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
- 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)!
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!!!!