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


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.)