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!)

End of the summer catch-up

I've been a little behind on updating you all as I have been pretty busy. The last month has been filled with some extra appointments and some fun vacation.  I will try my best to remember and fill you in on it all.

When I last left you, we were "stumped" by the mass on Logan's liver.  The doctor's were expecting and hoping that it was just another "normal" NF tumor.  Logan had another MRI on his abdomen to further investigate.   Finally, at Logan's usual chemo appointment that same week we were able to get an answer. After reviewing his MRI and consulting with other specialists, the doctors believe this mass to be a cavernous hemangioma.  I was expecting them to say it was just another "normal" NF related plexiform neurofibroma, so this answer was a bit of a surprise.  I'll save you the trip to google.com.  Basically, a hemangioma is a collection of blood vessels that begin to cluster and grow like a tumor.  They are typically very benign "tumors" and cause no problems, although, as with most things there is a risk of complications.  The typical treatment is no treatment at all.  Monitoring for problems is usually sufficient. Occasionally, surgery to remove the mass is recommended.  They have even been known to treat these with Avastin, which Logan is currently getting.  His doctors were slightly concerned over the large size of this hemangioma but have determined that since he appears to be unaffected by it, the "wait and watch" approach would be sufficient.

His usual chemo appointment was pretty unremarkable.  He managed his nausea pretty well.  His sleep, or lack of sleep I should say, was a bit of an issue on Thursday and Friday. Friday morning was a marathon of crying, screaming, tantruming, and whatever else you can think of.  I'm pretty sure he cried/screamed for at least 4 hours straight.  Thankfully that wore him out and a good afternoon nap later, he was back to "normal" (I use that term very loosely).

Fishing with Uncle Bobby

That week we were also able to get in some fun activities. With my dad down to help out, (and major help he was), we were able to entertain the kids with a morning at the trampoline park and an afternoon of fishing.  One thing I've been working on, is getting Logan more active.  He'd be happy to sit around all day and physical activity is usual met with whining and request to go home, go inside, or sit down.  Feels strange to say that he suffers from ADHD, when he is not particularly active, but it's a whole different kind of hyper activity.

The following week brought our highly anticipated appointment with the neurologist that specializes in ADHD associated with NF.  After a lot of discussion, we decided to stop the ritalin and try a non-stimulate drug instead.  This drug effects his behavior in a very different way.  The jury is still out on it's effectiveness.  In addition, we are starting the process to have him evaluated.  This will hopefully give us a better picture of why Logan is doing what he is doing and how we can help him.

After we had all of our appointments out of the way, it was time for some fun.  We were able to get away for a vacation, which is a very rare occasion.  We met the rest our my family in Duck, NC and spent a week in the sun and sand.  It was a great and relaxing time (thanks to my family stepping  in with some extra supervision of my kids.)   I'm so thankful to have been able to get away and just have fun with family.

Once vacation was over it was home to reality.  Back to work for me, back to chemo for Logan and in the next couple of weeks, back to school for the kids.

Stumped

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.

Ultrasound

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.

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!

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.

Results/Infusion:
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.  

Busy week

The past week or so has been crazy in our house.  I have been working like crazy to finish up the school year at the 2 school where I do therapy.  This requires a lot of paperwork, documentation, last minute evaluations, meetings and last chance for make-up therapy.   Logan, of course, did his part in making this as difficult as possible.

The first offense was last Friday, when Logan threw up upon arriving at school.  He has been doing this every "off chemo" week for the last 4 treatments. Because these episodes are happening so far removed from infusion (a week or more) it can be assumed that it is not related to the chemo.  So why is he throwing up every other week?  The doctors don't know.  I don't do well with not knowing, so I visit my good friend Google.  Google is the kind of friend that thinks he knows everything and gives you advice that you really don't want to listen to.  He has a tendency to jump to conclusions and get into your head. This is probably even worse than not knowing.  I really try not to take the stuff I read on Google too seriously, but you can't help but read into some of it.  The 2 theories discussed with the doctors are 1. the tumors (or new tumors) are growing causing increase pressure in the brain leading to unexplained vomiting (not totally illogical since we know he has tumors and is very likely to grow more tumors) and 2. hypoglycemia causing early morning vomiting (again, not totally illogical since it only happens in the morning after a long night of not eating). Since Logan is scheduled for an MRI next week, we will be able to confirm/rule out tumor involvement.  Now we wait.

The 2nd offense was Tuesday when Logan had to be picked up from school due to some very aggressive diarrhea.  Diarrhea is a very common side effect of his chemo, so a quick dose of medicine and little diet adjusting and we were good to go.

Wednesday started a string of doctor appointments.  Wednesday he was seen by the cardiologist.  This was to clear him for a change in medication for ADHD.  They completed a thorough assessment including an EKG and ECHO.  Logan did an INCREDIBLE job sitting still for the long ECHO and was cleared as everything looked "fine".  Our adventure at the cardiologist was not over quite yet.  Due to a history of some pretty serious life threatening heart issues in my family, the doctors wanted to be EXTRA sure Logan was clear, so they put him on a 24 hour Holter. My family is no stranger to the holter, but for those of you that don't know, a holter is basically a heart monitor that you wear for usually 24-48 hours.  With it, they are able to assess your hearts electrical functioning within your normal daily routine.  Logan did fine wearing it, although occasionally got tangled up in the wires. 

Thursday was his normal chemo day, but we started out with a trip to see his neuro optomologist first.  A few vision assessments and scans later, Logan was given the 'OK' again and were were off to chemo.  Another "normal" chemo.  They increased some of his pre-meds to try to combat the still increasing nausea.  As I mentioned, much of the discussion with the doctors this round was trying to figure out the unexplained vomiting.  We are also still holding out for talking about the behaviors/medication, but they are trying to get us in with one of the other neurologists that specializes in NF related ADHD behavior problems. Hopefully that will be able to happen soon.

Logan did a great job (duh) and actually slept through his entire infusion (in part I'm sure to the increase in premeds).  He did well most of the evening and again was able to eat very healthy portions of snacks/dinner.  The trouble with that was that when his anti-nausea meds wore off around 2AM, mommy had to clean up those very healthy portions of snacks/dinner.  I can not wait for the day when Logan can manage to get to a receptacle before he starts. 

Tuesday Logan will get another MRI.  As always, I'm on edge and anxiously await these result, even more so this time as we have this random vomiting hanging over our heads. 

To sum it all up, in one week we have seen vomiting and diarrhea, been to/scheduled for 4 different doctor visits and in the end will have been seen by no less than 15 nurses and 7 doctors.  Oh, and I managed to get all my work done. 

ADHD

The biggest battle we have had in all Logan's medical issues is, without a doubt, managing behaviors. Logan is predisposed to having issues with ADHD because of his disorder. Now, before I start a war on the opinions of ADHD, I know that there are many opinions on the validity of diagnosing ADHD and even more on the treatment of it.  As someone who works in schools and has a child who struggles with behaviors, I attest that it is a very real problem.  While I do agree that people may jump to that diagnosis very quickly, and medicate as an "easy fix" without trying other interventions, I also believe that there are valid cases that require such interventions for the benefit of the child.

Best attempts at sitting still

I never, in a million years, thought I would say that with as much confidence as I do.  A little background: as a child I struggled in school.  I was diagnosed with ADD and put on medication to help support my education.  I hated it.  It's difficult to explain, but I just didn't feel quite myself while on it.  Once I was old enough to compensate for my weaknesses, I stopped taking it.  I swore I did not want that for my kids.

Then I became a school-based speech therapist.  I began working with kids who were the textbook examples of what ADHD looks like.  These kids can't control themselves or their actions.  I know it sounds silly to say.  Who can't control their own actions?  It's easy, right?  Well, you don't believe it until you really see it. It is truly indescribable and sad to see them battling so much within themselves.

What he can do in about 90 seconds

But it's fun to play with the blinds

4AM make-overs (not pictured: Logan and the cat)

Finally Logan came along.  In the last 2 years, Logan has developed hyperactivity and attention based behaviors that have severely impacted his life.  I know he's only 4, and these things are expected of someone his age, but it goes beyond that of a typical pre-schooler.  He truly lacks impulse control and does things that are inappropriate, destructive, or down right dangerous.  He knows right from wrong.  He can tell you the things that he should not do.  But he can not stop himself from doing them.  A highlight of some of his more common and most often repeated actions : pulling the fire alarm at school, drawing on the walls/furniture, drawing on the cat, dancing naked at school, throwing things in the toilet, stealing things (constantly), throwing tantrum, attempting to play with dangerous items (scissors, knives, razors, lighters, etc.), walking/running away in public, running into the street, peeing on himself, pooping on the bathroom floor, general destructive behavior. If left unattended, Logan can destroy a room in about 90 seconds.


In addition to the behaviors, Logan is unable to sit and attend in order to learn new information. He can pick an activity and before he even has a chance to start that activity, he has moved on to another.  This can happen in rapid succession until he has either found the rare object that can hold his attention or he runs out of options.  At school, unless the teacher is sitting with him one-on-one, he can't participate and even then it's a struggle. I have overheard teachers at his school (on multiple occasions) refuse to allow him to be a part of their classroom. As a mother, it breaks my heart.

Finally there is the developing aggression. Yelling, screaming, tantruming, aggressive backtalk, hitting/kicking, crying.  All at the drop of a hat.

Logan started taking a low dose Ritalin a few months ago and for awhile we saw a great change.  Once we played around with the dose, we found that the behaviors decreased and his attention increased.  He was finally able to participate in class activities.  He wasn't initiating destructive behaviors (as much).  He was easily redirect to appropriate behavior.  About a month ago, the medication started to not work as well.  His morning dose continues to give him some benefit for a brief amount of time, but his afternoon dose has no effect.  We started to receive reports of behaviors coming back at school and we certainly saw it for ourselves at home.

 We have spoken at length about finding another option.  Different medication?  Stronger dose? Extended release?  Who knows.  Before we can discuss another plan, Logan has to be cleared by Cardiology.  These medications can cause your heart to race or exacerbate existing heart problems.  Since my family, including myself, has a history of cardiac issues, Logan will require a thorough work-up before they feel comfortable changing he prescription.   Once he is cleared, we will continue to work on a plan to best support Logan.

Strong boy

Today I thought I'd give a timely report. An update on the actual day of chemo?!?  Unheard of!

Logan and I were joined at chemo today by Momsie (Logan's Grandmother).  It's always nice to have someone else there, so we REALLY appreciate her making the trip down to join us.

We were treated to 2 special events today.  First, Flashes of Hope returned for another photo shoot and Logan enjoyed showing off his bright personality in front of the camera.  Second was a new regular event added to the clinics daily routine, 2PM Happy feet dance party.  All of the patients and nurses joined together in the hall with instruments and smiles to sing and dance an encouraging song and just have fun.  Its amazing how such a small thing can brighten up otherwise sad faces. Song choice could not have been a better fit to encourage these kids that things will get better. (Check out lyrics to today's song here)

Nothing too different medically about this session.  We spent a lot of time talking to the doctors about managing behaviors/ADHD.  This is a topic of a whole other post for another day.  For the purpose of this post, we have started the ball rolling on a couple of things that will hopefully help manage this portion of Logan's condition. 

Logan did great, although I feel like that's a given at this point.  We ALMOST made it out of there being able to uphold our record of not throwing up at infusion, but Logan did have a minor upchuck when we got to the car.  Once we got home and got another dose of anti nausea meds, Logan was ready for his all night feeding frenzy.  Given the limited intake for the day, I don't really blame him.  Starting at around 3 PM Logan ate: 1 yogurt, 2-3 helpings of veggie fries, 2-3 helpings of pirates booty, an apple, a serving of grapes, a salad, piece of garlic toast, about 3 helping of baked ziti, 1/2 dozen strawberries and whatever other food he managed to sneak when no one was looking.  Pretty good for someone who, just moments earlier was looking quite green.

Thankfully the anti nausea meds are able to manage things pretty well although he's testing their limits.  As I'm sure I've stated before, Logan gets just a little bit sicker after every treatment.  This is evident the consistent increase on his use of the anti-nausea meds.  When he started, Logan didn't need any more than his pre-med dose to keep the nausea at bay. Since then, we've had to start giving him extra doses after his treatment up to several days after.  Most recently, a 2nd anti-nausea med was introduced in his pre-meds to double up on power.  Up until today anti-med#2 has done the trick.  Today, even being on 2 concurrent meds, he managed to throw up.  I'm hoping we can continue to hold off the sickness enough for awhile, so we aren't doing any more med-adjusting than we really need to.

After Logan threw up in the car, looking like he was hold back more, he asked, " Mommy, if I throw up, will I still be a strong boy?!?" As if a moment of weakness, that he has no control over, would make him any less of a fighter. All I could do is reassure him that he will ALWAYS be a strong boy and that he is the strongest boy I know.

More nausea.

I know I'm a little behind with updates from Logan's previous chemo session, as we are about to have his next.  I have been super busy with work because it's the end of the school year and not only do I have to catch up on everything that I have missed, the schools decide they need XYand Z done before the last day. I will be a happy camper in about 3 weeks. Nothing like the last month of school to request new evals to be done.

My dad (Dude) came down again for the last session.  I'm not sure who is more tired/naps more on chemo day - Logan or Dude.  Everything was pretty standard.  One thing that stands out was his access.  Seemed they were training a new access nurse and she may not have been on target when sticking the needle in.  It bent, didn't make it all the way in the port and basically had to be taken out and tried again.  Attempt 2 (from an experienced nurse) made it in fine and we were on with the day.  Even through the poking and pulling, Logan did a great job.  He fussed a bit, but who wouldn't.  I wouldn't even classify it as crying.  Amazing!

Additional anti nausea meds held off the vomiting successfully again and he even made it through a yummy dinner.  Trouble came Friday at school when his morning dose of anti-nausea meds wore off.  I'll spare you the smelly chunky details.  Lets just say I picked him up to spend the rest of the day at home trying to get it under control.  The weekend was fine and his nausea has been under control since.

Until this morning.  Upon arriving at school, he began throwing up.  It's strange to have that reaction so late after a treatment, but it is not the first time we have seen it outside of the few days after.  A quick trip home to give a dose of meds, and it was back to school for him.  I know what you are thinking.  "Your son is throwing up and you send him to school anyway?!  how cruel!!"  Well, when I told Logan we had to go home to get meds, he fell out on the floor and cried "no, I feel better!!! I don't want to go home!"  Pretty sure he wouldn't have it any other way! He loves school and LOVES his teachers. 

The side effects are definitely building in his system and we are seeing more of a reaction for longer periods.  Thankfully we are able to keep it pretty well under control and have some good "off" time in between.  We have a couple days left before it's time to med up and do it all over again. 

NF Awareness

Bracelets Parker helped make in NF awareness colors

Last week was an "off" week for chemo but we remained very busy. This month, being NF awareness month, my mother-in-law (Momsie - as the boys know her) wanted to do a special event at her work to raise awareness for Neurofibromatosis as well as raise funds for the Children's Tumor Foundation, an organization which is "dedicated to improving the health and well-being of individuals and families affected by neurofibromatosis".  Visit their website to www.ctf.org for more information.

Meeting the Mayor

Momsie works for the Township of wonderful Toms River, NJ. Friday we set out to visit many of the township departments to collect donations and share a bit of Logan's story.  The boys had a great time handing out stickers and lollipops and meeting so many wonderful and generous people.

While we were there, despite his busy schedule (which included dealing with an overnight fire across the street from town hall) Mayor Thomas F. Kelaher took time to meet with us and hear a bit about what Logan has been going through.  The boys even managed to persuade him to to give them some trinkets off his desk.  Leave it for Logan to "steal" from the mayor.  We appreciate Mayor Kelaher taking time to visit with us and hear a little about NF.

Our collection tour also included a stop at the local police department.  Not only did they contribute to the cause, they gave the boys a private tour of the facility.  Highlights of the tour for the boys included banging the gavel on the judge's stand, visiting the jail cells and sitting in and turning on the siren of a police car.

Locked up

Order in the court!

Logan's best "I just got arrested" face

 All in all it was a great day to share information about NF and raise money to help support research and resources for families effected by NF.  I want to thank everyone that we met and contributed so generously to our cause.  A special Thank You to Mayor Kelaher, the Toms River Police department and Momsie. 

Nurses

Working in schools, I've heard a lot this week about "Teacher Appreciation".  After all, being "appreciated" one week a year totally makes up for all the hours, effort and dedication teachers put into their work, right? While I value and appreciate all the teachers I work with, as well as my children's teachers everyday, this week is also earmarked as a week to appreciate another very important and hard working group of people: Nurses.

When we started this medical journey with Logan, one thing became very clear. The nurses make all the difference. Sure, the doctors are the ones diagnosing, treating, monitoring, and basically calling all the shots. Don't get me wrong, we love our doctors. They are caring, responsive, entertaining and their job is clearly vital. But it's the nurses that are on the front lines.

iPad time in the art room

They are the ones carrying out the orders. They are the ones who stick these kids with needles. They are the ones giving them their meds. They are the ones caring for them as they get sick. These, among so many other things, are the duties of a good nurse. 

We are blessed to have not only good nurses, but great ones. Great nurses tell you, every time they see you, how much they love your cool Spider-Man shoes. They let you help and be a part of your medical treatment. They let you make decisions that are just as important as the doctor's, like if you want a spongebob sticker or a Spider-Man one (even though they know it's Spider-Man you are after).  They bring extra stickers because they know you're going to want one for your brother. They ask you questions about your brother, your cat, your school, because to them you are more than a patient. They ease your fears and make you feel strong. They reassure you that you are doing a great job. 

These are great nurses. These are the people that I am thankful for, not only this week, but every time we set foot in the clinic. These are the people that make this experience just a little less scary and a little but more like home. 

This weeks visit was a solo trip for me. Ryan wasn't feeling well and taking germs to an oncology clinic is just plain wrong. Even though Logan had his medicine in the morning, he was definitely more active than usual. Enough so that the doctors noted it and asked if the Ritalin was working. There was a good amount of screaming and yelling and crying and it had nothing to do with the needles or medicine. 

Going for a walk

We also discussed a mild concern of mine for Logan's occasional racing heart and deep breathing. Normally it wouldn't bother me, but given a family history (including my own) of heart issues, I thought it was worth mentioning. They sent us for an EKG. It was a great way to kill time while we waited for the pharmacy. The EKG looked fine. This will be something that we will keep our eyes on. 

The pharmacy was a record slow today. About a 2.5 hour wait for his medicine today. Thank God for the art room and very hard working art therapists!!

Pretty normal infusion today, with the one very exciting change that LOGAN DIDN'T THROWUP!!! A little extra pre dose halfway through his infusion seemed to do the trick. This is the first time in over 2 months that Logan has gotten through his infusion without getting sick. Hopefully this plan continues to work and  this will help Logan's recently decreasing outlook on his doctor visits. 

A long 2 weeks

The last two weeks had some ups and downs (more downs than ups.)

Up- I had a week off work.  (I work in schools so I get "built-in" vacation when the schools have breaks.)

Down- I spent most of that week cleaning up vomit and tending to a sick Logan and our original plans to spend that week visiting family for Easter had to be abandoned.

Up- We had a great time spending Easter with great friends.

Down- Not only did Logan go through 2 rounds of a stomach bug, as well as his usual chemo induced sickness, he experienced some random episodes of unexplained pain. 

Now, lets break it down.  Prior to Logan's last infusion, he had a "stomach bug".  As you may recall, he spent a couple of days throwing up and recovered just in time for his usual infusion, which triggered his next episodes of sickness.  Logan recovered from his chemo sickness just in time to get round 2 of the "stomach bug".  A couple more days of throwing up, and he finally (fingers crossed) got it out of his system.

The problem we face any time Logan gets sick, is figuring out what is related to the chemo and what is "normal" sickness.  Looking back it's pretty easy to distinguish what was "chemo vomiting" and what was "stomach bug" but in the moment, it's always a question on my mind.  My best solution is to give all the info to the doctors and let them decide what is important. 

Because Logan spent so much time throwing up and not eating (he was eating little to no food for 2 weeks straight), he lost a significant amount of weight, about 5 lbs.  While dropping 5 lbs would make no difference in my continuously increasing weight, for Logan's little body, it's a concern.  He was able to gain back some of his lost weight by this weeks infusion, but the doctors still noted the loss and gave their orders to get his weight back up.


The other events of the week revolved around some random episodes of pain.  Logan woke up screaming one night at 2AM about his cheek hurting.  I checked his cheek, inside and out, mouth, nose, ear (for infection) and I saw nothing to explain this pain. I attempted to ease the pain with a cool wash clothes, but that attempt was met with more screaming. I attempted to take his temperature, but just placing the thermometer in his mouth caused more screaming.  This went on for about 30 minutes before he settled back down and went black to sleep.  Two days later it happened again during dinner, only this time it was his nose.  While eating, he dropped his food, started screaming and grabbed his nose.  Thankfully this episode only last a couple of minutes. 

Confused and concerned, of course I head to the internet.  I try not to read too much into internet diagnoses, after all it is best to leave it to the professionals, but I can't help but do my own research.  There has to be some merit in it since it is what lead us to finding out that Logan even had NF.  I found some information that may be relevant, but I'm not trying to jump to conclusions.  After discussing this with the doctors, we don't really have any answers.  They are stumped.  While they would have expected this reaction from his first drug combo, his current medication is not known to cause these effects.  We will just wait and see if it happens again.

Smiling through the nausea

This weeks chemo appointment  was pretty standard.  My dad came down and took Ryan's place this week.  Because Logan has been getting sick from his treatments, it is starting to effect his overall demeanor at his appointments.  He has figured out that when he comes to the doctor, they do things to him that hurt and make him not feel good.  It is definitely not "fun" for him anymore.  This week, the pharmacy took longer than usual getting his meds ready, but this was really a blessing.  This gave Logan extra time to play in the art room and relax before it was time to get sick.  Logan has been able to tolerate about 2 hours of infusion before getting sick, but this week, just walking into the pod turned him green.  While it didn't actually start throwing up until about 2 hours in, he definitely had it on his mind from the start.

Prior to leaving, they gave Logan an extra dose of anti-nausea meds, which really seemed to make a difference.  Not only did he stop throwing up, he was talking about food non-stop and actually asking to eat, which is something that we have not seen too much of the last couple of weeks.  Once home, he ate, and tolerated,  a few snacks and a highly desired dinner.  He was even very upbeat and active, which is something that I rarely have seen after his chemo lately. 

The only other blip on the chemo radar was a rash that developed at the end of his infusion. These meds can cause allergic reaction and this is why they pre-med with benadryl.  When the nurse went to de-access him, we noticed a rash on his chest.  She called the doctor in to see it, but as quickly as it took for him to get there, it was gone.  This phantom rash is something that I hope is not another developing feature of his treatment, but I will definitely be keeping on eye open for in the future.

I'm hoping our next 2 weeks are uneventful and Logan can get a much needed reprieve from everything he has faced the last couple of weeks.