Friday, December 20, 2013

Chemo Santa

Today's chemo was more or less like the others. The conversation with the doctors revolved around his NONSTOP appetite and the continued behaviors that we see. As far as the appetite goes, the doctors said that could be a good sign that the chemo is working. He said that sometimes, with tumors in the hypothalamus, kids experience decreased appetite so when the tumors shrink, they see an increase again. I guess we will find out in a few weeks when he goes in for his MRI.

The behaviors have been something we have talked about for years now. We put that on the back burner when we started chemo so that we could get him stable on treatment. Now that he is doing well and hopefully getting better, we brought it up again. Behaviors of concern are general inattention, hyperactivity, lack of impulse control, etc. All very common with NF. Basically, we can't take our eyes off of him for a second without him doing something destructive, unsafe or otherwise undesired. The doctors suggested a low dose med similar to Ritalin. I swore I would NEVER medicate my child. As a kid, I was on Ritalin and later Adderall, and I know first hand what that does to you. I didn't want that for my kids. After seeing Logan struggle and know that he really can not control himself, I know that something needs to be done. We have tried everything (and given my job, I like to think I know a thing or two about behavior management), positive reinforcement, negative reinforcements, rewards, punishments.  Nothing seems to work.  I want him to be safe. I want him to be available to learn. I want him to be able to stop and think and make decisions based on what is right, rather than what he thinks first. We are going to give it a try and see if it makes any difference. Hopefully this will help and allow us some flexibility to provide Logan with the independence and learning opportunities that he needs. 

Today was also a great day at the clinic for the kids. When we arrived, we were greeted with a Christmas tree surrounded by probably hundreds of presents. These presents were donated by the family of a former patient (I assume the same one I mentioned months ago that gave out goody bags to all the chemo kids on their deceased daughter's birthday).  All of the kids coming through the clinic got to pick out their own presents. Logan picked a keyboard, or compiano as Logan calls it. In addition, there was a holiday party for the inpatient and outpatient chemo kids with food and cake and more presents and SANTA!!  Logan was so excited to go see Santa, he even woke up from his Benadryl induced nap for it.

All in all it was a great day for Logan at chemo. One more treatment before his next MRI where we will hopefully get some good results.
Hat head and a mouth full of cake

Friday, December 13, 2013


It's been a little while since my last update and of course that is a great thing.  It means nothing truly eventful happened.  We had a great Thanksgiving with family and a low key few days at home thanks to the snow that kept us all home.

Last Thursday, Logan had another uneventful chemo session. He slept through the whole 3 hour infusion again.  I have to say it again, I love the addition of Benadryl to his treatment!  We spoke to the doctors at length about some long standing issues.

First, Logan has been limping on and off for a while now.  While the first incident was related to an injury, the re-occurrence of the limping, as well as complaints of foot pain without a recent injury, have us all scratching our heads.  He is no longer on the medication that causes nerve damage, but there are still cases of patients experiencing foot and leg pain on his current medications.  Since he has been off the Vincristine, Logan has shown some additional weakness in his left foot.  Since the issue isn't consistent or really interfering with his functioning, we can just wait and watch (the overall theme with NF).  If it really becomes a problem, they will do an MRI to rule out any damage. 

The second issue was the fevers.  We have adhered to the strict fever protocol from the beginning.  When Logan's fever hits 101.0 we call and are always instructed to go to the ER (for 2 days) for IV antibiotics.  While I totally understand the need for the extreme precaution, it is certainly less than desirable.  Logan gets a fever EVERY Friday after his chemo infusions.  We have yet to see a week when Logan does not have a spike in his temperature.  Thankfully, lately the spike in temperature has resolved quickly enough and not gone high enough to require a trip to the ER.  We spoke to the doctors about this and our concern for this being a regular occurrence.  The kid goes through enough with having to get punctured and pumped full of poison for three hours every session, we really hate to have to add addition pain on top of that.  Not to mention that the ER port assesses are TERRIBLE!  Since fevers seem to be a pattern, but Logan's body seems to be able to manage it on it's own, the doctor's have allowed us an addition .5 degree flexibility with the protocol.  Now instead of going to the ER at 101, we don't have to go until his fever hits 101.5.  Win!

Spending so much time at the hospital, you get to know the other kids that are there for treatment.  You see them every week, you learn their stories and you get to care about them and their families.  This week during our 7 hours at the hospital, we got to know a little girl and her father, who have been receiving treatment for some time, but our paths have never before crossed.  This little girl is the same age as Logan and, like Logan, was diagnosed shortly before her 2nd birthday. Other than that, her story is very different. She was diagnosed with an aggressive kind of brain tumor and has been receiving chemotherapy treatment since.  Shortly after her diagnosis, her mother suffered a series of heart attacks that eventually killed her.  Her father remarried and together they raise her, along with her 5 siblings (including one with Autism).  This little girl, knowing and understanding her condition, speaks very frankly about it, and at 4 years old, is comfortable enough saying
that she is going to die, but that it's ok.  While they were there, the father was meeting with a social worker to arrange his daughter's "make a wish".  As if this little girl wasn't brave enough, as if battling cancer, facing death and going through painful treatments, all before her 5th birthday, didn't make her brave enough, her "wish" shows she is braver than most grown men!  Her "wish" was to swim with sharks! 

These kids, that battle with such strength and courage, never fail to amaze me. 

Tuesday, November 26, 2013

Uneventful weeks

After two more ER visits, we had a pretty uneventful days.  It was a nice break.  The kids went to school, Ryan and I worked.  All was right with the world.  Hoping this trend continues.

Wednesday afternoon, the boys had their 6 month checkups with the dentist.They did a great job!!  They sat, they behaved and they didn't cry! Clearly, they did not get this from MY side of the family.  I'm pretty sure my debilitating fear of the dentist is, in fact, inherited. In fairness, I have improved quite a bit myself.  I can at least step foot in the dentists office now (for the boys' appointments) without crying.  I think I deserve a treat for that.  We got some tips for the dentist in dental care for kids on chemo.  Like everything else, we have to consider the germs and potential for infection.  Tips included changing his toothbrush more often and drying it completely before storing it. 
Fighting to stay awake

Thursday was Logan's usual chemo appointment.  Everything checked out and went smoothly.  His blood count were even higher than usual for him (still low for "normal").  The best thing about this session is that Logan slept through the WHOLE infusion!  He was hooked up for 3 hours and slept through it all! Partly due to the benadryl and partly due to the fact that he was up at 4AM! This is DEFINITELY the way I like do these appointments! If only they could all be this easy.

Friday he got his usual Post-chemo fever, but thankfully it went away on it's own pretty quickly so we didn't have to take him in to the ER.  I'm pretty sure this is a trend that will continue.  Chemo Thursday, Fever Friday.  I can deal with this, as long as the fever is low enough or goes away quickly enough so we don't have to make a trip to the ER.  This just making planning things around his chemo appointments a little more daunting. 

Glad this week was uneventful on the chemo side of things because we instead had to deal with emergency plumbing issues (water leaking out of our bathroom wall) and getting a new water heater installed at 2AM.  If it isn't one thing it's another.  I guess you can't have it all! 

Tuesday, November 12, 2013

Another 8 hours in the ER

This weekend was pretty similar to many others.  With my parents in town to help out, we kept Logan home from school on Friday.  His blood count were on the low side before he got his infusion Thursday, so I felt better about him staying out of the germ factory of daycare.  With kids in daycare, it's inevitable that they will get sick, but with a weak immune system, it can be dangerous.  Friday afternoon, Logan began with a low grade fever.  I assumed it would happen, as it seems to be the pattern.  Chemo on Thursday, Fever on Friday.  This week he was even more likely to get a fever as he also got the flu shot.  After an hour of low grade fever, topping out at 100.9, I gave the fever line a call.  I thought, MAYBE since he got the flu shot, which is likely the cause of the fever, we won't have to go in. MAYBE they would tell us to monitor it at home. WRONG. I know it's the right thing to do, following the doctor's orders, but part of me wants to just ignore it and give the kid a break for once. How bad could it possibly be?! With my mom at home to pick up Parker, I headed in with my dad for our, now too familiar, ER visit. 

Everything was pretty much as expected.  One advantage to being a chemo kid, is we get taken right back to a room and don't have to wait in the waiting room forever.  Of course, if he wasn't a chemo kid, we wouldn't even be there in the first place.  Logan got accessed, antibiotics and IV fluid.  Counts came back ok and we were cleared to go home and return Saturday for Round 2. Besides the nurse thinking my dad was my husband, it was a relatively non-traumatic trip. Ryan returned with Logan for Round 2 on Saturday.  This was the first I took off from one of Logan's hospital/ER visits and I have to say, I rather enjoyed the break.  Although, I was wondering the whole time how they were doing.  It's hard to turn that off.

Besides the inconvenience of two more trips to the ER, two more port accesses, and 8 more hours sitting in the hospital, Logan missed out on some fun times over the weekend.  A friend's birthday party on Saturday and a play-date on Monday.  We've been told to try to keep our lives as normal as possible through chemo treatment, but that proves to not always be possible.  In the short time that we have been doing this, Logan has missed out on more activities and events than I would like.  He has missed days at school with his friends, trips to see family, days at the zoo, parties.  I can't help but feel bad for him, but he handles it all with such maturity.  Maybe he doesn't understand, or doesn't realize that he is missing out.  Or maybe he knows and understands why.  Whatever the situation, this is just another way that Logan shines. 

Friday, November 8, 2013

Another week

Monday night I had a dream that I was at the doctor with Logan.  Only difference was that I was the one getting MRIs and riddled with tumors.  I had to go through the chemo treatments and uncertainty.  Logan was fine. In any other situation, a dream like this might have been upsetting and unsettling but I was comforted. Logan was fine.  To know that I could go through it and he wouldn't have to, I felt so at peace.  I wish this could be our reality.  I wish I could take this away from him and go through it for him.  The painful reality is that I can't.

Pre-meds while adding beads of courage.
Ryan had a busy day at work during this round of chemo, so I was joined instead by my mom and dad (Grandma and Dude). Everything was pretty standard except maybe the LONG wait.  The pharmacy seemed particularly slow today.  Logan was not too happy during the port access but got through it ok. Blood work was low but not neutropenic.  It took a couple of tries to get the urine sample, but got that taken care of.  During the doctors' exams, we spent a good amount of time talking about his foot.  Before, we talked a lot about his feet because one of his meds was known to cause nerve damage.  Now, the concern is that the new tumors could cause problems in his motor functioning.  The situation this week was that he injured his foot last Friday but continues to limp and have problems getting around on his foot. While the doctors aren't too concerned about an injury to his foot, it's important that they rule out a neurological impairment.  In other words, they want to make sure that his limping is, in fact, due to his injury and not the progression of the tumor.  If he continues to have a problem or if it gets worse, it'll be time for an xray.

Naps, not just for Logan
Once we got the clear for chemo from the blood counts, it was time to pre-med and wait for the chemo to be ready.  This is where the long portion of the day began.  We actually got his pre-meds while he was still in the art room, so he got to play a little longer.  This was great because if we had to spend any more time in the infusion pod than we had to, I think I might have started having tantrums.  By the time his anti-nausea med and benadryl pushed, Logan was ready to conk out.  You can really see the tired hit him like a brick wall.  He got to curl up with Grandma in the art room and have a good nap.  He was knocked out for probably an hour while we waited... and waited.... and waited for his chemo.  While he napped, he get a little feverish but slept and sweated it out pretty quickly.   Finally, 4 hours into our appointment, we were in a pod ready for infusion.

Infusion was standard and long.  Logan did a great job just hanging out.  I was a little worried since he had already napped away most of the waiting, that the waiting through infusion would difficult for him. I really enjoy that he usually naps through the infusion.  It's amazing that he knows to just sit and wait.  For a 3 year old, to sit for hours and not fuss, it's a miracle.  Once we were done with all the meds, flushes and snacks in my bag, it was ALMOST time to go home.  One more thing we had to take care of, the flu shot.  For Logan, getting the flu shot is a risk.  For one, his immune system is compromised so his body might not process the vaccine like it is supposed to.  Additionally, Logan is allergic to eggs, and this is known to be problem for having an allergic reaction to the flu vaccine.  Despite the risks, the risk of him getting the flu with a weakened immune system is MUCH worse, so it was time for the shot.  (He definitely could NOT get the nasal spray as that is a LIVE vaccine and would definitely make him sick).  He wasn't happy about it, but who is?

All in all, another long day at the hospital done, and another treatment closer to, hopefully, taking care of these tumors. Thanks to my parents for making the trip down to spend this long day with us.  I know Logan really enjoyed having them there for him.

Tuesday, November 5, 2013

Weekend Review

It's been a busy few days for us.  Mostly happy and good.  They boys have been able to have fun and do exciting things, which is a nice change.

Wednesday:  The boys' school held it's annual "Trunk or treat" event.  It's always been a great Halloween celebration for the kids and they have so much fun.  For those not familiar with a "Trunk or Treat" (I know I wasn't until we went to our first one at this school), cars are parked around the parking lot with trunks opened and decorated. The kids get to go around the parking lot and trick-or-treat from trunk to trunk.  This year is the first year we have provided a trunk and Parker and I had a great time working on our trunk decorations together.  Happy to say to was a huge hit!

Picking raffle winners
Also at the Trunk or Treat this year was an amazing out pouring of support for our family.  One amazing family organized and ran a raffle to raise money to help support us.  With local businesses donating gift cards and prizes, they were able to raise an incredible amount to help defray some of our tuition and medical costs.  This remarkable gesture of kindness, not just from the family that organized it, but also by all the families who participated, is something that I will never stop being thankful for.  I wish I had better words to express just what this means to us, that people care so deeply and want to do so much to help.  It is truly incredible.

Thursday: Arriving home late Wednesday night, Logan was covered in hives, so Thursday he was home with me.  We have only ever seen this reaction in him before when he eats eggs, and we are pretty certain he did not eat any eggs.  He has never had a problem with food that had egg in them, but straight up egg or food with high egg content, is something we have always avoided (ex. quiche, popovers, etc).  Our first thought was naturally the chemo.  This new medicine has a high risk of allergy which is why them give him benadryl prior to treatment.  While it would be strange to have a reaction this long after the dose (almost a week), it is certainly something we will look out for again and discuss at length with the doctors this week.

This day was a particularly difficult day with Logan in terms of behavior.  Being home with him all day, I struggled with his tantrums, lack of sleep but clear exhaustion and overall bad behavior.  This is a particularly difficult situation to be in as a parent.  On the one hand, he is "sick" and I want to show compassion to his situation, but on the other hand, we still have expectations of him to do the right thing.  Just because Logan is going through this difficult process, we do not allow that to be an excuse for bad behavior. He is held to the same standards as before and he still manages to find himself in trouble more often than not.  Due to Logan's behavior on this day, he had a "limited halloween".  While he did go out with Ryan and Parker for "trick-or-treating" (I stayed behind to pass out candy), he was not allowed to get the candy.  Yeah, I know, we are mean parents!!

Friday: Still with the hives in the morning, it was day 2 home with Logan.  I changed up my strategy a bit and was able to avoid some of the bad behavior and get a GREAT nap out of him.  FINALLY.  We made it though the day alive and got to spend the evening at a group play-date, which we also survived.  All in all a good day.

Saturday/Sunday:  With family in town, we set out to celebrate Parker's birthday.  Saturday was mostly just spending time with family and getting ready for the party.  I even got some time to spend out of the house with Ryan.  That doesn't happen often enough.  Sunday, we had a great time celebrating Parker.  Being a big brother is hard enough (I assume, since I have never been one) but being a big brother in this situation is, I'm sure, that much harder.  Sitting by while your little brother gets all the attention and "special treatment", I can only imagine how he feels.  It was so important to us to celebrate Parker and make sure he knows just how special and loved he is too.  I'm so glad he had a GREAT time with his friends and was able to let loose and enjoy his day. 

Tuesday, October 29, 2013

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. 

Thursday, October 24, 2013

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

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.

Wednesday, October 23, 2013

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

Friday, October 18, 2013

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. 

Tuesday, October 15, 2013

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. 

Thursday, October 10, 2013

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

Tuesday, October 8, 2013

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. 

Thursday, October 3, 2013

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!

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.