Logan

Three Year Cancerversary

Three years ago today, our lives changed forever.  Our hopes and dreams of having a “normal” child was crushed!

  • Being told your child has cancer is the one of the worst things a parent can hear, nonetheless about your first-born child!
  • Being told that your child may not survive.
  • Being told, “I’m sorry, there’s not much we can do.”
  • Being told that what you have waited for all your life could quite possibly be taken away from you at any moment.

Yes, Logan is doing A-M-A-Z-I-N-G but that doesn’t mean it’s easy…. that doesn’t mean I (we) don’t long for normalcy.

While we agree that there is no such thing as normal when your child is born with (diagnosed with) a life-threatening illness…you long for what you can’t and may never have.

We firmly believe (and so does Logan’s medical team) he will catch up.  It’s still very hard when your child doesn’t reach the “normal” milestones.  Walking, talking, eating, saying “mommy” or “daddy,” asking for a snack, playing cars or blocks or playing house and making breakfast in a play kitchen or even helping in the real kitchen.  These things haven’t happened and as much as they may never happen, we try to stay as positive and focused on the good as much as we can.  So, when a special needs parent longs for normal, saying there’s no such thing as normal is not a response we want to hear.

My favorite part of this journey so far, besides Logan surviving and kicking cancers ass, of course, is that he is walking……in fact, running!  I love when people say “look at him go” or “he has you on your toes” or “run, Bubba, run.”  Then I look at them and say “and they told me he would never walk.”

I am a firm believer in everything happens for a reason but sometimes, I want to be able to just go to work and come home and make dinner and have my family eat it together or pick up and go to the park and not have to worry about when Logan’s feeing time is or if he’s going to hit someone because he can’t communicate well.  We are currently (still) fighting NYSED and the Board of Nursing to get him fed properly at school.  I know he chose us to be his parents for a reason.  It’s a constant battle!!!!

I know we are meant to help him overcome his delays and these obstacles that are constantly thrown at us but boy…. it’s exhausting!  So exhausting, I really don’t have much to post about tonight.  Plus, the time change and a toddler is so much fun…NOT.

So, I’m signing off.  That’s my quick three-year diagnosis post.

And as I was just about to post this, Logan got sick….2nd time today…UGH!

Thank you all for your continued love and support!

#LoganStrong

#PuckCancer

#tinysuperhero

#PrayerWarriors

#MamaStrong

#StrongasFogg

 

Posted by Jennifer Fogg in Logan, 4 comments

Logan’s feeding issue

Ok, so the point of me writing this is not to get anyone in trouble but to share with you all what is going on, in as much detail as I can! I will not share the school district or school that Logan attends (if you know, that’s fine) as I am not looking to get anyone in trouble or call anyone out, I respect laws and those that have licenses. However, what I am trying to do is get my child fed properly based on his nutritionist’s guidance and doctors’ script.  No law, license or regulation should trump my childs nutritional needs!

When Logan started school back in September, we had to have the doctor script rewritten numerous times to fit the school nurse’s needs.  At the time Logan was getting fed five times a day (every three hours).  We eventually got the script written and everything was going well.  Fast forward to mid-October and it was brought to our attention that Logan was missing one-hour of school per day, equally a full day of school missed per week because he was getting fed twice a day at school (approx. 30 minutes each feed).  This was eye-opening and very important for us to come up with a solution.  After working with Logan’s nutritionist’s and doctors to come up with a solution, we were able to switch Logan to four feeds a day (every four hours).  The new regimen was going well, even when a new school nurse started.  We had been mixing Logan’s formula at home and sending it in a bottle for his school feed. The doctor script was written specifically to accommodate for this feed.

Fast forward to January, when another new school nurse started.  She fed Logan Monday and Tuesday, called me into the office on Wednesday stating she was uncomfortable feeding Logan from the bottle I send, that she needs to see the label.  Where I responded, that’s not possible the way the mix is done.  We continued to go back and forth trying to figure out how everyone would be happy and left it as we would do some digging to find a reasonable solution.  She then called in sick on Thursday and quit on Friday (via text).  Leaving us to deal with this “law” she brought to everyone’s attention.

The worst part is, Logan’s new LPN has no problem feeding him the pre-mix that we send in a bottle but because this has been brought to the schools’ attention and the district, they aren’t allowing it, hence the fight!

Based on this “law,” (and I use law in quotes because it’s not clearly defined), the school nurse has to administer tube fed formula from a container with a label.  We wouldn’t have a problem with this if Logan got fed from a single package per feed.  The problem is that we make Logan’s formula the night before for the next day’s four feeds.  It consists of three – 300ml packages of Compleat, one – 1.5 oz Benecalorie and 200ml water.  This then gets split into four – 270ml feeds for the next day.  If his formula came in individual servings with labels, I would have no problem having the nurse feed from a labeled package.  But this is not possible.

They tried suggesting that the nurse make his four feeds for the day and send the rest home.  Well…why is the nurse more competent to make his feed than the parent?  Not to mention, I cannot guarantee transport home as he sometimes has therapy, doctors’ appointments or daycare.  It needs to be refrigerated within four hours and has a 24-hour shelf life.

As of now we are just sending one package of Compleat to school for the nurse to feed him.  It’s a 300ml package and he only gets 210mls with 60mls water for his school feed.  This not only wastes 90mls of formula but makes his other three feeds for the day thicker.  More than half the time he is getting sick after his morning feed because his body is not use to the consistency of how we are making it at home now to offset for the school feed.  This completely (no pun intended) defeats the purpose of him going to feeding therapy, which he started about a month ago.

I have spoken with several people at the school and school district.  We are now speaking with the New York State Department of Education who is in turn telling us we need to speak with The Board of Nursing.  I have also called our assemblywoman and a lawyer for advice.   Logan’s team of doctors, nutritionist and case manager are behind us on this and are researching and fighting for us as well.

This has been going on now for almost three weeks….I just want my child fed the way he needs his nutrition.  Why is this any different than a child bringing in a bagged lunch.  I am not arguing the fact that per law, a licensed nurse has to feed him in school.  The problem lies in that the procedure by which he gets fed is considered medical (in a school setting) and all medicine requires a label but this isn’t medicine,  the contents of the formula are nutrition.  If this was medicine, I get it, they need a labeled bottle and script from the doctor.  To me, this is discrimination.  My son is being discriminated against because he can’t eat by mouth (yet) and the “law” is dictating what and how he is fed.  How does this trump Logan’s nutritional needs?!?!

We have researched and read many laws and regulations on the state level and some are contradictory and some state “best practice.”  To me, “best practice” is a guideline not a hard and fast rule.  We can’t be the only family in the State of New York whose child gets tube fed from a pre-mixed formula at school.  And by the way, we are not, I have proof from other school districts.  But because this nurse that worked with Logan for THREE DAYS caused a stink, we have to fight the “law” that contradicts itself!

As I am writing this out, it seems like such a simple fix.  Feed the child based on doctor’s orders….

I won’t get into some other details (regulations that have been shared, emails, phone calls, who specifically we have spoken to) until this is resolved as to not harm our case but this is the basis of what we have been dealing with for the past three weeks.  The “law” contradicts itself and we are being told (in not so many words) that it’s more important than my son’s nutritional needs.

My husband and I have missed countless hours, if not days of work between phone calls, emails, reading and researching regulations and laws and sometimes going to Logan’s school to feed him.  How is this in anyone’s best interest?!?!

As of yesterday, we received two phone calls reassuring us that we are doing the right thing and that what’s happening here is just “splitting hairs.”

I will NEVER stop fighting for my child!!!!

Posted by Jennifer Fogg in Logan, 8 comments

Two year Cancerversary

Two years ago, today, my life changed.

 

This has been a very rough week for me, anticipating what today signifies.  While I am beyond ecstatic for our friend Gracie that will be ringing the bell today.  Today also brings back the scariest memories of my life.  I am crying as I type this.

 

Two years ago, today, I heard the words, “Your child has cancer!”  I felt like I was hit by a mac truck!  I would have much rather heard those words about myself.  I can still remember how Dr. Adamo told us.  Logan went in for a follow up MRI on Wednesday March 8, 2017.  Just a couple of months prior he had an MRI, and everything looked great.  I knew something was different this day.  Dr. Adamo waited for the nurse to close the door behind her before he would even mutter a word or even look at us.  The nurse closed the door and the look on his face said it all….” it’s a tumor” and my first question was “is it benign or malignant.”  To my horror, he said malignant.   They found a malignant tumor, a third of the size of Logan’s head!!!! My heart dropped, my eyes welled, and I immediately went into fight mode!  What do we do?  Let’s fix it!  This is NOT an acceptable situation…. make it better! Make it go away!  It was the WORST day of my life!  Logan was immediately rushed to PICU (pediatric intensive care unit).  More nurses, more doctors, more of the unknown.  Dr. Weintraub called for a family meeting and said, “I’m so sorry, your son has a glioblastoma, there’s not much we can do.” SHEER HORROR!!!  I waited until I was 40 to have my first child and this was NOT an acceptable outcome for his life (or mine!).

 

I never relied more on the power of prayer than I did that day.  I remember posting on Facebook that Logan was admitted for more testing and that we needed prayers.  They did a biopsy on the tumor and sent it to Boston, New York City and Atlanta…the three other top children’s cancer hospitals on the east coast.  Two days later they came back and said it was a Congenital Glioblastoma and they were ‘cautiously optimistic!’  The second I heard those words, I ran with it.  That’s it, we can fight this, we will beat this, we got this!!!!

 

Fast forward to today…. it’s hard, it hurts, it’s surreal and bittersweet!  The one-year anniversary of his diagnosis was for lack of a better word, exciting!  Weird, I know.  But it’s like “Holy crap!!!  We made it a year!”  But now, the two-year anniversary is more like “holy crap, we made it through two years.”  I know you can’t hear how I am saying it but let me explain to you the difference.  The one-year anniversary was like OMG, this is amazing, they told me my son wouldn’t survive and we have made it a year.  How exciting!!!  Whereas the second-year anniversary is more of a holy crap, I’ve been doing this for two years…this sucks!  This is our life. Ugh.  Another day. Another month. Another year.

 

Now, I know some of you reading this are probably like, well why isn’t she happy that her son is cancer (and treatment) free two years later.  Here’s the thing…. I am BEYOND grateful for my son being cancer and treatment free and yes, ALIVE!!!!  But the reality is, I have PTSD, I am grieving the loss of having a “normal” child, “normal” milestones, etc.  And yes, I put normal in quotes because it’s subjective.  But when you wait until your forty years old to have your first child and you are thrown curve ball after curve ball after curve ball…. it’s FUCKING HARD!!!!!!!!!!

 

Yes, I am strong.  I don’t like being upset, I don’t accept defeat.  That’s why my son has made it this far, because of my husband and me.  We don’t accept the worst-case scenario and believe in the power of prayer and positive thinking.  Logan dying was NOT AN OPTION!  It’s still NOT AN OPTION but it’s ALWAYS in the back of my head!

 

I don’t talk to anyone about how I feel because I don’t want to be judged and quite honestly, no one truly understands!  If I tell someone how I feel…like I wish he was normal or walking, talking, or eating the first response I get is; well, “he’s cancer free!”  NO SHIT!  I know this but that doesn’t mean I don’t want or crave or wish for “normal.”  Logan not only had to beat cancer, but he now has a lot of obstacles and delays to overcome.  And YES, he WILL overcome these delays but, again, that doesn’t mean I don’t mourn “normal.”  I just want my kid to walk and talk and eat like any other almost two-and-a-half-year-old does.

 

Do you know what it’s like to go to an event, whether it be a birthday party, family event, sporting event, etc. and have to keep your child in their stroller because they can’t walk!?!?  It FUCKING SUCKS!!!  Logan turned two back in November and he’s not walking yet….it breaks my heart.  It kills me that my kid can’t walk.  But do you know what I do….I make sure his therapy sessions still happen, I practice walking with him, we do exercises and everything else necessary to help with his development!  I HATE IT!  Yes, I have NO DOUBT that Logan will catch up with walking, talking and eating but that doesn’t mean it doesn’t hurt or that I don’t want “normal.”

 

Wanting “normal” has NOTHING to do with being or not being grateful!  It’s wanting what you have dreamed about your entire life.  Having a healthy baby that grows and develops “normally.”  And yes, I will keep using “normal” in quotes because I know the response…..nobody is “normal.”  Yes, I know this but that doesn’t mean I don’t want it.  Trust me, I’m not “normal” and have you met my family and friends!?  LOL

 

My point is, is that PTSD is real, mourning the loss of something you always wanted and don’t have is real.  And it sucks.

 

I LOVE my son more than anything else in the world.  Being a cancer mom is one thing.  Being a cancer mom to a developmentally delayed child BECAUSE of cancer is a whole other ball game!  And I guess I’m the pitcher…. Logan is doing SOOOO well and WILL overcome all his delays.

 

I have every right to feel how I do, and I don’t need a pep talk.  I don’t need “well he’s cute or he’s cancer free or he’s this or that” …. sometimes I just need a yeah, you know what, it does suck.  What can I do?  Or ask me how I am doing, not just Logan or my husband.  What about me!?!?

 

And P.S. thank GOD my kid is cute…I swear it’s his saving grace at times!

 

Cheer’s to another year!?!?

 

#LoganStrong

#PuckCancer

#tinysuperhero

#PrayerWarriors

#MamaStrong

#StrongasFogg

This was the day Logan was diagnosed March 8, 2017

and today March 8, 2019

Posted by Jennifer Fogg in Logan, 3 comments

6 month’s post–treatment/MRI Scan

WOW…feels strange to even type the title of this post….6 months post-treatment!!!!

I know it’s been a while since I have posted any sort of update.  We are just trying to survive.  Both my husband and I work full time, he plays hockey and I’m in Rotary and we have the Logan Strong Foundation as well….oh and we’re married!  Life is busy, hence why we have two nannies and working on a third.

I haven’t really cried yet today, I’m actually afraid to start because I know I won’t stop.  I am beyond anxious, nervous, scared, etc. right now waiting for Logan to come out of his MRI.  I’ve lost count as to how many MRI’s he’s had, I’ve lost count the number of times he’s been sedated but I will tell you that today is BY FAR the HARDEST.  He literally kicked and screamed the entire time we were in the pre-op room.  Logan’s developmental pediatrician, Dr. Lucas, warned us that the older he is getting the more aware he is of when he is at the doctor or hospital and is more likely to react accordingly.  He HATES it….poor kid has been poked and prodded more times than I care to even remember.

As I was typing the above earlier, the hearing specialist came out to give us the results of Logan’s test.  I am now home, with my gin & tonic, both boys are sleeping and now I’m playing catch up on today……..

I think I posted the same thing all day today about today being by far the hardest with anxiety over Logan’s scan.  It’s weird because I didn’t tell my husband how nervous I was and he didn’t tell me how nervous he was either.  We were trying to be strong for one another.  And when we got the good news that Logan’s scan looked great (all clear), I just broke down in tears.  Dr. Weintraub asked why I was so upset and my reasoning was that tomorrow (February 14 , 2019) is six months post treatment and I know some of the chemotherapies Logan received stay in your system for 6 months as I had asked her about that before.  Logan has also been a real “terdler” lately…moody, crying for no reason (or we don’t know why because he’s not talking yet), some regression in certain behaviors.  I’m not use to “normal,”  give me chemo, give me weeks at a time living in the hospital, give me an 8 hour surgery…that I can handle; toddlers, not so much!  When we got to the car, Kevin told him his stomach was in knots all day.  He was just as nervous as I was today! UGH!!!!

It totally sucks that my “normal” is living in the hospital and fighting for my son’s life.  I’m tearing up typing that (plus, I’ve had some gin!).  In all seriousness…who waits to get married later in life, waits to have their first child at 40 and signs up for this shit!  It fucking sucks.  I’m not going to sugar coat it.  I have days where I am beyond angry and hurt that these are the cards we were dealt.  But then I have other days, where I’m like, okay, we can do this…what’s next, we got this, etc.  I know in my heart of hearts that Logan was meant to be my (our) son.  I know that this whole situation was meant to happen.  I do not question that, I just don’t have to like it all the time.  So when I say today was the hardest I’ve had in a while waiting for the results of his scan, I mean it….and in typing this, I just got nauseous.  I do NOT wish this journey on anyone

One of the hardest parts of this journey is that not only was my son born with cancer but because of the cancer, he had to have a part of his brain removed which has now affected his development.  That’s a tough pill to swallow.  Yes, he is cancer and treatment free now but we have a whole different road ahead of us!  Yes, his developmental pediatrician has given us the green light and hope that he will catch up and develop normally but I want my “normal” baby now!  It makes me angry at times, sad at times, it sucks….but thank God my kid is cute! 😉

I can’t wait for Logan to grow up and have all of this behind us and share how strong and brave he was and share all that he has overcome!!!!

Scanxiety is real, knowing what the worst case scenario could be and was is the toughest pill to swallow.  I’m sure it will get easier over time but when your child doesn’t communicate, they are 6 months post treatment and being a “terdler”…that’s the trifecta of trifectas! I’m sure I am rambling at this point but I wanted to share how hard today was and how tough this journey is.  But I am GRATEFUL for every day, every moment because we have been through the worst and things can only get better.  So please keep praying for our baby to continue to be free of this disease, please pray for Logan’s development and  pray for his mommy and daddy!

#LoganStrong

#MamaStrong

#StrongasFogg

#PuckCancer

#tinysuperhero

#PrayerWarriors

 

Posted by Jennifer Fogg in Logan, 5 comments

Bell Ringing/Port Removal Eve – #mamastrong unplugged

So many mixed emotions about tomorrow.  Having a child with cancer and going through continuous treatment is all I know.  I will always worry if his tumor will come back. I will always worry if his development will ever catch up.  I will always worry what my son’s life will be like in the future.  Will there be more side effects from the treatment.  Will he ever walk, will he ever talk, will he ever eat enough by mouth so we can get rid of the g-tube.

Getting my son through treatment is all I know. And I did it. We did it.  Yes, I am excited for this next phase in his life (our lives) in which we can focus on his development.  And yes, I wonder all those things but I am strong enough, my husband is strong enough and god damn it, Logan is strong enough to overcome all of these developmental delays.  But that doesn’t mean I don’t have doubts or worries or fears.  No one will ever understand the emotional roller-coaster of being a cancer mom and I hope none of you ever do.  It’s not a cake walk, it’s not all sunshine and roses….it fucking sucks.  But I’m not a quitter, neither is my husband and we all know that Logan isn’t either.  But I really just can’t express all my emotions and thoughts right now.

It’s weird…you would think I would be ecstatic, my son is ringing the bell and getting his port removed tomorrow.  This signifies the end of treatment.  Then I feel guilty for all of our other friends that are still fighting.  I feel guilty for some of our other friends that lost their babies to this disease.  I am crying as I write this because I honestly don’t know how to feel right now.

My therapist warned me about this…. the emotional roller-coaster that was on the horizon when treatment is officially done.

I have so much to do tonight before tomorrow and to prepare for my work week, I had to stop and get this off my chest.

As I sit in my office typing this, my husband is in the other room with Logan playing, I love the sound of that.  I am grateful that we get to experience that.  Many cancer families don’t.  Like I said, it’s part guilt, part fear, part excitement, part gratitude, and honestly, I sometimes wonder how we got so lucky to have our baby be the miracle.  I know I shouldn’t question that but this has been such a long road and we have seen the good, the bad and the ugly.  And yes, I know he deserves it, we deserve it, but again, the emotions I am feeling right now are so hard to put into words.

I am writing this in one shot, no edits, no going back and re-reading.  I just need to get this out and share.  I will be sure to update you all as our day progresses tomorrow. And I still need to write the blog post about GMA and Robin Roberts, don’t worry, I will.

Kevin, Logan and I will be on Spectrum News 9 tomorrow, interview with Jodee Kenney.  Then I will be on Channel 10 Tuesday morning at 6:45 am and FOX 23 at 7:45 am, with Nicol Lally and the morning crew.

To all the families at clinic tomorrow, I pray that your child gets the same opportunity to ring the bell that Logan does.  And I apologize in advance for the large entourage that will be there with us!

Thank you to everyone for your continues prayers, love, thoughts, etc.

This mama needs a glass of wine and bed….

Goodnight

#mamastrong

 

Posted by Jennifer Fogg in Logan, 1 comment

The Final Countdown….

The Final Countdown……..

WOW!  I can’t believe it’s been four months since my last blog post.  I just had to read it to see where I left off with sharing our journey.  There is so much to update you all on; mostly good, nothing “bad” per-say, just some bumps in the road. All in all, Logan is doing very well and we are just enjoying every moment we have with our #tinysuperhero.

Where do I start?!?! May was the golf tournament; June, we lost “Ocho”; July, Logan LOVES the water and had an MRI and hearing test, August…. well, I will get there soon.

Okay, here we go….

LOGAN STRONG FOUNDATION: INAUGURAL LOGAN CUP

On May 18, 2018, we officially launched the Logan Strong Foundation with our Inaugural Golf Tournament at Western Turnpike Golf Course.  We chose that location because that is where Keith and I, I mean Kevin and I got married (that’s a funny story I will share some other time!).   I’m not a golfer but have been to numerous golf tournaments in the past and was surrounded by the right people who do golf and know how to run a tournament.  Shout out to the Logan Strong Foundation Golf Tournament committee:  Sari Medick, Michelle Nolan, Marisa Multari, Whitney Pangburn, Joslyn McArdle and Shawn Enides.  For a first-year event, we netted over $30,000, which is unheard of.  We have since been able to get:

  • “No Touching” signs
  • “Ocho’s”
  • Donated $1,000 to The Massry Family Children’s EmergencyCenter at Albany Med
  • Charging stations for Melodies Center & Ronald McDonald House Room (in progress)
  • T-shirts and bracelets to help local families fundraise
  • Art supplies and other items to help kids and parents pass the time
  • $250/month in gift cards to distribute to Melodies Center families
  • And much more……..

I am so proud of the efforts made with this inaugural event and the infancy of the Logan Strong Foundation.  We are looking forward to helping more families in the future!  Thank you to everyone that has donated, volunteered, played golf or contributed in any capacity…. we are grateful for you all!!!!

 

 

 

“OCHO” = DEVASTATED

The end of each round Logan has to spend 2-3 days in the hospital for chemo as there is a drug that has to run alongside of it and it’s just easier to do inpatient.  At the end of Round 5, we LOST OCHO!!!  NO, we never did find him.  YES, I am completely devastated.  We looked everywhere for him once we knew he was missing.  Albany Med even called their laundry company and shared photos with their staff in hopes he would turn up.  The only logical answer is that when Logan got sick the last day in the hospital, Ocho somehow ended up in the garbage when they changed his bed sheets.  I literally cried for a week.  Ocho means more to me then to Logan, it was the first one he was sent the week he was diagnosed.  We have a couple that “look-like” Ocho or as I say F-OCHO (fake Ocho) or as Michelle says; “stunt doubles.” But Ocho will never be replaced.  Thankfully Ocho is in many pictures with Logan and he does have two others that look very similar.  They just aren’t as warn and thin…LOL, a thin octopus!?!?

Anyway, I got a tattoo on the inside of my wrist earlier this year and I kept thinking there was something missing on it. So, I have decided to get Ocho tattooed in that spot…can’t wait!!!!!!!

 

 

WATER BUG AND MRI/HEARING TEST

If you would have met Logan before his diagnosis, you would know he HATED water.  He would scream every time we gave him a bath.  This continued through the past year and a half or so until recently.  We decided to try to ease him into the tub and brought along some music to help.  This started to work, then it didn’t, then it did.  He finally started to like the bath.  So back in June, I reached out to Early Intervention and asked if Logan could get Aqua Therapy, there was a waiting list that he quickly went to the top of because of his needs. He now LOVES the water.  We went away with Aunt Sari and her family in the beginning of July and he spent the whole day in the pool with Aunt Sari (while daddy took mommy on an adventure, that’s another story).  Mommy enjoyed the pool there as well because it was a salt water pool, made me like swimming again!  Fourth of July we went to our friend’s camp in Sacandaga and I swear this kid spent the entire day in the lake.  We then had a birthday party a few days later and he spent most of the time in the pool with daddy.  I am so happy that he finally likes the water.  He allows us to bathe him no problem and is making such great progress at Aqua Therapy.

 

Now, let’s talk about his every three-month MRI.  On Wednesday July 11, 2018, Logan has another follow up MRI.  He has an MRI every three months to monitor where the tumor was.  This time they added an ABR (Auditory Brainstem Response) to measure the way the hearing nerve responds to different sounds, using a special computer while sedated.  We were really excited about this because although we knew Logan could hear (he loves music), we knew that some of the chemo’s he was/is on could cause hearing loss and his speech/communication was delayed.  It’s so hard to determine hearing loss on a child without this test.  It’s not like he can raise his hand when he hears a noise on the right verses left side.

Just the MRI takes about an hour.  Adding the ABR adds another hour to two hours. I’ve lost count the number of times this poor kid has been sedated! As we were waiting for Logan to wake from sedation, the hearing technician, came to share with us the test results.  She pulled us to a quiet area of the waiting room and told us that Logan has “significant hearing loss.”  So, I replied with, “Okay, what does that mean.”  Significant is a pretty broad term.  Is it significant because it’s more than 50% or because it’s almost 100%?  I looked at the paper in front of her with different numbers on it but she still wasn’t’ giving us a clear answer. My husband asked about implants, she didn’t think he would be eligible and/or it was necessary.  We asked if it was permanent and she said most likely but we don’t know.  This was the third time (if not fourth) that Albany Med’s hearing department gave us wishy washy answers.  We then asked what our next steps were and she said they wanted to repeat the test in three months (during his next MRI) to discuss hearing aids at that point.  They just wanted to make sure the tests came out the same.  Logan started to wake up so the nurse came and got my husband and father. I told them to go take care of Logan and I would sign the paperwork with the hearing technician to release his records to his other doctors and Early Intervention.  She then says to me, “Are you okay with this?”  I replied (crying at this point), “No, I am not okay with this but I’ve heard worse news in my life.  Just tell me what we have to do to fix it.”  It’s literally that simple.

After Logan woke up from sedation we went to see Dr. Adamo to recalibrate his shunt and get the results.  If anyone wants to see my kid being a complete pain in the ass, nutcase…. you should see them trying to adjust his shunt…. woah!!!!   The MRI came out clear – no change since the last scan.  This was great news!  We have been extremely confident and comfortable with MRI’s lately; as we know how well he is doing and the tumor will NOT come back!

We then proceeded to clinic for a check-up.  We had an appointment with Dr. Lucas that day as Dr. Weintraub was away at a conference.  Dr. Kenneth Lucas recently joined Albany Med as the Director of the Melodies Center and his sister Dr. Judith Lucas is Logan’s Developmental Pediatrician.  We discussed the results of the MRI a little more as he was checking over Logan.  Then, we mentioned to him the results of the hearing test and the “significant” hearing loss and that they wanted to rescan in three months then do hearing aids then.  Dr. Lucas said that if he needs hearing aids, why are we waiting, let’s get them now to help with his development.  Kevin and I agreed and Dr. Lucas sent the request to the hearing department.

Frustrated with how Albany Med’s hearing department has handled communicating the details of Logan’s hearing with us, we decided to get a second opinion.  Not that we didn’t believe the exams but I needed better answers than just my son has significant hearing loss.  We ended up going to see Dr. Kate Meade at Sunnyview who came highly recommend by two close family friends.  She was able to get us in within a week, did a similar sound booth exam and explained to us Logan’s hearing loss in a way we could better understand and figure out next steps.  Yes, Logan has significant hearing loss but it’s different ranges and pitches.  He can’t hear birds chirping or wind blowing and then also low, deep tones.  He can hear (obviously, he loves music) but is missing certain tones to help with speech development.   Within three weeks we ordered, got fitted and had his hearing aids in hand (well, in his ears)!

 

FAMILY MEETING….

Logan has had five rounds of very aggressive inpatient chemotherapy and protocol is to have eight rounds of outpatient chemotherapy, as well.  He just finished round 6 on Tuesday August 14th.  So, it’s normal for us to have family meetings every couple of rounds to discuss what our next steps are, if we are changing anything or if there is new research.  On Friday August 24th we had a meeting scheduled with Dr. Weintraub to discuss that last two rounds of Logan’s maintenance chemotherapy.  Unfortunately, Kevin couldn’t get out of work, so my in-laws came with me and we were going to call Kevin when we got in the room.  We got to clinic for Logan’s 10:30am appointment and were immediately greeted by Dr. Weintraub and our other friends at clinic.  She asked if Logan got a finger stick yet (bloodwork), I said no and she sent us down to do so.  Miss Jordan went down with us.  It was nice because she use to work in Dr. Adamo’s office but was now working at the Melodies Center. We came back up from the lab and met my in-laws.  Dr. Weintraub asked to speak to me privately, which was strange.  I was nervous, not knowing what she wanted to tell me.  Dr. Adamo just happened to be in clinic visiting another patient and was able to sit in on the meeting.  She pulls me into a room and says, “We’re done!”  I looked at her in shock and just started crying.  I asked if she was sure and she said yes!   I questioned her because we have had conversations in the past about possibly stopping and/or cutting back but that never happened.  Dr. Weintraub is extremely overly cautious and really does treat Logan as if he was her own.  She said there are new studies that show that the type of tumor Logan had actually acts like a lesser grade. Medically he was diagnosed with a congenital glioblastoma and they have come to find that they act like low grade gliomas.  Totally different than what we initially heard when he was first diagnosed last year.  She is now confident that Logan is going to be okay and that the tumor is not going to come back.

Still in shock, crying, I asked her what our next steps were then if we are done with treatment.  She replied, “We need to remove his port.”  That’s when I totally lost it, I knew now she was serious about being done.  WOW, just WOW!!!  Dr. Adamo was just as excited.  I couldn’t stop crying.  This was not what we expected at all.  I gave each of them a hug and tried to contain myself as I wanted to wait to tell my in-laws until we got into a private room.

We thought for sure we had two more rounds and three months left of treatment.  The last discussion we had with her was that we were going to eliminate the chemo that damaged his hearing and cut back on others.  Dr. Weintraub has mentioned to us before that she was thinking about stopping but this was really it.  We are really DONE!!!!!

I went back out to the waiting room where my in-laws were waiting with Logan.  They could tell I had been crying but neither they or I said anything.  We finally got Logan into a room and I started crying again and I told them that we were done.  We had the longest, tearful group hug!  I tried calling my husband but he didn’t answer.  I then went into the room next to us to tell Gracie and her mom, Laurie.  We were all crying happy tears.  I finally got a hold of my husband and Dr. Weintraub came back into the room so I put the phone on speakerphone so that she could tell him the news. Kevin was just as excited as I was.  But, I love that he asks questions that I don’t (didn’t) think of. He’s very analytical where I am the emotional one.  It’s a great balance.

To top off the exciting news of the day, we had an appointment at 4pm with Dr. Meade to pick up Logan’s hearing aids.  Kevin, Aunt Sari and both of my in-laws went.  The more the merrier, as we had to learn how to put them in and clean them.  We didn’t see anything drastic to Logan’s hearing immediately but as the days went on, you could see his interest in certain shows had increased and his belly laugh was so much greater than it has been.

So, that Sunday we had a Fogg Family Barbeque to celebrate Logan being done with treatment.  On Monday, I received the call and scheduled his port surgery for Monday September 10th.  That same afternoon Logan will ring the bell in clinic signifying that he has completed treatment.  I have tears and chills just thinking about it.  I can’t believe we are done!!!!

 

OUR JOURNEY IS JUST BEGINNING….

If anything, this just means that our journey is re-starting, continuing, getting better.  We can now focus on Logan’s development.  He will continue to get PT 2x/week, OT 2x/week, Special Ed 2x/week, Aqua Therapy 1x/week and Music 1x/week.  We have since added a speech therapist and a teacher of the deaf.  We are also excited that we have two more lovely ladies to help out with Logan’s care.  Miss Leanne Baker, who is another wonderful cancer mama that lost her beloved Ava last year.  And, Miss Tommie Burch, who is a family friend and knows sign language.

We are beyond elated to share the news that Logan is done with treatment and we hope that you will continue to pray for our little guy and follow our story.  We have so much more exciting things to share with you all in the future!

So, on this,  the first day of September, Childhood Cancer Awareness Month, I ask you to pray for all of our babies fighting and share our story.  Help us raise awareness and funding for all of these #tinysuperheros!!!!

 

 

 

#LoganStrong

#PuckCancer

#MamaStrong

#DuckPrints

#PrayerWarriors

#ChildhoodCancerAwarenessMonth

#MoreThan4

 

 

Posted by Jennifer Fogg in Logan, 10 comments

Happy Easter….my journey to God!

I was initially going to write this as a Facebook post but after really thinking about what I wanted to write, I wanted to make sure I was able to share it with all those that have been following our journey.

Let me start with how I was raised; my father was (is) an atheist and my mother was raised Catholic. My father didn’t want to baptize me but my maternal grandfather refused to have a grandchild not baptized and since my father was baptized Lutheran, they agreed that I would be as well.  My mother and my father did not raise me in the church, they wanted me to find my own way and make my own decisions.  Prior to meeting my husband, a little over seven years ago, I had only been to church maybe a dozen or so times.  I never disbelieved in God but I never “really” believed either.

Interesting enough my first tattoo was the Irish Claddagh cross with my middle name, Faith, down the middle of it.  Now, that in itself is odd, considering my middle name literally came from a baby book and had a hard time saying it as a child.  I would say “face,” not Faith.  I do love my middle name and I have “Faith” pictures, mementos, etc. everywhere in my house, car, office, etc.   Anyway, even when I got that tattoo at 18, I wasn’t a religious person.  I have always been a very spiritual person, but not religious.

Not until I was about 22, did I truly start believing in something bigger than me.  At 22 years old, I became pregnant, I wasn’t married or even in a relationship at the time and I had no clue what I was going to do.  I prayed and I prayed as to what I should do and God made the decision for me.  I ended up having a miscarriage.  Now, don’t get me wrong, that was a horrible and very emotional experience and I hate that it happened.  But it happened because God knew that at 22 and single, I was in no position to become a mother, nonetheless raise a child on my own!  I thank God every day for making that decision for me.  That is another reason why I believe he waited almost 20 years to give me Logan!

Fast forward to meeting my husband, finding the perfect career, getting married and trying to have a baby.  When we were ‘trying’ to have Logan we had to see a fertility specialist, literally to just give us a kick start in the process.  On one of the days I was headed to get testing done, I was the victim of road rage. I ended up doing a 360 on the Thruway getting off Exit 24 in morning rush hour and managed NOT to hit any other cars, including the guard rail which I landed inches from.  God was definitely watching over me that morning.

Everything about my pregnancy was easy…the only concern was Logan’s slightly enlarged kidney, which was a common abnormality, no big deal.  Then came the hemorrhage and he was born via emergency C-section.  I argued with one of the doctors who told us that Logan had a deadly platelet disorder and I said to him, “God did not give me this baby at 40 years old to take him away, you take him out and fix him!!!” Logan stayed in NICU for five days and was tested for everything and they couldn’t find anything wrong!  The called him the “Miracle Baby” of Albany Med.

Now that brings us to the day that Logan was diagnosed with a Glioblastoma. The doctors said that there wasn’t much they could do and to prepare ourselves for the worst.  Again, I couldn’t help but feel that ‘God didn’t give me this baby at 40 years old to take him away!”  This is when I put out there that our baby needed prayers.  I never shared Logan’s diagnosis in the beginning, just that we needed prayers!  Sure enough, three days later, the doctors came back to us and said that he had a Congenital Glioblastoma and were now ‘cautiously optimistic!’

I share all of this because throughout this past year, with everything we have been through with Logan, it has helped me reconnect with God and believe in the power of prayer!  Sometimes it takes the worst things in life to find the best things about life.  There is no doubt that Logan chose my husband and I to be his parents for a reason, all of the connections and ‘coincidences’ that have happened over this past year are surreal!  I say ‘coincidences’ in quotes because honestly, I don’t believe in coincidences, I truly believe everything happens for a reason….and God gave us Logan for a reason.  Because HE knew that we were strong enough and financially, mentally, emotionally and spiritually able to handle the situation and overcome!!!

Even though I have been going to church with my father-in-law and Kevin’s grandmother for the past couple of years, I found myself needing something more.  I needed to be closer to God, to understand God and learn more about the Bible and who these people were that we call the Father, the Son and the Holy Spirit!!!  I needed to learn more so that I could raise my son in the church and help explain to him the Catholic Faith and how his parents believed and how strangers have prayed for him.  I needed to do this for my son, for all of you that have prayed for our family over the past year and most importantly, I did it for me!  I did it so I could be closer with God and have Faith in the world and in this Life.

So, last night at Easter Vigil, I received my first communion and confirmation at St. Joseph’s Church in Scotia, surrounded by my closest loved ones!

Thank you for letting me share this with you!  Thank you to my dear friend Bridget Wells-Smith for being my Sponsor through this journey. Thank you to my husband for your support always and my mom for helping to watch Logan the nights I had RCIA class.  Thank you to my in-laws who drove up from North Carolina to be there for me as I got confirmed.  Thank you to my BFF, Colby Enides, who is not religious but sat through the two-hour mass and even received communion, to support me.

Thank you to our Church Sponsors Dan Stec and Helen Burke and thank you and congratulations to Andrew and Maxwell who also got confirmed with me last night!  And of course, thank you Deacon Stephen Lape and Father Peter Russo!

Needless to say, my middle name is Faith for a reason and I chose Saint Brigid as my confirmation name as she is the patron Saint of infants, and also to honor my Irish heritage and my sponsor!

I hope you all had a very blessed Easter and Passover!

 

 

Posted by Jennifer Fogg in Logan, 9 comments

One year later….

One year ago, today, my life changed forever.  At the time, I thought my life was over, my world shattered and my heart broke in a million pieces.  I have been through a lot in my life; being attacked by a Rottweiler at 16, being beat-up by an ex-boyfriend, having thousands of dollars and a vehicle stolen from me, among other disastrous things, but nothing prepares you to hear the words, “your child has cancer.”  I’m crying as I type these words.  NO ONE should EVER have to hear those words, especially when it’s your child, a baby nonetheless.

I will never forget the look on the doctors’ face when he told us, or the words that he said.  Looking back, it’s crazy how everything happened and as much as it sucks, and I’ve said this before, everything happens for a reason and our son chose us to be his parents for a reason.  There are way too many things and coincidences that have happened over this past year to make me believe otherwise.  Too many people have come in our lives for a reason and at just the right time.  It’s so surreal!

Never did I think that when I became a mom for the first time at the age of 40, becoming a cancer mom was part of the package.  I hate that word, and I hate that I am a cancer mom, but I LOVE my son. I will, and would do, anything for him to make him better, and provide him with the best opportunities in life.  So, with that said, as much as I hate that I am a cancer mom, I AM PROUD to be a cancer mom and I am even more proud to be LOGAN’S MOM!

The emotions and experiences that we have been through this past year are so unreal.  It’s like watching a movie of your life, in real time.  This isn’t supposed to happen, this isn’t real….but it is!  And the reality is, we aren’t promised tomorrow but you bet your ass, I am going to enjoy every moment with my son and fight until the day I die for him to survive and get the best damn care there is!  I half-jokingly say that our life would be a great reality show if it wasn’t for HIPPA!  😉

I don’t even know where to start or really what to write at this point as I feel I do share a lot and am very open with Logan’s story and his progress.  It’s not easy, AT ALL, but we do it, every day!  I am so glad that this year is behind us and am looking forward to saying that for many years to come.  I don’t wish my son to grow up fast, but I do wish for these times to be a distant memory.

Just because my son is technically cancer free right now and we are almost done with chemo, that doesn’t mean we don’t have a long road of healing ahead of us.  Logan had a piece of his brain removed where the tumor was.  Thankfully because of his age, he has the opportunity to overcome any delays or deficiencies but we have a lot or work to do!  He is getting physical therapy and occupational therapy, twice a week each.  His special education teacher starts next week and we will also be adding in music therapy, weekly.  We are so grateful for all the people in our life and the services that are available to us.  But it’s a constant struggle and battle at times to figure things out.  I think this is what bothers me the most, the developmental delays.  It’s like I’m mourning the loss of having a “normal” child.  The baby that all parents envision, walking, talking, crawling, eating, etc.  We don’t have that, that is what I mean when I say “normal.”  Logan hasn’t taken a bottle since he was 5 months old.  This hurts!  He is almost 16 months old and barely stands, he should be walking by now.  He’s never crawled, nonetheless had more than five minutes tummy time!

When someone would say to me, “I don’t know how you do it, you’re so strong.”  I use to respond by saying, “You would do it too if it were your kid.”  But the truth is, I don’t know if they would or if they could.  I think the fact that we waited until our 40’s and established in our careers really helped with our understanding and dealing with Logan’s diagnosis and in turn helped with his progress.  He is doing as well as he is because of who my husband and I are.  And I don’t say that to “toot” our own horns, I say that because we are positive people by nature and truly try to see the good in any situation.  We both have done so much good in our lives, giving back, donating time and money, helping others, etc.  That is why Logan is doing so well and we have such a strong support system…because we worked our asses off for it and damnit, we deserve it!

We have had the right people in our lives, at the right time, always, throughout this whole situation.  From the time I became pregnant until now….the people that have been put in our path have been there at the right time, every time!!!  Why…because we deserve it, Logan deserves it and it’s God’s plan!  He is here for a reason and we are NOT giving up….EVER!!!!

Yes, our situation sucks but me sitting around crying about it isn’t going to make it any better.  Do I allow myself moments…abso-fucking-lutely!  I have plenty of moments but what is that going to solve, where is that going to get me or my son.  My son is a fighter because his father and I are fighters.

I am now back to work full time, I have new agents that I am training along with managing my own accounts.  I started the Logan Strong Foundation to honor my son and help other children and families battling this awful disease as well as being a mom and a wife, it’s exhausting.  But it also drives me!  I wouldn’t be who I am or where I am without the people in my life.  You all know who you are and I love you all tremendously!

This isn’t my best blog post, but I think it’s the most honest.  Thank you for reading and letting me share this journey.  I honestly thought today was going to be harder than it was, last night was worse I think because of the anticipation of today.  I want to celebrate today, not mourn the day.  The fact that we made it a year is HUGE!!!!  Considering that we have been told numerous times that our son wasn’t going to survive and he continues to overcome and prove that he truly is our miracle baby!  I can’t wait to see the BIG things the future holds for this #tinysuperhero!!!!

I now have a mission in life…..to help raise childhood cancer awareness and help to provide support to others fighting this terrible disease!!

#LoganStrong

#MamaStrong

#PrayerWarriors

 

Posted by Jennifer Fogg in Logan, 1 comment

Announcing the Logan Strong Foundation

Announcing the Logan Strong Foundation

Jennifer, Kevin and Logan Fogg are thrilled to share with you the establishment of the Logan Strong Foundation*. The Foundations’ purpose is to help raise childhood cancer awareness, and to provide items of comfort and support for children and families, while they are fighting cancer in and out of the hospital.

Our initial Event will be the First Annual Logan Cup, being held at Western Turnpike Golf Course in Guilderland NY, on May 17th, 2018. We will be doing our Foundation Ribbon Cutting just prior to Tee Off and are excited to be partnering with many local businesses for this event.  In addition, we will be hosting a networking cocktail hour and dinner starting at 6 pm, following the end of Tournament Play, for those who wish to support the Foundation and efforts, without Golfing.

We are excited for this event, and the possibility for helping families during this very difficult process, which we have experienced first-hand.

Registration for the First Annual Logan Cup Golf Tournament, and additional details on sponsorship opportunities, along with the Cocktail Hour and Networking Dinner, can be found at www.Facebook.com/LoganStrongFoundation.

*501c3 Status Paperwork filed.

Posted by Jennifer Fogg in Logan, 0 comments

2017 Reflection

2107 Reflection

As I look back on this past year, I am filled with mixed emotions.   It has been by far the WORST year of my life but also, the BEST year of my life.  I have learned so much, especially in these past 10 months.  I am not the same person I was this time last year.  I am changed, I am better and I am stronger!  I have transformed both personally and professionally; as a mother, a wife, a daughter and a friend.  I have gained many new, valued friendships and have let go of some that weren’t so healthy.  I have more patience and kindness.  I have found inner strength and courage I didn’t know I had.  I have added way more to my plate than I have ever imagined but it has taught me to balance.  (I would have never thought this situation would teach me balance.)  I am more focused as to how I spend my time and who I spend my time with.  So much good has come out of this bad situation.

 

So, to sum it up.  I’ve learned….

….to have more patience and kindness

….to trust and believe in my faith

….to believe in God’s greater plan

….to ask for help when I need it

….to balance my time

….to juggle a million things at once

….to put my son and my family first

….to focus on the positive

….that I am stronger than I ever imagined I could be

….that I have some really great friends

….and I also have…had some really shitty friends

….what is important

….when to let go and when to walk away

….way too many names of medicines and procedures I never thought I would know

….that mostly people are good

….that people don’t always know what to say or say the right thing

….that at the end of the day family is all that matters

….that everything happens for a reason

….to live every day to the fullest

….to let myself feel any emotion

….that my son is truly a miracle

….that my husband actually has emotions 😉

….that I am truly blessed with the best in-laws and parents

….that Childhood Cancer Awareness NEEDS MORE FUNDING

….that I work for an AMAZING company

…and how thankful I am to people near and far, who have reached out, even if just to share an encouraging word.  They say it takes a village; we are so truly grateful for the village that has encompassed us all in love.

And the BIGGEST things I have learned are:  Faith ALWAYS wins and Miracles DO happen!!!!

Thank you all for being on this journey with us!

Wishing you all a safe, happy and healthy 2018!

 

We are all #LoganStrong

 

#MamaStrong

 

 

 

Posted by Jennifer Fogg in Logan, 1 comment