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.