Month: June 2017

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 MommaFoggAdmin 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 MommaFoggAdmin in Logan, 5 comments