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.

 

Harris Logistics

(I have moved this item to the *top menu* so that it will be easy to find. I will continue to update it as we build our network of helpers/ need categories.)


 

I know that many of you have asked how you can help out our family in this very overloaded and confusing time for us.  (In many things we are not totally sure how we can be helped yet!)

I did want to pass along contact information fop those wanting to help with food.


  •  Food / Meal Coordination for Harris Household (To avoid duplication, or multiple meals arriving at the same time)
    • Contact: Eyde Buxbaum  –  buxbaumedye@gmail.com
    • Anyone can participate- Eyde has the details (and she is extremely nice to work with)

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.

“Blew?”

“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.”

A Mass. A Tumor. Cancer. Metastasis.

This entry is part 2 of 10 in the series "Liam's Battle" --

In the early hours of 17 Aug 2014, moments after I had the news in hand that there was an unwelcome mass in my son that had been the cause for all of his distress, the social worker came in. My immediate thought was, “Oh great! I get to endure the questioning that comes with all of the bruising and the black eye that my son has.”  I braced myself for the line of questioning that should accompany any child that shows up at a hospital with a black eye and bruising on his body, the apparent knowledge of the mass inside my son still rattling around the inside of my brain not really certain on which brain cell it should land.

I started to formulate a preemptive strike against the social worker.  I knew that I had no idea how the bruising got there; but how could I encase this in language that would allow her to believe that I had really not done it?

I started to speak, but then I decided not to.  Instead I stood there frozen while she came in and introduced herself.

“Do you have any questions for me?” She asked.

“Like what?” I asked, now on about my fifth iteration of my almost believable yet true story.

“Well, sometimes parents need to talk after a diagnosis of cancer is revealed, and we just want to make sure that you are OK.”  She said.

‘Cancer.’ This word started rattling around with the word ‘mass’. They really didn’t register quite yet. Cancer. The only childhood cancer that I could think of at this point was Leukemia. I didn’t know much about it, but it seemed that the odds of survival were pretty good for it. Of course, I had no data to support that claim, but I believed myself anyway.

“No, I think I’m OK.” I told her. I felt fairly relieved that I had not been asked to explain the bruising.

“OK, well, if you need to talk, just have the nurse page me.”

“Sure.”  I said having felt the victory of dodging the bruising question.

It wasn’t long after the social worker came in that I was meeting with the oncologist Dr. Tanya Watt. As I would come to find out later that day, she is the doctor at Children’s Medical Center that specializes in Nuerobalstoma.  I was assured that I was in the best hands possible.

“Right now, it is important to stabilize Liam. It’s likely that he has Neuroblastoma, based on where the cancer is in his body. It has likely spread to his bone marrow and started to compromise his blood production…” She said.

Wait, did she say ‘Spread’? I thought we were talking about a mass on the adrenal gland?  Wait! Spreading is bad!

The words: Tumor.  Mass.  Cancer.  Bone Marrow.  Spread. They all congealed in a place in my brain that controls the pit in the bottom of my stomach.  The fight or flight response now activated, I thought (and possibly said out loud), “Ohhhhh Crap.  Crap. Crap Crap Crap Crap Crap!” –Why had I been so foolish and not brought him in sooner? Had I really missed all of the signs leading us to this point?

The oncologist said,   “I want you to realize that you did the right thing by bringing him in. I realize that in the first twenty-four hours of a diagnoses like this, all the parent hears is ‘Cancer’, but I want you to realize that this is not your fault. You did not do anything to cause this.” She said with certainty. “I’ll be managing your case, so I’ll come talk to you once you are upstairs on the oncology floor.  Do you have any questions for me right now?”

“Yeah.” I remember stammering. “What type of cancer did you say this was likely to be?”

“Neuroblastoma. N-e-u-r….  Here let me write it down for you.”  She pulled a napkin from the counter and wrote it down. “I know that you are going to look this up, but try not to freak yourself out before we have a chance to talk,” she said. And with that, she left the ER patient room.

“We need to start an IV.” A nurse said entering the room.

“Sure.” I said. Picking up the phone to call Jenn. Synapses were starting to fire. I knew I needed my wife here with me.

22Aug2014

Today has been a much better day than yesterday. Even though we have been moved into the ICU, he has calmed down significantly. Thanks to some wonderful medication, he was finally able to stool and help relieve severe belly distension. Afterwards, he was able to relax and sleep. He hasn’t slept restfully in days. So, this is wonderful news.

Tonight he will start his 3rd day of chemo (out of 5) for this round. So far, so good; however, there is a long row to hoe.

Immediate prayer requests:
1. Continue to stabilize
2. That the need for supplemental Oxygen will decrease.
3. That the need for pain medication will decrease.
4. Healing for his belly will increase, esp. after such severe distension
5. That the chemo will continue to kill the NB

Diagnosis

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.”