After the first treatment

Logan has done remarkably well on his new chemo.  Aside from a couple of "close calls" during his infusion, he has not really shown any effects of the chemo.  If anything, Thursday night and Friday,  he was hyper active.  He is a very active child and his attention is something that has been in overdrive from day one.  I didn't think it was possible to be any MORE hyper active, especially on chemo, but somehow he managed it.  He was nonstop for a good 24 hours afterwards.  Also, his appetite is clearly back.  It's good to see the "old Logan" back but it is proving to be a challenge keeping food coming as quickly as he is eating it.  When he gets a meal or a snack, he is already asking for the next one before he is done eating the first.

Friday night he started with a low grade fever, which peaked at 100.5, but he was able to sleep it off and there was no need for the ER, which was good because we didn't have car.  We were planning on going up to visit family on Saturday, but I just didn't feel comfortable leaving home with the potential for the fever to come back, so Logan and I stayed home while Ryan and Parker ventured out for the rest of the weekend.  Logan managed ok the rest of the weekend with low grade fever around 99.6.  He was extra cranky and battled sleep, but otherwise, an uneventful weekend.  I'll take it.

The sleep thing is starting to be an issue and it's something that we are going to have to work out before it becomes a real problem.  Logan is falling into an undesirable pattern of sleeping.  He gets up super early, sometime multiple times a night (between 2AM-6AM) and fights going back to sleep.  Come nap time after lunch, he barely naps, usually 30-45 minutes.  All attempts to make him nap longer are met with tantrums and screaming.  No he's not tired at all!  By 4PM he is exhausted and falling asleep no matter what he was doing. He can't even function. I never know where/when/how I'm going to find him asleep. This lack of sleep is definitely showing in his behavior. He is so quick to meltdown with crying, screaming, tantrums.  We're going to have to figure out how to get the right naps and sleep.  I would love for him to nap more during the day, but not at the cost of him sleeping at night.  Hard to tell what's right. And I'm sure it's not all related to the chemo, but partially (if not all the way) related to him being 3.

Today, Parker had to go for his annual check with the pediatrician.  I'm pretty sure this is the first time in a year that Parker has been to the doctor, and last year did not go well.  A year ago, he was hysterical over just having to take off his shirt.  He has grown a ton in the past year.  He did a GREAT job at the doctor and everything came out "perfect".  It came time for the flu vaccine, and because Logan is on chemo, it was recommended that Parker not get the nasal mist vaccine and instead get the shot.  Sorry Parker.  He took it like a man, but afterwards milked it for all it's worth.  You would have thought it was a gun shot and not a flu shot, the way he is acting. I know it is a traumatic thing for a kid (and some adults.... you know who you are) and it's not right to say it, but deep down part of me thinks, "It could be so much worse, if only you knew what your brother goes through every week."  Instead, I praise him about how well he did and how strong and brave he was.  It was difficult for him and that's all that matters. 

Chemo take two.

Today was the first day of the new treatment for Logan.  Unsure of how things would pan out, we started bright and early.  Arrive at the hospital at 7:45 AM.  When we arrived at the clinic this morning, we received the Flashes of Hope pictures that were taken last month. They were absolutely beautiful and a great way to look back at Logan's strength during this difficult process. Seeing them, was a nice way to start off the day.

Things ran pretty much the same as before.  Got all his vitals checked, port accessed, met with doctors, blood drawn.  The first new addition was collecting a urine sample, something that we will have to do every appointment now.  There was a little hesitation to pee in the cup, but nothing a couple extra drinks and a bribe with fruit snacks didn't fix.  I'm pretty sure there isn't anything a 3 year old won't do for some fruit snacks. After we turned in Logan's urine, it was time for some quality time in the art room.

Another great program that we were introduced to today was the "Beads of Courage".  This is a new program to our clinic where the kids earn beads for the struggles and battles that they overcome. Every week, Logan will earn beads color coded to the procedures or milestones he has had. Different color beads are given for things like surgery, trips to the ER, infusions, MRIs, etc.  Special milestone beads are given for things like "Acts of courage", special accomplishments or completion of treatment.  This string of beads is a way for him to look back and re-tell his story of courage.  Another amazing program. Who comes up with this stuff?!? You can read more about it at www.beadsofcourage.org.

Once his blood came back ok, we were ready to head to the pod for infusion. Logan got hooked up to his pump and the pre-meds started.  Here is the second new step.  Logan will continue to get Zofran (anti-nausea meds), but now he will also get a dose of Benadryl before each treatment. I can't really complain about this, because Logan was passed out within minutes.  He couldn't even stay awake enough to chew his sandwich.  While he slept, they were able to get his first med going, Avastin, which took 90 minutes to push, followed by a 30 minutes saline push.  Logan slept though most of that (thanks to the Benadryl I'm sure).  Finally, it was another 90 minute push of Irinotecan, which Logan sat quietly playing on the iPad for.  A couple more quick flushes and a de-access and we were ready to go home.  Total infusion time today = 4 hours.  Total time at hospital today = 8 hours.  It was a long day.

Overall, Logan did incredible.  He was patient, quiet and peaceful.  Couldn't have gone better.  So far, he is doing well.  During the infusion, he was monitored for reactions including getting his blood pressure taken throughout.  In the last 30 minutes of infusion, he started to get a little sick and we had a couple of "close calls" but so far, he is keeping everything down.  Hoping this continues.  For now, its on to taking it easy and getting some rest.  We'll keep our eyes on him closely for the next few days and make sure he manages.  A hopeful start.

Happy Birthday Parker!

Tomorrow, Logan will start on his new treatment, but today has nothing to do with that.  Despite the name of this blog, today has nothing to do with NF or chemo.  Today is Parker's birthday!!!  In the midst of all the doctor's appointment, medications and trips to the ER, it would be easy to forget one important thing, Parker. One of my fears in the beginning of this journey, was how would Parker feel during this time.  With so much attention on Logan and his needs, would Parker feel abandoned? Would we be able to give Parker the attention that he deserved?  I swore I would do everything I could to make sure that Parker never felt any less loved or cared for.  Today is his day!

Five years ago, our lives changed forever.  We went from being a couple, to being a family.  Our first son, Parker Stuart Christie, was born October 23rd (two weeks before his due date) at a whooping 9lbs 10oz.  Could you imagine him with another 2 weeks to grow?!?  I don't even want to think about it.  If you had asked me, as a first time mother, what it was like having and caring for a baby, I would have told you it was a piece of cake (aside from the 22 hours of labor and c-section)!  Parker was the sweetest, happiest, most easy going baby you could have asked for.  He was every mother's dream! He ate, he slept, he pooped.  What else is there for a baby to do?

Day 1

As the years have moved on, the dream has not changed and neither has Parker.  Don't get me wrong, it's not always rainbows and butterfly.  He has given us his fair share of tantrums, drama and heart attack inducing moments.  Some less than favorable highlights include falling and biting a hole in his tongue before his first birthday, getting lost at a carnival at age 2 (unfortunately, not really his fault) and most recently, getting in trouble at school for telling his friend to get his "a$$ up off the floor".  Despite whatever bad times we have, Parker is a compassionate and loving person.  He loves to give hugs and kisses (maybe a little too much when he gets busted at age 3 "tongue kissing" his favorite little lady at school.  They said they were just pretending to be doggies and I really want to believe them!)  He goes out of his way to tell me that he loves me.  He wants nothing more than to be a "helper" whether it's cleaning up the dishes, folding the laundry or helping with the errands. He is polite and kind (most of the time).  He loves to make others happy and serve others.  He wants to care for things, be it plants, animals or babies. He wants to teach and show others how to be better.  He is an incredible son, brother, friend and person.

Funny Faces

I could not be more proud of him and all he has become in the last 5 years.  My greatest fear when I became a parent was not whether or not they would be smart, funny, talented or successful.  Sure I want all those things for my children, but what I REALLY wanted for my children was for them to be good people.  I wanted them to be all the things that Parker is becoming. He is learning and growing and becoming the person that any parent could be proud of.  I'm excited to continue to watch him grow and to see where he goes in life and what he chooses to become. 

1st Birthday

2nd Birthday

3rd Birthday

4th Birthday

5th Birthday

FINALLY a break!

Finally a week off.  Even though Logan was due a TWO week break from chemo last week, this is actually the first week since June that we have not had medical appointments, emergency room visits or otherwise bad news delivered to us.  What a relief it has been.  Since July 1st Logan has had 2 MRIs, 1 minor surgery, 6 trips to the emergency room, 10 weeks of chemo, 6 appointments with specialists (separate from the 10 clinic/chemo days).  I almost forgot what it was like to live without medical complications. 

This week I have been able to catch up on some work hours that I've missed due to Logan's emergencies, have a RELATIVELY clean house, start a fun Halloween project with Parker, schedule Parker's 5 year doctor's appointment and birthday party and generally just take a break.  Logan has enjoyed the break as well.  We are seeing glimpses of the "old Logan" return as his appetite is picking up and he is complaining about how hungry he is.  This has been a great opportunity to fatten him up before starting up with his new treatment next week. 

As nice as this break has been, I know it is only a few days from being over.  I know that, in a few days, not only will we be back on chemo, but we'll be starting a new treatment that comes with new uncertainty.  After 10 weeks on chemo we knew what to expect.  We knew when he would be nauseous, tired, cranky, etc.  We are starting from scratch and having to learn all over again.  While we have had a nice break in our schedule, there is no break from the worrying, thinking, planning, praying. For now, it's time to enjoy the last few days of calm. 

Possible complication?

After finding out that the doctors want to change Logan's chemo drugs because there are new tumors growing, I did what any mother would do.  I turned to Google.  Sometimes I feel like I should earn an honorary doctorate for the amount of learning and research I am doing.  This week's research has included brain function in the new areas of concern (I studied neuro-anatomy in college and grad school but I hardly remember it all), tumors in these areas (and their effect) and the new drugs they want him to take.  In my research, I found some very interesting and possibly troubling information.

According to pretty much every medical source, Irinetocan (one of the new proposed drugs) can cause very negative effects in patients with Gilbert's syndrome.  The drug interaction in these patients basically causes the body to absorb the medicine at a different rate causing worsening of side effects and at times harmful toxicity.  This drug is not advised for patients with Gilbert's.

So what is Gilbert's syndrome and why does this matter? Gilbert's is a relatively benign condition that causes the body to produce more than usual levels of bilirubin.  The only real effect of this condition is the person may become jaundice, particularly when over exerted, stressed, hungry, etc.  Other than that, Gilbert's is completely harmless.  Until you read the fine print. This is the section that I always skip over because it was never relevant.  One of the ONLY times Gilbert's is a problem, is when the person is taking certain drugs.  Which drug do you think every source names as it's arch nemesis?  Irinetocan, of course.    

Why do I care about this?  Logan has not been diagnosed with Gilbert's.  Why would he be?  This isn't something that doctor's go looking for.  Most times, this is a diagnosis that you just happen upon when in the process of other things.  I should know, it happened to me.  And my dad.  And my mom. And possibly my siblings as well.  During routine blood work, the doctors see the abnormal ratios and let you know, "hey, by the way, you have Gilbert's syndrome."  No biggie.  The likelihood of Logan also having Gilbert's is high.

I don't know what this means for his new course of treatment, but of course the first thing I have done is let his doctor's know of the family history of this possible complication.  We will wait to see what they want to do and of course discuss this issue at length prior to even considering starting this new treatment. It may amount to nothing, but I would never forgive myself if Logan suffered more because I didn't take the time to do what was right.

This is just one more time where, as a parent, it is my job to be my child's strongest advocate.  No one knows a child more than their parent, and it is our job to go that extra mile to look out for them.  Do a little extra research, follow your gut. 

The results

Anyone else tired of hearing about this sh*t?  I know I am. First of all, Logan has been doing great now that he is on antibiotics.  His fever is gone and hopefully this will last.  Today was the day that we found out not only how Logan's vision is holding up, but how his MRI looks and if the chemo is working.

First we met the the neuro- ophthalmologist to check his vision.  Nothing really exciting to report.  He tested with 20/20 vision which is GREAT. The only notable things were the eye lid drooping (worse when he is tired) and his pupils being asymmetrical.   Cleared for another 3 months.

Next we met with the neurologists.  This appointment was a little further from ideal.  In reviewing the MRI, we learned that the tumors in the hypothalamus and optic nerve have shrunk a little but the tumors in the brain stem have apparently doubled in size.  Too new areas of concern are the midbrain and pons. The neurologists were very concerned with this change.  Not only is any growth at this point a negative thing, but it also indicates that the improvement seen in the other tumors will likely be short lived.  Areas impacted by these tumors would be nerves and muscle control of the face and limbs.  It could interfere with walking, talking, swallowing, vision, hearing, etc.  Since we have already been seeing some impact (eye drooping), the doctors feel that this tumor is the new priority and that it is time to change course.

Droopy eye

We will be starting a treatment protocol that will consist of a more powerful drug.  This protocol will be slightly different in both how it is administered and the effect on Logan.  Some of the differences:  We will be trading our "4 week on, 2 week off" schedule for an "every other week" schedule with no "breaks".  Infusion time will be slightly longer, especially in the first 2 weeks.  Our previous infusion time was an hour + misc. pushes.  New protocol infusion time will be (cycle 1) 2.5 hours +, (cycle 2) 2 hours +, all remaining cycles 1.5 hours +.  We will be trading constipation for diarrhea, and adding problems with bleeding to the list of side effects. In addition, Logan's urine will be checked weekly as kidney and liver function may be effected.

While this is obviously not what we wanted to hear, at least there is a plan and hopefully it's a good one.  We will find out in time.

Showing off his cool mask

  

Here we go again.

After a frustrating night in the local ER and not wanting to go back to the children's ER, I start Tuesday by emailing our doctors to see if we could get his second dose of antibiotic a little early so that we could go to the clinic. They agreed and told us to come in around 2. Wonderful. I left work at noon so I could go home and get Logan and get back into the city by 2.  This fever trip was exactly what I would want. In the clinic, with people that Logan knows, and who know him.  People who know EXACTLY what to do because it is the only thing they do all day.  Best part of this trip was that, not only did Logan wear his mask willingly, he actually put it on himself without being told. It was amazing!  

While we were at the clinic, our doctors found us to review his MRI results from Monday. The good news is that the tumors in the hypothalamus and optic nerve appear to have shrunk a bit. The bad news, a new tumor, that was first evident on the previous MRI in his brainstem, has grown.  This introduces the complicated dilemma of, do we change treatment to find a drug that will be effective on all the tumors, or do we continue with one that seems to be working on at least some of them? This decision is further complicated by the fact that he already appears to be effected by the new brain stem tumor. In the past few days we have noticed Logan's right eye lid drooping. After letting his doctors know, they indicated that this is a definite sign that the tumor is effecting him. 

We don't yet have all the pieces of the puzzle. Thursday, we will see the neuro-ophthalmologist to see what his vision is doing and immediately followed by another neurologist who will give us more definitive information about what the next steps will be. 

For now, we have to figure out the silliness with this ridiculous fever. After getting our 2nd dose of antibiotic and leaving the clinic with a low grade temp,  we arrived home Tuesday evening with a fever of 104.  In addition to the fever, Logan was now coughing.  We gave some Tylenol which helped a bit, but still with a decent fever and now cough, I called, yet again, to see what we should do. Long story short, we were back in the ER for the 4th time in 36 hours. 

During this visit, Logan got his blood checked (low but not dangerous), IV fluids, and another X-ray which finally indicated pneumonia. At midnight, after 4 hours in the ER, they told me that they wanted to admit him to treat the pneumonia.  A short while later, they reconsidered and thought maybe they wouldn't admit him. While they worked to figure out what ever the hell they wanted to do, Logan got 2 additional antibiotics. Long story short (is it too late for that?) by 3AM we were on our way home with our new arsinal of antibiotics to treat at home. 

After another day home to rest and drug up, Logan seems to be doing much better. Fever is in check and hopefully the antibiotics are doing what they need to do to wipe out the pneumonia.  Hoping we can get some promising information from his doctors tomorrow.

MRI and Fever #2

The moment of truth has arrived. Time for Logan's first MRI since starting chemo. This is where we will learn if the chemo is working and what the plan is moving forward.

Crazy eyes

This MRI was pretty standard compared to all the others. Out of the house at 5:30am to get to the hospital. Most people would probably cringe at being out of the house with a 3 year old so early, but considering he can't eat or drink anything, the earlier we can get it over with the better. We arrive at the neuro-ophthalmologist at 6:15 for eye drops to dilate his pupils. Whenever Logan gets an MRI, he get a retinal scan as well. This is part of a study that his neuro-ophthalmologist is doing to find more efficient and less invasive ways to monitor optic nerve tumors. We are happy to help the development of diagnosis/treatment in whatever way we can. 

By 6:30 we are checked in to radiology and on with the vitals and safety checklists. Really no different than any other MRI, other than to report that Logan is on chemo and has a Portacath implanted. 

Up until this point, Logan is his usual charming and energetic self. (I even got compliments when the MRI follow-up call came the next morning, about how they were all saying how pleasant and wonderful he was.) As with all other MRIs, this is when the crank starts to kick in as he is tired and thirsty.  Just in time to be put under.  In the past, Logan runs into the sedation room happily greeting all the doctors.  He is definitely getting wise to the terror of going under. One look at the sedation room and Logan took off screaming in the other direction. There's no fooling him any more. Thankfully, it's only a few short moments before he has a gas mask on and he drifts away. As many times as we do this (this was his 5th MRI), it is never easier to hold your screaming baby while he drifts to unconsciousness. The look in his eyes is enough to break anyone's heart. I will never be able to erase this look from my memory. From there they put in an IV and fully sedate him and get the scans started. From this point it is about an hour wait.

Everything was pretty standard.  Nothing exciting to report.  Waited for an hour, then joined him in recovery, where he slept for about another 30 minutes.  Once he was up, he had his juice and popsicle and we headed home. We should be getting a follow up call next day with the results. Once home it was time for a nap, lunch and another nap. Or so we thought.

After lunch, Ryan noticed Logan started to feel warm.  He took his temperature and sure enough Logan had a low grade fever.  As instructed, we called the clinic.  We were told if it hits 101 or is low grade for at least an hour, to go ahead and take him in.  Since this was happening in the afternoon, I got very excited about the possibility of taking him to the clinic instead of the ER but my bubble was quickly burst when the nurse told me that they stop taking sick patients at the clinic at 3:00PM.  It was already 2:00PM, not going to make.  We monitored his temp for the next 30 minutes, and sure enough, 101.7.  He headed to the local ER (about a mile from our house). 

We checked in at 3:00PM.  There was a lot of discussion about what they wanted to do and I kept telling them that they needed to call Logan's oncologist and follow their protocol.  This I expected, since we did not go to an ER directly associated with Logan's treating doctors.  What I didn't expect was the seemingly complete lack of knowledge of the process on their part.  In fairness to them, they are not a children's unit and probably don't deal with this on a regular basis.  By around 6:00PM, Logan's fever was up to 103.3 (which they wouldn't have known if I didn't ask them to retake his temperature, as they hadn't checked it since 3:00PM when we got there) and he was just getting some Tylenol to combat the fever and getting accessed. This access, was better than the last ER port access in that I had the time to put Logan's numbing cream on and it was far let traumatic on him.  On the other hand, they were clearly reading the directions of the port access as they went and they didn't adhere the to same strict precautions that I am used to seeing at Children's.   By 6:30, he was getting antibiotic. A process that I'm told is time sensitive, took more than 3.5 hours to accomplish. 

Fever baby

In addition, to the blood checks, and antibiotic, they took a chest x-ray to rule out pneumonia, a urine sample and strep test.  While I'm sure it's great they were trying to find a cause of the fever, I'm pretty sure this was just a way to rack up more charges.  Everything came back clear with the exception of the blood counts.  His counts were pretty low (as would be expected) but thankfully not low enough to require him to be admitted to the hospital.

All in all, in one day Logan spent 9 hours in 2 different hospitals and will go back for round two within 24 hours.  All of this during his first "break" from chemo.  We will definitely be taking him back to the children's hospital for round 2. 

Week 10!!

The last few weeks have been a bit of a whirlwind. Work has gotten ridiculously busy, our cat died, my dad had a stroke, our first fever protocol, Logan started rapidly losing weight and now the government has shut down!  I’m pretty sure things need to start looking up and I think October would be a great time for that to happen.  Especially since this week marks the end of Logan’s “induction period”.  He has finished 10 weeks of chemotherapy and is coming out of it stronger than ever.  

Frequent meal time meltdowns

When the doctors told us last week that we needed to make a high calorie diet a high priority, I thought it would be a piece of cake.  What kid wouldn’t want to eat ice cream, milkshakes, pizza, etc. all day every day?  My kid – that’s who.  Not only was Logan battling the nausea and lack of appetite associated with chemotherapy, I’m pretty sure he had a stomach bug on top of it.  From Thursday through Sunday (particularly in the middle of the night – who needs sleep?), Logan spent a good amount of time in the bathroom and let’s just say constipation was no longer an issue.  Refusing to eat even his favorite foods, and frequent bathroom visits meant that Logan lost 1.5 more pounds.  He was now down 10% of his body weight in a very short amount of time.  In the days since, his appetite has seemed to improve and it is not as much of a battle to get him to eat, although frequent reminders are still used.  The weight is slowly coming back and hopefully it will stay this time. The doctors were happy with his weight gain this week.  

In week 10, the topic of weakness came up again.  The neurologist considered Logan's deficits to be in the borderline range.  He was on the fence about whether or not to limit Logan's dose of Vincristine this week, but decided that it would be preferable to finish out the induction with the full dose.  If need be, They will cut the dose when Logan returns in 2 weeks to start his first "maintenance cycle".  Other than that, Week 10 was relatively uneventful. A little slow, thanks to the pharmacy taking it's time getting his meds out.  Logan had a good nap while we were waiting.  It was 1 of 4 naps today.  I suppose he was a little wiped out today. 

Now that he is done with his 10 week induction, Logan will get a 2-week break from chemotherapy.  In those 2 weeks Logan will get an MRI and follow-up with his doctors to see what effects, if any, the chemotherapy is having on the tumors. He will also see his neuro-ophthalmologist for a thorough vision assessment to assure that his vision has not been compromised.  This is where the “scanxiety” starts.  Waiting to see what is happening and what is all means.  Finding out if the chemo is doing it’s job or if Logan has gone through all of this for nothing.   Course of action at that point may change based on what the MRI shows, but the plan is to start maintenance cycles consisting of 4 weeks of chemo and 2 week breaks for the rest of the year long course. All in all, Logan has done an AMAZING job in handling everything. At three years old, he has gone through more than a lot of people ever will and has showed such strength and courage.  I could not be more proud of my little baby!