Thursday, April 9, 2015

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.

Monday, February 2, 2015

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!!!

Monday, January 19, 2015

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.