The good news is we get out of CHOP today, the bad news is we have been here since Wednesday night. We took Shane to clinic on Wednesday for his routine easy treatment. He was not his usual nosy, mobile self, instead he chose to nap on PopPop. His counts were OK, with only some concern over his platelet count. We were asked to come back Friday to get a transfusion. It was a long day in clinic because they were crazy busy after the holiday weekend. We got home, played and then Shane went down for a nap. When Paul got home from work, we woke him up and he was HOT. His temperature ranged from 102-104 and in cancer patients 101.4 is ER worthy. While we have been fortunate to never have a fever (ever), the timing couldn’t be worse. We were leaving that night to get a second opinion up in Boston. There is a rhabdo specialist up there and we had some questions concerning treatment options. Oh well, life happens and we have to be sure he is OK. We head down to CHOP and they test to see if he has a blood infection from his port. In the meantime, his counts have almost doubled since clinic, so it looked like it would be a quick one night stay. Eh, unfortunately he maintained a fever, which depleted his numbers and we were staying until they rebounded. By yesterday they lowered a little, but didn’t plummet like the docs expected. He looked better, but was still staying. He got a platelet transfusion, which caused a high fever and whole body shakes- an allergic reaction. So, here we are day 3 and finally we can go home. His numbers are up and now we just need to wait for our release. According to the doctor, we have led a “blessed chemotherapy life” having not to experience this until week 23. Honestly, I will be praying we make it through the fall/winter without another trip like this. It was hard, unexpected and frustrating. Shane definitely does so much better at home, who doesn’t? We’ll be back here Wednesday for the same treatment, thankfully it doesn’t affect his numbers. This was probably caused from the overnight chemo treatment and maybe a viral infection on top.
This is our family celebrating September 1, 2014. Today is not only Labor Day, but it is the start to childhood cancer awareness month. This time last year I would have had no idea about it either. It’s like they say, you never think it will happen to you and then it does. We join millions of families in this emotional journey. We fight for our children as they become littles heroes, warriors. We hold them as they endure their sedations, surgeries, biopsies, chemo, and for some radiation. They are still little and young and may not feel as those their voices are being heard. That is why we have to help them find their voice, be their voice and draw attention to their cause. That little guy in the picture is our Shane Metzgar. He was 8 months old when diagnosed with stage 4 Alveolar rhabdomyosarcoma or rhabdo or ARMS for short. It is a vicious beast and was caused by a gene translocation. We have no idea when the tumor started, but it doubled in size from it’s initial discovery to his diagnosis. Shane’s diagnosis was a grim day- March 28, 2014. No one ever wants to hear their child has cancer, but you most definitely don’t want to hear “we were afraid it was this cancer,” poor prognosis, and only 1 in 10 survive. You see, rhabdo is treatable, but it comes back. We are determined to remain hopeful and positive. We live each day for him and keeping our family whole. Some days are easier than others. We take one day at a time and can’t make plans like we used to because everything is pretty much dictated by his treatment schedule and how he is feeling. Some people get it, some don’t. We are just trying to be normal, but real in our situation. My husband and I look at each other and say “I can’t believe we are going through this.” We both then add “everyday until we beat it.” So, even though we are still considered new to the journey we are in it forever. Cancer messed with the wrong family. We are determined to create something that will be a lasting. We still need time to sort that out. In the meantime, we encourage everyone to take a stand and spread the word about childhood cancer- the least funded cancer research by the government. We appreciate all the support you have given us. If you are on Facebook and are inclined to, please “like” and “share” Shane’s page to help raise awareness. www.facebook.com/HelpShaneFightCancer #HelpShaneFightCancer
This Thursday we took an early morning journey from the shore to CHOP, so that Shane could complete his inpatient treatment for week 22 (half way done!!). We pushed his treatment back a day so we could celebrate big brother’s 7th birthday. We arrived at 7:20 am and he completed his treatment at 4 pm. It always happens that way. You think it will be a swift admittance, but then clinic gets crowded, there are no cribs, etc. You just have to go with the flow and luckily the doctors work with us so that we can get out the next day at a reasonable time. For this treatment Shane gets a shot 24 hours after treatment in order to boost his white blood cell count. We were looking at a 4 pm discharge. Luckily, we were out by 2 pm. This treatment is the harshest in terms of the type of chemo he is receiving. He hasn’t had it since the end of round 1, so I anticipated some bumps. Plus, he is mobile now. On top of the chemo, he also gets a bolus of fluids for 8 hours for hydration. This is a long time to have little man hooked up! Thankfully, he enjoys his stroller and when we got onto the floor they had music in the playroom with his favorite teacher. It helped kill a good hour. Shane struggled settling himself later in the night. Even though he was tired, he didn’t fall asleep unless I held him. I could tell he was getting nauseous so I held him for a good 2.5 hrs and then tried to lay him in the crib. Then he got really sick. The next morning it was the same until we doubled up on some anti-nausea medicine. He was then line free and roaming the halls, smiling and flirting. It took a full day for his appetite to come back. He continued to nurse, but did not eat solids until yesterday. We are enjoying a relaxing weekend until we have some more obstacles later in the week. Thank you for continued support. Please keep Shane in your prayers.
This week we completed week 20 of 42. It’s unbelievable that we have made it this far. It’s been a gut wrenching, emotional journey. Shane is an amazing lil guy and we are so lucky to be his parents. He has been so strong and brave through all of this and in parallel he is a reckless tot tearing up our household. This week was a good week. His counts were great, so great that we don’t have to come in next week. Yes! A break!!!! No clinic, no CHOP….for a whole week! The following week we celebrate big brother Chase’s 7th birthday and the next day we are inpatient for another treatment.
Yesterday we finished Shane’s 5 day outpatient treatment. I am so thankful that we only have to be inpatient for one of his treatments since we are now confident in doing this 5 day one outpatient. It is a long week and takes it toll on our little guy. He NEVER sleeps while we are there, even though he can become a grumpy monkey and wants to sleep. This is either from the chemo (which tends to rev him up) or the fact that he is too nosy to go to sleep.
Monday was our longest day because he needs to go to triage, get his port accessed (it then stays accessed all week), see the doctor and get the chemo ordered. It was a 9:30-3:30 kind of day. Shane kept busy roaming the halls, introducing himself to new people and just making himself known. Tuesday he got a private music session from Mike the music guy. Shane LOVES music. He sings and sways as Mike plays the guitar and sings to him. Wednesday was hump day and Shane was not happy. He howled a lot and couldn’t get settled. He spent most of the day in the ergo carrier. Thursday he was content munching on his pink strawberry bagel and just roaming. Friday was great because daddy came and it was super helpful to have him there.
I met another family this week who were at CHOP for radiation treatment from north jersey. Their son has the same cancer as Shane. I have never met another child with the same one, as it is extremely rare. Their son is 6 and bravely endured 6 weeks of proton radiation and will continue on in his journey as we will ours. It was good and educational to speak with someone having to go through the same thing, with the same cancer, even if their ages are vastly different.
Next week, we’ll be back for his regular 15 minute treatment. Fingers crossed for no transfusions and a fast day.
We had a terrific week. Shane only had blood counts this week, so no chemo. We bypassed a fever scare from possible teething, but I won’t lie- it was stressful. He did not need a blood transfusion and continues to grow more peach fuzz. Next week, we begin another five day treatment. Fingers crossed for no abrupt doctor meetings or side effects. Thank you for your continued support. We are still working on our thank you’s, but please know how much we appreciate the kindness and generosity that has been given to our family.
It’s been awhile since we’ve updated. Life has been busy and it’s hard to believe it’s been 2 weeks since Shane turned one. On the 14th we began a 5 day treatment and completed it in the day hospital as an outpatient. It was successful and I don’t feel we have to be inpatient since Shane had no side effects. We were able to come home and spend time with the family. It is extremely difficult to keep him occupied now that he is mobile. Those few times we have to be inpatient will be spent aimlessly wandering the halls just to keep him busy. This week was a 15 minute treatment and while most of us thought he would need a transfusion, daddy was right and he didn’t! Shane was looking a little pale, but they believe we just use good sun protection (true)! In the past weeks, we’ve been reminded to enjoy each day. Shane is doing great and continues to impress them with how well he is doing. While we thought certain changes might be made to his treatment schedule, we were informed that it’s not in the cards. It was a blow to us, as our anticipation and hopes were crushed…but just for a little bit. We are still moving ahead with the plan, which is working and Shane continues to thrive. We believe in our little guy.
THANK YOU to our family and friends who traveled near and far to help us celebrate Shane’s 1st Birthday. It was a big victory day and we were so grateful and blessed to share it with all of you. Thank you for all the emails of birthday wishes for Shane. We set up a Time Capsule for people to make a prediction, write a wish and/or give advice for his future. I will include those in it.
Tomorrow we start Round 2 of treatment. It’s the week long one. This time we are going to try it outpatient instead of inpatient. He seemed to tolerate it well and who doesn’t like sleeping in their own bed without the constant beeps, and nighttime wake-ups?
Today our little superhero is one. He had a great week and his numbers are higher than mine (probably). This is awesome for a party weekend!
Happy Independence Day!One week from today, Shane will be one. It is so bittersweet. I haven’t posted in awhile because we have been enjoying some family time after his last chemo session. Shane gets two weeks off (no chemo, just blood counts). We went to CHOP last Wednesday and after talking with his doctors, we went home and returned the next day. He had a bone marrow biopsy Thursday and then completed his last 3 drug chemo treatment of Round 1. We left late Friday since he has to wait 24 hours to receive a shot that boosts his white blood cell count.This Wednesday we went in for his blood counts and wound up staying from 9:30 until 4:30 because he needed a blood transfusion. Yes, it takes that long. His big brother came along and we were a bit thrown off by having to stay, but Chase did great. He helped Shane cruise around the clinic and met new friends along the way. He did some canvas painting and participated in CHOP’s new Sibology program. Shane looks great. I admit he was looking pale and we started to call him “powder.” The transfusion brought some color back to his cheeks and more energy, if that is even possible.We got good news from the biopsy and Shane will continue with his same chemotherapy schedule at the same dosage. We are still in discussions with doctors as to any more changes in his treatment for Round 2.