Logan

End of Round 5 (inpatient aggressive chemo)/Beginning of Round 1 (outpatient maintenance chemo)/End of Round 1

9/20/17 – WOW!  I can’t believe we are done with the better part of being inpatient for 6 months and aggressive chemotherapy.   It feels like the past 6 months have flown by but trust me, they didn’t!  It was rough and still continues to be at times.  Living in the hospital is the worst, having to pack a bag to stay with your baby for weeks on end is not the way any new mom expects to live their life!  Thankfully I was able to come home every few days, even if it was just for a shower or to get a good nights sleep.

But now, the real work begins!

There is still no visible sign of the tumor so Logan is technically cancer- free but I am not comfortable using that term.  Doctor’s call is NED or no evidence of disease.  He technically won’t be fully cancer-free until he has been in remission for 5 years.

It’s actually becoming a very lonely experience.  My husband is back to work.  My in-laws are still around but I am starting to feel guilty asking my mother in law for help all the time.  Both of my parents work.  All of our friends work.  So, it’s always just me during the day…alone, to not only take care of a sick baby but to also maintain a household and get some of my own work done, not to mention trying to work out and do “me” stuff.  How hard is it to take care of a sick baby….well first it starts at 7am when he wakes up.  He gets 4 medicines by 9am.  We then do some physical therapy, stretches, sitting up, etc.  We also practice the bottle.  By the time we are done with that it’s typically time for his morning nap (if he feels like taking one that day).  I then have at least one load of laundry to do from the morning or the day before.  I try to update his followers, check both my personal and business emails then it’s time to sit him up and try the bottle again.  Then on days we don’t have a doctor appointment or other places to be, I have phone calls to make for him.  Whether it be scheduling a doctor appointment, an at home visits, early intervention, insurance, etc.  It’s always something.  I am legit overwhelmed and have a million things going on in my head at all times.

 

11/5/17 – So much has changed since I began writing this blog post back in September.  We are now finishing up the first round of outpatient chemo, even with the hiccup we had.  My in-laws left almost 2 weeks ago now, so it’s mostly just Kevin and I.  THANK GOD Sari lives down the street and has been helping out A LOT!!!  There are very few people I trust Logan with and it’s not because I don’t think they will treat him well, he needs a lot of work.  Sari has experience with not just cancer and special needs children but she also ran a children’s play center.

I am trying to work more, as fourth quarter is the busiest time in my business.  I actually have to get up at 4am tomorrow, go to an enrollment, bring Logan to clinic then head back to my enrollment.  This is my life.  But I will do WHATEVER it takes to not only help my son but also my own sanity!  😉

People always ask, “Aren’t you happy to be home?”  And yes, I am BUT it is so MUCH HARDER at home.  I don’t have a call button to push for help if Logan gets sick in the middle of the night, or if I need a break to take a shower or go get a coffee.  I am “ON” ALL day long.  I get up at 5am, get Logan’s meds ready, work out (if I’m lucky) and get his feed up by 6am.  Then, I have to take a shower and get ready before my husband gets up to go to work, otherwise a shower doesn’t happen.  From there, the day is really a blur.  Between Logan’s feed going up and down about 4 times a day, he has therapy 4 days a week at home, laundry, dishes, phone calls, doctor appointments, emails, work, cleaning….the list goes on.  The next thing I know, my husband is home from work and it’s time to make dinner.  Then Logan’s feed goes up one last time and his nightly meds along with having to “flush” his PICC lines.

I have my moments, hard days, etc. but looking at this precious little boys face gives me the strength to keep going.  I finally made the decision to see a counselor and I did like him, that’s half the battle.  It’s just frustrating though because no matter who I talk to (professional or not), they all say the same thing….”you have every right to feel the way you do.”  Which is absolutely true, I just wish I didn’t feel some of the ways a lot of the time.  There’s times that I am miserable or cry for “no” reason.  Or I am mean, just because.  No one should have to live this life.  The one thing I did appreciate from this counselor was that he said, I need to reach out to people more instead of waiting for them to reach out to me.  He said because most people don’t want to intrude or know how to act or what to say, so I need to be the one to initiate the conversation.  This was an eye opener for me because I was feeling and thinking the opposite, that people needed to reach out to me.  But the truth is, the adrenaline is gone, the mama fight mode is faded and the reality of our lives is setting in.  He also told me that I have every right to grieve or to not want to do certain things with friends that have “normal” children, and that it was normal to feel that way.  That made me feel good.  It’s hard because I want to do things but not only am I super overprotective of Logan and his immune system but I also find myself comparing Logan’s progress to friends’ kids who are the same age or even younger.  And it’s so much easier said then done not to do that!  I’m working on it!

I wanted to make sure I posted something before we start Round 2 of maintenance chemo tomorrow.  Logan’s counts are good and he has been progressing so well that we are starting Round 2 a week early!  This kid is a true Rockstar!

Oh, and he can now hold his head up and can almost sit up on his own!!!!

I’m working on getting more consistent help (thank you Sari) and getting somewhat of a schedule.  So, I will do my best to update the blog more often.

But with that said….the next almost two weeks will be all about putting the finishing touches on this #TinySuperhero FIRST BIRTHDAY PARTY!!!  He will be a year old on November 18th.  You can mail him a birthday card to: Logan Strong PO BOX 2168 Scotia, NY 12302

Thank you all for continuing on this journey with us as we appreciate all of the love, prayers and support!

 

#LoganStrong

#MamaStrong

#StrongasFogg

 

 

 

Posted by Jennifer Fogg in Logan, 0 comments

**Exciting News**

 

As many of our close family and friends know, I have worked for Aflac for over 5 years and yes, I am also a policyholder.  When Logan was born, I added him to my Aflac policies because he was in NICU for five days and I figured I might as well add him to all of my policies now.  Not thinking I would ever have to use my cancer plan for my son.  But what most people don’t know is that Aflac owns their own children’s cancer and blood disorders center in Atlanta, GA., Children’s Healthcare of Atlanta (CHOA), in which I have been donating to monthly since I started my Aflac career.

What is incredible (and ironic, let’s be honest) is that Logan’s chemotherapy treatment plan was developed at CHOA!  Working for an amazing company, being a policyholder, donating to an amazing cause and having Logan’s chemo protocol come from CHOA is an incredible experience.

So, with that said….

Children’s Healthcare of Atlanta chose Logan’s story to share with the entire Aflac sales force in January 2018 at Kick-Off meetings across the country! That’s over 16,000 sales agents in the US, with over 500,000 accounts and close to 10 million policyholders.  Logan’s story is going to be shared to help raise childhood cancer awareness and future funding opportunities for Children’s Healthcare of Atlanta (CHOA).

CHOA flew their film crew and marketing team up from Atlanta last Wednesday and basically turned our house into a film studio on Thursday.  It was very overwhelming and exhilarating at the same time!! They made Kevin and I feel very comfortable and helped in telling Logan’s story clearly and concisely. This in turn will not only help in raising awareness but also in funding CHOA.  These children are innocent and in a lot of cases need nothing short of a miracle. They were also able to interview Logan’s doctors (Dr. Weintraub and Dr. Adamo) at the hospital (Albany Medical Center).

We can’t wait to see the final video!

We are so humbled and blessed to be able to share our story!!!  To be able to share our experience with thousands of people to help raise awareness and funds…..#GRATEFUL

To learn more about Children’s Healthcare of Atlanta and how you can help, please visit www.choa.org.
 

 

  

  

 

Posted by Jennifer Fogg in Logan, 3 comments

Reality – before round 5

As I sit here on the eve of Logan’s fifth round of inpatient chemo, also my birthday, I am overcome with conflicting emotions. Part of me is excited to go back to the hospital and finish inpatient chemo once and for all but there is another part of me that just wants to stop and not do anymore chemo. While I would NEVER not do chemo, the thought does come across my mind. Just knowing the discomfort Logan will be in in just a few short days, kills me! He has no idea that by this time next week, he will be sick, miserable and in pain. But on the positive side, this is THE LAST inpatient round of chemo! My biggest fear, however, is that he regresses and we lose the physical and mental progress we have made in just the past couple of short weeks at home!

Logan makes so much progress at home! He is now okay with transitions, moving from sitting to laying down. He likes to be held now. He doesn’t fuss every time we change his diaper or get him dressed. He’s really trying with the binky and the bottle. He’s swallowing very well. He’s putting his hands in his mouth. He giggles. He has a tickle spot. He’s very observant and interactive. He’s making all sorts of noises. He’s entertaining himself. He’s doing NORMAL baby stuff….it’s such a wonderful thing to see!!!

But one thing we need to keep in mind is that he has a serious brain injury. And by “we” I mean his fans, our family and friends and yes my husband and me, at times. And by “serious brain injury” I mean he had a large part of his left frontal lobe removed. So when people have commented or reached out to me recently expressing how happy they are for us that there is no visible sign of tumor in Logan’s head, I may not respond as positively as most would think. People have said, “Aren’t you happy/excited/ecstatic?” and to be honest not really! Yes, I am glad to hear that there is no visible sign of tumor but that is minor compared to the big picture of the situation we are dealing with here. Our son was diagnosed with a congenital glioblastoma. He was born with cancer. This is just a small battle won in the long war we are fighting!

While I (we, my husband and I and our families) appreciate the thoughts and positive comments, this is not over! Logan is NOT in the clear and won’t be for a number of years. He was BORN with a brain tumor and is at risk for it to return. To kill the cancer he will have 5 aggressive inpatient rounds of chemo and to make sure it doesn’t return, he will have 8 outpatient rounds after that. He will be on chemo for almost two years….that’s A LOT OF POISON!!! Logan goes back to the hospital tomorrow night for his last round of aggressive inpatient chemo (about 3 weeks) then he will start his eight rounds of outpatient chemo a couple of weeks after that. Each of those rounds is 40 – 50 days, so his immune system will pretty much be permanently compromised for the next 14 months or so. This also means, we can’t send him to daycare, so I won’t be able to go back to work anytime soon. Thankfully we have a large support network and an amazing family that have offered to help so I can go back to work sooner than waiting for his chemo to be done.

The other positive is that Logan has been approved for Early Intervention through the county, so they are actually coming over tomorrow afternoon before we head back to the hospital to do his evaluation. I’m thrilled because we just found out that Whispering Pines will be doing his evaluation and I have heard amazing things about their programs and therapists! I’m also happy that most of Logan’s therapies can be done at home. I do some exercises and activities with him now on a daily basis, including practicing with a bottle and binky but having someone come in, evaluate and track his progress is very exciting!!!!

Yes, we have no doubt that Logan will beat and overcome cancer for good. However, not only are we dealing with chemotherapy for almost two years, we also have to deal with any deficiencies Logan may have due to the two major resections and the side effects of the chemo.

So as we prepare to go back to the hospital tomorrow please keep Logan in your prayers to not only kick cancer’s butt but to also overcome any deficiencies he may have.  We will continue to keep you all updated on Logan’s progress and any major happenings. Thank you all for your continued thoughts and prayers. We truly appreciate it!

We are ALL #LoganStrong!!!!

Posted by Jennifer Fogg in Logan, 8 comments

After Round 4

I have literally sat down at least a dozen times over the past few weeks trying to write a blog post.  I actually have had a few different topics running around in my head that I have been trying to get on paper (computer) but time just gets away from me.  I truthfully have NO time and when I do have some time, it’s spent doing tedious tasks and/or sleeping because I am beyond exhausted pretty much most of the time.  Now, I’m not saying any of this to complain because that is the furthest from my mind.  We all have to handle the cards we are dealt and honestly I am glad I was dealt this card.  Don’t get me wrong, my son’s diagnosis sucks and this isn’t the life any parent asks for, but I still believe that everything happens for a reason, and Logan chose me to be his mom for a reason.

So let’s start there….the time thing.  I have been asked numerous times, “What do you do with all your free time?” You would honestly think that not working and basically allowing other people (nurses, patient care assistants, etc.) to take care of my son would allow a decent amount of free time…NOT!!! This couldn’t be further from the truth.  There are days that I have no idea where the time went then there are other days (very few of them) when time goes by so slowly.  I have lots of ambitions and a list of things I would like to accomplish during my ‘free time’ in the hospital but that list just continues to grow and not many things get checked off.  I can’t even tell you what a typical day looks like because they are all so very different.  My son comes first so I need to make sure that he is taken care of before I do something I want to do on my list.   The nurses or PCA’s only check on him every three to four hours whether it be for meds, a neuro check, or vitals.  Other than that, I am on my own.  Logan gets physical therapy, occupational therapy, and speech therapy, each at least 2-3 times a week.  He has three doctors tending to his care on a daily basis as well as a developmental pediatrician that monitors him on a weekly basis. In addition to all of that, if he has a surgery or something they are monitoring he will have a specific doctor checking in on a daily basis, sometimes more than once a day.

I still try to run and work out while living in the hospital but I can’t leave his room if he’s awake.  There are volunteers that can come sit with him but I am very cautious and picky as to who I let near him, especially when his counts are down.  There is one volunteer, Annabelle, that is great and she absolutely adores Logan.  So she will come in once a day and play with him for about a half hour while I go across the street to the hotel and go for a run in the gym.  That’s typically the most “free time” I have.  Sometimes I sneak out when he’s napping to grab a coffee or just go outside for fresh air.  But lately, he doesn’t really nap.  He takes a few 10 to 15 minute power naps throughout the day.  So, needless to say….I have to be “ON” at all times; hence the exhaustion.  Not to mention sleeping on the couch there is not very comfortable and the nurses are in and out all night for his feeds, meds, neuro check, vitals or diaper change.

So, let’s back up to the beginning of Round 4.  Logan had a G-tube placed on Monday July 10.  We (my husband and I) were thinking this would be an easy, quick recovery surgery.  Boy were we wrong!!  My poor baby had the worst and most difficult recovery based on where the G-tube was placed.  Think about it…he’s overcome 2 major brain surgeries so why would a simple stomach surgery be so bad!? It was bad because there is nothing but fat and tissue there, unlike the brain, which doesn’t feel pain.  This poor kid was in so much pain.  It was definitely the worst recovery yet from all of the 9 surgeries he has had before.  They literally blew up his stomach, put three buttons on the outside to hold it open and placed what looks like the plug to a beach ball in his little belly.  Poor kiddo!!!

They only gave him two days to recover before they started Round 4 of chemo.  They started his feeds at 2ml/hour, that’s next to nothing!  There are 30 mls in an ounce, and babies at this age normally drink about 2 ounces per hour, so that’s about 1,440 mls day.  Dr. Weintraub said we could go home once Logan was tolerating 30 mls/hr.   So if we went at the rate of one ml per day, this would take too long.  Once chemo starts, Logan tends to get sick more often…understandably so.  The doctors then started talking about possibly putting in a G-J tube in a few weeks.  Mama Bear mode kicked in and I said “Absolutely NOT!  He will learn to tolerate his feeds!!!” The problem is that when he would get sick, they (the nurses) would typically turn his feeds off, which makes (made) no sense to me.  They explained why and it was; because they wanted to give his stomach time to settle, which I understand but how is his stomach supposed to learn how to push through.  No pain, no gain…right!?!?  So now, I don’t let them stop his feeds.  😉  Sure enough, within 21 days, he went from 2mls/hr to 30 mls/hr.  The part that sucks is that it’s 24 hours/day.  Another reason he was getting sick was that one of his anti-nausea meds was actually making him sick (thank you nurse Ashley for figuring that out!).   I knew my son would eventually be able to tolerate his feeds.  He is strong, he just needed to be given a chance!  I can’t wait until they switch him to bolus (more volume and shorter time) feeds.  He is taking milk by mouth via a syringe, he loves it. He is still struggling with the bottle nonetheless, but he does love playing with the nipple and getting milk as a surprise for doing so!  LOL

Logan actually recovered from Round 4 of chemo better than all of the other rounds and we were able to go home sooner than anyone expected…..ROCKSTAR STATUS!!!!

Shifting gears now….I had a huge realization about two weeks ago regarding Logan’s diagnosis and progress.  They removed a part of his brain!!!  How did I not know this???  Why didn’t anyone tell me!?!?  My husband told me I knew.  The doctors told me I knew.  Hell, I saw the damn images!  So why didn’t I know then!?!?  I think I compartmentalized it until I was ready to deal with it.  Makes total sense.  I get so much thrown at me on a daily basis that this was a HUGE thing to deal with.  No wonder why they (the doctors) kept telling me he may have deficiencies….duh!?!?  Actually realizing this and accepting the fact that they removed a part of my sons left frontal lobe was so devastating to me to deal with.  I think I cried for two days straight.   That’s why Dr. Adamo went in to do the tumor resection twice so quickly because baby’s brains are so soft and have plasticity to not only recover from trauma but because Logan hasn’t learned certain things yet from that part of his brain, the other parts of his brain can compensate.  Basically, he will just learn to do things from a different part of his brain.  We are also lucky enough to have the best doctors here locally in Albany and Dr. Lucas, Developmental Pediatrician, closely monitors Logan’s progress!  I have no doubt that Logan will recover from this and any deficiencies we may come up against we will work through.

So for now, we just push through chemo and continue with PT, OT and speech therapies.  Once we are home on a more permanent basis, we will have early intervention services assist with Logan’s ongoing treatment.  We still have a very long road ahead of us but this kid is such a fighter and I am so proud to be his Mom!

Now we are off to the hospital tonight for shunt surgery in the morning, a couple of days in PICU then home for a couple of weeks to recover before Round 5.  I will do my best to try to write more and keep everyone updated.

Thank you for taking the time to read this and letting me share our story.  We truly appreciate everyone’s continued positive thoughts and prayers!

WE ARE ALL #LOGANSTRONG

 

Posted by Jennifer Fogg in Logan, 9 comments

End of Round 3

As I sit here thinking about the past few months, I can’t believe all that our family has been through and has overcome already.  I am so excited that we finally get to go home tomorrow for nine days, it feels so surreal!!!!  I am beyond ecstatic and cried tears of joy when I found out.  A break from the hospital is much needed!  These past almost four months have been wearisome to say the least, we’ve only been home for five days since Logan was diagnosed on March 8. (April 4 to April 9).  We’ve been through three rounds of chemo, two major brain surgeries and multiple other surgeries. Not to mention numerous setbacks, side effects and a range of emotions!

I’ve said it before and I’ll say it again, as much as this whole situation sucks, it was meant to happen, Logan chose us to be his parents for a reason.  Don’t get me wrong…I HATE that my son has to go through this but WE can handle this and WE will OVERCOME!  Sometimes I sit and think that it’s not fair that someone else who is not so well off has a healthy child but if Logan was born to someone like that, he may not have had as much of a fighting chance as he does being our son.  Kevin and I not only have the support and financial means to be there for our son but we are also very blessed that I have the job that I have that I can take the time off work, as long as I need, to help care for our son and get him the help that he needs and will need in the future.  Yes it sucks that our son was born with cancer but we truly are lucky and grateful for the means that we have to help him get better!  If I didn’t work for Aflac, I wouldn’t have a flexible schedule, I wouldn’t have residual income, I wouldn’t have an Aflac cancer plan….all these things couple with my in laws being retired and able to help out whenever needed are true blessings.  Logan is our miracle baby and will continue to be that as he kicks the puck out of cancer.  This kid is going to have so many stories to tell.  We will have to get a notebook for him to keep track of which scar is from what surgery and explain to him how much he has overcome.

With all this being said, I do have to say that this round of chemo was the WORST!!!  We had so many obstacles to overcome.  I hit rock bottom.  Watching your child suffer the horrific side effects of chemo is heart wrenching!  Logan stopped taking the bottle at the end of Round 2 then after the second brain surgery (tumor resection) he stopped taking his binky.  He was being fed through an NG tube (a plastic tube through the nose, past the throat, and down into the stomach) for weeks then a few days after we started Round 3, he wasn’t tolerating his feeds anymore.  He couldn’t keep anything down, he would spit up every time they would increase the speed so then they would have to stop and restart again.  It was awful.  They finally decided to remove the NG tube and switch him to TPN (Total parenteral nutrition supplies all daily nutritional requirements via IV).

Now, let’s take it back to the day before that happened.  The doctors had scheduled an eye exam for Logan because there was concern he wasn’t tracking and hadn’t been for two days!  Mind you, I was on the way to my own doctor appointment, cried all the way there, in the appointment and on the way back to the hospital as we waited 5 hours for them to check Logan’s eyes after they dilated them.  Watching them pin him down on the bed and pry his eyes open to look inside them was nauseating!  And guess what….his eyes were (are) fine!

Fast forward to about day 17 of Round three and Logan’s heart rate spiked to about 180 bpm while he was sleeping and morphine didn’t touch it!!!  They then decided to do an EKG around 1am.  Thankfully that showed no concerns but why was his heartrate so elevated?!?!  We attested it to pain and just continued to monitor him.   By the next morning his heartrate was normal and he was fine.  A few days later his heartrate spiked again followed by a fever.  It was then determined with blood tests that he had an infection.  They drew labs from his central line and from his foot to see where the infection was.  Thankfully the infection was only in his central line.  They immediately began treating it with antibiotics.  A few days later his heartrate was elevated and he spiked a fever again so they decided to remove the central line.  WOW!  Thankfully after the central line was removed he had three days of negative cultures.  Unfortunately they had to put an IV in his foot and in his head to administer his TPN and his antibiotics.  That was only for a few days then they put in a PICC line (peripherally inserted central catheter).  So that’s another surgery in the books for Logan.  I have lost count as to how many surgeries this poor kid has had but I will tell you he handles anesthesia like a champ (put that on his resume…lol).  This infection set us back about two weeks, we were hoping to go home earlier but this was just another bump in the road!

I have no doubt that Logan WILL beat cancer and he will continue to have successful surgeries but the hardest part is watching him suffer the side effects of chemo and the surgeries…..from spitting up bile, dry heaving, muscle atrophy (he can’t hold his head up on his own anymore), he doesn’t take his binky (he LOVED his bink!), he has a hard time swallowing, he can’t suck, he won’t take a bottle.  He’s seven months old, he should be trying real food, rolling over, sitting up (this makes him sound like a dog)….but I can’t compare him to other kids, he is special and has his own path!!!!  He WILL overcome these deficiencies.  It might take some time but this kid is definitely bound for great things!!!!  It’s also scary when the doctor tells you that the more they talk about Logan’s diagnosis, the more they realize how rare his case is!  However, a lot of this is because we found and treated the tumor early with no symptoms. In some cases these types of tumors are untreatable in infants. The fact that Logan’s tumor is a congenital GBM allows for an aggressive treatment. Logan has tested positive for certain genetic markers, these markers allow the Doctors to collect data which will enable the development of new treatments.  So, this is ALL GOOD STUFF!!

His counts are UP and we are going HOME TOMORROW!!!!  I need this time home more than anything, our family needs this time together.  I will always be here for my son and support and advocate for him but when you live in a hospital 24 hours a day, 5-7 days a week on top of the emotional roller coaster, it wears on you!  Now that we are going home, I am feeling much better.  I need this break….I need to rest, recharge and reorganize.  We have been in the hospital for almost 4 months with a 5 day break!   We have two more rounds inpatient then Logan will have another year and a half of maintenance therapy.  We have a long road ahead of us but we will OVERCOME! There are still so many what ifs, what’s next, etc. but we have to remain positive, we have to continue to fight and pray!

We are all #LoganStrong!

#StrongasFogg

 

Posted by Jennifer Fogg in Logan, 6 comments

Round 3 – 3 months since Logan’s diagnosis (3/8/17)

This post comes with a disclaimer that there will be no filter.  I have been feeling so many different emotions lately that I just need to get it out.  So I will apologize in advance if I offend or upset anyone.

Three months ago today our lives were turned upside down.  On one hand I can’t believe it’s already been three months but on the other hand I can’t believe it’s only been three months.  I can say, that this is NOT what we at all expected when we were planning for a baby.  But, I still believe, to this day, that this was meant to happen to us, that Logan chose us for a reason.  Don’t get me wrong, this SUCKS like BIG TIME but it is what it is and you push forward.  There are days, like yesterday, where I just stand in the shower and cry and beg for his pain to go away and to be healed.  Then I pick myself back up and keep going.

This week and this round of chemo has been the toughest so far.  My in-laws have been helping so much (so grateful) but they had to go back to North Carolina for the week. They have been here since Logan was first diagnosed.  So, this week it’s pretty much my husband and I, my mom is helping and so is my dad.  But not having my mother in law around is tough, she helped with laundry and meals.  Plus, Kevin is back to work full time so it’s really just me for about 20 hours a day.  Don’t get me wrong, I wouldn’t be anywhere else…but it’s very tough!  These 4 walls close in on you quick, there is only so much “extra-curricular” activities I can do.  I sit next to Logan’s crib while he sleeps or he sleeps on me.  I play with him, sit him up and move his arms and legs.  He also has PT, OT and Speech Therapy almost daily as well as different doctors coming in at different times during the day.    I can’t work (I’ve tried), it’s hard to read or listen to a book or focus on anything other than him.  I’m typing this while Logan is sleeping and getting a blood transfusion.

I’ve never seen a baby dry heave or spit up bile before…it was awful.  This round of chemo has been harsher on Logan for a couple of reasons.  He’s coming off of two major brain surgeries AND this is the third round of poison he is getting.  I have to say though that my kid is A-M-A-Z-I-N-G, he never screams or cries uncontrollably.  He just fusses or moans to say he is uncomfortable…thank god he is calm natured like my husband.  Don’t get me wrong though, he will tell you exactly like it is just like his mama!!  😉

Now here is where it gets real.  When he was first diagnosed on March 8, my phone, text, FB, messages were blowing up…I was very overwhelmed, gratefully overwhelmed.  But now, three months later, I’m lucky if I get one message (text, call or FB) a day.   It’s like you are a celebrity in the beginning (right Michelle?!?!) then nothing.  People you thought would be there for you aren’t and those that you never thought would be, are.  Then there are those that either don’t say anything or say the wrong thing.  There’s people that you give every opportunity to come visit but never show up then there are those that just show up at the worst times.  No one could ever prepare for this situation, no matter what side of the coin you are on. I totally get that everyone else has their own lives and their own thing going on but when you are trapped within 4 walls for days on end with a sick child with only a quick treat of a Starbucks coffee once a day (if you’re lucky to get out)…..it gets hard, real fucking hard!  I have totally lost ALL patience for minor things….like I am more of a bitch now than I ever have been.

I get people don’t want to bother me (us) at this point but even a quick text or message that says “Hey, I’m just thinking about you guys” or “you are in our prayers”.  Saying and doing nothing I feel is worse.  But with those quick messages, I can’t always respond, they are just nice to see!   I guess there is no right or wrong on either end of these circumstances.  It is what it is.

This situation really makes you appreciate what is important in life.  I find joy in going home just to take a shower and get ready in my own bathroom.  I enjoy driving down the road with my sunroof open on a nice day.  Hell…I would enjoy walking barefoot in a thunderstorm right now!  I am missing what every first time mother experiences…it fucking sucks!  I am angry, I am bitter, I am hurt, I am upset but I am also exactly where I am meant to be.  I love my son more than life itself and would do anything he needs to get better.  I HATE that he is going through this but am grateful that he will never remember…boy, this kid is going to be spoiled for the rest of his life!

Thank you for letting me vent…this is actually not as harsh of a post as I thought it would have been.  I’m having an okay day but if I would have wrote this last night, oh boy…the tone would have been way worse!

We truly appreciate the outpouring of love and prayers we have been receiving, that is really all we ask for.  Thank you for allowing us to share our story with you.

Please continue to pray and share Logan’s journey to help raise Childhood Cancer Awareness.

 

 

 

Posted by Jennifer Fogg in Logan, 5 comments

Strength

We are coming off a week of absolutely amazing news.   In a matter of seven days Logan underwent two extensive brain surgeries where the doctors were able to resect 95% of his tumor!   This is everything we, and all of you out there, have been praying for (and boy do we have prayers out there)!

However, as everyone is on an incredible high there have been a fair number of lows.    These lows have brought us the same thought over and over again…. HOW DO THEY DO THIS?

In two months time, Kevin and Jen have become hospital parents.  They have placed their “normal lives” on hold to focus on Logan’s battle.  They have fought through Logan’s many surgeries, chemotherapy, infections, seizures and high fevers.  They have learned exactly what symptoms to look for and to be concerned about.   And let us tell you, they are doing an AMAZING job!

One night when Logan wasn’t following Jen.  She knew to immediately call in the nurse because something was very wrong.  The doctors came and Jen was correct; his shunts were failing.  Logan was taken to surgery that next morning to have the shunts removed and have bilateral external drains placed.  During this time of having these drains Logan needed to lay flat because the drains needed to remain level.  One day, Logan began to vomit.  What does one do with a baby who is laying on their back and starts to vomit? Easy, right? Just turn them to their side!! Well…not so easy in this case because of the drains, and Logan needing to remain level.   In a matter of one second Jen jumped up came clear across the room, turned the drains off and turned Logan on his side.  It was truly something to watch her know exactly what needed to be done.  All while I stood there frozen!

Along with the endless hours spent at the hospital caring for Logan have come relationships with other hospital parents.  They share a common bond…they are all fighting for their children.  While every child’s battle is different, they all pray for the same outcome.  Sadly, within this week, as Jen and Kevin were getting good news about Logan, another parent was receiving the worst possible news about their child.  Jen had become very close with this mother whose daughter has since lost her battle to this wretched disease.  We watched as a piece of Jen;s heart break.  So many emotions were happening…she was feeling elated at the news of the 95% resection, and feeling a sense of terrible guilt for her happiness, because she knew her new friend was just upstairs saying “goodbye” to her baby girl.  The duality of hospital life was never more present than in that moment.

Jen describes this time as “the worst roller coaster ride of your life!”

How do Jen and Kevin do it? How have they been so strong? How have they continued to have such faith? How do they have the strength to keep fighting?

Well, she says the answer is…. because they HAVE to! And if you ask us, we truly believe that is the very attitude that continues to help Logan do so well…because he HAS to!!!

That is why we will continue to be #LoganStrong

We, Jen and Kevin’s friends, have sat on the sidelines, watching our friends go through a nightmare we can only imagine…and really, we can’t even imagine it.  We constantly ask one another how they continue to stay strong, how they do it, how any parent who has a child with a life-threatening illness keeps going.  Jen says it’s because they have to.  While we know that this is the attitude that keeps them strong, and helps Logan to fight, we also are very aware that they don’t have to.  There are people that, for whatever reason, can’t.  We see it when we visit, and there’s a baby crying, alone, in the room next door, because their parent couldn’t.  Jen and Kevin have to, because that is what is in their hearts.  They can’t imagine this any other way.

As friends, we come and go to the hospital.  As parents, they barely leave.  I can tell you, personally, there have been times when I’ve just barely gotten to my car before breaking down, and just sobbing at how unbelievably unfair this is.  I then turn on my car, drive home, and go to sleep in my own bed…we leave the hospital.  Jen almost never leaves, and when she does, it’s for a moment in time.  Kevin leaves to work, and even then, his mind is on his wife and his baby, and he is back at the hospital as soon as he can be.

How do they do it? How do parents handle this kind of fear? How do Jen and Kevin sit through the endless stream of words that come from the doctors’ mouths? We’ve been in there a couple of times for both good, and not-so-good news, and after a while, the words seem to blur together.  As our minds are racing, and not knowing what to think, out comes a completely logical, and on point question from Jen.  One that we likely wouldn’t have thought of until long after the doctor was gone.  It is this kind of strength, tenacity, and presence of mind that we truly believe has helped Logan get to the point he is…with a tumor that the doctors initially had very little hope of curing, to having 95% of it resected, papers already being written up about this little miracle, Logan consistently proving the doctors wrong, and the thought of being cured being a realistic goal.

How do they stay sane? Four walls can close in on a person very quickly.  How do they do it? How do they watch their baby go through this? Well, like Jen said, because they have to…there simply isn’t another option, in their hearts.

They are blessed to have both sets of grandparents around, and available, and the outpouring of love from the community has been a tremendous boost for them, as well.  They cannot wait for Logan to be old enough for them to tell him the stories of people that pulled together to help him!

So, how do they stay so strong? Love.  Faith.  Tenacity.  Perseverance.  Strength.  They are two remarkable people, and it shows in the eyes of their amazing little fighter, Logan.

Love,

Colby & Ali

a.k.a. Aunt Coco & Angel Ali

Posted by Jennifer Fogg in Logan, 3 comments

Surgery

I don’t even know where to begin. These past couple of weeks have been another crazy rollercoaster ride. On Tuesday night April 25, around 11pm, Logan stopped tracking (following) and was just in a trance like state. I knew for a few days prior that there was something wrong with his shunts but we needed to get through round 2 of chemo. They ended up doing an emergency CT scan and shunt series x-rays later that evening. They also hooked Logan up to an EEG machine to see if he was having seizures. Then around 4am on Wednesday they ended up tapping (draining) his shunts bedside and released about 30cc’s of CSF (Cerebrospinal fluid) and he immediately went back to tracking. This is how they knew he was in shunt failure. It was like a catch 22; the chemo was working but the particle from the tumor were causing the tubes from his shunts to back up and stop draining. Around 7am, they brought Logan in to the OR to remove his shunts. They tested his CSF and sent his shunt tubing out for testing to see if there was an infection. Luckily, to date, neither the shunts nor his CSF are infected! The concern, however, was because Logan had an incision on his belly from the initial shunt placement that became infected and the doctors determined that if we waited any longer to remove the shunts that in a day or two you could have seen the tubing through the infection on his belly….awful!!! (His belly was not healing very well after infectious disease narrowed down what antibiotic to use). So as of last Wednesday, Logan has external shunts and is in the PICU. He needs to remain in the PICU as long as his shunts are externalized. They were initially going to re-internalize his shunts last Thursday, but after Dr. Adamo (Pediatric Neurosurgeon) and Dr. Weintraub (Pediatric Hematologist/Oncologist) spoke, they decided to hold off and move forward with partial tumor resection. It’s best that the shunts are external while they attempt to remove part (if not all) of the tumor.

That brings us to the past few days..I have been an emotional wreck and sick to my stomach since they decided on surgery and went over the risks. Now, don’t get me wrong, this has always been the plan….2 rounds of chemo, surgery to resect and then 3 more rounds of chemo. But this is the most scared that I have been since the day Logan was diagnosed. The chemo has shrunk the tumor significantly but is still pretty large for a baby his size. Congenital Glioblastomas are very aggressive and very vascular.

There are other cases that show that partial removal followed by more chemo has had good results in attacking this type of tumor. Kevin and I have the utmost trust and respect for Logan’s doctors, but again this is all very scary.

Two of the biggest risks are:
1. Logan could bleed out uncontrollably and not make it off the operating table.
2. The tumor is pushing on Logan’s left frontal lobe and they aren’t sure if it’s just pressing on it or if it’s actually invaded that area. Either way, he could come out of surgery not being able to use the right side of this body. Whether it be permanent or temporary, we don’t know. Could last a few weeks or a few months.

The good news is if the latter occurs, he is a baby and his brain is still developing so there is a great chance he will recover. Meaning his brain will grow and compensate for the parts that are damaged. Where if this were an adult, we would basically be screwed! His developmental pediatrician, Dr. Lucas, is very happy with how Logan is already doing and said he is neurologically sound right now, and is confident we would be able to overcome the second outcome.

So, needless to say, I am a hot mess. I am trying to stay positive and they have been telling us worse case scenarios since the day Logan was born and he has overcome and proven them wrong each time. But even the thought of losing my son is killing me. I am bawling as I type these words…please God save my baby!!!

I do, however, find peace in knowing that Logan is here for a reason, and we will fight for him no matter what. He has the best doctors, family, support and prayer warriors we could ever ask for.

I want to give a big thank you to my friend and brother Jason Twombly for always being a text or phone call away to pray with me and for Logan (even at 3am). Thank you, Karen Laing, for inviting me to WOW (Women of Worship) yesterday and introducing me to some amazing people to pray over me, especially Bethany Hoyt. And I am and forever will be grateful for Michelle Brooks…I love you!

With that being said, Kevin and I will be having final conversations with both Dr. Adamo and Dr. Weintraub on Monday to discuss surgery. As of now, surgery is scheduled for Tuesday. I will keep you all posted if anything changes but please send ALL your prayers and positive thoughts to Logan and his family on Tuesday as that

Posted by Jennifer Fogg in Logan

End of Round 2

Today was the last day of Round 2.  This round has been very rough on Logan and the rest of us for that matter.   Round 1 was only 75% of the recommended chemo dose (they do that for all babies under 6 months old) and they bumped him up to 100% for Round 2 because he handled the first round so well.  One of Logan’s incisions from his shunt surgery got infected and he spiked a fever.  So, between the increased dosages, a corner of the incision re-opening, and his counts being down, unfortunately infection and fever is a risk with a compromised immune system.

Each round of chemo is 21 days.  He receives 3 different kinds on day 1, 2 and 3.  Then he receives a small dose on day 8 and again on day 15.  Day 21 is when they would start the next round, following the same schedule, as long as Logan’s counts come back up.

Logan was okay the first week, with chemo on day 1, 2 and 3.  Day 8 wasn’t bad but that’s when his counts started to drop.  We noticed the area around his incision red and swollen on day 10.  Not to mention, when they changed his bandage they had his port line rubbing on it….ugh!!!  By day 11 it looked worse and I had to be crazy hospital mom and demand an ultrasound after they (the doctors) were back and forth as to whether or not to do one.  Thankfully the ultrasound showed that it was just superficial; cellulitis was the diagnosis.  They put him on two different antibiotics and Tylenol when needed.  Day 12, Logan was in so much pain, he slept pretty much all day.  I was heading home that night (my mother was staying with him) and wasn’t feeling right about it but went anyway.  Before I went to bed, I made sure my ringer was up, normally I turn it off.   Thankfully I did because I got a call at 2am from my mother that Logan was having trouble breathing.  That was the scariest call of my life.  Kevin and I immediately drove to the hospital.   They had to call a ‘Rapid Response’ on Logan, which is a step down from a ‘Code Blue.’  They determined his breathing difficulty was because he was in so much pain.  They had to give him morphine, and he slept through the night.  Kevin went home around 3:30am and I stayed at the hospital with my mother. Of course, not sleeping, just watching him to make sure he was breathing okay.  I finally went home around 11am Saturday, getting only about two hours of sleep.  I was able to get a few hours’ sleep during the day, but that definitely wasn’t enough; I was completely exhausted.  Kevin had gone to the hospital around 3pm to see how Logan was doing, and every time I was on the phone with Kevin, I could hear Logan in the background crying.  My poor baby was in pain and I wasn’t there to help him.  Thank god I was able to text Ali, who works in Dr. Adamo’s office and she was able to get a hold of the Neuro doctor on call to go see Logan.  That definitely made me feel better, but I was still a wreck!  There is no worse feeling in the world than feeling helpless when your child is in pain.  I wanted to go back to the hospital but I was beyond exhausted and would have done Logan and myself, no good!

Day 14 was better, he finally ate, after not eating for almost 3 days.  He still wasn’t eating as much as he normally does, but a little is better than none.  Because he wasn’t eating for a few days, some of the doctors suggested to put a feeding tube (NG tube) in, which I refused each time.  Why would I put a foreign object down my child’s throat when his immune system is compromised, when I know he just doesn’t feel well and will eat again in a few days?  Same thing happened during Round 1.

That brings us to today, day 15.  He got his final dose of chemo for this round.  His incision looks worse but because his counts are going back up, they said it will look worse before it gets better because all of the good cells are attacking that location.  He has had to have 3 platelet transfusions and 1 blood transfusion this round.  His incision looked good, then bad, then ok to worse.  I wasn’t there for him for over 24 hours, and I am going back to work tomorrow.

Let me now share with you the emotions I have felt over the past few weeks, some of which I have experienced in the same day….

  • Angry
  • Happy
  • Sad
  • Bitter
  • Pissed
  • Upset
  • Blessed
  • Hopeful
  • Defeated
  • Loved
  • Scared
  • Weak
  • Strong
  • Betrayed
  • Lonely
  • Exhausted
  • Alone
  • Afraid
  • Anxious
  • Jealous
  • Confused
  • Hopeless
  • Weary
  • Brave

 

I’m sure there are more but that gives you an idea.

 

I do not wish this experience on ANYONE.  I do, however, still believe with all my heart that Logan is meant to be here and we are meant to be his parents and to face this.  We will NEVER know why or how but Logan WILL ALWAYS know LOVE!  That is all that matters.  Kevin and I, as difficult as this has been between us as well, will ALWAYS support and do what’s right for our son.

This is the worst rollercoaster ride I have ever been on.  There are days where I just want to cry, but know that I must stay strong for our son.  I give him pep talks every day and I swear he understands me.

So, now we just wait for Logan’s counts to go up.  Once they do, hopefully by early to mid-next week, they will do an MRI to see what the tumor looks like.  Best case scenario, the tumor has shrunk enough to be removed.  Worse case, we start Round 3.    We are all hoping for the retraction of the tumor because this little guy needs a break from chemo!

And the emotional rollercoaster continues…

 

Posted by Jennifer Fogg in Logan, 6 comments