Here we are, another month down in our long journey with Rhabdomyosarcoma. It hasn't been an easy road, and unfortunately it's just getting harder for the both of us.
Arley's walking is suffering due to the chemotherapy and we are still working on figuring out how to rectify the issue. She goes inpatient on Monday so I'm sure there will be a lot of discussion on it. I still need to make her appointment for next week as well and will try to plan it around her treatment since she will already been in the hospital.
She has slowly started to gain a couple ounces here and there too which is great and she has grown significantly taller too. With that her feet also grew and skipped a whole half size. I bought her brand new size 8.5 sneakers and she never got to wear them, jumped right into a size 9! Everyone thinks shes so much older yet shes barely into 3.
The stress of the whole situation, her being sick and not being able to work is having an effect on me. I literally don't even know what to do anymore as I can't work for at least 9-10 more months. I have to get creative and sell our personal possessions so that we can have extra money. My checking and savings is starting to take a huge hit as the financial burden of the last five months is starting to catch up to me. Medical bills are rolling in and the astronomical amounts are taking a toll.
I am not a person who ever asks for help or asks for handouts. I am too prideful to do it so I'm not sure how long I can keep on that road until it becomes too much for me to handle. People always ask me how to help and I honestly don't know, because I will never ask someone for money or anything because I feel that I would always have that hanging over my head.
Arley did get a really fantastic birthday though, I made sure of it because she deserved it. How I am going to get through the holidays coming up soon I don't even want to think about it. I'm kind of in that bah humbug stage right now and seeing the holiday decorations in stores already is making me sad. I know that my state offers giving trees and such where you can put a childs name out there and someone can adopt and donate whatever the child asks for, but my pride is too high and I feel that it's needed for kids even more less fortunate than us.
Anyway, enough about that. I will figure it out as I always do. My focus now has to be about figuring out how to ensure Arley doesn't stop walking. To ensure that the muscles keep doing their job so that we don't have to take other measures. Everything else will eventually fall into place, I'll make sure of it.
I have a couple photos to add back under her birthday festivities post since I got the photos back from meeting John Cena, so when you get the chance click back a few posts and you will see them all there. Until next time my friends...
Thursday, September 25, 2014
Monday, September 22, 2014
Today's Clinic Visit
Today's clinic visit didn't provide me with such good news. I have known for a week now the possibilities of what may be in store next for Arley. I am still coming to terms with the latest as it seems to be a common theme whenever something new is thrown my way about her.
Her walking and chemo combination are the culprit this time. She is still not improving with her walk and this is starting to become concerning. Her doctor watched her walk up and down the hall today and together we have come to the conclusion that some measures will need to be taken.
I am not ready to say exactly what just yet until I have made an appointment for her to be checked out, but once the appointment has been made and I have discussed this at length with the proper people I will relay the news back to you all here.
It's a complete gamble and whether or not this will improve overtime is unknown. Such is life, a complete unknown mystery. I think that is what pisses me off the most about cancer and especially with how rare Arley's is. We (the doctor and I) can't pinpoint how certain things in this journey will effect Arley. As a whole over the last several years all the current research leads him in one direction, but as an individual patient it leads him to another.
What this means for Arley can either be good or bad. Right now we have had to adjust her main chemotherapy to see if it helps the situation (walking) and thus as a result have decreased it to 50% of her normal intake. The hope is that the walking will improve and she can continue to receive it (the one chemo we decreased, remember she gets three kinds) and we need not worry. The downside is she continues to worsen over time and the Rhabdo that we have so far minimized (not yet gone completely) comes back with a vengeance and we have a greater possibility of doing everything all over again with the Proton radiation from Boston included.
Of course I will always remain as optimistic as I can when it comes to everything in Arley's journey, but I can't help but be angry at the fact that this is all happening. For gods sakes she only three years old she shouldn't have to be going through all of this every week and what makes me even more mad is what little funding there is in regards to childhood cancer. Don't get me wrong breast cancer is just as much relevant as any cancer, but the fact that it is so publicized when our children are the future rocks me to the core.
If everyone donated and gave more awareness to childhood cancer then there would be more answers, medicines, techniques, ideas etc on how to cure these kids. I can't even go into any store and find something yellow ribbon related that I can buy to support the cause. It's all pink pink pink. I have hated pink my whole life and even more so now because it seems as though that's all anyone cares about as if breast cancer is THE only cancer out there.
I am sure I know what you are thinking, "How dare she say that breast cancer isn't as much needed for funding as any other cancers out there," and you would be right, however if you knew just how little funding goes to these kids you would probably be angry right along with me. There has been so many advancements for breast cancer that it's time people wake up and put the money towards the future and start thinking yellow and gold and support the causes that truly need it most.
I can't wait 10 years for medicine and research to catch up when my child is currently going through this battle now and I will not apologize for my raging vent either. You have no idea what it's like to watch your child slowly revert back to things she used to do when she was younger because she feels as though that's the only way she has control of the situation. To see her slowly lose her independence that she has had so fiercely since the day she was born.
It's honest to God frustrating to the both of us, but I have to remind myself that while it is very stressful I can not project any of my feelings onto Arley. I don't want her to be any more scared or worried than she already is. People make comments all the time "Oh she's three she won't remember." Um have you met my kid? She's legit one of the smartest on this planet and I'm not saying that because she's my kid, it's because she soaks up everything around her like a sponge and she will literally tell you in great detail what she is going through and did that day. She knows she has cancer, she knows she has no hair, she knows she has boo boos and while it sucks to go through it she's fully aware she needs it to get all better.
Believe me I wish my only worry was what to pack in her school lunch box for preschool everyday, not whether or not she's going to start crawling because the muscles in her legs are weakening due to the chemo. Alas though we will continue this fight we are on and together we will be the best mommy/daughter duo ever and kick the cancer in the ass. Mark my words. Until next time....
Her walking and chemo combination are the culprit this time. She is still not improving with her walk and this is starting to become concerning. Her doctor watched her walk up and down the hall today and together we have come to the conclusion that some measures will need to be taken.
I am not ready to say exactly what just yet until I have made an appointment for her to be checked out, but once the appointment has been made and I have discussed this at length with the proper people I will relay the news back to you all here.
It's a complete gamble and whether or not this will improve overtime is unknown. Such is life, a complete unknown mystery. I think that is what pisses me off the most about cancer and especially with how rare Arley's is. We (the doctor and I) can't pinpoint how certain things in this journey will effect Arley. As a whole over the last several years all the current research leads him in one direction, but as an individual patient it leads him to another.
What this means for Arley can either be good or bad. Right now we have had to adjust her main chemotherapy to see if it helps the situation (walking) and thus as a result have decreased it to 50% of her normal intake. The hope is that the walking will improve and she can continue to receive it (the one chemo we decreased, remember she gets three kinds) and we need not worry. The downside is she continues to worsen over time and the Rhabdo that we have so far minimized (not yet gone completely) comes back with a vengeance and we have a greater possibility of doing everything all over again with the Proton radiation from Boston included.
Of course I will always remain as optimistic as I can when it comes to everything in Arley's journey, but I can't help but be angry at the fact that this is all happening. For gods sakes she only three years old she shouldn't have to be going through all of this every week and what makes me even more mad is what little funding there is in regards to childhood cancer. Don't get me wrong breast cancer is just as much relevant as any cancer, but the fact that it is so publicized when our children are the future rocks me to the core.
If everyone donated and gave more awareness to childhood cancer then there would be more answers, medicines, techniques, ideas etc on how to cure these kids. I can't even go into any store and find something yellow ribbon related that I can buy to support the cause. It's all pink pink pink. I have hated pink my whole life and even more so now because it seems as though that's all anyone cares about as if breast cancer is THE only cancer out there.
I am sure I know what you are thinking, "How dare she say that breast cancer isn't as much needed for funding as any other cancers out there," and you would be right, however if you knew just how little funding goes to these kids you would probably be angry right along with me. There has been so many advancements for breast cancer that it's time people wake up and put the money towards the future and start thinking yellow and gold and support the causes that truly need it most.
I can't wait 10 years for medicine and research to catch up when my child is currently going through this battle now and I will not apologize for my raging vent either. You have no idea what it's like to watch your child slowly revert back to things she used to do when she was younger because she feels as though that's the only way she has control of the situation. To see her slowly lose her independence that she has had so fiercely since the day she was born.
It's honest to God frustrating to the both of us, but I have to remind myself that while it is very stressful I can not project any of my feelings onto Arley. I don't want her to be any more scared or worried than she already is. People make comments all the time "Oh she's three she won't remember." Um have you met my kid? She's legit one of the smartest on this planet and I'm not saying that because she's my kid, it's because she soaks up everything around her like a sponge and she will literally tell you in great detail what she is going through and did that day. She knows she has cancer, she knows she has no hair, she knows she has boo boos and while it sucks to go through it she's fully aware she needs it to get all better.
Believe me I wish my only worry was what to pack in her school lunch box for preschool everyday, not whether or not she's going to start crawling because the muscles in her legs are weakening due to the chemo. Alas though we will continue this fight we are on and together we will be the best mommy/daughter duo ever and kick the cancer in the ass. Mark my words. Until next time....
Tuesday, September 16, 2014
Birthday Festivities
Saturday September 13th
Today my best friend from college flew into town to spend the week with Arley and I. We haven't seen each other in eight months because she lives in South Carolina. I am super excited for her visit because she helps to keep me grounded and sane.
To kick off Arley's birthday weekend (yes my little girl gets the whole damn weekend plus the day of her birthday deal with it!) we are surprising her with a trip to the Mass Mutual Center to watch WWE live and to meet Arley's favorite wrestler John Cena!
Let me just tell you, that John is one of the nicest celebrities I have ever met (and I have had the privilege to meet many in my lifetime). He shook hands with everyone in our party and introduced himself, and when he laid eyes on Arley he immediately got down to her level and engaged her in conversation.
She brought her John Cena action figure and showed it to him and he grabbed it and said that it "was the coolest toy ever," and showed her how to do his famous "Can't see me" move on it. Then he played a couple rounds of peek-a-boo with her and then sat next to her.
They continued their conversation and he told her that he had some presents for her. Inside the bag he produced a hat, t-shirt, arm bands, the program for that evenings matches and his 'Never Give Up' towel. He signed everything for her, plus a WWE Yearbook and 8x10 photo we brought with us.
He then took dozens of photos with us and I got bold and asked if he would take a selfie and he obliged. It was an incredible meeting for Arley and the smiles she had throughout the whole experience was amazing. I am truly blessed that we were able to get the meet to happen. She loved meeting her favorite "fight fight" wrestler and he was so genuine and has a kind heart. I can see why he is one of the number one celebrities kids want to meet and for this very reason I know she will cherish the memory for a lifetime.
We also had the privilege of meeting Tag Team Champions Jey & Jimmy Uso who were also very kind and sweet to Arley. We got their autographs and took a bunch of photos together as well.
Then we headed to our seats (the floor!!!!) and waited for the show to start. I wish I had video of Arley's experience watching her first "fight fight" show because she was so into the whole thing. Yelling, screaming, cheering, clapping the whole nine yards she just ate up everything that was happening around her. I could not have been more happy that this dream could come true for her.
Sunday September 14
Today is Arley's birthday party whoop whoop! Finally, all of my hard work of preparing for a Wild West extravaganza is about to pay off. I had invited at least 25-30 people, but while a good majority of them RSVP'd only 17 actually showed. That was a slight bummer considering I spent a lot of money for food and favors for the kiddos, but we still had a blast without them anyway!
It was a more intimate party and the kids that came had fun playing together and I think (based off feedback) that the party was still a hit regardless of the lack of attendees. Overall I was pleased with the way everything came together and that my vision for Arley's party was able to become a reality. I'm already excited to start planning for next year. (Hey I love to plan a good shindig!)
Monday September 15
Happy 3rd Birthday to my beautiful little lady!
Today we are continuing with the birthday tradition of spending the day at the largest fair in New England known as "The Big E." I was beyond excited for it because Arley is finally going to be tall enough to ride on the kiddie rides! YAY!!!
I also couldn't wait to get my grub on because I hoped to branch out and try new foods this year (didn't happen) and to just relax, have fun, and enjoy celebrating the life of my daughter.
Arley had the best time today. She rode the carousal four times in a row, the motorcycles twice, the bumble bee twice, and the ferris wheel once. She also got to play a couple of games (won once!) and was on her absolute best behavior. If this is any indication of what being 3 has in store for me, then bring it on cause I am ready!
That's it for the updates for now. So happy that I could share with you the last three glorious days that Team Arley Sage had. Until next time my friends....
Thursday, September 11, 2014
First week back home
I can't get over how fast this last week has flown by! We have officially been back home in CT for a week now and it has been non-stop ever since. First with Arley's inpatient chemo treatment and then with getting everything together for her birthday party this weekend and not to mention anticipating the arrival of Auntie Lee Lee has left me almost exhausted.
I've hardly had a quiet moment to be able to come on here and update you all, but alas here I am.
Arley is doing well adjusting back into the home life and has been acting more independent again which is a huge relief. She still struggles daily with nausea and her walking, but together we are trying to get it all under control as best as we can. I am also still in the process of organizing her room into a special place to relax, but haven't done much with it since arriving home because her hospital visit and birthday planning have taken up all of my time.
I am so looking forward to getting her together with all her friends whom she hasn't seen in 8 weeks. Poor little thing has hardly had any socialization with kids her own age so I'm glad that her ending radiation treatment lined up with her birthday so we can kind of celebrate coming home with it as well.
Nearly everything is set for her party. I have done a few small craft projects (one more still to do tomorrow), grocery shopped for the main food & drink items that we don't need to buy fresh the day of, and organized the house as best as I could.
We have an action packed weekend and then are quite busy the following week, so updates may be few and far between, but I will most definitely post party photos for you all to enjoy as I have already been asked by several people to do so. (I promise!)
Did I mention that I can't wait for Auntie Lee Lee to arrive? She's actually my BFF from college and my sorority sister so you can only imagine the type of shenanigans we will get ourselves into while she's here, but the most tame things we will probably do is all you can eat sushi, movies, gossip and shopping. It's been 8 months since we have seen her and both Arley & I have been counting the days until she gets here. Two more days to go whoop whoop!
Well, that's all the updating I have right now. If we haven't been out shopping for the party then we have just been trying to relax as much as possible before all the excitement begins. Hope you all are doing well, I can't believe September is almost half way over! Bring in the fall weather, the pumpkins, the apples, Halloween, my birthday, etc. We are so ready for it! Until next time...
Thursday, September 4, 2014
Radiation Completion
I am very happy to announce that Arley has successfully completed seven weeks worth of radiation treatment!
The journey in Boston did not come easily, but together she and I mastered every obstacle thrown our way and came out together victorious. I myself am so proud of her that I too am radiating, just with happiness.
Arley is without a doubt a rock star. She showed Boston that nothing was going to bring her down and even when she was feeling the most icky she would charge on with a huge smile plastered on her face.
Her spirit of life is one that I have never met before, especially with a young child. She handles everything with grace and shows the world just how truly magnificent she is.
Thankfully her side effects were very minimal as compared to others in her shoes. She never got mouth sores, never needed constant feedings through her tube, never lost her appetite or any of the long list of side effects they said she would encounter. I am so proud of myself as well that I stuck to my guns about not trying the feeding tube formula on her and held on with the hope that she would not need it, and she didn't.
I was not about to be pressured into "just try it" for any reason that I didn't believe was truly necessary. I can completely understand where the staff was coming from, however I know my kid better than anyone on this planet and I only wanted to cross certain bridges when we had to. If it made things a tad bit more difficult then together Arley and I would battle it.
I was not about to try and introduce a new formula into her diet that could potentially have the possibility of causing a reaction in her system, especially when if she did, and it resulted in vomiting, I would be the one left to deal with it and thus putting both of us through that didn't seem like a wise choice so I am thankful that it never came to that and I never had to give her any.
There's no saying that she may never need any assistance the more into this journey we go, but I know her limits and when she is already enduring so much, adding another piece into the mix just didn't seem all that important.
Again, I totally understand people just doing "their job," but sometimes you need to back off especially when parents are already on an emotional roller coaster it's not wise to keep pushing and pushing. I wish people in the medical field or in general would realize that.
I do however want to give notice to the staff at the Proton Center. They did a really fabulous job taking care of Arley. Whether it was to entertain her while they were accessing her port, or just making everyday conversation, we truly felt cared for and it was nice getting to know everyone over the seven weeks we were there.
Our stay at Christopher's Haven was nice. The studio apartment was very spacious and most of the other parents and kids we met were very friendly. It would have been nice to have Arley interact with some of the kids more, but we are definite homebodies and the kids were either much younger than her or much older anyways so it didn't really matter one way or the other about making friends.
Christopher's Haven was also the driving force in forming our new friendship with the Buchholz family and learning about the Clay Buchholz Foundation. I am forever grateful for the opportunities Arley and I received from Clay & Lindsay to attend two games at Fenway and be apart of their Buchholz Bowl charity event.
The pair of them are the absolute sweetest and their daughters are so much fun. Arley and Coco really hit it off and I hope that the two of them get to remain friends in life...
Lastly, it is so nice to be home and in our own beds. It will take some getting used to since we have been away for so long, but I am confident that we will be back to our old routine in no time. Arley has the next several days off from treatment and will resume her Chemo on Monday as inpatient.
So needless to say we will be laying kind of low, unpacking, reorganizing and getting things ready for her 3rd birthday in 10 days! I seriously can not wait because she deserves to have the best possible birthday party that I can create.
Well, it is way past my bedtime, so I am off to go snuggle my little lady and to drift off into dreamland. Until next time friends...
Oh and before I go, here are some photos from the going away party & graduation.
The journey in Boston did not come easily, but together she and I mastered every obstacle thrown our way and came out together victorious. I myself am so proud of her that I too am radiating, just with happiness.
Arley is without a doubt a rock star. She showed Boston that nothing was going to bring her down and even when she was feeling the most icky she would charge on with a huge smile plastered on her face.
Her spirit of life is one that I have never met before, especially with a young child. She handles everything with grace and shows the world just how truly magnificent she is.
Thankfully her side effects were very minimal as compared to others in her shoes. She never got mouth sores, never needed constant feedings through her tube, never lost her appetite or any of the long list of side effects they said she would encounter. I am so proud of myself as well that I stuck to my guns about not trying the feeding tube formula on her and held on with the hope that she would not need it, and she didn't.
I was not about to be pressured into "just try it" for any reason that I didn't believe was truly necessary. I can completely understand where the staff was coming from, however I know my kid better than anyone on this planet and I only wanted to cross certain bridges when we had to. If it made things a tad bit more difficult then together Arley and I would battle it.
I was not about to try and introduce a new formula into her diet that could potentially have the possibility of causing a reaction in her system, especially when if she did, and it resulted in vomiting, I would be the one left to deal with it and thus putting both of us through that didn't seem like a wise choice so I am thankful that it never came to that and I never had to give her any.
There's no saying that she may never need any assistance the more into this journey we go, but I know her limits and when she is already enduring so much, adding another piece into the mix just didn't seem all that important.
Again, I totally understand people just doing "their job," but sometimes you need to back off especially when parents are already on an emotional roller coaster it's not wise to keep pushing and pushing. I wish people in the medical field or in general would realize that.
I do however want to give notice to the staff at the Proton Center. They did a really fabulous job taking care of Arley. Whether it was to entertain her while they were accessing her port, or just making everyday conversation, we truly felt cared for and it was nice getting to know everyone over the seven weeks we were there.
Our stay at Christopher's Haven was nice. The studio apartment was very spacious and most of the other parents and kids we met were very friendly. It would have been nice to have Arley interact with some of the kids more, but we are definite homebodies and the kids were either much younger than her or much older anyways so it didn't really matter one way or the other about making friends.
Christopher's Haven was also the driving force in forming our new friendship with the Buchholz family and learning about the Clay Buchholz Foundation. I am forever grateful for the opportunities Arley and I received from Clay & Lindsay to attend two games at Fenway and be apart of their Buchholz Bowl charity event.
The pair of them are the absolute sweetest and their daughters are so much fun. Arley and Coco really hit it off and I hope that the two of them get to remain friends in life...
Lastly, it is so nice to be home and in our own beds. It will take some getting used to since we have been away for so long, but I am confident that we will be back to our old routine in no time. Arley has the next several days off from treatment and will resume her Chemo on Monday as inpatient.
So needless to say we will be laying kind of low, unpacking, reorganizing and getting things ready for her 3rd birthday in 10 days! I seriously can not wait because she deserves to have the best possible birthday party that I can create.
Well, it is way past my bedtime, so I am off to go snuggle my little lady and to drift off into dreamland. Until next time friends...
Oh and before I go, here are some photos from the going away party & graduation.
Monday, September 1, 2014
September is: Childhood Cancer Awareness Month
Today is the 1st day of September and that means that it is also the start of Childhood Cancer Awareness Month. For the next 30 days and far beyond I will be joining the fight against childhood cancer and helping to promote organizations that I hold dear to my heart to help get the funding that is needed to help find a cure.
Here are some facts that you need to be made aware of...
Here are some facts that you need to be made aware of...
Please take a moment and let that information sink in for a little bit. It's startling information isn't it?
Childhood Cancer research is one of the least funded out there, with so much attention and money going towards Breast Cancer. While that is a very worthy cause too, our children are our future and without the research to help find a cure, we are not helping to preserve that future.
I am not going to be one of those people who throws all sorts of information, facts, figures or statistics at you constantly, but I am going to be the voice of my 2.5 year old daughter and to let her know that I will never stop the fight in trying to find a cure or at the very least more answers as to how and why these diagnosis occur.
You also don't have to make a monetary donation in order to help either. Just simply showing your support to the cause on social media helps to gain awareness and attention easily. Or, if you feel as though that's not enough you can join in one of the following:
- Boston Marathon Jimmy Fund Walk
- Organize a Shave-a-Thon (shave your head)
- Hold a read-a-thon, jump-a-thon, or a garage sale
The sky is the limit and nothing is out of reach with bringing attention and awareness to this worthy cause...
I have been asked several times before (with conducting interviews to help spread the word about Rhabdomyosarcoma), what I would tell other parents.
Simply- don't take anything for granted. If something looks suspicious on your child, get it looked at by a medical professional. I know a lot of times parents don't want to bring their children in for something unnecessary, but I need to remind them that Arley was a happy, healthy, typical 2.5 year old toddler with no signs that cancer was invading her body and then all of a sudden a tumor reared it's ugly head on her neck and the rest is history.
It's better to be overly cautious than to not and realize that something that could've been handled better in the early stages versus later. You know how they say in school "No question is a stupid question?" Well I firmly believe that it can be implied to "No aliment, bump, bruise, mole, etc is stupid and shouldn't be looked at." You just NEVER know! We all like to think we are invincible especially when we are young, but the harsh reality is, we are not cats, we don't get nine lives. We only get one life and we need to cherish it and nurture it so that it grows old and wise, not be taken too soon.
So I ask you, the next time you run to Starbucks or Dunkin Donuts, think to yourself how much those few dollars you are spending on a quick pleasure could help to fund the life and pleasures of many young children around the world. They deserve a shot at life just as much as the next person.
Until next time my friends, please hashtag #TeamArleySage in any of your social media when bringing awareness to this worthy cause, so that I may know how far and wide this fight reaches. Thank you.
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