Half birthday, little rascal, and update.

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

Other birthday celebrations:

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

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

Watts' 1 1/2 birthday. 

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

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

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

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

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

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

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

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

"We strain to hear..."

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

-----------------------------------------------------


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

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


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

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

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

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

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

Low counts.

After having his ANC (absolute neutrophil count) hover around 3400 the last 4-5 weeks, yesterday we were surprised when it came back as 422. A drastic drop in a matter of a week, but nothing unusual for infants on 6mp (chemo drug). In fact, although I hate that he is now considered severely neutropenic and susceptible to a lot of possible infections (during flu season no less!), it is good to see that his WBC (white blood count) is being impacted by the chemo drug. If his WBC is getting hit hard, then hopefully so is any possible leukemia cells. We will just hunker down a bit more, mask up more frequently, and wash our hands more obsessively.

So, because his ANC is so low, we will be taking a week off of all treatment to give his bone marrow a chance to recover. No clinic, no IV MTX, no at-home chemo. It'll be the first week not going to Brenner in almost 8 months! We will recheck counts next Wednesday and restart back on treatment on Thursday if his ANC is higher than 500. 

In other news, Watts' hair is growing back. I surprisingly miss his bald head but also love the soft fuzz that is coming in all over. This hair will most likely fall out again during the next inpatient stay but who knows! The doctors and nurses joke that Watts must have great hair follicles, as evidenced by him holding onto his hair for so many months of intense treatment, so he might just hang on to it.

Hard to believe that this was his head about 7 months ago... just when we noticed him losing a little bit.

And now...

 

Okay, so maybe it is hard to see, but it is coming in... mostly blond with a few really dark patches.

If you think of Watts, please pray that he stays infection and virus-free, 

as well as the rest of us. Thank you!

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.

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!

More of the same...

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

More details...

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

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

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

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

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

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

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

Today I am thankful for:

 

My husband, who is a rock star.  

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

My resilient, hilarious, precious 3 year old.

Presents for Piper from the nurses and the RMH staff.

Watts’ strength.

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

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

Gas cards from sweet friends and family..

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

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

Unexpected hospital stay

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

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.

Round 2, day 3

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

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

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

It is a long, hard road.  

Second round, day 1

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

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

Day 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.

Waiting on numbers...

We're still doing well in Room 913. 

We're done with chemo for this phase (!) and simply waiting for the ANC to go up so we can go home. It could be tomorrow, it could be Monday, but it'll hopefully be soon.

We are so, so ready.

We'll be home for about a week before we'll come back to start the next phase.

-----------------------------------------------------------------------------------------------------------------

We bought a king size mattress on Craigslist (thanks for picking it up, Dad!) in preparation of co-sleeping with Watts. He has been needing us to sleep in his crib with him here in the hospital so having a king-size mattress will seem so luxurious. We just have to figure out how to fit it in our little house.

-----------------------------------------------------------------------------------------------------------------

We have a house showing tomorrow at 1pm. Hopefully she falls in love with our place and buys it immediately!

Tuesday morning

 

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

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

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

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

------------------------------------------------------------------------------------------------------------------

 

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

-------------------------------------------------------------------------------------------------------------------

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

-------------------------------------------------------------------------------------------------------------------

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

Monday update

Watts is "getting better" every day. The infection is making its way from his little body and the drug withdrawal symptoms are diminishing. More and more he seems like our son, our little guy who disappeared with the high fever and low blood counts and days and days of sedation.

We are loving having him back!

He's laughing, smiling, eating some table food, and clawing our faces just like the good ole days. He has even started pulling up on the side of his crib. His legs are weak, but he is determined and has some mad upper body strength.

I feel like we are finally reaching the point where we are dealing with the cancer primarily (and the chemo side effects, etc.) instead of having almost all of our attention focused on the infection and the drug withdrawal stuff. And, so far, chemo hasn't been that bad side-effects-wise...or maybe it just doesn't seem that bad given what we've come through. He's had some throwing up, diarrhea, irritability, and some sleepless nights (like last night, ugh), but overall he seems to take those in stride.

Here's evidence...

More chemo today, as usual, but numbers are still holding strong so no blood transfusion.

Phase One of Treatment: Induction

We had a good morning today. Watts seems to be returning to his usual self as the methadone is weaned from his system. He is smiling more, playing a bit, and has started to put things in his mouth (toys, food, water). It's encouraging.

The following is info about our treatment plans for Watts, if anyone is interested in what the next couple of years are going to look like for him (and us).

There is a standard treatment plan for Watts' type of leukemia (infant acute lymphoblastic leukemia or ALL), which pretty much maps out the next 104 weeks of therapy. There is the possibility that he will have extended treatment, because boys tend to respond less favorably to chemo than girls, but we don't know that for sure right now.

Treatment for Watts' ALL is separated into six "phases" or "blocks".

Phase 1: Induction Therapy (weeks 1-5)

Phase 2:Induction intensification (weeks 6-9)

Phase 3: Re-Induction (weeks 10-12)

Phase 4: Consolidation (weeks 13-19)

Phase 5: Continuation I (weeks 20-41)

Phase 6: Continuation II (weeks 42-104)
 
Phase 1 is scheduled to last 5 weeks, or until the leukemia is in remission. Watts began the Induction Phase on May 30th, so he's already on day 16. The goal is to kill all the leukemia cells in the blood and bone marrow. This puts the leukemia into remission.

Our specific prayer item right now (in terms of treatment) is to see a 0-count when Watts' blood is tested for leukemia cells on or around July 3. So, remission on July 3rd (also our 9th wedding anniversary!).


This is the crazy chart that specifies exactly what drugs and how much he gets during Induction:

Similar to treatment of many other cancers, Watts is receiving chemotherapy treatment. Again, from the National Cancer Institute website:

Chemotherapy is a cancer treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. When chemotherapy is taken by mouth or injected into a vein or muscle, the drugs enter the bloodstream, and can reach cancer cells throughout the body (systemic chemotherapy).

This is how Watts is currently receiving treatment.
_______

Last week we learned more about Watts' specific subgroup of ALL and his assignment to a "risk group". Some info from Wake Forest University Health Sciences:

Infants with ALL can be classified into 1 of 3 risk groups. The term "risk" refers to the chance of the cancer coming back during or after treatment. The assignment of risk is basde on the infant's age at diagnosis and the genetics of the leukemia cells. The genetics of infant ALL can be classified as either "MLL-G" or "MLL-R"... about 75% of infants are found to be MLL-R and have a higher risk of the cancer coming back than those infants that are MLL-G.

High Risk classification is for infants younger than 90 days, so Watts would fall into either Standard Risk or Intermediate Risk. This depends on the genetic testing and whether the results come back as "MLL-G" or "MLL-R". Those tests were taken immediately after diagnosis and Watts' tests came back as "MLL-G", putting him in the Standard Risk group. Obviously we were very relieved and thankful.

As we move into the different phases of treatment, we'll do a post detailing the plan. As always, thank you for the support, prayers, notes, gifts, emails, texts, phone calls...

Watts laughed today!

The title pretty much says it all. It was pretty great to hear a giggle after almost 3 weeks. Still looking forward to getting back to THIS.

Wednesday morning update

It feels like we've turned a corner with the drug withdrawal stuff. Watts has been less inconsolable and even content to rest on our chest for periods of time. AND, we haven't used morphine since Monday night. Wohoo!

He has even let me snuggle with him a bit which is a huge blessing to this mama's heart.

 

Although still groggy and weak, I propped him up yesterday with some pillows and he stayed upright for a little while before toppling over. The OT and PT seemed pleased with his progress. The heme/onc team just met with us and said that his hemoglobin levels have climbed so there isn't a need for a blood transfusion today. His platelet levels have also climbed. White blood count is holding steady. They tell us to expect drops in the numbers as this next round of steroids begins (collateral damage as the leukemia cells are killed).

Tomorrow he goes in for a lumbar puncture and starts some new chemo meds.

Monday update

We are in the throes of chemo this week and still dealing with drug withdrawal from the fentanyl. We have an eight day plan to reduce the methadone and ativan, but had to put it on hold today because yesterday he was still exhibiting a lot of withdrawal symptoms. It is confusing to distinguish what are withdrawal symptoms, what are chemo side effects, and what is just a bored, exhausted little boy who is tired of being poked and prodded. When he gets really agitated, we get to ask for morphine, but are (obviously) reluctant to over medicate him.

He sleeps a lot. We long for and dread him waking up. After he wakes, we usually have a few minutes of him being calm before he starts acting agitated and is difficult to console. The doctors told us that some of the meds he is on can make him crave touch and other meds can make the skin super sensitive, so it's a delicate balance we're striving for of knowing when to hold him and when to just lay beside him, without touching.

Positives:
He grabbed a cracker and tried to eat it.
We haven't used morphine since last night.
Dr Russell is awesome.

Tough stuff:
Drug withdrawal.
Still not nursing.
Agitated when awake.

---------

But you, O Lord, are a shield about me, my glory, and the lifter of my head.

I cried aloud to the Lord, and he answered me from his holy hill.

I lay down and slept; I woke again, for the Lord sustained me.

Psalm 3:3-5

---------