It's been 8 weeks. Eight solid weeks since Arley has been healthy. I don't know what the problem is, or why her immune system has been attacking lately. She has been sick with literally six different diagnoses (some of them twice) and I wish I could say it's an exaggeration, but it's not, I have witnesses.
We have had to cancel our trip out to Boston for scans and testing four times now. Each time we reschedule I think she couldn't possibly be sick by the time the new appointment rolls around, but without fail, every.single.time she is under the weather and the anesthesia protocol won't allow her to be seen and rightfully so.
The struggle is definitely real. If I could put her into a bubble I most certainly would, but that's not a life for a spirited six year old to lead. All the hand washing in the world, isn't going to protect her. Its times like this where I feel that homeschooling would be the wisest choice, but I refuse to deprive her of a normal childhood because of her health struggles.
Regardless of anything though, she is your typical first grader. She's in her third year of dancing and surprisingly was able to perform in her dance school's winter recital two weeks ago before getting sick yet again a day later.
People often comment to me that they 'don't know how I do it.' Shit... I don't know how I do it either. It feels as though I am constantly just going through the motions and trying to keep our head above water long enough to avoid any hospitals visits. (We've been unsuccessful twice now) It's a constant inner battle of oneself to always make sure I am doing the right thing when it comes to her. Wondering if the environment she lives in is hurting or helping. (New England weather versus the Midwest or Southern states where the temperature is drier or warmer) I swear if I won the lottery tomorrow I would buy houses in different climates and see if that helps solves part of the problem.
This whole experience has been exhausting as of late. Stressful too if I'm honest. Nothing however that I can not handle, or have handled in the last six years and will continue to do my very best to help her live as normal of a life as humanly possible.
Here's hoping 2018 provides some much needed relief in the health department and that things improve relatively soon. For now, that's my only update. Until next year...
Tuesday, December 26, 2017
Monday, September 11, 2017
Hello Again
So it was never my intention to not have posted a single update in almost a year, however things have been quite a whirlwind for us and I got tired of people asking for updates and never having anything to report. Trust me, I have been pissed off enough for the both of us.
When I provided you with our end of the year update for 2016, we were just a couple short months away from finally getting answers to the blood in Arley's urine issue we had been going back and forth on, and the day approached to where she would meet with one of the head urologists at CCMC and we would finally get the ball rolling. Only, he never showed up to our appointment.
Yes, that's right. Arley and I went to that appointment both of us incredibly sick. So much so that we had to wear masks the whole time we were there. You should have cancelled the appointment! Yes, maybe we should have, but by then we had already been waiting nine months for some type of answer and were desperate to keep the appointment. That and I was under a lot of heat from my job. So we went, we waited. Time passed and it was over an hour after our original scheduled appointment where someone else walked in and said they would help us. I declined. We were there to see the top dog. The one who would be able to provide us some type of insight as to what has been happening. I didn't want someone who was second fiddle, even if that person was just as qualified. We were told we HAD to see this doctor because nobody from Urology or Nephrology could help us. Fuck that shit.
And I did. I lost my shit on the poor soul that was sitting at the reception desk. We should have been home resting, sleeping, trying to get over what we had, but it had been far too long since we had any answers to what was happening that I risked more sickness or hospitalization for some simple answers. That was the day I cut our ties with Connecticut Children's.
No longer did I feel as though that hospital was adequate enough to solve our problem. It had gone on way too long, went through too many doctors, nobody kept proper notation of the urine samples that Arley had provided and we kept having to start over fresh at each appointment. My blood was boiling and I had had enough.
I called up the office of my daughters Oncologist in Boston. She too was shocked that this was still going on and invited us up to Boston for a checkup. Upon going to Boston she informed me that she wanted us to see a particular Urologist, but that it would be easier for us to visit him at his main hospital rather than his partner hospital.
So we waited. In the meantime work was giving me far too much pressure due to my absences. They knew upon hire the situation with my daughter, and yet they tried to use it against me. I held on. I was not going to give them the satisfaction of making me feel like I had to roll over. As the HR guy even admitted himself "We knew of your situation and we hired you anyway." Yes, you did. So don't try to sit there on your high horse and put me into a corner.
(Thankfully a huge blessing regarding work was just over the horizon, but that's an update for another blog post)
Moving forward we met with the new Urologist and discussed what had been going on for the last 10 months and I felt confident we were moving in a positive direction, however he wanted us to meet with a GI doctor friend of his too. Sigh... this was starting to become ridiculous.
Nevertheless though we went to meet with the GI doctor and it was like finally seeing the light after traveling through a never ending tunnel. He had a hunch that would need to be followed up with blood work and I had some researching to conduct on Mr. Google to see if his thought process matched up at all. It did.
Got a call from his office about a day or two later saying that Arley's blood work came back with her levels slightly elevated and we would need to go for additional blood work sooner rather than later to confirm officially with the pediatrician.
Met with the pediatrician and she wasn't yet sold on what the new diagnosis could be. Arley's levels weren't astronomical, but definitely warranted a retest for sure. If that too came back with an elevation then we would finally have the confirmation we needed and be able to plan accordingly Arley's life moving forward.
For now, we wait for her second blood draw and see what happens. Until next time friends...
When I provided you with our end of the year update for 2016, we were just a couple short months away from finally getting answers to the blood in Arley's urine issue we had been going back and forth on, and the day approached to where she would meet with one of the head urologists at CCMC and we would finally get the ball rolling. Only, he never showed up to our appointment.
Yes, that's right. Arley and I went to that appointment both of us incredibly sick. So much so that we had to wear masks the whole time we were there. You should have cancelled the appointment! Yes, maybe we should have, but by then we had already been waiting nine months for some type of answer and were desperate to keep the appointment. That and I was under a lot of heat from my job. So we went, we waited. Time passed and it was over an hour after our original scheduled appointment where someone else walked in and said they would help us. I declined. We were there to see the top dog. The one who would be able to provide us some type of insight as to what has been happening. I didn't want someone who was second fiddle, even if that person was just as qualified. We were told we HAD to see this doctor because nobody from Urology or Nephrology could help us. Fuck that shit.
And I did. I lost my shit on the poor soul that was sitting at the reception desk. We should have been home resting, sleeping, trying to get over what we had, but it had been far too long since we had any answers to what was happening that I risked more sickness or hospitalization for some simple answers. That was the day I cut our ties with Connecticut Children's.
No longer did I feel as though that hospital was adequate enough to solve our problem. It had gone on way too long, went through too many doctors, nobody kept proper notation of the urine samples that Arley had provided and we kept having to start over fresh at each appointment. My blood was boiling and I had had enough.
I called up the office of my daughters Oncologist in Boston. She too was shocked that this was still going on and invited us up to Boston for a checkup. Upon going to Boston she informed me that she wanted us to see a particular Urologist, but that it would be easier for us to visit him at his main hospital rather than his partner hospital.
So we waited. In the meantime work was giving me far too much pressure due to my absences. They knew upon hire the situation with my daughter, and yet they tried to use it against me. I held on. I was not going to give them the satisfaction of making me feel like I had to roll over. As the HR guy even admitted himself "We knew of your situation and we hired you anyway." Yes, you did. So don't try to sit there on your high horse and put me into a corner.
(Thankfully a huge blessing regarding work was just over the horizon, but that's an update for another blog post)
Moving forward we met with the new Urologist and discussed what had been going on for the last 10 months and I felt confident we were moving in a positive direction, however he wanted us to meet with a GI doctor friend of his too. Sigh... this was starting to become ridiculous.
Nevertheless though we went to meet with the GI doctor and it was like finally seeing the light after traveling through a never ending tunnel. He had a hunch that would need to be followed up with blood work and I had some researching to conduct on Mr. Google to see if his thought process matched up at all. It did.
Got a call from his office about a day or two later saying that Arley's blood work came back with her levels slightly elevated and we would need to go for additional blood work sooner rather than later to confirm officially with the pediatrician.
Met with the pediatrician and she wasn't yet sold on what the new diagnosis could be. Arley's levels weren't astronomical, but definitely warranted a retest for sure. If that too came back with an elevation then we would finally have the confirmation we needed and be able to plan accordingly Arley's life moving forward.
For now, we wait for her second blood draw and see what happens. Until next time friends...
Saturday, December 31, 2016
End of the year wrap up
2016 has certainly kept us busy...
Starting off this year...
Arley was halfway through with preschool and doing remarkably well, and I myself had just enrolled back into classes to finish out my second degree. I finished out the semester earning myself a 4.0 GPA, scholarship for another semester and landed on the President's List.
The next milestone Arley had this year was obtaining her first ever Library card! While we do not utilize it due to the germs than can manifest in there, it was still a rite of passage that she was thrilled to take part in.
I myself personally left one career and started another and then switched organizations halfway through the year. It has offered a lot of growth and has been rewarding to learn another trade.
Next it was Arley's second season with the Hartford Hawks Softball team. I am so incredibly proud of these young women and cherish the friendship and bond they have with Arley. We have been frequent visitors to a lot of their games and in turn they have been frequent supporters of anything Arley has been involved in. We are so honored that we get to continue to be apart of this organization for our 3rd season and look forward to counting down the days until on the field again.
With that, Arley was also apart of the Bristol Blues again. This past season was much different than the first. Nobody can ever replace the friendships she formed with the Fab 5. Our experience this year wasn't the same and it's hard not to compare the two seasons, but the expectation was set very high and it fell flat. Although, I have been informed that this season is going to be even more different than the last so I'm hopeful that things will turn around for the better.
We also learned that Arley's Oncologist was pursuing a new venture and moved away. We miss him dearly, but hope that he is happy. Arley still hasn't had the first official meeting with her new Oncologist after the last time I mentioned it, but that is upcoming in the next couple of weeks so I'll be sure to update as it comes.
As we move further into the summer time a lot of things happened. Arley danced in her first recital, and was accepted into the performing dance troupe which would travel to different venues to perform during the winter months. We met actor Michael Cudlitz (Abraham from The Walking Dead), she turned 5 and started Kindergarten.
Moving on to the fall/winter months Arley has been extremely sick off and on since just before my birthday in October. She was doing good enough to attend her first big girl concert of Carrie Underwood, but November proved to be a harsh month health wise for her. She was constantly sick, missing days of school, and feeling all out miserable. You name it, she had it and then some. Because of this Arley has needed to do breathing treatments to help her feel better. It's been great, and she even alerts me to when she feels the need to do a treatment on her own.
To round out the year Arley achieved another milestone. She lost her first tooth!! A brand new tooth literally popped up overnight between one of her many trips to the pediatrician and took a whopping 12 whole days to fall out (in dance class of all places)
Additionally Arley got to be an extra in a commercial for the local news. It has aired several times already and will continue to gain frequency as the event she is apart of gets closer.
As far as all things related to Cancer. Arley began Physical Therapy. It was originally only supposed to be a 12 week session, but it turned into more with Arley eventually needing to have the leg braces put back on. The balance, coordination, and foot drop remain an issue. While both the PT and leg braces have been helpful, there are still many challenges and she experiences a lot of pain. Hopefully in the new year we will see greater improvements. Arley is set to have another set of scans soon and we will be doing a uro flow with Nephrology to figure out the blood in the urine issue she has been dealing with for quite some time. Unfortunately from my last update regarding that, nothing was to be done until January and we are almost there.
Regardless of everything, 2016 was a decent year. We gained new friendships, lost some friendships as well as a few loved ones, made big life decisions and continue to conquer everything that has come our way. We have no idea what 2017 will have in store for us. One can only hope, but I'm sure it's going to be a great year regardless because 7 just so happens to be my favorite/lucky number and I expect nothing but good things and will try to keep that attitude moving forward.
I still haven't made the decision on whether or not I will continue to post updates to this blog yet. I have created a new blog that will be much harder to find and will be using it moving forward more frequently in the new year. I will probably broadcast it on my main Facebook page so those family and friends can follow along, but haven't decided yet what I will do regarding those following along on our journey on the Team Arley page. I guess you'll just have to wait and see. Until next time, wishing you health & happiness in the new year.
Starting off this year...
Arley was halfway through with preschool and doing remarkably well, and I myself had just enrolled back into classes to finish out my second degree. I finished out the semester earning myself a 4.0 GPA, scholarship for another semester and landed on the President's List.
The next milestone Arley had this year was obtaining her first ever Library card! While we do not utilize it due to the germs than can manifest in there, it was still a rite of passage that she was thrilled to take part in.
I myself personally left one career and started another and then switched organizations halfway through the year. It has offered a lot of growth and has been rewarding to learn another trade.
Next it was Arley's second season with the Hartford Hawks Softball team. I am so incredibly proud of these young women and cherish the friendship and bond they have with Arley. We have been frequent visitors to a lot of their games and in turn they have been frequent supporters of anything Arley has been involved in. We are so honored that we get to continue to be apart of this organization for our 3rd season and look forward to counting down the days until on the field again.
With that, Arley was also apart of the Bristol Blues again. This past season was much different than the first. Nobody can ever replace the friendships she formed with the Fab 5. Our experience this year wasn't the same and it's hard not to compare the two seasons, but the expectation was set very high and it fell flat. Although, I have been informed that this season is going to be even more different than the last so I'm hopeful that things will turn around for the better.
We also learned that Arley's Oncologist was pursuing a new venture and moved away. We miss him dearly, but hope that he is happy. Arley still hasn't had the first official meeting with her new Oncologist after the last time I mentioned it, but that is upcoming in the next couple of weeks so I'll be sure to update as it comes.
As we move further into the summer time a lot of things happened. Arley danced in her first recital, and was accepted into the performing dance troupe which would travel to different venues to perform during the winter months. We met actor Michael Cudlitz (Abraham from The Walking Dead), she turned 5 and started Kindergarten.
Moving on to the fall/winter months Arley has been extremely sick off and on since just before my birthday in October. She was doing good enough to attend her first big girl concert of Carrie Underwood, but November proved to be a harsh month health wise for her. She was constantly sick, missing days of school, and feeling all out miserable. You name it, she had it and then some. Because of this Arley has needed to do breathing treatments to help her feel better. It's been great, and she even alerts me to when she feels the need to do a treatment on her own.
To round out the year Arley achieved another milestone. She lost her first tooth!! A brand new tooth literally popped up overnight between one of her many trips to the pediatrician and took a whopping 12 whole days to fall out (in dance class of all places)
Additionally Arley got to be an extra in a commercial for the local news. It has aired several times already and will continue to gain frequency as the event she is apart of gets closer.
As far as all things related to Cancer. Arley began Physical Therapy. It was originally only supposed to be a 12 week session, but it turned into more with Arley eventually needing to have the leg braces put back on. The balance, coordination, and foot drop remain an issue. While both the PT and leg braces have been helpful, there are still many challenges and she experiences a lot of pain. Hopefully in the new year we will see greater improvements. Arley is set to have another set of scans soon and we will be doing a uro flow with Nephrology to figure out the blood in the urine issue she has been dealing with for quite some time. Unfortunately from my last update regarding that, nothing was to be done until January and we are almost there.
Regardless of everything, 2016 was a decent year. We gained new friendships, lost some friendships as well as a few loved ones, made big life decisions and continue to conquer everything that has come our way. We have no idea what 2017 will have in store for us. One can only hope, but I'm sure it's going to be a great year regardless because 7 just so happens to be my favorite/lucky number and I expect nothing but good things and will try to keep that attitude moving forward.
I still haven't made the decision on whether or not I will continue to post updates to this blog yet. I have created a new blog that will be much harder to find and will be using it moving forward more frequently in the new year. I will probably broadcast it on my main Facebook page so those family and friends can follow along, but haven't decided yet what I will do regarding those following along on our journey on the Team Arley page. I guess you'll just have to wait and see. Until next time, wishing you health & happiness in the new year.
Thursday, December 22, 2016
Kindergarten
It amazes me everyday to know that Arley is in Kindergarten. I seriously blinked and she turned into a big kid overnight. She walks into the elementary school like she owns the place, with such an air of confidence that surpasses anything that I could have ever imagined.
I thought it may take a little bit of time for her to adjust to a brand new school, new classmates, teacher, and longer days, but it's as if she has been doing it all along. She enjoys going to school and misses it when we are home on the weekends.
Two months ago I had the privilege of attending her first parent/teacher conference and received nothing but praise. She loves learning, she loves when it's her turn to be the classroom helper and is right on target for where she needs to be academically. Not only that, but she enjoys doing her homework too.
One thing that has made me extremely proud is that she has earned school dollars that she receives for showing kindness and/or respect to her peers not once, but twice! Just goes to show that I'm doing something right.
Additionally, I have received her first progress report. She has received nothing but high marks of 3's, 4's and E's (for Exceptional) in all areas of schooling. Not only that, but she says she wants to be a Mathematician and learn how to count to 100! Which by the way she already knows how to do lol.
She is doing very well with learning her sight words to teach herself how to read. There's only two words that she occasionally mixes up, so that at least is a work in progress along with cutting with scissors. Apparently she's just like me and likes to venture off the dotted lines paving her own path for herself. Ha!
Despite missing several days of school due to be constantly sick, I am impressed with all that she absorbs on a daily basis and has been learning. I'm very happy with the school I chose to enroll her into as well as thrilled with who she has for a teacher. I'm very much looking forward to seeing her continue to excel academically where she is and couldn't be more thrilled to see the little girl she will continue to grow into.
Additionally, I have received her first progress report. She has received nothing but high marks of 3's, 4's and E's (for Exceptional) in all areas of schooling. Not only that, but she says she wants to be a Mathematician and learn how to count to 100! Which by the way she already knows how to do lol.
She is doing very well with learning her sight words to teach herself how to read. There's only two words that she occasionally mixes up, so that at least is a work in progress along with cutting with scissors. Apparently she's just like me and likes to venture off the dotted lines paving her own path for herself. Ha!
Despite missing several days of school due to be constantly sick, I am impressed with all that she absorbs on a daily basis and has been learning. I'm very happy with the school I chose to enroll her into as well as thrilled with who she has for a teacher. I'm very much looking forward to seeing her continue to excel academically where she is and couldn't be more thrilled to see the little girl she will continue to grow into.
Saturday, October 22, 2016
For what it's worth
I know the blog entries have become fewer and far between lately and I apologize for that, however, my top priority has and always will be in the best interest of Arley.
There has been recent instances where I have noticed an influx in visitor views to her page and the mommy intuition in me has suspected certain wandering eyes keeping tabs for a while, especially when a particular someone decided to send me a friend request. I won't go into any greater detail because it's not really anyone's business, but I will say it has made me even more aware of the things I post both here on the blog and on her Facebook page.
Due to this, I have been contemplating for some time now whether or not I should either make this blog private and viewable only to readers I approve, or making a brand new blog and only allowing those on my personal Facebook account to have access to it. I haven't decided what I will do just yet, but figure I will at least keep this blog open until the end of the year so that I have had ample amount of time to decide on what may be the best course of action moving forward.
With that being said, I do have a lot of updates to post and will try to post as many new entries as I can in the upcoming weeks as we head into the holiday season. For what it's worth though, we are super grateful for all the continued support we have received over the years and will remain to have as we continue to navigate this journey and all the new obstacles that have arised recently.
There has been recent instances where I have noticed an influx in visitor views to her page and the mommy intuition in me has suspected certain wandering eyes keeping tabs for a while, especially when a particular someone decided to send me a friend request. I won't go into any greater detail because it's not really anyone's business, but I will say it has made me even more aware of the things I post both here on the blog and on her Facebook page.
Due to this, I have been contemplating for some time now whether or not I should either make this blog private and viewable only to readers I approve, or making a brand new blog and only allowing those on my personal Facebook account to have access to it. I haven't decided what I will do just yet, but figure I will at least keep this blog open until the end of the year so that I have had ample amount of time to decide on what may be the best course of action moving forward.
With that being said, I do have a lot of updates to post and will try to post as many new entries as I can in the upcoming weeks as we head into the holiday season. For what it's worth though, we are super grateful for all the continued support we have received over the years and will remain to have as we continue to navigate this journey and all the new obstacles that have arised recently.
Friday, August 26, 2016
Not taken seriously
I'm trying my best to write this update and not have the anger that is swirling around inside me come spewing out all over this latest entry, but if you know me personally you know I don't make any promises that I don't intend to keep, so be forewarned, this post could have an explicit word or two or three come spewing out at any given moment and I will give zero fucks about it. See, I told you so.
As some of you may or may not be privy to, Arley's main Oncologist that we have been working with over the last 2.5 years decide to leave CT and move elsewhere to pursue other things. Which is great ya know? We should all do that at some point in our lives, and we met before he left, Arley had her scans done and he suggested a new Oncologist for us and I agreed that it was probably a decent choice and trusted wholeheartedly in his judgement.
Well, after Arley's scans were conducted he called to let me know that something appeared on her bladder in the scans and that we needed to order an ultrasound for further testing immediately. Had the ultrasound done and that was inconclusive because what the Oncologist said was not what they saw so I'm like fucking great now we need a third opinion because both of what I am told contradicts the other and I have no idea what's going on, even though something being on her bladder kind of made sense to me at the time.
Then he left the practice, and the other Oncologist took several months before we had our first proper meeting. He briefly saw Arley before being called away into surgery about a month ago when I was trying to explain to him about her constant leg pain despite going to weekly physical therapy appointments. I met first with someone who had never met Arley and I can assure barely graced her file before deciding that Arley's pain was due to "growing pains." Growing pains? Seriously? Arley has documented problems with her legs, especially the left one with foot drop, constantly loses her balance and trips and falls. You're just going to write it off as growing pains? What the fuck is the matter with you?
Whatever. I let that shit slide because I knew better. I know my kid inside and out. I have been dealing with various medical issues with her since she was a baby and like hello, I'm her mother! The physical therapist was in agreement with me as was Arley's pediatrician, ya know, people who have actually spent a decent amount of time with my kid and hey wouldn't you know, actually listen to me too!
Anyway there has been a lot of back and forth going on with trying to secure appointments necessary for my kiddo to get her second (third) opinion on what's going on. I'm being met with road block after road block because nobody wants to work with me regarding my work schedule. I don't want to take unnecessary days off from work (that I have had to anyway) when I have all day on Friday off. Schedule us to be seen from 8a-5p I don't care just make it happen. Well, doctors don't want to see too many patients on Fridays (of course) so I wasn't getting too far. So I'm bouncing around between Connecticut and Boston to figure out what the deal is.
That brings us to Arley's scans the other day. We met with the Oncologist at CCMC and he didn't think it was overly necessary to scan Arley's bladder/lower regions, but you bet your ass I wouldn't give in until he did and agreed to scan it as well as the main site of her cancer. Then after all was said and done with her scans, complete radio silence. Never heard a damn word from Children's. Okayyy. Um, hello (waves frantically) worried mother over here. Did you find something on the scans or not? Fuck it, I'm not waiting any longer and I'm on the phone scheduling her to be seen up in Boston with her assigned Oncologist up there.
The good part about scheduling an appointment up in Boston is that I know in my heart that they are going to listen to me and take me seriously. Boston is freaking God in my eyes when it comes to this kind of thing and is constantly on the cusp of cutting edge stuff so if anyone is going to find something going on with my kid it's Boston. And wouldn't you freaking know they did.
I had completely forgotten about the fact that Arley's Boston Oncologist was going to give us an update on the scans for Friday(today). I seriously had been thinking all day that it was Saturday as I have had a lot of stressful things going on as well lately that were up in the air that I was trying to resolve. So today I woke up happy as a clam with so many wonderful things coming up over the immediate horizon, only to be shocked as hell to hear what the Oncologist from Boston had to say.
Cutting to the chase, Arley has blood showing up in her urine. Which means in short that there could very well be something going on with her kidneys, which would explain quite a bit that she has been dealing with since oh I don't know the end of freaking MAY! The only good thing we know is it's not an infection and there was no bacteria present. However, this could mean a whole bunch of shitty things one of them being kidney cancer. They don't think so because in children it's rare, but they didn't think she had cancer in her neck almost 3 years ago now did they?
So through my tears I tried reaching out to the Pediatrician's office and we were having some random connection issues to where we could hear each other perfectly fine and then all of a sudden I could hear them, but they couldn't hear me and we had several failed attempts with the phone before I said screw it, put Arley in the car and drove over there to at least give them the direct number to Boston's Oncologist.
Eventually later on this evening Arley's Pediatrician called me. Both the Boston Oncologist and her Pediatrician are perplexed as to why this is currently happening and what the cause or even the source of the cause is. This is kind of over the realm that the Oncologist has ever dealt with personally so we have calls out to the Pediatric Urologist to see what needs to be done as the next step. So far the only thing we have planned is to collect an early morning sample of urine from Arley to start the day and by dinnertime have an appointment set up with the Pediatrician while we wait to hear from the Urologist. Cue the agonizing wait of the weekend to fly right on by.
And now, we wait. So many questions, so little answers. Everything is completely up in the air right now. Things I have been working so hard towards over the summer to make our lives better are currently in jeopardy because her CCMC Oncologist thinks he knows my kid better than I do and brushed us off twice. Between you and me, he's going to get an awful earful the next time he sees us. You haven't seen mama bear mode come out, but it's going to in full force. If he would just have listened to me when I brought this to his attention the first time we either wouldn't be in this predicament, or I would at least have some kind of idea as to what to do.
Time is running out on a lot of things and like I just mentioned, a lot of things are currently on the line and I don't know which damn way this is all going to drop. Arley and I had so much good things to look forward to and everything seems to be crumbling down around me after I have worked so hard towards these goals all summer. All because someone who thought he was the "expert" didn't take this mama seriously.
To be continued..........
As some of you may or may not be privy to, Arley's main Oncologist that we have been working with over the last 2.5 years decide to leave CT and move elsewhere to pursue other things. Which is great ya know? We should all do that at some point in our lives, and we met before he left, Arley had her scans done and he suggested a new Oncologist for us and I agreed that it was probably a decent choice and trusted wholeheartedly in his judgement.
Well, after Arley's scans were conducted he called to let me know that something appeared on her bladder in the scans and that we needed to order an ultrasound for further testing immediately. Had the ultrasound done and that was inconclusive because what the Oncologist said was not what they saw so I'm like fucking great now we need a third opinion because both of what I am told contradicts the other and I have no idea what's going on, even though something being on her bladder kind of made sense to me at the time.
Then he left the practice, and the other Oncologist took several months before we had our first proper meeting. He briefly saw Arley before being called away into surgery about a month ago when I was trying to explain to him about her constant leg pain despite going to weekly physical therapy appointments. I met first with someone who had never met Arley and I can assure barely graced her file before deciding that Arley's pain was due to "growing pains." Growing pains? Seriously? Arley has documented problems with her legs, especially the left one with foot drop, constantly loses her balance and trips and falls. You're just going to write it off as growing pains? What the fuck is the matter with you?
Whatever. I let that shit slide because I knew better. I know my kid inside and out. I have been dealing with various medical issues with her since she was a baby and like hello, I'm her mother! The physical therapist was in agreement with me as was Arley's pediatrician, ya know, people who have actually spent a decent amount of time with my kid and hey wouldn't you know, actually listen to me too!
Anyway there has been a lot of back and forth going on with trying to secure appointments necessary for my kiddo to get her second (third) opinion on what's going on. I'm being met with road block after road block because nobody wants to work with me regarding my work schedule. I don't want to take unnecessary days off from work (that I have had to anyway) when I have all day on Friday off. Schedule us to be seen from 8a-5p I don't care just make it happen. Well, doctors don't want to see too many patients on Fridays (of course) so I wasn't getting too far. So I'm bouncing around between Connecticut and Boston to figure out what the deal is.
That brings us to Arley's scans the other day. We met with the Oncologist at CCMC and he didn't think it was overly necessary to scan Arley's bladder/lower regions, but you bet your ass I wouldn't give in until he did and agreed to scan it as well as the main site of her cancer. Then after all was said and done with her scans, complete radio silence. Never heard a damn word from Children's. Okayyy. Um, hello (waves frantically) worried mother over here. Did you find something on the scans or not? Fuck it, I'm not waiting any longer and I'm on the phone scheduling her to be seen up in Boston with her assigned Oncologist up there.
The good part about scheduling an appointment up in Boston is that I know in my heart that they are going to listen to me and take me seriously. Boston is freaking God in my eyes when it comes to this kind of thing and is constantly on the cusp of cutting edge stuff so if anyone is going to find something going on with my kid it's Boston. And wouldn't you freaking know they did.
I had completely forgotten about the fact that Arley's Boston Oncologist was going to give us an update on the scans for Friday(today). I seriously had been thinking all day that it was Saturday as I have had a lot of stressful things going on as well lately that were up in the air that I was trying to resolve. So today I woke up happy as a clam with so many wonderful things coming up over the immediate horizon, only to be shocked as hell to hear what the Oncologist from Boston had to say.
Cutting to the chase, Arley has blood showing up in her urine. Which means in short that there could very well be something going on with her kidneys, which would explain quite a bit that she has been dealing with since oh I don't know the end of freaking MAY! The only good thing we know is it's not an infection and there was no bacteria present. However, this could mean a whole bunch of shitty things one of them being kidney cancer. They don't think so because in children it's rare, but they didn't think she had cancer in her neck almost 3 years ago now did they?
So through my tears I tried reaching out to the Pediatrician's office and we were having some random connection issues to where we could hear each other perfectly fine and then all of a sudden I could hear them, but they couldn't hear me and we had several failed attempts with the phone before I said screw it, put Arley in the car and drove over there to at least give them the direct number to Boston's Oncologist.
Eventually later on this evening Arley's Pediatrician called me. Both the Boston Oncologist and her Pediatrician are perplexed as to why this is currently happening and what the cause or even the source of the cause is. This is kind of over the realm that the Oncologist has ever dealt with personally so we have calls out to the Pediatric Urologist to see what needs to be done as the next step. So far the only thing we have planned is to collect an early morning sample of urine from Arley to start the day and by dinnertime have an appointment set up with the Pediatrician while we wait to hear from the Urologist. Cue the agonizing wait of the weekend to fly right on by.
And now, we wait. So many questions, so little answers. Everything is completely up in the air right now. Things I have been working so hard towards over the summer to make our lives better are currently in jeopardy because her CCMC Oncologist thinks he knows my kid better than I do and brushed us off twice. Between you and me, he's going to get an awful earful the next time he sees us. You haven't seen mama bear mode come out, but it's going to in full force. If he would just have listened to me when I brought this to his attention the first time we either wouldn't be in this predicament, or I would at least have some kind of idea as to what to do.
Time is running out on a lot of things and like I just mentioned, a lot of things are currently on the line and I don't know which damn way this is all going to drop. Arley and I had so much good things to look forward to and everything seems to be crumbling down around me after I have worked so hard towards these goals all summer. All because someone who thought he was the "expert" didn't take this mama seriously.
To be continued..........
Friday, July 22, 2016
Occupational Therapy
If I am being honest here, Arley has been struggling quite a bit lately. Most notably with her legs. She still can't walk for extended periods of time without getting tired and wanting to be carried plus she also still trips and falls.
She goes to weekly PT sessions, but every now and then complains about her legs. After last weeks session she was so worn out and complained about the pain that I had to give her a small dose of medicine just to relax her enough to be able to sleep.
I am beyond frustrated at this point. I have had doctors say that it's probably growing pains, but to me growing pains shouldn't be lasting this long. I hate seeing my child go through this and be helpless to how to go about helping to make her feel better. My mom guilt has been through the roof for weeks now.
To top all of this off she also met with the feeding team the other day and they decided that she is going to need Occupational Therapy now too. If you have known Arley since she was a baby then you would know that we have had huge battles of trying to get her the right formula and then baby food, before moving on to table food.
She was very late in the game with all of that due to her allergies, gag reflex and texture issues. I remember being told that eventually she would grow out of it, but here we are almost 5 years later and she still eats only a handful of foods.
She's definitely not starving, but her palate is extremely limited and it gets tiresome feeding her the same things over and over again. On the other hand it is what it is, I choose my battles, and this isn't one of them.
Thankfully the feeding team seemed quite supportive in what I am doing so far. Making it a positive experience, praising her when she tries a new food even if it is few and far between. I am not the type of parent that is going to demand she eat what's in front of her knowing full well that she won't, I do cater to her likes because lets face it, if you went through what she does you would cling to what tastes good too.
I don't want Arley to develop any ill will towards the foods she eats and be subjected to an eating disorder when she's older because of it. That's the last thing either of us needs. There is also a bit of sensory going on with her too because the look of a food can set her off and if she tastes something she doesn't like she throws it up, rather than spitting it out.
With going to Occupational Therapy the idea is getting her to play with her food. Looking at it, touching it, chopping it up, or whatever else it is they decide to do. The ultimate goal is to expand on the foods she eats, but getting her to do so is not going to be an easy feat.
People have also suggested that the peer pressure so to speak of seeing other kids her age at school would probably help her in wanting to try new foods too. Yeah no. Arley is way too smart for that. If the visual component wasn't there, then I would probably agree that yes she would be more apt to trying foods, but if something doesn't look right, she's not going near it.
We haven't even begun the OT and just thinking about it I am exhausted. It's just another appointment to add to our agenda, one more battle we have to try and conquer and if I can be blunt, I'm pretty much over it. Wishing on all the stars in the sky that things can just be normal, but knowing full well that this is our normal and it has been for years.
I can't lay any blame on her though, she gets this trait from me. I was a very picky eater when I was her age, but eventually the older I got the more foods I was willing to try, but it took me well into my 20s to expand my horizons. Fuck, karma is a bitch.
We have some more appointments we need to get lined up as well as meeting with more specialists, so once that has been done I will post more updates soon.
She goes to weekly PT sessions, but every now and then complains about her legs. After last weeks session she was so worn out and complained about the pain that I had to give her a small dose of medicine just to relax her enough to be able to sleep.
I am beyond frustrated at this point. I have had doctors say that it's probably growing pains, but to me growing pains shouldn't be lasting this long. I hate seeing my child go through this and be helpless to how to go about helping to make her feel better. My mom guilt has been through the roof for weeks now.
To top all of this off she also met with the feeding team the other day and they decided that she is going to need Occupational Therapy now too. If you have known Arley since she was a baby then you would know that we have had huge battles of trying to get her the right formula and then baby food, before moving on to table food.
She was very late in the game with all of that due to her allergies, gag reflex and texture issues. I remember being told that eventually she would grow out of it, but here we are almost 5 years later and she still eats only a handful of foods.
She's definitely not starving, but her palate is extremely limited and it gets tiresome feeding her the same things over and over again. On the other hand it is what it is, I choose my battles, and this isn't one of them.
Thankfully the feeding team seemed quite supportive in what I am doing so far. Making it a positive experience, praising her when she tries a new food even if it is few and far between. I am not the type of parent that is going to demand she eat what's in front of her knowing full well that she won't, I do cater to her likes because lets face it, if you went through what she does you would cling to what tastes good too.
I don't want Arley to develop any ill will towards the foods she eats and be subjected to an eating disorder when she's older because of it. That's the last thing either of us needs. There is also a bit of sensory going on with her too because the look of a food can set her off and if she tastes something she doesn't like she throws it up, rather than spitting it out.
With going to Occupational Therapy the idea is getting her to play with her food. Looking at it, touching it, chopping it up, or whatever else it is they decide to do. The ultimate goal is to expand on the foods she eats, but getting her to do so is not going to be an easy feat.
People have also suggested that the peer pressure so to speak of seeing other kids her age at school would probably help her in wanting to try new foods too. Yeah no. Arley is way too smart for that. If the visual component wasn't there, then I would probably agree that yes she would be more apt to trying foods, but if something doesn't look right, she's not going near it.
We haven't even begun the OT and just thinking about it I am exhausted. It's just another appointment to add to our agenda, one more battle we have to try and conquer and if I can be blunt, I'm pretty much over it. Wishing on all the stars in the sky that things can just be normal, but knowing full well that this is our normal and it has been for years.
I can't lay any blame on her though, she gets this trait from me. I was a very picky eater when I was her age, but eventually the older I got the more foods I was willing to try, but it took me well into my 20s to expand my horizons. Fuck, karma is a bitch.
We have some more appointments we need to get lined up as well as meeting with more specialists, so once that has been done I will post more updates soon.
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