MRI - 6 months off

As usually, it has been way too long since my last update.  As usual, I have a post all typed up and ready to go that I never posted. As usual, more has happened since the unposted update and I need to change my update.  Given the amount needed to cover and the ongoing status of some items, I will try to resist the mile long post that may result and cover it one item at a time.

Logan recently went in for another MRI.  This MRI marked the 6 month mark from being off chemo. To me, this would be the true test of whether or not he would be able to stay off chemo.  We were waiting for this MRI to decide if we would have his port removed so it was kind of a big deal.

Logan did great, as usual, during the MRI day.  I actually had to wait to tell him about it until the day of, not because he would be scared, but because he would be so happy to be going to the doctor that he would drive me crazy!  I would hear about once an hour, "is it time to go to the doctor yet?!?"  You can imagine after a couple of days of this, one learns to withhold this information until it is absolutely necessary.

A week later, we finally got to sit down with his doctors to review the MRI and talk about next steps. A week that feels like a year!  The good news is that the tumors of concern, the ones Logan was on chemo for, are still stable.  They have not grown or changed in the 6 months that he has been off chemo.  The bad news is there is a new area of concern.  (In true Logan fashion, stable MRI but new concern)

To better understand the situation let me explain a few things about brain tumors and MRIs as it relates to Logan. Keep in mind, I am no expert, so I may not be the best reporter. Though I have probably learned more from being a parent of a brain tumor kid than I had in my semesters of neuro anatomy in college and grad school. Logan's past MRIs have revealed 2 different kinds of "spots".  First there are the tumors.  These are the areas that have mass and have have grown over time.  These areas, however big or small, actually take up space in his brain.  This mass is the reason that Logan had to go on chemo.  As the tumors grew, they interfered with the functioning of his brain putting him at risk for many issues.

The other spots on his MRIs and are little more confusing.  Sometimes they are called "UBO" (unidentified bright objects), sometimes called lesions, sometimes called hyper-intensity.  Whatever you call them, there isn't much to them, which is good because Logan has a lot of them.  These "spots" are often found in brains that have incurred some kind of damage (ex, stroke, dementia, etc.) but they are also very common in NF and have been known to come and go on their own without causing any discernible effect.  They have no mass but for whatever reason show up on an MRI as little bright areas.

Back to Logan's MRI. One of these hyper-intense spots from Logan's previous MRIs appears to be materializing into an actual tumor.  It is going from being a "nothing spot" to obtaining mass and growing.  At this point the size of the tumor is still very small and should not be impairing any functioning.   His doctors think there is a good chance that this tumor may go away on its own.  There is an equally good chance that it will continue to grow.  Should this tumor grow considerably, we would need to discuss intervention again. After speaking with Logan's neuro-oncologist today, we got a sneak-peek of what that might entail.  For this kind of tumor, chemo is not the necessarily the recommended course, unless his other tumors also being to grow back.  If this is the only tumor of concern, they would likely recommend surgery to remove it.

For now, it's on to waiting for another 3 month MRI to see what this tumor decides to do (along with the other tumors).  The port will stay in another 3 month, as getting monthly port flushes are far less invasive than removing the port and having to put it back in, should we need it.  Thankfully, we have plenty of other issues to keep us busy for the next 3 months, but that is another post for another day.

Stupid bacteria

Just when you think it's safe to breathe, Logan throws a curve ball.  I try to not to get all excited about good news, because I know the possibility of bad news is right around the corner and with Logan it usually comes from left field. For instance.... Stable MRI - newly discovered tumor on his liver.  Stable MRI - Hip effusion leaving him unable to walk for weeks. After receiving the good news of Logan's first "off chemo" stable MRI, we were blindsided by another little complication we certainly were not expecting.

We have discussed recently with the doctors when Logan's port would come out because as long as it is in, Logan is at greater risk for life threatening infections.  Think about it, this port is a window into an otherwise closed system of blood supply for his entire body. This is why the fever protocol we follow is so important, although at times seems silly. Up until now we have had very little problem with it.  Occasional trips to the ER for antibiotics with no real bacterial threat ever present. UP UNTIL NOW.

Logan started feeling ill Sunday and complained of a sore throat.  At that point with a slight fever and sore throat my first thought was strep throat and my plan was to just take him to the pediatrician first thing Monday morning. As the night went on the fever continued to rise.  By the time we went to bed his fever was 102.  I started to think about the fever protocol, and in the back of my mind thought "he's off chemo, his blood counts aren't compromised, this can probably wait until the morning."  I gave him some Tylenol, cool wash cloth for his head and tried to get him to get some sleep.  He was clearly uncomfortable and the fever continued to rise and then next time I checked he was at 104.3.  Ok, it was time to call it.  4AM - We headed to the ER where we did the standard IV antibiotics, blood tests and set up a time to return for round two.

This is where things went a little differently.  When we arrived at the clinic for round 2, I got a call to tell me that the blood culture taken the previous night tested positive for bacteria.  It was determined that he would have to be admitted until they knew exactly what bacteria it was so they could assure they were using an appropriate antibiotic.  Here's the tricky thing about bacteria: apparently you have to wait for it to grow to a certain stage before it can be classified, and that takes time... a lot of time.  After several days in the hospital, being monitored and receiving IV antibiotics, they were able to get the answers from the blood culture that they needed and we were able to go home Thursday afternoon.

Once home, we got a package of medical supplies and medication delivered to the house and had a nurse come to the home to teach us how to administer IV meds.  Logan had 6 more at home doses of IV antibiotics to go.  It's pretty easy, just fairly inconvenient as this mean even more missed work.  He now has 2 more days of this before the nurse will come back to our house to de-access his port and he can hopefully go back to school and be done with all this bacteria drama.

On a side note: Since we did not expect when we went in to the clinic that we would be staying for multiple nights, we did not bring any supplies, including Logan's ADHD meds.  It took awhile to get them to approve and get him this drug from their pharmacy and Logan missed two doses.  Believe me when I say, these pills are a VITAL part of Logan's ability to function and my ability to stay sane!  Lesson learned - ALWAYS bring extra pills with us wherever we go!!!

3 months

I could give you several reasons why it has been so long since an update:  1. Life gets busy and I just haven't had time. 2. I've had several posts saved in draft form, just waiting for one addition piece of info to come so I can give a complete picture of the things that are going on and then another and another. 3. I just needed a break from thinking about it, writing about it, talking about it. 4. I just don't have anything to say. 5. All of these things being true in some capacity resulting in a complete lack of updates for quite some time. Needless to say, It's been awhile and I've got a lot to catch you up on. Lets see if I can remember where we were and what has happened....

NF Walk:

When I last left you, we had just completed the NF Walk in NJ. It was a great event and so incredibly wonderful to gather with friends and family, to rally around Logan and help support this cause.  Since the event, donations have continued to come in and I am so thrilled to be able to say that Team Logan raised over $10,000 for the Children's Tumor Foundation.  Thank you again to everyone who gave so generously and especially those that joined us at the walk!


Leg Pain:
We left you on a cliffhanger of some unexplained leg pain.  To recap - Logan had been unable to walk for about 2 weeks. Most of that time was spent managing his pain and tending to his every need as he was unable to move in the slightest.  After several visits to the doctors, several different pain medications, x-rays and an MRI, it was determined that the pain was caused by some fluid in his hip joint.  This fluid was suspected to be from a viral infection that he had previously, better known as the dreaded "stomach bug".  A couple weeks on an anti-inflammatory drug and several more weeks and just waiting for it to return to normal, Logan was back to "normal".  While I certainly did not enjoy seeing him in such pain and so helpless, it was kind of nice to be able to leave a room and know that he wasn't going to get into anything that he shouldn't.


Life Chemo-Free:
We have been chemo free for 3 months now.  During that time we have had lots of fun family time, celebrating 2 birthdays (Parker's and Logan's), Halloween, Thanksgiving, Christmas, New Years.  We have also gone in for monthly flushes of his port, follow-ups with his doctors to monitor him, and of course the ever important MRI.  While I have certainly enjoyed the lower frequency of appointments and doctor visits, Logan has missed it.  Remember, he LIKES going to the doctors.

He got some much sought after extra doctor time when there was some concern about him possibly having absent seizures. Because he is at greater risk for seizures, due the all the stuff going on in his brain, the doctors wanted to evaluate this.  Logan got to have a fun "sleepover" at the hospital where they hooked him up to dozens of electrodes and monitored his brain activity overnight.  Thankfully Logan was so tired, he spent most of the night resting, watching movies and sleeping.  This made the task of entertaining him and keeping him out of trouble much easier. The results showed no seizure activity, which we pretty much expected, since finding seizures can be pretty tricky given their highly unpredictable nature.

Logan's last MRI in January showed no in change in the tumors which is great news.  This means he tolerated being off chemo without the tumors growing back or new tumors growing.  This has bought us another 3 months to monitor him and make sure the tumor stay away.  If he gets through another MRI in April without growth, we will be able to have his port removed.  From there, they will continue to monitor him for tumor growth one MRI at a time.

At his last appointment, everyone in the clinic was shocked at how much he has grown.  It was the topic of discussion from the exam room to the hallways.  His doctors took particular note of this as it could be an indicator of a more serious issue.  There is a chance that this particularly dramatic growth spurt could be an indication that Logan is beginning puberty.  Yes you heard me right, my 5 year old may be in the beginning stage of puberty. Due to NF and the location of Logan's tumors, he is at greater risk of starting precocious puberty.  While it's more likely because he comes from a tall family, it is something that we have been told to monitor so we will be keeping an eye out for those obvious signs of puberty.  

Our biggest battle over the last few months has been the behaviors!  You may remember that the doctors switched Logan from Ritalin to a non-stimulate drug.  You may also remember us saying that this medicine does not quite do what it needs to do.  While it certainly does SOMEthing, we continue to battle the actions, attitudes and energy of a kid very much afflicted by ADHD, even after several dose increases.  We are in the process of initiating evaluations that will give us some answers and ideas of where to go from here.  We are also seeking out educational testing as Logan is starting Kindergarten in the fall and we definitely don't think that he will be successful without additional support.   It's going to be a long and exhausting journey.

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.

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.

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.)  

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!)