steroids.

Needless to say, it is rough on him and rough on Piper, Michael and me. We have 6 doses left then we will get a three week break. Hallelujah.

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We have much to be thankful for this year... that goes without saying, really. Our hearts are full (and really tired, but that's another story).

This year in particular I am thankful for:

The past 6 months with Watts. 

Each day is a gift, I am realizing, and my son is a fighter.

A resilient, vivacious, stubborn, and hilarious daughter. 

There are not enough words to describe this girl... or my love for her.

My husband. I wouldn't want to be doing life with anyone else.

Friends and family who have supported us through thick and thin. 

And there's been a lot of "thin" lately. What a gift to be a part of community.

Mama/Gigi. She has given many, many days to us over the last 6 months to help with Piper 

(and cook, clean, unpack, etc.).  The consistency for Piper and the peace of mind for us has been simply invaluable. Thanks, Mama!

The Lord. He has sustained us step by step.

Morning procedures. [Updated!]

 UPDATED TO ADD: Just got the call that there were NO detectable blasts in Watts' bone marrow!! So thankful. This was expected (and doesn't change his treatment whatsoever) but it is still really, really good news to hear.

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We are home. Watts and Piper are down for naps and I just spent an hour curled up on the couch with a mug of ice cream and some online retail therapy. Except I "pinned" instead of really buying anything; I just found myself trying to shut off my mind for awhile.

Totally unrelated picture from yesterday.

The morning procedures went well. Everything happened in a timely fashion and he was in and out of sedation in no time at all, complete with a dressing change and a new NG tube. Side note: the anesthesiologist said that Watts has built up such a tolerance to sedation medication that, per kilo, this morning he had 14x what it would take to put a grown man to sleep. He said that if I had had the equivalent of what Watts was given for his procedures, I wouldn't be breathing on my own. Good heavens. His PICU days combined with all of his routine sedations for bone marrow biopsies and lumbar punctures have built up quite the tolerance.

In the recovery room, unfortunately, he started throwing up quite a bit and was moved upstairs for observation and fluids. After an hour or so of throwing up and gagging, I noticed that his NG tube was coming back up his throat (not sure if this caused the vomiting or if the vomiting made it come back up). It took a few failed attempts to fix it to cause them to put in a whole new tube. Again. Only this time he was fully awake, poor boy. After the second new tube was in, he stopped throwing up and passed out in my arms. He slept all the way home and even through being transferred from carseat to crib.

We now await a phone call from his doctor for the preliminary bone marrow results. They should be back by the end of the day. Thanks for the prayers!

Thank you to Alisa for coming along, cleaning up throw-up, and being a great support! 

And to Francie for keeping Piper!

6 months ago.

Six months ago Watts was going on day two of fever and we were about to make our first ER trip...

24 hours into the initial fever.

Then all of this happened.

Feeling emotional and thankful on this rainy Wednesday, as my babies sleep in the other room.

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Watts' counts look good so Watts and I will head to Brenner first thing tomorrow morning for the lumbar puncture and bone marrow biopsy. He'll head to the sedation suite around 9am. He typically has a hard time after these two procedures so please pray for minimal pain and discomfort for him. And for no leukemia cells.

Weekend.

Watts' counts flew up on the neupogen shots and allowed us to have a more normal weekend. We even went to part of the church service and the big, church-wide Thanksgiving dinner (but kept a wide-berth from the crowd). Watts was his normal wild self (aka arching his back and attempting to wrangle himself out of my arms constantly) and ended up crawling around on the floor during the music portion of the night. Totally germ-free floors, I'm sure ;) It was strange but wonderful to not be in the hospital or isolated at home.

His ANC (which helps measure his ability to fight off infection) won't be that high again for awhile, but we are hoping to find some sort of balance of protecting Watts, particularly during flu season, and of resuming some sort of "normal" life. It is difficult to navigate through because even a low-grade fever will send us to the hospital. We have talked to Watts' doctors and they all seem to agree that we have to use discernment and do what is best for our family... and that while we need to keep Watts away from possible viruses and infections, it also is not healthy for Watts to grow up in a bubble. Ambiguous stuff... I am sure that it is going to take some time to figure out. We will also have to see how his counts respond to the next round of chemo.

Because his counts flew up so quickly, we are currently scheduled to start the next round of treatment on Wednesday morning. We will double-check his counts on Tuesday (just to make sure they haven't dropped significantly since stopping the neupogen) and then do the lumbar puncture and bone marrow biopsy first thing on Wednesday morning. The bone marrow biopsy will be to check that Watts is still in remission. It is expected that he is (particularly because we just finished a lot of high dose chemo) but we are still nervous. Prayers, of course, appreciated.

Looking ahead.

Watts woke up happy this morning after two hard days of crankiness. Every time we come home there seems to be an adjustment period and this time was no exception. We celebrated his cheerfulness (and a neupogen-boosted ANC) with brunch down at Sticks and Stones (best biscuits ever!) and some deep sighs of relief.

We will check counts again on Monday and possibly start the next round of treatment on Wednesday or Friday of next week.

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I've gotten a lot of questions about what treatment looks like now that we've made it through the HD Ara-C stay. Well, treatment is far from over but Watts has made it through the most intense part, Lord willing. We are now waiting for counts to recover and then we will start the next round of treatment called Continuation I.

On day 1 of Continuation I, he will get Triple Intrathecal Therapy (a spinal tap) of methotrexate, hydrocortisone, and cytarabine. He might also have a bone marrow aspirate but the doctors have not made a final decision about it yet. After the spinal tap, we will go back to clinic and he will get the chemo drug, Vincristine (IV push over 1 minute). At home we will start back on steroids and continue for five days. For the three weeks following the steroid week, he/we will be going to clinic weekly for chemo (IV lower dose Methotrexate) and we will be giving Mercaptopurine to him twice a day at home.

We will repeat this four week cycle (spinal tap/steroid week followed by three weeks of IV MTX and MP) two times then we will admit for an Etopside five day hospital stay, followed by some recovery time at home.

After that, we will do the whole 8 week cycle all over again and end with another Etopside five day hospital stay. That stay will be our last scheduled inpatient stay! After Continuation I, we will start Continuation II (aka Maintenance) which will last for a full year.

Confused yet? To complicate the matter, IV MTX and MP are count dependent, so we may be skipping some weeks and/or getting delayed. We will be holding our calendars very loosely, as usual.

Home sweet home.

 We are home. Bags are unpacked, laundry washed, groceries in the fridge (all thanks to Gigi and the Moore's!), and we are loving being home.

The kids do tend to have a few rough days of re-adjusting back to normal routine and we are in the throes of those days now. This results in some tired parents, lots of heart-to-hearts with Piper, some co-sleeping, and early morning cartoon watching (I don't parent well before 7am).

But, goodness! Home feels so good! Thank you so much for the prayers and encouragement the last couple of weeks in particular. It means so much!

Day 14/Home!

Watts'ANC shot up overnight so we are packing and heading home! So happy and thankful. He'll go home on neupogen shots to keep his white blood count climbing, but we are in the clear for all the scary fevers and infections due to the chemo. Very relieved. 

Now we're just packing, eating pirate booty (thanks, Natalie!), and waiting for our social worker to work some neupogen magic with our insurance company.

Thank you for all the prayers and well-wishes!

Day 13.

Day 13! Everything is going well here at Brenner. Watts didn't need any transfusions today and still hasn't had any fevers. We are very thankful. The doctors have let us know that it is definitely the exception, not the norm, to avoid getting fevers/infections post HD ARA-C. We will gladly go outside the norm in this area!

More photos from the last couple of days:

Watts, the racer.

Ah! Real life.

Nerf gun wars between "12" and "13".

Gigi, our super hero.

Day 12.

 Watts is trying to escape! No fevers, no transfusions today. We had a fun time playing bingo with the floor---sweet families and adorable kids. Michael and our neighbor's boy got nerf guns and were shooting each other in the halls. Hilarious. No other big news, just hanging out on the 9th floor.

Day 11.

No big news today. Counts are still down; getting a blood transfusion in a few minutes. Mouth seems to be bothering him some too (stopped eating/nursing again) but no sign of mouth sores. He also didn't seem to want to sleep last night and was up for about four hours in the middle of the night and no nap this morning either. Crazy boy.

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This little guy is growing up. A baby or a toddler? Although I'll keep calling him my baby till he's probably ten, he is looking like a toddler more and more every day. I love, love, love him.

Day 10.

Oh to be home! Watts and I have both been a little out of sorts today... he can blame his low hemoglobin, I can only say that I'm getting stir-crazy with a bit of a bad attitude to boot.

There is a little one next door who owns this floor. At 18 months old and the same diagnosis as Watts, he has spent the last 15 months in and out of this hospital and still has a long journey ahead of him. He has relapsed and will soon be heading to Duke for a bone marrow transplant, but you wouldn't know it by looking at him. Last night I pulled Watts out into the hall for a wagon ride and this little guy was standing in the middle of the hall breaking it down to music on the iPhone, a crowd of fans and nurses around him. He is a hero, as is his family.

And I gripe because I am bored and just wanna go home.

My prayer is to have a contented heart regardless of the circumstances...in the very midst of suffering, or boredom, or isolation, or fear, to rest in Him. Not because I am numbing myself out to the circumstances around or chanting some feel-good Bible verse, but because I know that He is in the midst of it with me. Just like Jacob wrestled with the angel, God invites the honest cries of my heart and the wails of my weariness. There is no surprise here for Him. His sovereignty holds my days in place, He has walked the path of ultimate suffering and pain, and knows every tear. And He is good.

His mercies are new every morning. Thank goodness.

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Psalm 84: 5-8

 

5 Blessed are those whose strength is in you,

in whose heart are the highways to Zion.

6 As they go through the Valley of Baca

they make it a place of springs;

the early rain also covers it with pools.

7 They go from strength to strength;

each one appears before God in Zion.

8 O Lord God of hosts, hear my prayer;

give ear, O God of Jacob! Selah

Day 9.

Naps on mama. Nemo watching, again. Wagon rides. Castle building (thanks to awesome art therapists). Guitar strumming. Spaghetti and frosty eating (Watts ate his first solid meal in weeks!). Babies tucked in for the night. One more day done here at Brenner.

Watts gained a teeny tiny bit of weight today, thank goodness. Counts have also bottomed out. Now we wait for them to recover... 

Day 8.

Day eight and holding steady. Watts is still fever-free and as wild as ever. His weight did dropped some more in the last two days so I would really, really like to see some higher numbers soon. Other than that, we are just waiting for his ANC to drop and praying for no fevers. And for the walls to not close in on us... We are starting to get a little stir-crazy.

Day 6 and 7.

We are watching a movie and having another family sleepover in 912. Piper is cuddled up with her papa on the air mattress and Watts is already snoozing in his bed. 7 days down!

Yesterday and today have been "busy" playing, taking wagon rides, and, of course, helicopter watching. He is still fever-free and looking great. His weight did drop down 1 lb since he admitted a week ago so I am upping the pumping and feeds and hope to see some weight increase before the end of the week. The doctors don't seem concerned at this point but don't want to see any more weight loss. 

Some people have asked what our room looks like so here are some pictures of our home away from home:

We're all fancy this stay and have shelves and a gate!

Playmat and toys are the hospital's.

Watts' bed (and him napping). We store the air mattress above his bed.

Nurse's station/corner.

Our Thanksgiving tree.

Day 5.

 

Watts is having a good day. He got a blood transfusion this morning (hemoglobin level was 6/very low) but the rest of the day he's been playing, making faces at the nurses, watching for helicopters, napping, and taking wagon rides. He's a wild, funny little guy. He has an inside joke with one of the nursing assistants, Marcia. She asks him in a deep voice, "Watts, you doing okay?" He nods his head emphatically "yes". "Can I get you anything?" she asks. He shakes his head "no" and then starts grinning. Then sometimes he reverses his answers and thinks its even funnier. He is also infuriating the nurses by showing clear preference for the doctors, in particular Dr Buckley and Dr Russell. He will lunge for them, nestle down on their shoulders, and refuse to come back to me.
 

Piper is also slowly adjusting to being back at the hospital/Ronald McDonald House. We've hit a few bumps in the road this time but things seem to be smoothing out a bit. Yesterday afternoon I got some time with Piper and we sat outside the Ronald McDonald House and "fed" berries to the cat statues for almost an hour. I was planning to run some errands but I could tell she wanted to linger. So we lingered. We picked berries and named the cat and angel statues. The day was stunningly beautiful, fall in all its glory, and I tried to still myself enough to soak it in. It is life-giving to her, I can tell. Those uninterrupted moments when I am not rushing her to the next thing? They seem to be significant. I miss them a lot with the busyness of life but sometimes I stop and pause at the right moment and her little cup seems to be filled up.

Watts is waking up now so it's back to helicopter watching. Watts is down for the night now so I'm off to bed too. These days are long but seem to be without a minute to spare. Between night wake-ups, entertaining a wild baby, and trying to love on a precocious three year old, I am exhausted...but good.

Thank you all for the continued prayers and support. And thank you, Susan, for the yummy Trader Joes goodies you dropped off!

Day 4.

Watts is doing great. He hasn't had a fever in over 12 hours and seems to be a little less nauseated. He is completely unplugged from everything and is absolutely loving having more freedom.

He will start his neupogen shots (to boost WBC) today and will continue getting oral glutamine to possibly help prevent mouth sores. Mouth sores are not a common side effect for HD ARA-C, but Watts has a history of getting bad ones. If Watts gets mouth sores, the doctor says that it could make him more susceptible to getting Strep Veridans, an infection starting in the mouth that can lead to the high fevers (and a lot of other bad stuff) associated with HD-ARAC. So far there's no sign of any sores!

 

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Today I am thankful for:

A view of the treetops as they slowly change color.

My mom's help.

A red wagon for giving Watts hallway rides in the evenings.

Chocolate. Any kind.

Keller's new book on suffering. Good stuff.

Day 3.

As of 6am Watts is finished with chemo for this stay. Now we just hang tight and wait for his counts to bottom out and then start to rebound. Once they start climbing again we get released!

Friday night "out"

We strolled the 9th floor hallways for a while tonight, with Watts masked up and tethered to his IV pole. Amazingly, he's suddenly become fine with wearing the mask and didn't even try to pull it off his face! The medical staff has become a sort of family here and we made lots of stops to talk with nurses as we looped around the floor. We really are thankful that Watts is in such good hands at Brenner... even though we would rather not be here right now.

We'll all going to sleep now-- we have a 3am wakeup for zofran (nausea prevention), chemo, diaper change, and eye drops. Good news is, this will be the last dose of chemo for this stay!

Prayers.

Babies are napping simultaneously in the room. There are sounds of machines beeping and babies crying in the next room over but all is calm in here. Michael and I are catching our breath, reading some Keller, snoozing between the pages.

Watts' fever is down, thanks to Tylenol, and zofran has helped his nausea. 

Dose #3 is running now. Two more hours to go. The smell of chemo seeps out of every pore, and his diapers reek like sulfar. Powerful stuff, that ARA-C. I envision it storming my son's body, smashing down doors, and hunting out every single lurking leukemia cell. No dark corner will be left unsearched, this will be the last battle. 

My prayer is that this is it. No more leukemia after this round. Granted, there is no way to check and test for those few lurking leukemia cells, no way to know for sure that it is all gone until we have years under our belt, but my prayer is that by tomorrow when this high dose chemo is finished, so will be the leukemia. That that one lone abnormal white blood cell will be wiped out and the battle won. Lord Jesus, please.

For myself and Michael, my prayer is a prayer that Michael prayed a few days ago...that we might not just have energy, but that we might have extra, abundant energy. This gig is tough. Hospital life is tough. Parenting in hospitals is tough. This is a marathon that I want to run well, not just survive. I need a lot, a lot, a lot of extra supernatural energy and patience.

My prayer for Piper is that she might know her papa's and my love without question. And with that love and affirmation that we might still have good and firm boundaries that she can depend on. And that she might not get sick being in this germy hospital all of time.

And for Watts, sweet warrior boy-- that he might continue to thrive and develop, even here in the hospital. That the side effects will be absolutely non-existent after the chemo is done. That he will know his papa and mama's love even in the midst of the blue gowns and needles and eye drops.

And a small thing, but I am praying that we will be out by Thanksgiving. That would just be icing on the cake.

Thank you to all of you who have prayed and are praying for us. It means so much.

[Just to doubly clarify, there is really no way to know if the leukemia is all the way gone and no way to shorten treatment. I am just praying that it will be. Watts will be in treatment for two more years, just a more outpatient, less-intense version.]

Day 2.

Hard to believe that we actually made it to our "long stay," as we've been calling it! Watts finished his second dose of HD ARA-C and is tolerating it okay. He is currently running a fever of 101.1 which is very common while this type of chemo is running. As long as he doesn't have a fever 24 hours after chemo finishes, apparently they aren't concerned about it. They are running blood cultures, though, just to make sure there isn't a blood stream infection is going on. He is acting pretty lethargic with the fever but we've still gotten some smiles out of him this morning. He is also nauseated and nursing very little, which is also common. Two doses down, two more to go!

 Masked up for blood cultures to be drawn.

Cuddly boy during blood cultures.

Last night we had a "sleepover" and all slept here in the room to kick-off our long stay. We ate Olive Garden (they deliver to Peds. Heme/Onc patients once a month!), walked Watts in the wagon up and down the halls, watched Wonder Pets, ate Halloween candy, and all went to bed at 8:45pm. Michael, Watts, and I were up a lot with diaper changes, chemo, eye drops, and vitals, but Piper slept through it all. One more night of chemo, then things will get a lot quieter.

Thanks for the prayers and well-wishes. We are thankful.

Awesome sunset last night.

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Here's the lowdown for those interested on what is happening chemo-wise:

Watts is getting four doses of High Dose ARA-C every 12 hours, running over 3 hours. Three hours after the HD ARA-C is finished, he will get one shot of PEG-L-asparaginase. Watts is also getting eye drops every 6 hours until 48hrs after chemo is done. These are to protect his eyes from the HD ARA-C. Twenty-four hours after his chemo finishes tomorrow, they will start the daily neupogen shots to help his WBC to recover. Other than that, we will simply be hanging out here for the remainder of the time. In order to get discharged, we need to see his counts bottom out and then recover.

Although Watts' counts usually bottom out post-chemo, there is a greater risk for high fever post-chemo with the HD ARA-C, hence the need to be admitted until his counts recover. They want to be able to start antibiotics within the hour of the first sign of high fever. THIS DOES NOT APPLY TO THE FEVER HE CURRENTLY HAS....ONLY POST-CHEMO FEVERS.

Day 1

Thought I posted this last night but it didnt post...

Going to bed now (it's going to be a broken night of chemo, diaper changes, and eye drops), but Watts did great today! He was all smiles today and enjoyed wagon rides this evening through the halls.  Amazing boy.

Tomorrow.

Well, it looks like tomorrow is the big day! Watts "made counts" on Monday morning, came off neupogen for 48 hours, had a repeat CBC this morning, and his ANC and platelets are still good. Tomorrow morning Watts and I will get there first thing to admit and start this much anticipated round.

We are excited, nervous, and so ready to get this 21 day stay behind us. Oh, and thankful too... if we go the full 21 days, we should still be out the day before Thanksgiving. There is a possibility that we could get out sooner but we are not thinking about that AT ALL but instead prepping for the full 3 weeks.

Watts is fantastic. He is a crawling maniac, eating a little bit of solid food, and is basically all over the place. Earlier today he fell into the tub because he was lunging after a toy. I think that if we weren't about to hit him with another round of high dose chemo, he would be walking very soon.

Thanks for the prayers. Keep 'em coming.

Counts and Abiding.

Watts' ANC has shot up to 3000 thanks to the neupogen shots. His platelets and hemoglobin levels have dropped back down to borderline transfusion range, however, so we'll go tomorrow to check them again. In order to start the HD Ara-C round, Watts needs to have an ANC of 500 (or higher) and platelets of 50 (or higher). He also has to be off of neupogen shots for 48 hours prior to chemo. In order to stop neupogen shots, he has to have an ANC of 1500 for two separate CBCs.

Tomorrow, most likely, his ANC will be even higher and we will have to think about discontinuing neupogen. I personally do not want to stop neupogen shots too early, especially if it takes several days for his platelets to recover, but that is not what the protocal specifies. It would be great to not have to do another week of neupogen, money-wise (the cheap neupogen week was a fluke and we're back to $300/week. Ugh.), but that is a small matter.

So, we'll see... We would LOVE to admit this week and maybe, possibly, get out before Thanksgiving (if his counts recover really fast), but, ultimately, we want to start when his little body is ready.

More of the familiar waiting game.

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This past week has been a hard one for me emotionally. I detest isolation and don't know how to parent a 15 month old with cancer or a 3 year old whose brother has cancer. Yeah, hard stuff. Temper tantrums or chemo side effects? Who knows. Disobedience or a cry for attention because the whole world revolves around the cancer patient? Hard to tell. Sleep training? Haha! Add on top of that the fact that they are typical kiddos and fight and kick each other in the face sometimes (literally unfortunately), and this mothering gig is just hard.

I think I also go through waves and seasons of just needing to grieve. To be sad. To cry out that I don't want to go the hospital for 21 days and that I hate cancer. I hate the side effects and the blood tests. I hate not knowing what the future holds.

Sigh. 

This morning, despite a sleepless night with Watts, I feel the cloud has lifted some. As another leukemia mama put it (thanks, Mandy), I need to do this "one day at a time." I can make it through today. Next month, I'm not sure, but today I can do. I have also been thinking about how faithful the Lord has been to us; even back in the darkest PICU days, He was holding us up. It is deeply, deeply comforting to think about His nearness to us in the past as I think about the future. Lord, abide with me.

Abide with me; fast falls the eventide;
The darkness deepens; Lord with me abide.
When other helpers fail and comforts flee,
Help of the helpless, O abide with me.

Swift to its close ebbs out life’s little day;
Earth’s joys grow dim; its glories pass away;
Change and decay in all around I see;
O Thou who changest not, abide with me.

Thou on my head in early youth didst smile;
And, though rebellious and perverse meanwhile,
Thou hast not left me, oft as I left Thee,
On to the close, O Lord, abide with me.

I need Thy presence every passing hour.
What but Thy grace can foil the tempter’s power?
Who, like Thyself, my guide and stay can be?
Through cloud and sunshine, Lord, abide with me.

I fear no foe, with Thee at hand to bless;
Ills have no weight, and tears no bitterness.
Where is death’s sting? Where, grave, thy victory?
I triumph still, if Thou abide with me.

Hold Thou Thy cross before my closing eyes;
Shine through the gloom and point me to the skies.
Heaven’s morning breaks, and earth’s vain shadows flee;
In life, in death, O Lord, abide with me.