Brierley – Strength In Numbers

Update posted by Nicole Brierley On Nov 18, 2015

I didn't even realize it has been so long since I updated this site! If you haven't found our Facebook page already, https://www.facebook.com/nicholasbrierley/?ref=hl, you can follow Nick's story there and read about the last couple months. I guess I have been better about Facebook posts because it is easier to share photos with the updates. However, I do receive notifications when a comment has been posted here, so I have been reading each and every one. I do so appreciate those, thank you for taking the time to encourage us, and pray for our family. Nick is almost ready for the 5th round of chemo, out of 7. Please like our Facebook page, Nicholas Strikes Back, to catch up on the last rounds of chemo along with Halloween at St. Jude, his Times Square appearance, and to see all the special things being done for our family. We are grateful for the many blessings we've received through this hard time in our lives. I copied here the latest update from a few days ago that celebrates his ANC recovery after a long inpatient stay - most of which was in isolation. We praise God for answering our prayers and for this time together as a family before he goes back in for round 5 next week.

Nick's ANC has finally reached high enough and even went over our goal this morning, it's up to 600!!! We finally get to leave! Still keeping an eye on his labs, His hgb is great, but his platelets have dropped again. Right now they are still above the minimum level, so no need for another transfusion just yet. Nick has to finish his course of antibiotics, but since he tolerated everything by the tube yesterday, we are good to go! We have been admitted for 12 days, and the only thing Nick has eaten by mouth was 6 brown rice crackers and ice chips! I don't know what we would have done without a feeding tube. And I am so grateful nothing developed leading to a bigger issue with the tube. It's not that Nick was just full from his feeds that he didn't want to eat... His tube feeds are what sustained him because he couldn't stand the smell or even the thought of food and would become physically ill. These past 2 weeks have been an emotional roller coaster for Nick, something that he's experienced before but still struggles to accept and get through. We are thankful for the uplifting moments that give Nick joy - just wish the lows didn't have to be so far down.
It looks like the official diagnosis for this phase was c-diff, trauma (bruising and swelling from a trip on his line and probably the recent switch) and possible cellulitis. All that going on would be painful enough, but when his counts dropped, it only amplified the pain and had difficulty healing.

Packing it up, it's discharge day!

"For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope. In those days when you pray, I will listen. If you look for me wholeheartedly, you will find me."
Jeremiah 29:11-13

I can do all things through Christ who strengthens me.
Philippians 4:13

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Update posted by Nicole Brierley On Aug 24, 2015

Nick spent 4 days admitted in the hospital after he started chemo on Aug. 8th. After he was discharged, we went back to our room in one of the St. Jude housing facilities, where we wait to be moved to the long term housing, as soon as a room is available. It has been a blessing in my eyes, being able to stay at this particular location so long. Here, we conveniently receive meal cards to use at the cafeteria, and being right on campus, we just walk to appointments rather than plan on shuttle service. Best of all, nurses and doctors are just steps away, 24/7! We will also be getting our own apartment this week when the rest of the family joins Nicholas and I, which is thanks to the many of you who have helped us financially cover these huge, additional costs. Since St. Jude only provides housing for families of 4, we needed some extra room!

All things considered, Nick handled his first round of chemo really well. Nick remained on fluids and nausea meds round the clock for the first 3 days after being discharged, which meant, I needed to learn how to give Nick these meds through his port. There will be a lot more I will be learning along the way, next will be how to use a g tube. Nick has struggled with his weight, and though he gained some over our break, I think the anxiety got the best of him again and he lost it all. He returned to St. Jude weighing less than what he did when we left. Nick is down to 48 lbs. He was 61 in April when this nightmare began. Being NPO for sedations through radiation definitely contributed to the loss, but even though that?s behind us, it is a continual struggle taking meds and eating food, and we need to do something about it. So Nick will get a feeding tube before his next round of chemo in September. At this point, we are thankful for all the positive things a g tube can do for him. Not only will he get all the nutrition he needs, he can also get his meds through it, which has already made Nick feel more confident to get through this. And he can eat what he wants, when he wants, so there is a lot of pressure taken off his shoulders.

Nick gets blood work twice a week now. He needed a platelet transfusion last week, and a blood transfusion a couple days ago. He had a slight reaction to the platelets, but that is fairly common and it was completely controlled with Benadryl. Nick?s ANC is 0, which means he is neutropenic, and cannot fight any bacteria. If he develops a fever, he needs to get admitted right away and will have to stay there until his counts rise again, about a week or so, it all depends. There have been a few days that he went to bed at 3 or 4 in the afternoon, and was down for the entire night, but otherwise he has felt pretty good. He is actually even eating! Cheerios, bananas, strawberries and french fries. That pretty much covers it, but the amount is impressive!

Nick?s outpatient schedule has been much less rigorous these last couple weeks compared to a week of radiation. He gets labs - twice a week, school - 3 times a week, clinic visit - twice a week, and music - once a week. He also has random Occupational and Physical Therapy visits mixed in. Once a month Nick will also be receiving a hearing test to monitor any hearing loss resulting as a side effect. For fun we take walks, read Keys for Kids, play video games, watch movies, play sorry, and loves to try and defeat me using ?The Force? - and just about ends up victoriously every time. Good thing I brought 2 lightsabers!

This is a very exciting week for us. Reuniting in time for a special celebration. A gift we will forever be grateful for.

Philippians 4:13

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What a courageous young man Nick is! So good to read your update so I can pray specifically for Nick’s situation, for his complete healing, and for your family as you navigate this difficult path together! May God grant you wisdom for each decision, strength for each day and increasing faith in our Faithful God.

Gail Voigt

Update posted by Aug 24

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Update posted by Nicole Brierley On Jul 06, 2015

Our first week home has flown by. We've been busy enjoying these New England summer days, something we will miss in Memphis. It?s been a joy to watch the kids just being kids, at the lake, the beaches and at home with friends. They swim together, make snacks, and play games. The boys, (Nick, Joey, and their buddy, also Nick), can race RC cars and build legos all day! Julia is not left out, she plays with her friends too, Kaitlin and Karli, with their Littlest Pet Shop toys, Barbies, and Ponies!

This week Nick's Auntie Kelly came to visit and the Stratis family also came for the weekend. We spent the 4th of July on the boat and watched the fireworks on the lake. It was a great week.

We are trying to make the most of each day, but the reality is that this is a very different school summer vacation than what we are used to. He has accepted that there are some things he can't do right now, and he is making an effort to make the best of it. He can't ride his bike yet, he tried, it didn't go well. When he swims, he gets cold, fast! But he has learned to pack warm clothes, sometimes he floats instead of swims, and he makes good choices, when and when not to get wet. These are simple solutions to find ways to have a good time. However there are other effects of his cancer treatment like nausea and vomiting, anxiety, and just having to take daily meds that are constant reminders of his fight.

We have received so many cards and gifts that have made us smile and encouraged us when we really needed it. Please know how much we appreciate your generosity and thoughtful messages. We feel so loved by your kind hearts and prayers!

Philippians 4:13

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Update posted by Nicole Brierley On Jun 22, 2015

Earlier this week, Joey and Julia headed home with MeMere and Poppi, but we will be right behind them! Before they left, we had a chance to check out the Memphis Botanic Garden. They allowed us in at no charge, and we are so appreciative of this especially because we could only spend a short time there. Nick is weak, and needed a wheelchair to see the park. For a brief time, he found enough energy to enjoy their play area and have fun with Joey & Julia - which always makes him happy.

Last Tuesday I posted that Nick gained weight 2 days in a row! Praise God, it looks like the appetite stimulant is working!! We are trying to find a balance though, because he can't tolerate too much food at once. With just 3 treatments left before our break, the last day can't come soon enough. Nick's skin is really irritated from the high dose radiation, "boost" therapy. He has also mentioned a ringing in his ears we are keeping an eye on. As we wrap up this week, before his daily radiation appointment, he will have his usual school, physical therapy, nutrition, music, clinic visit, and lab visit for his weekly blood draw. He will also see the endocrinologist, and speech therapist as he did at the beginning of treatment so they can monitor his progress.

Also this week, Nick got to chat with his class over FaceTime. The kids were full of kind things to say and all took turns asking him questions about what it's like at St. Jude. It was great to be able to thank them again for participating in the Penny War! The local newspaper published a story on Thursday, here is the link below.

'Penny War' raises $4K for student battling brain tumor

We are really looking forward to being home again, getting Nick healthy and ready for chemotherapy. Nick has done an amazing job facing his fears and staying strong! "I can do all things through Christ who strengthens me." Philippians 4:13.

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Update posted by Nicole Brierley On Jun 15, 2015

We reached two big milestones in Nick's cancer recovery plan this week! The first is, last Wednesday marked the end of radiation to Nick's spine and entire brain! We were anxious for this day to come because it meant he could benefit from less radiation in several ways. Nick has continued to drop even more weight this week, and we are very close to having to resort to a feeding tube, which of course, no one wants to happen. We are continuing to pray for Nick to eat! We have reason to believe we will see improvement though, based on: 1) since his spine is no longer receiving radiation, that means everything in front of his spine, like his stomach is also no longer receiving any radiation. See, the radiation entered his body from the back, and exited out the front therefore, even his stomach was receiving some radiation... Until now! Since it's over, we are hoping he won't be as nauseas anymore. 2) Nick started a new med, which is an appetite stimulant. Hopefully if we make him hungry, he'll eat! So far, it seems to be helping!

As for the sedation, unfortunately, daily anesthesia will still remain a factor to hinder his progress to gain weight. Nicholas tried his treatment on Thursday without sedation, and though was able to complete it that day, the doctors feel it is best to continue his remaining treatments asleep. These last 10 will be a direct "boost" of radiation to the tumor bed. The results of the MRI last week showed that the tumor bed (where the tumor was) is shrinking, which is great news! Only 8 more treatments to go and we are going home for a break!

The second big milestone was, it's one month post portacath surgery which means... He gets to go swimming!! Definitely lifted his spirits getting in the pool with his brother and sister! For more fun this week, we took off to visit the bass pro shops... again. All of the kids love it there. I think it reminds them of home! It's very similar to Cabelas, their favorite store to go to. While Nick was in some appointments, MeMere and Poppi were able to take Joey and Julia to a few other fun places like the Peabody hotel to see the ducks marching in, and for a walk down Beale street. The therapy dogs also visited us again at the Ronald McDonald House this week, which all the kids always enjoy.

Justus and I were able to spend some time planning for our next round down here in Tennessee. We have an apartment lined up for us, but there are still some details to work out. Because of the generosity of so many of you, our family will be able to live close to St. Jude, in a safe neighborhood, and even have our own yard to play in! I wish I could personally thank everyone involved with the fundraisers that have made it possible to do this. I saw pictures and heard about the fun at Paint Night, this week, and even got to share in an event at Nick's school through FaceTime! It was a moment well never forget! It seems like everyday we hear someone has done something kind for our family, whether it be a new fundraiser or a special way to honor Nick and his fight! We never imagined we would face such a difficult time in our life and we will always be grateful for the immense support from our family, friends, and from those we don't even know. We thank you all.

Philippians, 4:13

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Update posted by Nicole Brierley On Jun 08, 2015

Last Tuesday Nick reached the halfway milestone of his radiation treatments! We are praying that he will only need 3 more sedated sessions. As Nick is continuing to drop weight, we are really looking forward to days without the eating restrictions necessary for anesthesia. Not only is he NPO mornings of Monday through Friday, he still battles nausea in the evenings and has very little appetite. Nick received another MRI and CT scan in addition to his regular treatment on Friday.

I mentioned last week that Nick was beginning to loose his hair. Once it started, it rapidly continued to fall out. Almost all of Nick's hair is gone. He is still confident about his appearance though, as he should be, because he is as handsome as ever! (and because all the nurses tell him so!)

After appointments this past week, the Ronald McDonald House sponsored Camp Wishing Well, for all the patients and siblings! Each night was a lot of fun. It gave us something special to look forward to after a hard day. They painted and raced derby cars, visited with superheros and princesses, made tye dye shirts, and more. Then dinner was provided every night.

Also this week, my family has made several announcements regarding new ways to help and to follow Nick's story: Nicholasstrong.com, our new fund- The Nicholas Brierley Cancer Foundation, and a new Facebook page, which will be great for sharing photos and updates along the way.

We are counting down and should be home in less than 3 weeks! Even though it will be for a short 6 weeks, we are really looking forward to it. All of the kids, (and grown ups too) are missing our dog Lacy, and pretty much just life how we knew it. Lucky for us, nothing helps cure a little homesickness like seeing more people we love. We had a great visit with Papa and Grammie this week, having fun at camp and at the Children's Museum of Memphis yesterday. Now we can't wait to see MeMere and a return visit from Poppi next Tuesday when their grandparents swap again!

As always, we thank each one of you, from the bottom of our hearts for your support, kindness, love and prayers. We can't wait to see your pictures from paint night this week! What a treasure their works of art will be!

Philippians 4:13

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praying

Ednamma Christian Foundation

Update posted by Jun 13

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Loving, missing and praying for all of you.

Kelly Valentine

Update posted by Jun 08

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Update posted by Nicole Brierley On Jun 01, 2015

This week we started our appointments on Tuesday in honor of Memorial Day. To our surprise, there were no parades or special events, but that didn't stop us from celebrating at the Ronald McDonald House. My guys were dressed in their red, white & blue to show our appreciation for the soldiers who fought for our country where we can receive healthcare from a facility like St. Jude Children's Research Hospital.

Nick has completed 12 days of radiation! Our schedule is pretty consistent now. Nick usually has a 10:15 am start time, so we try to squeeze in any important thinking visits like school, music, or physical therapy before then because even after he wakes from anesthesia, it takes him until 2:30 or 3:00 to feel like eating and be sort of himself again. So usually we have to call it a day at the hospital once his radiation is done, unless it is Tuesday. Tuesdays are long days for us with check ups and lab work.

I have to share, that ALL of Nick's doctors and teachers are very impressed with him, physically and mentally! He is always asking great questions, and he still has great strength and strong motor skills. Although he is doing fantastic in those areas, his weekly blood work has shown his counts have started to drop. He is not close to a dangerous level yet... but the numbers are expected to continue to fall. There will come a time when he will need blood transfusions and platelet transfusions, which will most likely not happen until the chemotherapy part of his treatment. He will start an antibiotic next week to protect him from pneumonia. We are also beginning to see some side effects of radiation. His skin is very red down his back, we have a cream that is helping with that. Nick is also starting to loose his hair. He is in good spirits about this.

Since he was feeling good last weekend, we checked out the Memphis Zoo! It is only about 20 minutes from St. Jude's. We had a great time, it was wonderful to hear Nick laugh so hard! Somedays, it just takes a gorilla to get a smile!

Yesterday, Nick's Poppi returned home to CT, and his Papa and Grammie joined us here in TN. They will help care for Joey and Julia while we are at appointments. We are so thankful that our parents are able to coordinate their time here with us. I am not sure if I explained this earlier, but St. Jude only houses families of four, so Joey and Julia both cannot stay with us at St. Jude. We usually say goodnight about 7:30, and they head to a hotel close by.

So while I am waiting for my wristbands to arrive, I love seeing your photos of you all wearing yours!!! It is so awesome to read all your posts about how eager you are to get them yourselves! If you would like to wear a band for Brain Cancer Awareness, contact my sister Carrie Corso on Facebook. (Carrie Scalise Corso). The bracelets are $5 each and come in several sizes.

Please remember to pray for us daily as well as for all the kids here at St. Jude. Nick is starting to make some friends here and at times is struggling to understand why all this happens, but is encouraged through their positive attitudes and most of all through God's Word. Philippians 4:13 I can do all things through Christ who strengthens me.

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Update posted by Nicole Brierley On Jun 01, 2015

This week we started our appointments on Tuesday in honor of Memorial Day. To our surprise, there were no parades or special events, but that didn't stop us from celebrating at the Ronald McDonald House. My guys were dressed in their red, white & blue to show our appreciation for the soldiers who fought for our country where we can receive healthcare from a facility like St. Jude Children's Research Hospital.

Nick has completed 12 days of radiation! Our schedule is pretty consistent now. Nick usually has a 10:15 am start time, so we try to squeeze in any important thinking visits like school, music, or physical therapy before then because even after he wakes from anesthesia, it takes him until 2:30 or 3:00 to feel like eating and be sort of himself again. So usually we have to call it a day at the hospital once his radiation is done, unless it is Tuesday. Tuesdays are long days for us with check ups and lab work.

I have to share, that ALL of Nick's doctors and teachers are very impressed with him, physically and mentally! He is always asking great questions, and he still has great strength and strong motor skills. Although he is doing fantastic in those areas, his weekly blood work has shown his counts have started to drop. He is not close to a dangerous level yet... but the numbers are expected to continue to fall. There will come a time when he will need blood transfusions and platelet transfusions, which will most likely not happen until the chemotherapy part of his treatment. He will start an antibiotic next week to protect him from pneumonia. We are also beginning to see some side effects of radiation. His skin is very red down his back, we have a cream that is helping with that. Nick is also starting to loose his hair. He is in good spirits about this.

Since he was feeling good last weekend, we checked out the Memphis Zoo! It is only about 20 minutes from St. Jude's. We had a great time, it was wonderful to hear Nick laugh so hard! Somedays, it just takes a gorilla to get a smile!

Yesterday, Nick's Poppi returned home to CT, and his Papa and Grammie joined us here in TN. They will help care for Joey and Julia while we are at appointments. We are so thankful that our parents are able to coordinate their time here with us. I am not sure if I explained this earlier, but St. Jude only houses families of four, so Joey and Julia both cannot stay with us at St. Jude. We usually say goodnight about 7:30, and they head to a hotel close by.

So while I am waiting for my wristbands to arrive, I love seeing your photos of you all wearing yours!!! It is so awesome to read all your posts about how eager you are to get them yourselves! If you would like to wear a band for Brain Cancer Awareness, contact my sister Carrie Corso on Facebook. (Carrie Scalise Corso). The bracelets are $5 each and come in several sizes.

Please remember to pray for us daily as well as for all the kids here at St. Jude. Nick is starting to make some friends here and at times is struggling to understand why all this happens, but is encouraged through their positive attitudes and most of all through God's Word. Philippians 4:13 I can do all things through Christ who strengthens me.

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Update posted by Nicole Brierley On May 24, 2015

I'm excited to say, Joey and Julia finally made it to Memphis earlier this week, with Nick's Poppi! They have spent the last few days (after Nick's apts.) building Legos, playing with rc toys, and playing video games together. It is so good to have dinner as a family, and just being together again!

Nicks appointments have slowed down now that most of all the initial visits are through, which is good because our days just became even more challenging. You see, for his radiation procedure, Nick is required to lay perfectly still for about 20 minutes. If he moves, he would be receiving radiation to parts of his body that don't need it, and that's not safe. As if that wasn't hard enough to do, this process triggered Nicks brain into thinking there was this REALLY bad smell. After trying 5 radiation appointments awake, Nick was struggling to ignore it. Nick was too fidgety and the doctors believed it was not safe to continue while being awake anymore. They tried to put things in front of him that smelled good, but since there was no actual scent, they just couldn't cover it up. They even tried meds to just relax him, but nothing was giving him enough relief.

Yesterday was Nicks 3rd sedated treatment, and although he is restricted from eating the morning of the procedure now, and the radiation takes about 2hrs. each day instead of 30 minutes, Nick seems to have less anxiety about his treatments. Also the past 4 days, he has been less nauseous and eating better! The doctors say there are 12 more times that his brain could be tricked, so the plan is to remain being sedated for those. After that, he still has 10 radiation treatments left. However, that process for the last 10 will be different, it won't trigger the smell and we can try doing it awake again.

We have found that watching Americas Funniest Videos, or a game of Sorry, help relax him and make him laugh. We even got to go check out the new Bass Pro Shop that opened up down here inside The Pyramid. We took an elevator 25 stories up to an outdoor observation deck with glass floor. Everyone loved it, and it was great to have some family fun!!

I am so thankful for all of you who have contributed to this website, or to any of the other fundraisers for our family. It's a blessing to have so many friends and family coordinating different ways for us to receive the help we need to get through this. Thank you!

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Nick, you are so strong! We are so proud of you for being brave. Luv u all xo

Jill Bennett

Update posted by May 24

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Update posted by Nicole Brierley On May 16, 2015

Looking back over the past 2 weeks, I first think about how busy we have been! Every morning, we receive a schedule for his day. Since we are taking part in this clinical trial they want to know everything there is about Nick before we begin radiation treatment so they can evaluate the effects of his treatment. Everyone he needs to see is all right here at St. Jude and they coordinate it all. I think we have just completed all of our consult visits to the dentist, ophthalmologist, physical therapist, occupational therapist, speech therapist, psychologist, neurologist, radiation oncologist, Neuro oncologist, school, a music lesson and more. Nicholas has had numerous MRIs, x-rays, a Lumbar Puncture (spinal tap), and surgery to place his portacath. He even got a few tattoos!

St. Jude ran all of their own pathology on Nick's tumor. They came the the same results as the mayo clinic. A Myc amplified, classic medulloblastoma, with anaplastic areas. This confirmed we made the right decision. Our course of treatment is 6 weeks of radiation, then a 6 week break back home, and 7 months of chemotherapy. Then we will have to remain in Tennessee for another 28 days following his last treatment. The chemotherapy treatment consists of 5 days each month spending inpatient for the first 4 months, then the last 3 months he will receive out patient chemotherapy. St. Jude also tested his spinal fluid to see if there was evidence of metastatic disease. This is cancer that spreads, and we are so thankful they did NOT find any metastatic disease!


As you can imagine, this has been an emotional time for Nick. He is nauseous a lot, and has a lot of anxiety about painful appointments. He has a poor appetite, and often sleepy. Having to go under anesthesia so often takes him 2 steps back every time he shows improvement. Now that his port was placed 3 days ago, we can finally move on from all the prep tests. Still no time to recoup, because radiation began the next day, Wednesday, 5/13. Today was Nick's 3rd treatment. He does this awake as long as he can lay completely still for about 15/20 minutes a day, that's all it takes. The biggest thing that bothers him about this appointment is that the radiation triggers his brain to believe he smells something terrible. He also had his first official day of school today!

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