Thursday, September 26, 2013

Week 9

Two weeks left till our first break. After the experience we had over the weekend, I was a little nervous going into this week. Plus, I was going at it solo because Ryan was going to work. First drawback: rush hour traffic and not taking the HOV lanes. The ride in took twice as long. Too bad there isn't a slug line closer to us.  (For those non-DC readers, Slugging is a commuting solution to rush hour traffic where you can pick up other riders who are going in. You can ride HOV and they get a ride in.  Everybody wins! Pretty much hitchhiking for business men/women)

Port access went surprisingly well.  You can really tell the difference between the people who access ports all day long in the clinic and those who do it on occasion in the ER. It wasn't the best access, but it was far from the worst. 

Everything else was pretty standard. Neuro tests showed the same weakness on one side, but it hasn't progressed, so that's good. One new concern this week is that Logan in losing weight. He has lost 2 lbs since starting chemo. It may not seem like a lot, but for his already skinny body, it's a troublesome amount. If he continues to lose weight, his body is not going to tolerate his treatment. The reason for the loss?  Logan has not been eating or drinking nearly as well as he has in the past. A common side effect of chemo. If the weight does not improve next week, the doctor is going to get a nutritionist involved. So, for the next week, we are pushing high calorie foods and drinks.  Basically the diet I wish I could eat.  We'll start with Logan's favorite post-chemo lunch, meatball sandwich.

High calorie enough?  Thanks Uncle Mike!

Sunday, September 22, 2013

ER night #2

So much for an easy second night. ER was far more crowded and we were less of a priority for night 2.  I wish that were the least of our problems.

The calm before the storm
As I said, on our first in the ER they decided to leave Logan's port accessed so that he didn't have to go through a traumatic access again. Around 2:00 this afternoon, Ryan noticed that Logan's access looked crooked, like it had bent or moved or something. I called the on-call number to see if it was something to be concerned about and she stated as long as it wasn't hurting him or leaking, they could deal with it when he came in at night. We moved on with the day and heading out to the hospital around 7:00. 

Once there, we had a relatively short wait and, expecting a short and pain-free visit, got back to a room. BTW, temperature at this point was downgraded to low-grade.   Met with some of the doctors and nurses and got the rundown for the night. I made sure to let them all know that something had happened to his access and that it was likely out of place.  The plan was to see if it was still working and, if necessary unaccess and reaccessed him.  

Here is where things got difficult. The nurse first attempted to draw blood for his labs from his access.  For those who don't know how this works, they attach an empty syringe to the end of the line and pull out the plunger to pull the blood out of the body. When his tried to pull the blood, nothing came out. Sometimes ports and get plugged or clotted if the blood starts to coagulate. Thinking this, the nurse continued to pull at the access with no luck.  The next trick is to push some saline through to try to unblock the line.  This is where things get ugly.  The nurse pushed a syringe of saline hoping to unblock the line, only to be meet with shrill screams from Logan.  It was clear something was wrong with the access.  An additional nurse was called and they tried to change positions.  They continued to pull at the line, hoping to draw the blood.  They started to move the access around hoping to reposition it without having to unaccess him completely, all the while Logan kicking and screaming.  Finally, they gave up and it was time to unaccess and start from scratch.  When the bandage was removed, the access practically fell off, meaning it had been dislodged the whole time.  All the the fluid that had been push, was pushed, not into his veins, but into his skin. All the moving and turning of the access, was digging a needle further into his flesh.  

Once the old access was out, we still had to get a new access in.  One more big needle stick and the new access was in. Problem solved right?  Almost.  With the new access in, it was time to get the blood draw.  As the nurse pulled on the line, still no blood came out.  A couple more minutes of trying and it was time to try the saline push again.  One big push of saline and FINALLY the line was clear! One hour of poking, prodding, crying, screaming. One hour of being pinned down while nurses hurt him. One hour of torture for a 3 year old.  And we still weren't anywhere near ready to go home. A few more minor glitches with the IV pump malfunctioning, and we were on to getting the antibiotic and waiting for the blood levels.  

Logan's attitude at this point was less then stellar. Rightfully so.  The next hour was a non-stop string of tantrums, whining and crying.  As justified as it was, it did not make it any easier to deal with. Labs came back ok and we were cleared to leave. One more moment of torture while we unaccessed him for the second time in one night. It was finally time to go home.  So far today, we have dealt with an endless sting of tantrums and screaming.  After a morning long battle, Logan got some of the extra sleep he desperately needed.  Fingers crossed for a relatively tantrum-free afternoon. 

Saturday, September 21, 2013

Fever Protocol

I knew it was going to happen sooner or later, but I was hoping for much later.  We experienced our first fever emergency protocol.  While at a friend's house for a group playdate/dinner, Logan was acting particularly cranky and began to feel warm.  I took his temperature (101.2) and called the on-call oncologist as we have been instructed to do.  She told us that we would have to come in for antibiotics and a check of his blood count.  If the counts indicated so, he would have to be admitted to the hospital.  The dilemma we face living in approximately an hour away from our children's hospital: do we drive the hour to their ER, or go to our local ER about a mile away.  The doctor let me know that their protocol states, if we can get there within the hour, go there, if not, go local. Without spending too much time debating this, even though we are right on the edge and you never know with DC traffic, we opted for going there.  We suppose it would just be easier to deal with this where they already know us, especially for our first time.  Maybe next time we'll stay local. I left Ryan and Parker at the playdate, and headed off to the ER.

On the plus side, they take fever in chemo kids very seriously.  They knew we were coming so when we got there, we got vitals (Temp 100.5) and we got right back into a room.  No waiting.  I could get used to that! What I will never get used to, them making Logan wear a mask.  He DOES NOT LIKE wearing masks (and that's a significant understatement.) As soon as we were back in the room, it was time to get his port accessed for blood draws and to administer fluids and antibiotics.  For those of you that watched the port access video, that was a day at Willy Wonka's chocolate factory compared to this access. Even our first port access was not this bad.  While I didn't get video of this one, for obvious reasons, let me set the stage for you.  Two nurses, mommy and a child-life specialist armed with her bag of tricks.  Kicking, screaming, crying, flailing and a port that did not want to be accessed.  While the nurse was able to get through the skin with no problem, he could not get into the port.  After what felt like forever, he was in, but now he could get not the blood to flow.  A little more adjusting of the line and a lot more screaming and we were finally situated.  Blood was sent for counts and fluids started.

Thermometer and "tubie"
Once the access from hell was over, Logan was quite easy going.  Watched some TV, colored some pictures brought by one of the great family concierges, and even took some good naps (remember, this is all taking place 8PM-Midnight).  He was getting more lethargic and hotter as the night went on (102.5) so it was time for the Tylenol.  Three hours after arriving, we were cleared to go home.  Blood counts were not low enough to indicate infection so we did not have to be admitted.  What we will have to do is return the same time the next day for the same treatment.  He will get his blood counts checked again and a second dose of antibiotics.  Thankfully, they opted to leave his port access in so we do not have to go through another access. 

Why such a reaction for such a low fever?  We have always been very easy going about fevers and illness.  We rarely take our kids to the doctors (aside from Logan's NF related appointments).  We have seen fevers as high as 104 and managed them at home without a second thought of going to the doctor.  For Logan, that lax approach is no longer an option.  We have been instructed time after time, if he get a temperature that hits 100, we have to go the ER immediately.  When the doctor tells you to go to the ER, you don't argue.  Being on chemotherapy means Logan's blood is not able to fight off an infection that may have been introduced and even the mildest infection can become life threatening rather quickly. 

At least our return visit tonight will be easier, as we will not have to struggle through another access and we will be prepared this time with entertainment. Even better news, this silly fever seems to be gone.  Not looking forward to doing this EVERY TIME he gets a fever, especially with cold and flu season rapidly approaching.

Thursday, September 19, 2013

Week 8

Nothing really new to report in week eight. Still watching the feet and the poop. Fun right? No news is good news, especially with everything else that is going on in our lives this week. I'll take status quo.  Logan was extra cranky today but we can attribute that to being extra tired. He was passed out within minutes of getting into the infusion pod.

Ever wonder what a port access looks like?  This video is pretty standard for our accesses.

I am so thankful that Logan is handling his treatment as well as he is. We got a glimpse today of how bad it could be. While in the waiting room, a young boy (maybe 12 years old) came in with his dad. He came in throwing up and barely able to walk. I never got to see the fear and pain on his face because he was under a blanket the entire time, but the pain in his voice and his cries was painful enough. This young boy sat crying and begging his dad to take him home. "I can't do it. I want to go back. I need a break. I can't do it!!" All the father could do was to offer a comforting hug and assure him, "You can do this.  We have to do this."  When his name was called, the agony only multiplied. He had to be carried, screaming in terror. I can't begin to imagine the pain and fear that this young man is facing or the battle that he is fighting. My heart breaks for him and all the other children living in such a terrifying and painful world.

Thursday, September 12, 2013

Week 7

Nothing too exciting to report.  Back on Carboplatin and Vincristine for 4 more weeks till Logan's next MRI.  Logan did fairly well today, aside from the fact that he was REALLY cranky.  He has not been sleeping well so everything seems to be a major drama production.  Blood results were off here and there.  Some levels were low (WBC, RBC, Hemoglobin, etc.) and some were high (bilirubin, MCH, MCHC, etc)  What that all really means, I have no idea.  I know they are monitoring his blood counts and liver function and the basics behind that.  They were comfortable moving forward with treatment, so I'm not too concerned.  Orders from the doctors, continue with stretches for his heel cord tightening and start giving some stronger intervention for the constipation.  Miralax here we come.

Today's waiting room treat, professional photography from the Flashes of Hope organization.  Another great charity organization devoted to making these kids lives just a little brighter.  Professional photographers come out to children's hospitals all over the country to take pictures of children and their families to "capture those smiles and forever preserve images of courage, beauty and dignity."  You can read more about this organization here.  Logan was a ham, as usual, so I'm excited to see what pictures they were able to take.

Now that we are at 7 weeks, we have gotten the routine down. Like I've said before.  Routines are our friends. For those that are curious what goes on at these "routine" appointments here is a walk-through of our typical chemo day at the hospital (Times are approximate according to the most time efficient sessions):

8:00 - Arrive at hospital, apply numbing cream and have breakfast in the cafeteria.  
8:30 - Arrive at clinic and check in.  Preliminary screening to sign off that Logan has not showed signs of fever, cough, runny nose, chicken pox, rashes, vaccinations in the previous days.
9:00 - Called back by intake nurse for Vital checks (Blood pressure, oxygen stats, temperature, height, weight, head circumference.)
9:20 - Lab for port access and blood draws.  Blood sent for counts.
9:30 - Meet with Doctors for neuro exams.  Each one of the three doctors (sometimes 4 or 5 depending on who has colleagues in the lab that day)  perform an assessment consisting of testing strength in the extremities, coordination, visual tracking, peripheral vision, etc.  We discuss any concerns from the previous week and plans moving forward.
10:15 - To the art therapy room to play and wait for the blood counts and chemo to be ready.
10:45 - Doctors pop in art room to let us know the counts and that the chemo has been ordered.  They have to wait for the count approval before even ordering the chemo from the pharmacy as it is fairly common for a child to have to an issue and not be allowed treatment for the week.  That would be a really expensive waste.
11:00- To the pod to start prepping and infusing.  Line is prepped and flushed.  Anti-nausea medication is given so they can give it time to kick in.
11:30- Vincristine pushed and Carboplatin infusion started.
12:45 - Final flushes, port de-access and time to go home for lunch and a nice long nap!

Efficiency and order varies from session to session, but generally we spend 4-7 hours there (yeah - 7 hours - that day sucked) and are seen by around 7-10 different nurses and doctors. 

Much needed infusion nap!

Thursday, September 5, 2013

Week 6

Another week of one medicine. We spoke with the doctor about the weakness of his right foot and the compounding effect in his intestines (i.e. constipation, but I have been banned from talking about poop). Logan continues to show some decrease in strength on one side but they still felt OK proceeding with his treatment this week. We will continue to monitor his feet and start pushing some stronger stuff for the constipation. Prunes just aren't cutting it anymore.

Overall, Logan has come a long way from  his first appointment. He no longer fusses about getting a "big hug" (i.e. blood pressure) and he can manage most of his day without mommy's help. The only steps that still evoke the need for mommy intervention are wearing the mask for port access and getting the "big band-aid" off during the de-access.  Go figure, my kid doesn't even flinch at the inch long, 20 gauge needle puncturing his flesh every week, but wearing a Mickey Mouse mask for 30 seconds, he has a problem with.  

BP, O2 and temp.  A Triple Threat
Helping with his "tubie"
Helping to get his vitals

Today's wonderful treat at the clinic has a heartbreaking story.  All the kids coming through the clinic today were given a big coloring book and rather large goodie bag filled with candy (enough to keep him revved for about a week), cookies, crayons and bubbles. I was unsure of where these treats came from until another parent told me the story.  A little girl getting treatment lost her battle with cancer and every year on her birthday and one other time during the year, her parents bring treats for all the kids in the chemo clinic.  Truly heart breaking to think of the little ones that don't make it through this battle and the families that have to deal with this loss. 

There are so many kids fighting a much more difficult battle than Logan and all I want to do is cry for them. These kids, these babies fighting harder than most people will ever have to, just to live. To live a life that they have yet to even experience. One such story is that of little Leni Hsiao. A friend from high school recently began his 4-month-old daughter on an intensive treatment in her battle with a rare form of pediatric bone marrow cancer. You can read about her story here. My heart goes out to little Leni and the whole Hsiao family. 

I just ask "what if it were MY child?" I would move the earth save my child. People are always asking what they can do for us or how they can help Logan. Consider what you can do for these other fighters. Visit your local children's hospital and ask about volunteering your time, money or toys.  Find a charity organization and ask what you can do to help. Consider registering at to make a donation that may save a life. There are so many ways to help, you just have to do it!

Weekly post-chemo lunch

Tuesday, September 3, 2013

Week 5

Sorry for the delay.  Ryan and I have been feeling under the weather for the last couple of days so not much has been done outside the absolute necessary. I certainly miss the days when you could stay in bed all day when you were sick.

Exam with 2 of this week's approx. 10 doctors/nurses
Week 5 was as expected.  Short and easy.  Don't get me wrong.  We still spent 2 hours with the doctors, but that's nothing compared to the 4-7 hours we have been doing weekly.  The reason for this speedy session was that Logan was only receiving one of the two chemo drugs.  We did not have to wait for the blood counts to return from the lab, as this medicine would not depress his counts any lower, and we did not have to wait for the hour long infusion or anti-nausea push before starting.  Aside from those very minor, but time saving steps, the routine was basically the same.

A couple notable differences:  1.  This was the first week we did a session with one parent.  Up until now, both Ryan and I have attended all Logan's appointments, as our schedules have been flexible enough to allow it.  This week, we anticipated a quick and easy visit so we decided Ryan could go to work and I could manage on my own.  Manage I did. 2.  During the doctors' neurological exam, they noticed some possible deficits in Logan's right foot.  As I've stated before, nerve damage is a common side effect from this drug and it typically effects the hands and feet first.  They will be monitoring this closely as they may need to reduce or eliminate this drug from this treatment. This side effect, unlike most of the others, has the possibility to be long term or permanent.  

This treatment marks the half-way point of his "induction" period.  In 5 more weeks, Logan will have his next MRI to determine what effect, if any, the treatment is having. In other news, since Logan has done so well with the side-effects, we have decided to start him back to "school" next week.  He has missed his friends a ton and, after seeing many of the parents at a school function last week, I know he has been missed as well. Fingers-crossed he does not come home sick, although with the start of flu season right around the corner and him not being able to get the flu shot, I'm sure there is a strong likelihood of some sick days in our future.