Friday, October 3, 2014

What a week

This has been quite a week.  Started with some fun family fundraising and ended with some very high highs and some very low lows.  So lets start at the beginning.

Last weekend we headed up to NJ for the Central NJ NF Walk.  It was a great event and thanks to all of our incredibly generous friends and family, Team Logan has raised over $9,000 and rising (they are accepting donations until the end of the year if anyone missed it).  We are so very thankful for everyone that donated to this cause that means so much to us. And for everyone that came out (especially my brother and family that came all the way from Boston)  and walked with us, we were so honored to have had you by our side.  Congratulations to my sister for completing her first 5K run (which actually turned out to be a 6K)!!!


One highlight of our day was meeting a family that has been through such a similar story to ours, only a few years ahead.  They have come through exactly what we are going through and are exactly where we want to be, stable and off chemo!  Their story parallels ours from the location of tumors, to the time on chemo, to the older brother feeling the burden of having a "sick" sibling.  It was so great to hear their story and so touching to see this little boy want to connect with Logan on a level that not many other people are able to.

After an exhausting weekend, we came back home ready to face a new week and hopefully celebrate great news.  Sunday night, Logan woke up screaming in pain from his leg.  This is the 3rd time he has complained of leg pain in a month.  After getting him comfortable and a long night in bed with me, Monday morning came with no relief. He could not move his leg and spent most of the day crying/screaming at the slightest movement.  We were able to get him into the doctor Monday afternoon and found out that they are stumped.  An xray showed no damage or abnormality to explain the pain.  They were able to schedule us for an MRI of his legs for Saturday to see if they could find an answer.  Yup - 6 days in pain to wait for a possible answer.

In the meantime, they prescribed us a powerful pain medicine to help Logan.  After trying 7 different pharmacies, I was unable to get it filled and at this point in the evening, unable to get a different Rx to get us through the night. Monday night was screaming on and off every 30 minutes until about 2AM when we found a position that was relatively painless for him and he was able to get a couple hours of sleep at a time.  Tuesday, I was able to get the doctors to write a different Rx that we WERE able to fill and by 4PM (yes- 4PM thanks to the slow response from the pharmacy) we had some drugs to help reduce the pain.

Wednesday, still unable to stand, walk or otherwise move, we headed out bright and early for his brain MRI,  That was the MRI to determine if we could stop chemo.  Being through so many other MRIs there really isn't anything new to report except to say that he is officially over his fear of the sedation room.  Logan actually ENJOYED this sedation!  Once the mask went on, he had a grin ear-to-ear, took a deep breath and let out a relaxed "that's sooo gooood!!!"  THANK GOD!!!!

Thursday, with the in-laws down to help, we had our appointment to review the MRI.  The good news, the MRI was stable.  We are done with chemo!!!!  We will go in for monthly checks and port flushes and have another MRI in 3 months.  This will be one of the most nerve wrecking scans to date, as this will show whether or not Logan can STAY off chemo.  While they expect to see some regrowth of the tumor, passed a certain amount and they will have to consider starting it up again.

The bad news, Logan still can't walk!  While at the doctors, they examined the leg again only to reiterate, that, while they have seen some leg pain in other patients, they have never seen anyone taken out for as long as Logan has been.  Thursday evening we got a glimpse of some improvement, when Logan started moving his leg without pain and even crawled around the house a bit.  Thinking the worst might be over, I let Logan sleep in his bed again, only to have to bring him back to bed with me after the 4th time he awoke crying Thursday night.

So far Friday, Logan has been able to move around a bit but still complaining of pain.  While it is a major improvement, he still has a long way to normal and hopefully the MRI tomorrow will shed some light onto WHY this is happening.  I have a sinking suspicion that this pain will go unexplained and I'm not particularly happy with that outcome.  He has been through so much this week and without knowing why it is happening or if it will happen again, I don't think I will rest well.

So, while I would love to celebrate and feel great about our good news, it's hard to get there when dealing with a new twist in the story.  Logan loves to keep us on our toes.  If you remember back to the last MRI, we had a stable report, but with a new concern for an unknown mass on his liver.  It seems every good news met with a twist and frankly, I'm ready some some straight forward and uncomplicated news.







Sunday, September 21, 2014

The end??

This week was a very big week at chemo.  This may have been his LAST chemo session!!!  In 2 weeks, Logan will go for an MRI and if it is stable and there are no other concerns, we will be done with chemo!!!!  Maybe forever!!!  I wish I could have made a bigger deal about it and told Logan that  it would be the last time, but I wouldn't be able to handle it if it that were not true.  We'll have to wait for his MRI to hopefully celebrate the good news.

IF we are in fact done, he will still have to go in to get his port flushed monthly and will get another MRI after 3 months.  If that MRI looks good, we can talk about getting his port out. We'll cross that bridge when we come to it.

We ALMOST made it to the end without another ER visit, but with an unpleasant stomach bug (vomiting, diarrhea, and the deal breaking fever) it was off for 2 days of IV antibiotic.  Historically our ER port accesses are what nightmares are made of, but thankfully this time was different.  We had a nurse that actually knew what he was doing and did a great job.  He could have just as easily worked in the clinic.  And what do you do with a 4 year old scared for an ER port access? Give him your iPhone and let him take selfies.   As great as this ER visit was, we were still thankful to be able to do day 2 at the clinic.

With my dad down to keep us company, the session went well.  Logan slept through most of it and fought through some vomiting at the end and on the ride home. When he wasn't sleeping or throwing up, he kept us pretty entertained talking about farting in the bathtub and asking me if I pooped him out in the toilet when he was in my belly. Silly boys.  I also got to watch him have a pretty interesting conversation with Siri on his iPad for the first time.

Besides talking to the doctor about the potential end of chemo, we had to discuss some current leg pain.  Logan has been pretty consistent in complaining of foot pain and has never really liked being on his feet for long but this week we got new complaints of leg pain.  It started when he was sitting and watching TV and the trip that day to the zoo didn't make matters any better.  He appeared to be having trouble getting up and down the stairs and into the car.  His doctors indicated that joint pain has been something that other patients on these drugs have complained about.  Hoping that ending his chemo treatments can put an end to that pain as well.

Next weekend we are very excited to be joining our families at the Central NJ NF Walk.  Thanks to all of our very generous friends, families, coworkers and supporters, Team Logan has raised over $6000 to donate to the Children's Tumor Foundation.  We are so very thankful to everyone that has supported us and this cause and look forward to joining other families living similar stories at this great event.

It is not too late to contribute to the NF Walk for the Children's Tumor Foundation.  If everyone who reads this post donates just $5 (less than the cost of lunch at... well, pretty much anywhere) or more, we will surpass our donation goal.  Find Team Logan's donation page here or support the man himself with your donation and/or kind words here.


Tuesday, September 9, 2014

Nervous

This week's usual chemo day started off slightly different than usual.  For the first time EVER, Logan was dead-silent on the car ride to the hospital.  If you know Logan, you know that silent is never a word we use to describe him.  Knowing that something was off I asked him what was wrong.  He said "I'm nervous".  This caught me off guard, as Logan has never verbally expressed emotions about what he is going through, other than the occasional "I don't want to".  When asked what he was nervous about he responded "I'm nervous to get my big band-aid (Port access)."  This was a harsh reminder that this child, who on the outside handles it all with bravery and strength, is in fact feeling the emotional pain of it all. While I don't like to see him in physical pain (port accesses and chemo sickness), I know that this is temporary and will go away.  It's the emotional pain, that I now know Logan is dealing with, that all but destroys my heart.

The good news is, after talking with the doctors, there may be an end in sight.  Logan has one more treatment before his next MRI, and depending on the results, that could be our last treatment, at least for now.  If his MRI is stable, we will likely stop chemo and continue to monitor his tumors.  Should they grow back, he will have to start up again.  While that is very likely to happen, we don't know for sure if it will actually happen or how quickly.  It could be 3 months, 3 years or not at all.  This would be a great relief and much needed break for him. He would still have to go in once a month to get his port flushed, but it would be a major relief off the usual schedule and no sickness to worry about.  Of course what I would worry about is the tumors growing back and I'm sure that first MRI after stopping will be one of the hardest to wait for.  

The chemo session itself wasn't as routine either this week.  Typically Logan doesn't get sick till the last 30 minutes or so of his infusion.  This session he had some anticipatory nausea and he started heaving upon arrival in our pod and getting his pre-meds.  Thankfully, he fell asleep instantly and slept through the whole 3 hour infusion.  He even slept through the nurse de-accessing his port.  He woke up long enough to get to the car and fell asleep again for the ride home.  Got out of the car and fell asleep again on the couch.  Woke up to get Parker from the bus stop, and fell asleep again on the couch.  This is the most knocked out he has been after an infusion.  I'm certainly glad he got the extra rest though.

Another reason for his extra tiredness could be his nighttime waking, although it usually doesn't effect him.  Logan has a habit of waking up in the middle of the night and roaming around the house.  This is a BAD idea for a child who is known to get into things that he should stay far away from.  He used to be really clumsy about it so I would hear him trying to leave his room and wake up.  He has gotten much better at staying quiet and it very stealthy about it so other measures had to be taken.  Logan's door is now equipped with an alarm that sounds right next to my bed when opened.  While I don't enjoy being woken by an alarm in the middle of the night, it's better than the alternatives (i.e. Logan having unsupervised rein of the house.)  


Wednesday, August 20, 2014

One Year

Just over a year has passed since we starting the journey on chemotherapy.  It's hard to believe that Logan has been going through this for over a year now. I would love to say that the fear and anxiety has diminished over time, but I'm not sure that's true.  While we know more now than we did a year ago, we still have a lifetime of questions ahead and all we can do it take it one question at a time.  We know he can tolerate the chemo well and live as normal a life as possible.  We don't know how much longer he will have to live like this.  We know the chemo has worked in stabilizing the tumors. We don't know if it will continue to work as effectively.  We have seen the majority of his body scanned and are aware of what is currently growing inside.  We don't know what will grow or how fast.  For now, all we can do is be thankful for his stable health and overall resilience while facing this difficult time.  He is a truly amazing child.

In September, my family will be participating in the Central NJ NF Walk.  The NF Walk is a national fundraising program of the Children's Tumor Foundation that supports NF research, raises awareness, and provides support for individuals with NF and their families.  We have all seen how the viral ALS Ice Bucket Challenge has raised incredible amounts of money and awareness for ALS, a cause that certainly needed support.  If we could accomplish even a small fraction of that as an NF community, we will have been a success.

On September  27th, we will join together as a family and team to walk (or run - good luck Aunt Bee) in support of Logan and all those people and families effected by NF.  We will be joined by other families that are fighting the same battles, have the same fears and are looking for the same answers.  Please consider donating to support our team efforts and this great cause.  Every little bit helps.  If you are a central NJ local, consider joining our team and walk along side of us.  Follow this link for more information and click "Join Team" to join us or scroll down and select your favorite Team Logan member to support (I know who my favorite team member is!)

End of the summer catch-up

I've been a little behind on updating you all as I have been pretty busy. The last month has been filled with some extra appointments and some fun vacation.  I will try my best to remember and fill you in on it all.

When I last left you, we were "stumped" by the mass on Logan's liver.  The doctor's were expecting and hoping that it was just another "normal" NF tumor.  Logan had another MRI on his abdomen to further investigate.   Finally, at Logan's usual chemo appointment that same week we were able to get an answer. After reviewing his MRI and consulting with other specialists, the doctors believe this mass to be a cavernous hemangioma.  I was expecting them to say it was just another "normal" NF related plexiform neurofibroma, so this answer was a bit of a surprise.  I'll save you the trip to google.com.  Basically, a hemangioma is a collection of blood vessels that begin to cluster and grow like a tumor.  They are typically very benign "tumors" and cause no problems, although, as with most things there is a risk of complications.  The typical treatment is no treatment at all.  Monitoring for problems is usually sufficient. Occasionally, surgery to remove the mass is recommended.  They have even been known to treat these with Avastin, which Logan is currently getting.  His doctors were slightly concerned over the large size of this hemangioma but have determined that since he appears to be unaffected by it, the "wait and watch" approach would be sufficient.

His usual chemo appointment was pretty unremarkable.  He managed his nausea pretty well.  His sleep, or lack of sleep I should say, was a bit of an issue on Thursday and Friday. Friday morning was a marathon of crying, screaming, tantruming, and whatever else you can think of.  I'm pretty sure he cried/screamed for at least 4 hours straight.  Thankfully that wore him out and a good afternoon nap later, he was back to "normal" (I use that term very loosely).

Fishing with Uncle Bobby
That week we were also able to get in some fun activities. With my dad down to help out, (and major help he was), we were able to entertain the kids with a morning at the trampoline park and an afternoon of fishing.  One thing I've been working on, is getting Logan more active.  He'd be happy to sit around all day and physical activity is usual met with whining and request to go home, go inside, or sit down.  Feels strange to say that he suffers from ADHD, when he is not particularly active, but it's a whole different kind of hyper activity.

The following week brought our highly anticipated appointment with the neurologist that specializes in ADHD associated with NF.  After a lot of discussion, we decided to stop the ritalin and try a non-stimulate drug instead.  This drug effects his behavior in a very different way.  The jury is still out on it's effectiveness.  In addition, we are starting the process to have him evaluated.  This will hopefully give us a better picture of why Logan is doing what he is doing and how we can help him.


After we had all of our appointments out of the way, it was time for some fun.  We were able to get away for a vacation, which is a very rare occasion.  We met the rest our my family in Duck, NC and spent a week in the sun and sand.  It was a great and relaxing time (thanks to my family stepping  in with some extra supervision of my kids.)   I'm so thankful to have been able to get away and just have fun with family.

Once vacation was over it was home to reality.  Back to work for me, back to chemo for Logan and in the next couple of weeks, back to school for the kids.

Sunday, July 20, 2014

Stumped

I'm officially done working for the summer although I feel like I am constantly fielding emails, calls, texts with one problem or another.  The rest of the summer is for Logan's appointments and keeping the boys busy and out of trouble, which is much harder than it would seem.  Now that Parker is home from 2 weeks with the grandparents, we've been doing some fun things (trampoline park, movie theater, going to the pool, etc.)  and some not some fun things (getting swarmed by yellow jackets while working in the yard, running errands, doctor appointments, etc.)

This week's chemo was a chance to pick the doctors brains since we haven't actually discussed this new liver issue.  Let me start by saying, Logan is being followed by one of the top neurologists for NF in the country (and probably the world).  You can't read about management of NF brain tumors without seeing his name. He has probably seen it all, which is saying a lot because no two cases of NF are the same.  When asked about his thoughts on Logan's liver mass, the word "stumped" came out of his mouth.  According to him, the liver is an unusual place to develop NF tumors and he has not seen that.  Granted he is a neurologist and not particularly involved in other areas of the body.  I think he is just as curious to see what is going on as we are.  This is not particularly comforting.  Thankfully, being who he is, he has easy access to people who may have the answers.  The next step is an MRI of the abdomen to see if they can determine anything else about this mass.  Should the MRI not provide any insight, a biopsy may be recommended.  The good news is that there are no apparent effects on his liver function.

Big brother looking on
Another point of discussion with the neuro-oncologist, was figuring out when there might be an end to this treatment.  There are a lot of factors at play and a lot of options moving forward.  Next steps will be discussed in more depth in October.

Another bonus this week was the addition, for the first time, of big brother Parker.  He has been very curious about all these doctor's appointments and was very interested in coming and seeing for himself what it is all about.  I prepared him by giving him a rundown of what happens and emphasized that it is not fun. I told him it was a lot of sitting around, waiting and doing things that aren't fun.  I'm pretty sure he was under the impression that it was a fun day full of excitement.  After all, that's how we talk about it around Logan.  He said he understood.  About 30 minutes into a 7 hour day, Parker says "This is boring.  It's a lot of waiting."  You don't say!

Logan did great, but do I really have to say that at this point.  He enjoyed a short visit with the clowns and an even shorter nap.  He got a little sick at the end and got really upset stating "I'm not a strong boy anymore because I threw up." Thankfully we got through 2 days post infusion without any additional sickness.

Thursday, July 10, 2014

Ultrasound

Today Logan went for an ultrasound to investigate an area of concern found on his liver during his last MRI. The doctors felt this area was an artifact of the MRI and not of any actual concern. The ultrasound was ordered as a precaution to double check.

Logan did a great job. He laid still for nearly an hour while 3 different techs/doctors poked and prodded at his belly. Thank god for iPads!  

The results were not quite what I expected.  The ultrasound found that there is in fact a large area of "something" on his liver. What the "something" is, we still don't know. This can not be determined by the ultrasound and it was recommended that he go back for another MRI, this time focused on the abdominal concern. We await word from our team of specialist to find out what they want to do.

One step closer to knowing nothing more.

Wednesday, July 9, 2014

Ms. Jasmine

As a parent and a school based therapist, I see a lot of average teachers.  Unfortunately I also see a lot of sub-par teachers.  It is rare that I see a teacher that I can truly call exceptional.  Today, we are losing one of those exceptional teachers.

Logan has had some great teachers over the years and he has loved them all.  I have been impressed as well, as Logan is not always an "easy" child.  Teachers have come and gone frequently for my kids and it's always sad to see the "good ones" go, but this one is especially difficult. Ms. Jasmine has been Logan's teacher this year and she has been amazing. When other people have thrown their hands up in the air and said "I can't do it!" in reference to my child (yes I have seen it), Ms. Jasmine embraces him with patience and compassion.  She has a calm about her that you can feel just talking to her.

To say that Logan LOVES Ms. Jasmine would be an understatement.  To him, she has been a source for comfort, love, admiration, and I'm sure a million other things that he can't express at his young age.  When he is sad or hurt at home, he calls out for her.  When he is scared at chemo, he calls out for her. He talks about her during the day and I'm pretty sure I've heard him call her name in his sleep.  I have never seen Logan THIS attached to a teacher. 

Through these preschool years, we have gotten a glimpse of what Logan will need to be successful in school in the future.  He will require a lot of support and understanding from his teachers.  He will require patience and the willingness of others to go that extra step.  I know I will do everything I can for my children, but without a teacher who is willing to work with my child in the ways that he needs, it could all be for nothing. Every child deserves a teacher like Ms. Jasmine, but for Logan, without teachers like this from year to year, I fear the outcome.

We will miss Ms. Jasmine immensely and wish her the best in this amazing opportunity because I know she will do amazing things!


Tuesday, July 8, 2014

MRI #8/Result/Chemo

Rather than just abandoning the post I had typed up weeks ago but never posted, this will be a special double edition including MRI and results/infusion.

June 24th:
It's that time again.  MRI day.  This is Logan's 8th MRI.  This one is also slightly different.  Up until today, the MRIs have been of the brain only and take about an hour under sedation.  Today's MRI also includes the spine and takes 3 hours under sedation.  The reason for this change is partially due to a tumor on Logan's back. Since he was born, Logan had a small "bump" on his upper back, directly on the spine.  It has always been suspected to be just a skin tumor, like some others that he has, but they want to rule out any chance that there is a problem with the spine.

Also, given the likelihood of him growing tumors on his spine, the doctors think it will be a good idea to have a baseline, should anything develop in the future. Obviously I'm hoping its clear, not just so that there are no tumors on his spine, but also so that there is no reason to repeat the spine MRI any time soon. 

Somehow, I survived the morning wait with Logan as active as ever. He decided during our first waiting room, that he liked another family better and convinced another father to read to him. The dad gladly took on the task. That's Logan, making friends wherever he goes. 

After the pre-procedure work up, about an hour of taking vitals, answering questions and signing forms, it was time to go to the sedation room, or "room with the stars and the juice" as Logan calls it. We stuck with the same plan on singing a song on our way in and in the car on the way there decided between What Does the Fox Say and The Barney song. Logan sang both. He is the master of the mash-up (mostly because he can't hold attention to one song long enough to sing more than a verse). He did a great job and only fussed a little when the mask went on. On to the waiting.

Armed with an iPad, the wait was not too bad.  Three hours flies by.  Usually, when the scan is done, they page me and it takes about 30 minutes for him to wake up.  Today, They came to get me and told me that he was already up and asking for me.  Pretty unusual that he came out of sedation that quickly but he was ready for his popsicle and to go home.  The afternoon was spent taking it easy.

Results/Infusion:
Knowing how nerve-wracking it can be to wait, our case manager emailed me the report from the MRI later that afternoon which I was also able to review with the doctors at his next infusions.  Basically, things in the brain are stable (nothing grew, nothing shrank).  There were a couple of minor things on the spine portion of the MRI that are not of any real concern.  They noted the small plexiform neurofibroma (benign tumor that we already knew about) near the spine that does not appear to be impeding the spine.  They noted some scoliosis (curvature of the spine) which we may keep our eye on or require a brace at some point. One thing that they found that will require some immediate follow-up on was a "large area of hyper-intense signal within the liver".  They feel that this "area" is not a tumor but an "artifact" from the MRI.  Basically, the MRI showing something that is not really there due to movement, malfunction, etc. Logan will go for an unltrasound this week to double check and make sure his liver is tumor free.  Overall great news on the MRI.
Ryan's HFM

Chemo this week was another solo trip for me as Ryan was once again sick.  In the early stage of what we later confirmed to be a raging case of Hand Foot and Mouth Disease, Ryan was off the hook.  Nothing too exciting to report other than despite being pumped full of drowsy inducing medicine, Logan did NOT sleep, making for a long and difficult day for me. But I can't really complain, because even the most difficult day for me is nothing compared to what Logan has to go through.  

Friday, June 20, 2014

Busy week

The past week or so has been crazy in our house.  I have been working like crazy to finish up the school year at the 2 school where I do therapy.  This requires a lot of paperwork, documentation, last minute evaluations, meetings and last chance for make-up therapy.   Logan, of course, did his part in making this as difficult as possible.

The first offense was last Friday, when Logan threw up upon arriving at school.  He has been doing this every "off chemo" week for the last 4 treatments. Because these episodes are happening so far removed from infusion (a week or more) it can be assumed that it is not related to the chemo.  So why is he throwing up every other week?  The doctors don't know.  I don't do well with not knowing, so I visit my good friend Google.  Google is the kind of friend that thinks he knows everything and gives you advice that you really don't want to listen to.  He has a tendency to jump to conclusions and get into your head. This is probably even worse than not knowing.  I really try not to take the stuff I read on Google too seriously, but you can't help but read into some of it.  The 2 theories discussed with the doctors are 1. the tumors (or new tumors) are growing causing increase pressure in the brain leading to unexplained vomiting (not totally illogical since we know he has tumors and is very likely to grow more tumors) and 2. hypoglycemia causing early morning vomiting (again, not totally illogical since it only happens in the morning after a long night of not eating). Since Logan is scheduled for an MRI next week, we will be able to confirm/rule out tumor involvement.  Now we wait.

The 2nd offense was Tuesday when Logan had to be picked up from school due to some very aggressive diarrhea.  Diarrhea is a very common side effect of his chemo, so a quick dose of medicine and little diet adjusting and we were good to go.

Wednesday started a string of doctor appointments.  Wednesday he was seen by the cardiologist.  This was to clear him for a change in medication for ADHD.  They completed a thorough assessment including an EKG and ECHO.  Logan did an INCREDIBLE job sitting still for the long ECHO and was cleared as everything looked "fine".  Our adventure at the cardiologist was not over quite yet.  Due to a history of some pretty serious life threatening heart issues in my family, the doctors wanted to be EXTRA sure Logan was clear, so they put him on a 24 hour Holter. My family is no stranger to the holter, but for those of you that don't know, a holter is basically a heart monitor that you wear for usually 24-48 hours.  With it, they are able to assess your hearts electrical functioning within your normal daily routine.  Logan did fine wearing it, although occasionally got tangled up in the wires. 

Thursday was his normal chemo day, but we started out with a trip to see his neuro optomologist first.  A few vision assessments and scans later, Logan was given the 'OK' again and were were off to chemo.  Another "normal" chemo.  They increased some of his pre-meds to try to combat the still increasing nausea.  As I mentioned, much of the discussion with the doctors this round was trying to figure out the unexplained vomiting.  We are also still holding out for talking about the behaviors/medication, but they are trying to get us in with one of the other neurologists that specializes in NF related ADHD behavior problems. Hopefully that will be able to happen soon.

Logan did a great job (duh) and actually slept through his entire infusion (in part I'm sure to the increase in premeds).  He did well most of the evening and again was able to eat very healthy portions of snacks/dinner.  The trouble with that was that when his anti-nausea meds wore off around 2AM, mommy had to clean up those very healthy portions of snacks/dinner.  I can not wait for the day when Logan can manage to get to a receptacle before he starts. 

Tuesday Logan will get another MRI.  As always, I'm on edge and anxiously await these result, even more so this time as we have this random vomiting hanging over our heads. 

To sum it all up, in one week we have seen vomiting and diarrhea, been to/scheduled for 4 different doctor visits and in the end will have been seen by no less than 15 nurses and 7 doctors.  Oh, and I managed to get all my work done. 

Thursday, June 12, 2014

ADHD

The biggest battle we have had in all Logan's medical issues is, without a doubt, managing behaviors. Logan is predisposed to having issues with ADHD because of his disorder. Now, before I start a war on the opinions of ADHD, I know that there are many opinions on the validity of diagnosing ADHD and even more on the treatment of it.  As someone who works in schools and has a child who struggles with behaviors, I attest that it is a very real problem.  While I do agree that people may jump to that diagnosis very quickly, and medicate as an "easy fix" without trying other interventions, I also believe that there are valid cases that require such interventions for the benefit of the child.

Best attempts at sitting still
I never, in a million years, thought I would say that with as much confidence as I do.  A little background: as a child I struggled in school.  I was diagnosed with ADD and put on medication to help support my education.  I hated it.  It's difficult to explain, but I just didn't feel quite myself while on it.  Once I was old enough to compensate for my weaknesses, I stopped taking it.  I swore I did not want that for my kids.

Then I became a school-based speech therapist.  I began working with kids who were the textbook examples of what ADHD looks like.  These kids can't control themselves or their actions.  I know it sounds silly to say.  Who can't control their own actions?  It's easy, right?  Well, you don't believe it until you really see it. It is truly indescribable and sad to see them battling so much within themselves.


What he can do in about 90 seconds
But it's fun to play with the blinds
4AM make-overs (not pictured: Logan and the cat)
Finally Logan came along.  In the last 2 years, Logan has developed hyperactivity and attention based behaviors that have severely impacted his life.  I know he's only 4, and these things are expected of someone his age, but it goes beyond that of a typical pre-schooler.  He truly lacks impulse control and does things that are inappropriate, destructive, or down right dangerous.  He knows right from wrong.  He can tell you the things that he should not do.  But he can not stop himself from doing them.  A highlight of some of his more common and most often repeated actions : pulling the fire alarm at school, drawing on the walls/furniture, drawing on the cat, dancing naked at school, throwing things in the toilet, stealing things (constantly), throwing tantrum, attempting to play with dangerous items (scissors, knives, razors, lighters, etc.), walking/running away in public, running into the street, peeing on himself, pooping on the bathroom floor, general destructive behavior. If left unattended, Logan can destroy a room in about 90 seconds.


In addition to the behaviors, Logan is unable to sit and attend in order to learn new information. He can pick an activity and before he even has a chance to start that activity, he has moved on to another.  This can happen in rapid succession until he has either found the rare object that can hold his attention or he runs out of options.  At school, unless the teacher is sitting with him one-on-one, he can't participate and even then it's a struggle. I have overheard teachers at his school (on multiple occasions) refuse to allow him to be a part of their classroom. As a mother, it breaks my heart.

Finally there is the developing aggression. Yelling, screaming, tantruming, aggressive backtalk, hitting/kicking, crying.  All at the drop of a hat.

Logan started taking a low dose Ritalin a few months ago and for awhile we saw a great change.  Once we played around with the dose, we found that the behaviors decreased and his attention increased.  He was finally able to participate in class activities.  He wasn't initiating destructive behaviors (as much).  He was easily redirect to appropriate behavior.  About a month ago, the medication started to not work as well.  His morning dose continues to give him some benefit for a brief amount of time, but his afternoon dose has no effect.  We started to receive reports of behaviors coming back at school and we certainly saw it for ourselves at home.

 We have spoken at length about finding another option.  Different medication?  Stronger dose? Extended release?  Who knows.  Before we can discuss another plan, Logan has to be cleared by Cardiology.  These medications can cause your heart to race or exacerbate existing heart problems.  Since my family, including myself, has a history of cardiac issues, Logan will require a thorough work-up before they feel comfortable changing he prescription.   Once he is cleared, we will continue to work on a plan to best support Logan.

Thursday, June 5, 2014

Strong boy

Today I thought I'd give a timely report. An update on the actual day of chemo?!?  Unheard of!

Logan and I were joined at chemo today by Momsie (Logan's Grandmother).  It's always nice to have someone else there, so we REALLY appreciate her making the trip down to join us.

We were treated to 2 special events today.  First, Flashes of Hope returned for another photo shoot and Logan enjoyed showing off his bright personality in front of the camera.  Second was a new regular event added to the clinics daily routine, 2PM Happy feet dance party.  All of the patients and nurses joined together in the hall with instruments and smiles to sing and dance an encouraging song and just have fun.  Its amazing how such a small thing can brighten up otherwise sad faces. Song choice could not have been a better fit to encourage these kids that things will get better. (Check out lyrics to today's song here)

Nothing too different medically about this session.  We spent a lot of time talking to the doctors about managing behaviors/ADHD.  This is a topic of a whole other post for another day.  For the purpose of this post, we have started the ball rolling on a couple of things that will hopefully help manage this portion of Logan's condition. 

Logan did great, although I feel like that's a given at this point.  We ALMOST made it out of there being able to uphold our record of not throwing up at infusion, but Logan did have a minor upchuck when we got to the car.  Once we got home and got another dose of anti nausea meds, Logan was ready for his all night feeding frenzy.  Given the limited intake for the day, I don't really blame him.  Starting at around 3 PM Logan ate: 1 yogurt, 2-3 helpings of veggie fries, 2-3 helpings of pirates booty, an apple, a serving of grapes, a salad, piece of garlic toast, about 3 helping of baked ziti, 1/2 dozen strawberries and whatever other food he managed to sneak when no one was looking.  Pretty good for someone who, just moments earlier was looking quite green.

Thankfully the anti nausea meds are able to manage things pretty well although he's testing their limits.  As I'm sure I've stated before, Logan gets just a little bit sicker after every treatment.  This is evident the consistent increase on his use of the anti-nausea meds.  When he started, Logan didn't need any more than his pre-med dose to keep the nausea at bay. Since then, we've had to start giving him extra doses after his treatment up to several days after.  Most recently, a 2nd anti-nausea med was introduced in his pre-meds to double up on power.  Up until today anti-med#2 has done the trick.  Today, even being on 2 concurrent meds, he managed to throw up.  I'm hoping we can continue to hold off the sickness enough for awhile, so we aren't doing any more med-adjusting than we really need to.

After Logan threw up in the car, looking like he was hold back more, he asked, " Mommy, if I throw up, will I still be a strong boy?!?" As if a moment of weakness, that he has no control over, would make him any less of a fighter. All I could do is reassure him that he will ALWAYS be a strong boy and that he is the strongest boy I know.

Tuesday, June 3, 2014

More nausea.

I know I'm a little behind with updates from Logan's previous chemo session, as we are about to have his next.  I have been super busy with work because it's the end of the school year and not only do I have to catch up on everything that I have missed, the schools decide they need XYand Z done before the last day. I will be a happy camper in about 3 weeks. Nothing like the last month of school to request new evals to be done.

My dad (Dude) came down again for the last session.  I'm not sure who is more tired/naps more on chemo day - Logan or Dude.  Everything was pretty standard.  One thing that stands out was his access.  Seemed they were training a new access nurse and she may not have been on target when sticking the needle in.  It bent, didn't make it all the way in the port and basically had to be taken out and tried again.  Attempt 2 (from an experienced nurse) made it in fine and we were on with the day.  Even through the poking and pulling, Logan did a great job.  He fussed a bit, but who wouldn't.  I wouldn't even classify it as crying.  Amazing!

Additional anti nausea meds held off the vomiting successfully again and he even made it through a yummy dinner.  Trouble came Friday at school when his morning dose of anti-nausea meds wore off.  I'll spare you the smelly chunky details.  Lets just say I picked him up to spend the rest of the day at home trying to get it under control.  The weekend was fine and his nausea has been under control since.

Until this morning.  Upon arriving at school, he began throwing up.  It's strange to have that reaction so late after a treatment, but it is not the first time we have seen it outside of the few days after.  A quick trip home to give a dose of meds, and it was back to school for him.  I know what you are thinking.  "Your son is throwing up and you send him to school anyway?!  how cruel!!"  Well, when I told Logan we had to go home to get meds, he fell out on the floor and cried "no, I feel better!!! I don't want to go home!"  Pretty sure he wouldn't have it any other way! He loves school and LOVES his teachers. 

The side effects are definitely building in his system and we are seeing more of a reaction for longer periods.  Thankfully we are able to keep it pretty well under control and have some good "off" time in between.  We have a couple days left before it's time to med up and do it all over again. 

Tuesday, May 20, 2014

NF Awareness

Bracelets Parker helped make in NF awareness colors
Last week was an "off" week for chemo but we remained very busy. This month, being NF awareness month, my mother-in-law (Momsie - as the boys know her) wanted to do a special event at her work to raise awareness for Neurofibromatosis as well as raise funds for the Children's Tumor Foundation, an organization which is "dedicated to improving the health and well-being of individuals and families affected by neurofibromatosis".  Visit their website to www.ctf.org for more information.
Meeting the Mayor

Momsie works for the Township of wonderful Toms River, NJ. Friday we set out to visit many of the township departments to collect donations and share a bit of Logan's story.  The boys had a great time handing out stickers and lollipops and meeting so many wonderful and generous people.

While we were there, despite his busy schedule (which included dealing with an overnight fire across the street from town hall) Mayor Thomas F. Kelaher took time to meet with us and hear a bit about what Logan has been going through.  The boys even managed to persuade him to to give them some trinkets off his desk.  Leave it for Logan to "steal" from the mayor.  We appreciate Mayor Kelaher taking time to visit with us and hear a little about NF.

Our collection tour also included a stop at the local police department.  Not only did they contribute to the cause, they gave the boys a private tour of the facility.  Highlights of the tour for the boys included banging the gavel on the judge's stand, visiting the jail cells and sitting in and turning on the siren of a police car.

Locked up

Order in the court!
Logan's best "I just got arrested" face



 All in all it was a great day to share information about NF and raise money to help support research and resources for families effected by NF.  I want to thank everyone that we met and contributed so generously to our cause.  A special Thank You to Mayor Kelaher, the Toms River Police department and Momsie. 

Friday, May 9, 2014

Nurses

Working in schools, I've heard a lot this week about "Teacher Appreciation".  After all, being "appreciated" one week a year totally makes up for all the hours, effort and dedication teachers put into their work, right? While I value and appreciate all the teachers I work with, as well as my children's teachers everyday, this week is also earmarked as a week to appreciate another very important and hard working group of people: Nurses.

When we started this medical journey with Logan, one thing became very clear. The nurses make all the difference. Sure, the doctors are the ones diagnosing, treating, monitoring, and basically calling all the shots. Don't get me wrong, we love our doctors. They are caring, responsive, entertaining and their job is clearly vital. But it's the nurses that are on the front lines.

iPad time in the art room
They are the ones carrying out the orders. They are the ones who stick these kids with needles. They are the ones giving them their meds. They are the ones caring for them as they get sick. These, among so many other things, are the duties of a good nurse. 

We are blessed to have not only good nurses, but great ones. Great nurses tell you, every time they see you, how much they love your cool Spider-Man shoes. They let you help and be a part of your medical treatment. They let you make decisions that are just as important as the doctor's, like if you want a spongebob sticker or a Spider-Man one (even though they know it's Spider-Man you are after).  They bring extra stickers because they know you're going to want one for your brother. They ask you questions about your brother, your cat, your school, because to them you are more than a patient. They ease your fears and make you feel strong. They reassure you that you are doing a great job. 

These are great nurses. These are the people that I am thankful for, not only this week, but every time we set foot in the clinic. These are the people that make this experience just a little less scary and a little but more like home. 

This weeks visit was a solo trip for me. Ryan wasn't feeling well and taking germs to an oncology clinic is just plain wrong. Even though Logan had his medicine in the morning, he was definitely more active than usual. Enough so that the doctors noted it and asked if the Ritalin was working. There was a good amount of screaming and yelling and crying and it had nothing to do with the needles or medicine. 

Going for a walk
We also discussed a mild concern of mine for Logan's occasional racing heart and deep breathing. Normally it wouldn't bother me, but given a family history (including my own) of heart issues, I thought it was worth mentioning. They sent us for an EKG. It was a great way to kill time while we waited for the pharmacy. The EKG looked fine. This will be something that we will keep our eyes on. 

The pharmacy was a record slow today. About a 2.5 hour wait for his medicine today. Thank God for the art room and very hard working art therapists!!

Pretty normal infusion today, with the one very exciting change that LOGAN DIDN'T THROWUP!!! A little extra pre dose halfway through his infusion seemed to do the trick. This is the first time in over 2 months that Logan has gotten through his infusion without getting sick. Hopefully this plan continues to work and  this will help Logan's recently decreasing outlook on his doctor visits. 

Friday, April 25, 2014

A long 2 weeks

The last two weeks had some ups and downs (more downs than ups.)

Up- I had a week off work.  (I work in schools so I get "built-in" vacation when the schools have breaks.)

Down- I spent most of that week cleaning up vomit and tending to a sick Logan and our original plans to spend that week visiting family for Easter had to be abandoned.

Up- We had a great time spending Easter with great friends.

Down- Not only did Logan go through 2 rounds of a stomach bug, as well as his usual chemo induced sickness, he experienced some random episodes of unexplained pain. 

Now, lets break it down.  Prior to Logan's last infusion, he had a "stomach bug".  As you may recall, he spent a couple of days throwing up and recovered just in time for his usual infusion, which triggered his next episodes of sickness.  Logan recovered from his chemo sickness just in time to get round 2 of the "stomach bug".  A couple more days of throwing up, and he finally (fingers crossed) got it out of his system.

The problem we face any time Logan gets sick, is figuring out what is related to the chemo and what is "normal" sickness.  Looking back it's pretty easy to distinguish what was "chemo vomiting" and what was "stomach bug" but in the moment, it's always a question on my mind.  My best solution is to give all the info to the doctors and let them decide what is important. 

Because Logan spent so much time throwing up and not eating (he was eating little to no food for 2 weeks straight), he lost a significant amount of weight, about 5 lbs.  While dropping 5 lbs would make no difference in my continuously increasing weight, for Logan's little body, it's a concern.  He was able to gain back some of his lost weight by this weeks infusion, but the doctors still noted the loss and gave their orders to get his weight back up.


The other events of the week revolved around some random episodes of pain.  Logan woke up screaming one night at 2AM about his cheek hurting.  I checked his cheek, inside and out, mouth, nose, ear (for infection) and I saw nothing to explain this pain. I attempted to ease the pain with a cool wash clothes, but that attempt was met with more screaming. I attempted to take his temperature, but just placing the thermometer in his mouth caused more screaming.  This went on for about 30 minutes before he settled back down and went black to sleep.  Two days later it happened again during dinner, only this time it was his nose.  While eating, he dropped his food, started screaming and grabbed his nose.  Thankfully this episode only last a couple of minutes. 

Confused and concerned, of course I head to the internet.  I try not to read too much into internet diagnoses, after all it is best to leave it to the professionals, but I can't help but do my own research.  There has to be some merit in it since it is what lead us to finding out that Logan even had NF.  I found some information that may be relevant, but I'm not trying to jump to conclusions.  After discussing this with the doctors, we don't really have any answers.  They are stumped.  While they would have expected this reaction from his first drug combo, his current medication is not known to cause these effects.  We will just wait and see if it happens again.

Smiling through the nausea
This weeks chemo appointment  was pretty standard.  My dad came down and took Ryan's place this week.  Because Logan has been getting sick from his treatments, it is starting to effect his overall demeanor at his appointments.  He has figured out that when he comes to the doctor, they do things to him that hurt and make him not feel good.  It is definitely not "fun" for him anymore.  This week, the pharmacy took longer than usual getting his meds ready, but this was really a blessing.  This gave Logan extra time to play in the art room and relax before it was time to get sick.  Logan has been able to tolerate about 2 hours of infusion before getting sick, but this week, just walking into the pod turned him green.  While it didn't actually start throwing up until about 2 hours in, he definitely had it on his mind from the start.

Prior to leaving, they gave Logan an extra dose of anti-nausea meds, which really seemed to make a difference.  Not only did he stop throwing up, he was talking about food non-stop and actually asking to eat, which is something that we have not seen too much of the last couple of weeks.  Once home, he ate, and tolerated,  a few snacks and a highly desired dinner.  He was even very upbeat and active, which is something that I rarely have seen after his chemo lately. 

The only other blip on the chemo radar was a rash that developed at the end of his infusion. These meds can cause allergic reaction and this is why they pre-med with benadryl.  When the nurse went to de-access him, we noticed a rash on his chest.  She called the doctor in to see it, but as quickly as it took for him to get there, it was gone.  This phantom rash is something that I hope is not another developing feature of his treatment, but I will definitely be keeping on eye open for in the future.

I'm hoping our next 2 weeks are uneventful and Logan can get a much needed reprieve from everything he has faced the last couple of weeks. 

Thursday, April 10, 2014

Stomach flu, MRI results and a new cycle

This week has been a long one.  Partial because we have been waiting to review Logan's MRI results and partially because we have been subject to a stomach flu throughout our household.

Logan had been acting off most of the weekend.  He wasn't really eating much and he just looked ill.  Sunday night it all began to make sense.  While sitting down at the dinner table, Logan began throwing up.  After he had stopped, I told him we would skip dinner and go sit down on the couch and watch a movie.  He insisted that he felt better and wanted to eat his dinner.  I didn't buy it and I'm glad I didn't.  He continued throwing up on and off till about 2AM when his system was finally empty.  I felt like it would be unusual for Logan to get ill from chemo randomly in the middle of an "off" week, so I had to assume a stomach flu.  On the one hand, a stomach flu would mean that the chemo wasn't effecting Logan, Good news.  On the other hand, it would mean that the rest of us were likely to succumb to the same fate, bad news.

A few hours later, when Ryan began throwing up, and then Parker was getting sick too, it was confirmed.  It was not the chemo making Logan sick.  Yay!!!??? ... right?  Somehow, I managed to avoid a similar fate.  Someone has to stay healthy right?  Who else is going to make a run to the store for Gatorade, make chicken rice soup or do 5 loads of vomit soaked laundry? 

After 24 hours on a limited diet and plenty of rest, everyone seems to be on the mend and life resumes as usual.

Last Monday Logan had his 7th MRI to evaluate any changes the chemo has had on his tumors.  I got a brief update from the neuro-oncology department that there were no significant changes on Logan's new MRI.  It was stable. This was enough to tide me over until our next appointment where we would get a chance to review it more in depth.  Thursday, we finally got to sit down and see it with our own eyes (not that we really know what we are looking at.)  Basically, the tumors didn't grow, they didn't shrink.  .

I have mixed feeling about this result.  My ideal outcome of course would be for the tumors to continue to shrink.  Don't get me wrong, Stable is good news.  It is not uncommon for tumors to be unaffected by treatment (as we experienced after the first round of chemo) or for them to stop responding to the chemo and continue to grow.  As long as they are not growing, I suppose I have to be satisfied. 

In addition to reviewing the MRI results and starting a new cycle, Logan was evaluated by his neuro-opthamologist. He passed his vision tests and even got to do some new exciting tests.  One of these was some kind of retinal scan.  Now, I can hold his head still till my arms fall off, but getting a 4 year old to keep his eyes still was a bit of a challenge.  He did probably the best he could.  Everything checked out with the neuro-opthamologist.  Next appointment in 3 months.

The final battle we had was dealing with the nausea.  After several weeks of ill results, the doctors decided to try a different anti-nausea drug.  This switch seemed to do the job, but only by a slim margin.  I had an entirely different ending to this paragraph and typed up and ready to go, but that didn't last.  Logan lasted through the entire session without throwing up, no matter how much he looked like he was going to.  We got home and through 1 viewing of his favorite Toy Story and then he lost it.  The change may have lessened and postponed the effects, but did not succeed in stopping it altogether.

Toward the beginning of his infusion, Logan made a plea, "I don't want to do this today".  I can't blame him, afterall, he just got over several days of feeling ill.  I can't even imagine what his little body is going through.  All I could do was encourage him to do his best and that in a few short hours he would be done and home to do whatever he wanted to.  What really struck me about his plea was the "not today" mentality.  He didn't cry about having to go through it, as I think most kids should, but instead it was as if he was saying "I know have to do it, but just give me a break."  I wish I could.

Tuesday, April 1, 2014

MRI 7


Today was MRI #7 which means we were out bright and early to get to the hospital. (Leaving the house at 5:30 AM in case you were wondering what classifies as  "bright and early"). There were two things I really wasn't looking forward to about the day.

Scared Silly
Dilated Eyes




















First of all, because Logan has to be sedated to get MRIs, he is not allowed any food or drink after a certain point. This means, no taking his pills in the morning. (Plus, I don't know if there is any contra-indication with the Ritalin and sedation drugs.)  Seems silly to worry about managing him without medication since we did for years, but it was definitely a concern, especially having to get up so early and not being able to eat/drink.  Part of me was curious to see how he would do without it.  To see if there was really a difference and if the medication was really necessary. This is a question I always come back to, because the last thing I wanted to do was to medicate him. After spending the morning with him unmedicated, I can say that the Ritalin DOES make a difference and I can confirm the merits of putting him on it (until I start questioning it again in about a month).

The second fear of my day was the moment prior to sedation. I knew I would survive the 60 minute wait till the MRI. It was the 60 seconds right before sedation that was going to be difficult. Knowing that Logan's fears start as soon as he sees the sedation room, I tried to be proactive in preventing this. We started talking about it the night before and came up with some ideas to get through it. Instead of crying, Logan's plan was that he was going to go into the room and sing Twinkle Twinkle Little Star for all the doctors. This worked amazingly well. Walking down the hall, one hand holding mine, the other the nurse's, Logan sang Twinkle the whole way into the room and up onto the bed. 

It was at this moment that Logan realized what was going to happen. Trying to get up off the bed, "I want to go for a walk mommy! I REALLY want to go for a walk!!"  What else can you do at that point than to just rip off the metaphorical bandaid?  With the mask on, he was off to sleep in a matter of seconds. Any longer and I would have been crying right along with him.

Overall, his MRI day was a good one. With lots of extra energy, Logan was lucky to have another little girl, same age, there to play with while we waited. The two seemed to to be instant best friends.  Given the emotional state of her mother, I would guess that this was her first MRI.  I wanted to tell her it gets easier, but I suppose I would have to convince myself of that first.

Now, we wait to hear from the doctors or harass them until they give us some answers. 

Friday, March 28, 2014

Another cycle done

Today marks the end of another cycle of chemo for Logan.  While he doesn't get an extra break between cycles now, it is marked with another MRI to see what effect, if any, the chemo has had on his tumors.  This will happen next week and we likely won't discuss the results until the following week at his usual appointment. Just to recap, The first cycle of chemo (Carboplatin/Vincristine) ended with additional tumor growth.  The second cycle (Avastin/Irinotican) ended with all tumors shrinking.  We are obviously hoping for additional positive results.  
 
















video

Today's session was like many others.  We were treated to a show in the waiting room which Logan REALLY enjoyed dressing up and participating in.  As usual, the pharmacy took quite a while getting his chemo ready so he had lots of quality time in the art room.  His infusion ran as usual, ending in nausea and the new norm, vomiting (which started about 15 seconds after the below pictures were taken)
Nauseous Logan 
Nauseous Logan trying to smile
Overall, Logan has done really well this cycle.  He continued to gain weight and skyrocket in height.  He does an amazing job with port accesses and, if I recall correctly, only had two ER visits this cycle.  The newest effects, vomiting during/after his infusion, is something we will have to keep in check moving forward.  
Current Cycle- back on track and looking healthy
Last Cycle- underweight w/drooping eye