Cancer is Wood

This entry is part 8 of 10 in the series "Liam's Battle" --

Fred and I met in the fall of 1995 at Southwest Texas University (now Texas State University). I was a 17 year old freshman and he was a senior. We met at the first chemistry club meeting. He told me I had cold hands (he asked to shake my hand after I was elected secretary of the new club), and I later told my roommate that I had met a really nice guy but he was way too old for me. A Friday night group movie night (planned by Fred just to have a way to ask me out without asking me out on a one on one date), a Saturday night group outing to listen to music and dance at Nephews (I walked down to the square in San Marcos to check to make sure I could actually get into the venue), and a Sunday morning “date” to attend church and Sunday school together, and I was smitten.

A year and a half later, we had been already been engaged to be married for 7 months and the plan was to wed when I graduated (scheduled for May 1998…I was on the “I took a bunch of AP classes in high school and am willing to work through the summers to complete this degree” program); however, Fred and I wanted to move the wedding up and start our happily ever after. My parents wanted me to finish school. So, Fred and I flew out to northern Virginia for Spring Break to discuss the possible change in plans.

My parents were preparing to put their house on the market. (My dad had been reassigned to Fort Sill, OK.) Unlike the previous trip that Fred had taken to visit my parents, the tenor of this visit did not involve sight seeing or national monument visitation. This trip involved a lot of work…together.

We stacked firewood. And my dad watched our interaction. The temperatures fell. And then dropped below freezing. And dad asked (told) us to power wash the large wooden deck. This was a task that neither Fred nor I had ever done before-alone or together, in good weather or bad. But we tackled it together and managed to enjoy a rather miserable time together. We took turns, we encouraged one another, we laughed, we borrowed a joke from the sitcom “Boy Meets World” that we still use, “This is the opposite of fun. This is wood.” And my dad watched.

At the end of Fred’s trip, my parents had a clean deck, we had the memory of a lifetime, and my dad gave his blessing for us to move our wedding to August of 1997…even though I wasn’t done with school, my sister was getting ready to finish high school/start college, and they were selling their home and moving halfway across the U.S.

What I didn’t fully appreciate at the time, but am starting to appreciate more fully after 17 years of marriage, is that character is revealed as well as developed during times of conflict. My dad had already figured that out and was resourceful in using tasks that needed to be accomplished to see how Fred and I would work together in challenging times.

Our first year of marriage was a borderline disaster, but we endured the conflict that arises when one person has a schedule crammed too full of graduation requirements and the other is waiting for said person to graduate. We endured all of the frustrations that go along with learning to share a life (and small apartment) with someone else. We endured the transition to graduate school and my realization that I didn’t want a Ph.D. because I knew I would feel compelled to use it in a job outside of the home once I had earned it. We endured 5 years of a commuting marriage when I took a job at Portland Community College, while Fred finished his degree in Eugene. (I had an apartment in Portland and lived there during the week and came “home” to Fred on the weekends.)

We endured the stillbirth of our first child, a daughter who we had named, talked to, hoped for, and love deeply. We have endured the wonder, blessing, sleeplessness, and general nuttiness that parenting 4 kids can entail. We endured a chemical pregnancy and a miscarriage.

We have walked an interesting journey together and we continue to grow together as two become one flesh, a head and a body learning to serve each other as we respect, love, and cherbish (we both mispronounced “cherish” in our wedding vows) each other (Ephesians 5).

We celebrated our 17th wedding anniversary by indoor skydiving, a surprise my sweet husband knew I would love. We laughed and made memories as we experienced the wonder of being supported by a force we could not see, but could definitely feel. We cheered for each other as we learned how to relax into the wind. We compared sore muscles after our brief flights.

And on August 17, 2014, the day after our 17th wedding anniversary, our sweet two-year-old Liam was diagnosed with Neuroblastoma. It is a horrible disease and the treatment for it seems cruel and unusual in many ways. Honestly, at first I felt like we were in free fall. But as we continue to endure and walk this journey together, I have come to realize that just like when we were skydiving indoors, we are being supported by an invisible force. We can’t see it, but we can definitely feel it. This is an opportunity for our character to be revealed and shaped. It is an opportunity for us to grow together as a couple as well as for our family to be unified.

Just like power washing the deck in freezing temperatures, we are in a situation that neither Fred nor I have experienced before, we are tackling it together, and managing to enjoy a rather miserable time.

Our audience has grown. We are blessed to have our family here to help.  My dad has a front row seat to this adventure as the long term substitute in our homeschool this year.  My mom is wearing many hats as she shuttles kids, cooks, cleans, runs errands, etc.  My sister and brother-in-law (and their girls) are walking along side of us, watching, supporting, teaching. And our children are watching how we handle this situation, growing, and learning some character lessons early in life.  We are enjoying an extended family support system orchestrated by a God who listened to our prayers to relocate to Texas for six years before allowing us to move to within 2 miles of my parents and sister to a job that was a perfect fit for Fred’s skill set and personality type. We have been blessed and humbled with an army of people praying for us and our son, people providing meals, people sending care packages and encouragement, people showing us God’s love.

Cancer is the opposite of fun. Cancer is wood. And yet, it is fueling a refining fire. We are not the people or parents that we were before our son was diagnosed. We are still imperfect, flawed, and human; however, we are calling on the name of the Lord and we testify that He is our God (Zechariah 13:9). He is faithful and just to cleanse us of all unrighteousness (1 John 1:9). And He promises to use all things for the good of those who love Him…so that we can be conformed to the likeness of his Son (Romans 8:28-29). May our faith be proved genuine and result in praise, glory, and honor for Jesus Christ (1 Peter 1:7).

A Stressful Time Back at Home After Round 1

This entry is part 7 of 10 in the series "Liam's Battle" --
A bucket full of Liam's medications

A bucket full of Liam’s medications

The day my son was released from the hospital after his first round of chemo (a 5 day round that with complications led to 22 days in hospital), I came home to find my wife frantically working on Excel with the hustle and bustle of a full house exploding around her. There was a lot going on, but it was clear that what she was doing was important. The kids, who had not seen her in a long time, were siphoned off into another room every time they would show up to hang out with her.

Medicine Delivery Schedule

The Medicine Matrix

What was she doing that was so pressing? She was making a matrix of all of the medications that needed to be administered to Liam.

I found this odd. How many medications had been sent home with him?  Quite a few. When it was broken down on how many doses he is getting a day there are thirty-one.  Thirty-one different things to keep track of. Twenty-nine syringe cleanings. Thirty-one administrations by mouth with differing volume amounts.

As I watched Jenn frantically come to terms with the reality of this situation, i.e. that there were no nurses to administer and keep track of all of the medications that Liam needs, I had the stark revelation that many parents out there must not be able to keep all of this straight.  All that the discharge paperwork said was which medications he was on, the doses per day, and when the last dose was given.

This seems like a poor system.  We have figured it out, but perhaps there is a better way than, “Here you go. Good luck!”

Our experience at Children’s Medical Center has been very positive.  The medical professionals (doctors, nurses, technicians, social worker, child life specialist, music therapists, physical therapists, kitchen staff, janitorial staff, volunteers, etc., etc.) have all been wonderful.  They all created a very safe bubble for Jenn and Liam; however, I think that the transition from the hospital to home has been a little more like the bubble popping than staying in the bubble and floating home on the breeze.

It is good for the two of them to be back home. It has been a wonderful time for me to regain some of the sanity that I had lost, and I enjoy interacting with Liam all of the chances I can get.  When he is home, I get more time with him.

The bubble with all of its iridescent protection returns next Wednesday 21Sept2014 when chemo round 2 starts.

Stem Cells, A Weakened Immune System, and a Dirty House

This entry is part 6 of 10 in the series "Liam's Battle" --
"GCSF Crystal Structure.rsh" by Ramin Herati

“G-CSF Crystal Structure” by Ramin Herati

Liam was allowed to come home for a week before he has to go back in to the hospital for round 2 chemo. Exciting, yes; however, I am forced to look at my home in a different manner.  I have never had to worry about a weakened immune system before.

A typical motto in our house has been, “A few germs will build your immune system.” — You people out there with small kids know what I mean.

A few germs, however,  can be deadly to a little guy that has an impaired immune system.  It is true that after this first round of chemo, his white blood cells are coming back.  But after every successive round of chemo, his immune system will get hammered to the point that it will be close to death (if not dead). So much so, that after the next round of chemo (round 2), they will harvest stem cells from his bone marrow so that they can use them later to reboot his immune system.

The process is pretty neat. They will actually administer a drug (Granulocyte colony-stimulating factor G-CSF) that stimulates the bone marrow to push stem cells out into the peripheral blood.

The collection is performed through a process known as “apheresis.” Blood is drawn and passed into a machine that spins the blood to remove certain stem cells (those identified as “CD34+”), and then the blood is returned to the child. [1]

After the cells have been collected, they will be used during the consolidation phase to give a boost or jump start to the bone marrow.  The autologous (meaning he is his own donor) stem cell transplant will occur under a very strict, positive pressure, wing on the oncology floor.

Having the ability for forward vision, however, only makes me more concerned about what I can do today. While Liam’s immune system is not completely compromised yet, the house as well as the lifestyle of three siblings and a dog have me a bit on edge. What needs to change so that Liam is protected? How do we make it through this time in our life when it seems impossible to keep out external germs while he is at home?

So, the immediate family and myself have spent the day attempting to prepare for Liam’s return to home, albeit for a short while.  We have vacuumed, mopped the floor, washed all of the sheets, removed all that can potentially have germs.  Still, my vision leads me to despair. I know how tiny these bacteria are. I know how my kids will interact with one another.

This problem is beyond me. So, I must keep the cub scout motto in my mind, “Do your best!”  It is all I can do, nothing more.

30Aug2014 – A Pretty Good Day

This entry is part 5 of 10 in the series "Liam's Battle" --

A pretty good day for Liam.

A pretty good day for Liam.

Liam is finally starting to act like himself. I can use a couple more days like this! He was playing and carrying on conversations with us for most of the day. While he was still in a lot of pain when he was moved (understandably), when he was being still, this is what he looked like. He hasn’t acted this coherent in weeks!

The pleural effusion appears to have been causing a considerable amount of pain.  I was told by the nursing staff that the teenagers that require a chest tube find it fairly uncomfortable. Since Liam is only two, it is difficult for him to describe his discomfort to us; however, if this is how he is acting with a chest tube in, I am guessing that the pleural effusion must have been very discomforting.

A few more good days like this will be real progress.  We need his strength to be up for Round 2 Chemo starting on Sept 10, 2014.

Pleural Effusion. Headed in the Right Direction?

This entry is part 4 of 10 in the series "Liam's Battle" --
Pleural Effusion

Pleural Effusion

So, those that have been following along this week know we have seemed to go downhill rather than up. Round One of Chemo was finished 24Aug2014. While the chemo seemed to be a non-event, these other complications have kept occurring one right after the other.

On Tuesday, he developed a rash for no real good reason. Initially, we thought that this might be due to one of the blood transfusions; however when the rash came back even stronger the following day after one of his medications, it strongly pointed to a possible allergic reaction to the drug. My understanding is that this is a preventative medication that is given during the chemo process to avoid a certain type of pneumonia developing while the immune system is weakened. It is a type of sulfa drug. I personally have had strong reactions to sulfa-drugs in the past, and while I am assured that the allergy to sulfa drugs is not genetically linked, sulfa drugs do often have strong allergic responses in people. So, while the rash is still dissipating, this is the strongest lead we have to go on. The medication has been switched to a different one, so we will see as time progresses forward.

Of biggest concern this week was when they were trying to wean him off of his requirement for [concentrated] oxygen, and they couldn’t. An X-ray showed us that he had developed a pleural effusion in his left lung. Initially, the fluid on ultrasound appeared to not be bloody (They would be able to see clotting). They decided that they would drain the fluid with a needle to see what it was.  Right before the procedure (or maybe it was during), an ultrasound this time showed that there was clotting. And sure enough, when they sucked the fluid out, it was bloody. Where was this fluid coming from? A CT was performed so that they could see the chemo port that was installed to determine whether the port site was bleeding or leaking into the space.  The CT showed that the port seemed OK.  This left us with a wait-and-see approach to the problem.  The only good explanation was that since he had been low on platelets, maybe he had spontaneously ruptured in the pleural space. They would wait until the next morning to see if the cavity had filled back up. If it had, they would do emergency exploratory surgery to:

  1. Find the source of the fluid
  2. Install a drain tube into the pleural space
  3. Possibly remove the port, just as a precuation

The next morning, 28Aug2014, an x-ray was performed.  The plerual effusion was back just as large as it had been the day before. Liam was headed for surgery as soon as it could be scheduled.

A little after 12PM, Liam was wheeled into surgery.  The surgery took about 90 minutes. They removed his port, just in case they missed something in the CT. They installed a drain tube into the pleural space, and they looked around for the leak with a camera.

They did not find one.

They sent the fluid for analysis to see if it contained Neuroblastoma, which we do not have the results for; however, whether or not it is there may not tell us much.

So what is going on?  Nobody knows!  But here is the best hypothesis that I heard in the debrief:

If the Neuroblastoma had made it into the pleural area, and the chemo had killed it, it is possible that the fluid and blood could be a response to the now dead Neurblastoma cells.  That would mean that the chemo is having an affect on the cancer and this whole plerual effusion business is a consequence of healing. Only time will tell.

This morning, 29Aug2014, an x-ray showed us that the pleural area is being drained effectively with the chest tube.  Now we wait for the body to heal the pleural area like it would heal a bruise anywhere else on the body.


Damaged Veins and the Worst IV Ever

This entry is part 3 of 10 in the series "Liam's Battle" --

[This post mentions blood and needles. Do not read if you are squeamish.]

On 17Aug2014 after it was determined that Liam had cancer, I was trying to put all of the pieces together. Jenn was working to get herself up to the hospital. I was in the ER room with Liam, staring at a word on a napkin. The word ‘Neuroblastoma’ written in a quick but legible way was a word I had never heard of, but at this point it had at least two reasons to despise it:

  1. I knew it was cancer.
  2. I was told not to freak out when I looked it up.

Some people do not like to know what they are dealing with, but I am not one of these people.  I reached for my iPhone, and I started to Google it.  Right then, the nurse walked in and announced that they needed to start an IV.  Another nurse followed behind her.

“OK.” I said.

The nurse grabbed several pieces of equipment from an OmniCell which looked like a vending machine, but had all of the different types of equipment needed for the various procedures that can be performed in that little room.  She grabbed several items out of each bin making sure to push a button located on the front of each bin. Each time a button was pressed, a little green light came on for the individual bin.  “Clever,” I thought, “That is a neat way of keeping and managing the inventory.”  Then I thought about how much each item would cost as it eventually showed itself on a bill from the hospital labeled ‘Services Rendered’.  After some quick thinking, I came to the conclusion that it really didn’t matter.  These were the things that were needed at that moment, and I was glad they were available.  The nurse closed the door to the OmniCell, pushed a master button in the middle that told it she was done, and laid out the various pieces needed to start the IV on the bed.  All of the pieces seemed necessary for the insertion of an IV.

The nurse announced that she would be giving Liam a topical anesthetic before the IV was started that should help with the placing the IV. It sort of reminded me of an epi-pen, but it was much smaller in size. The topical made a mark on his skin on the top of his hand. He cried, but I knew it would feel better than the alternative.  The nurse grabbed the needle and started going after the vein.  As with most things to do with a needle, I looked away. In this case, I looked at Liam’s face. As I watched his contorted face from the painful needle being manipulated under his skin in such a way to find the vein, it was apparent that the topical did not seem to be working very well.

The IV went in, and then it was time to flush it.  Which involves pushing fluid back up the IV line.

“It blew.”  She said.


“The vein fell apart.” She said “We’ll have to try again on the other side, but this time I don’t think we’ll be able to use the topical.  His veins are weakened from his low platelet count, and they are just falling apart. An additional puncture could cause the vein to blow again.”

I remember when I was a kid I had to have an IV put in without anesthetic.  It was a pain that was like no other. Unlike giving blood, which is usually done in the crease of your arm where there are much fewer nerves, IVs usually go in your hand so that if they blow out, they can march up the arm and grab another part of the vein. If they started at the top of your arm and it blew out, there would not be any more good tries on that arm.

The nurse returned from the OmniCell with more equipment, and proceeded to try the other hand, this time with no topical anesthetic.

I remember thinking as I watched his face, “Crap, I guess the topical was doing something last time.”

“I think we got it… Almost there…  Nope, it blew again.” She said with disdain.

I looked down to see the two large bruises forming on each of his hands.

“We have a special team that I am going to call to put in his IV line that deals with special cases like this. I am going to call them down so that he doesn’t have to endure being poked all day.”

And within 15 minutes or so, a team showed up with an ultrasound machine with a probe head much smaller than I had been used to seeing during all of the pregnancies that we have been through. It was clear that the smaller head was for looking at veins and not babies.  I smiled for just a moment as I remembered the last time that an ultrasound had been used on Liam. He was just a baby bump on his mama.

I watched as this special team put in another IV. This time it was further up the arm. It blew.

The fourth attempt made it in, and it seemed to be holding for now. But by the time he had made it upstairs, and before a transfusion could be made along with platelets, that IV had blown too. It was clear that his veins were in pretty bad shape, but the paradox was that he couldn’t get very things that he needed for them to start healing without this line in place.

A fifth attempt was made. It held for a while, but it also blew. By this time, my wife was already there, and we were upstairs in our new room.  And I have to admit that even though I am not typically squeamish around needles, the drama and screaming from Liam had pushed me to the point of nausea. I couldn’t stay for this one.  I let Jenn take it on. It held for a few hours and into the evening, but failed as the ordered blood made it to the room. The hanging bag of blood sat there unused. It sat there too long. The first bag had to be thrown out.

The order was then placed for a central line to be installed.  Which, as it turns out, enters through the upper arm and enters one of the vein in the central [core] body– apparently close to the heart. The nurse said that the order had been placed for the morning because of the lateness of the hour, and yet a moment later, the PIC team showed up to put in the central line.  The nurse said, “The order said it was to be placed in the morning?” Which was a statement that had been inflected to act as a question.

The man puffed up his chest with the look of a hero.  He said,”Well, I’m here now. Let’s get this thing installed.”


This entry is part 1 of 10 in the series "Liam's Battle" --

On Sunday 17 Aug 2014, Liam was diagnosed with Neuroblastoma.  This was after a month of fussiness that could not be explained.

Six weeks prior to this diagnoses, we had a normal, almost 2 year old.  When he started being fussy, we figured that he was sick, but nothing that a kid his age might be expected to get. He was fussy in the middle of the night, and this really caught us off-guard. He has always been such an easy going kid — He was sleeping through the night at 12 weeks. So what was going on?

We started noticing that their were bulges in his testicular sack. Hernia!  He must be  fussy because of an inguinal hernia. Knowing how painful that can be from my own personal experience, we got him to his PCP as soon as possible. She agreed that we should see a surgeon.  I immediately scheduled a consultation at Children’s Medical Center in Dallas, and we were seen in short order. Once seen, the doctor agreed, and we had him in for surgery the very next day.

Once inside to repair the hernia, the surgeon found no real evidence of an inguinal hernia. We were told that what we must have been seeing were large veins in the testicular sac. We accepted this, but really did not question from that point that the fussiness could be something else.

The three days following the operation, Liam was doing pretty well. He had had a local anesthetic which helped numb any pain from the surgery.  We thought we had whatever this was beat… Then the fussiness started again. After about a day of this, we called a nurse. A likely culprit: constipation.  So, we loaded the kid up with miralax for several days until the Poo ran clear. Still fussy.  A couple more days later, I called a nurse again. The thought  at that time was that that maybe he wasn’t eating, and that was causing his bowels to not be working correctly. Give more Tylenol and Motrin — ease his comfort from the surgery so that he can eat.

He seemed better while well stocked on the pain meds, but I kept thinking to myself, “This seems like a lot of pain medicine for just a hernia operation”

Around his birthday, he developed a black eye. Those bigger siblings of his must have been playing rough with him. So of course, a scolding was in order on the etiquette of being gentle with their baby brother.

As the next week rolled by. More bruising developed on his legs, and his color was turning pale. He looked normal to me, but he was turning paler by the day so slightly I wasn’t noticing.

The fussiness continued throughout the day and throughout the night.

It wasn’t until Liam had a chance to spend the night with relatives while Jenn and I went away for an evening to celebrate our anniversary that the grandparents had the chance to notice that something was off and the bruising didn’t seem right to them.  When they returned him to us, they voiced their concerns. I watched Liam as we fed the kids pizza that night. He ate a couple of bites and his belly became super distended. It was already looking pretty large. “Maybe there is something going on that is unrelated to the surgery,”  I thought.  Right then and there I decided that I would take him to the ER. Jenn had been working with him at this point and had dosed him again with pain meds. He fell asleep pretty soon after.

“Well, if he wakes up in the night I will take him then,” I thought. I want him to get his rest.

Sure enough at about 3:55AM, he stirred us awake. I loaded him up in the car and drove to Children’s Medical Center in downtown Dallas.  I had been thinking all night that he must have a blockage in his bowel. It was time for an X-ray. Let’s shine some light through this problem.

There was no one in line at the ER at Children’s at about 4:45 when I got there.  I was seen pretty fast. Imaging was occurring faster than at any other time I have ever been to the ER.

About an hour and a half later a doctor came in my room and announced that they had found a mass above the kidney.

In that moment, I felt relieved. There had been a reason that my calm and peaceful boy had been so fussy.

In the next moment, the name of the cancer that it was most likely to be (because of how it was presenting) was announced to me: neuroblastoma. I had never heard of it. Which is probably why I did not freak out like they were expecting me to.

So after they left the room, I googled it. This is what I found: Less than 50% survival rate when in the high risk category.

I called Jenn, “They found a mass on his right adrenal gland atop his kidney.  You need to get up here.”