Sunday, July 20, 2014


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


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.

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.