The forever wait.
I have some information about my dad, but not much. The doctor (not the oncologist) said that it is possible the mass in his chest is an infection, although it could be cancer. The mass is 6 cm and growing fast according to the primary care doctor.
At 4 pm today, my dad saw the oncologist and he said his best guess is that it is lymphoma. There is a cluster of lymph nodes at the base of his trachea. The possibilities are that he has: lymph gland clusters, lymphoma, germ cell cancer or an infection. The doctor that removed a mass from my sister, Madeline's thymus, will be removing a lymph node from my dad. Once that is done, they will be able to determine what it is we are facing. That doctor is currently in surgery and I don't know when that procedure will take place. Dr H (the oncologist) said that my dad's lab work looked really good. Whatever we are facing, it is in early stages (which we all knew because my dad was hospitalized in November for pneumonia and did not have any mass located anywhere about his lungs at that time).
In other news, Madeline was told today (also by Dr H) that he believes she has lupus. We already knew that she had an IgG deficiency, but this is new. I had to google lupus because I was not 100% sure what it was. I do not know what this means long term.
It sort of feels like my family is falling apart. I'm trying not to stress and be upset about it, but it is definitely affecting me. If you are the praying type, will you please keep my family in your thoughts and prayers? Please do not mention this on FB either. When I am ready to talk about it there, I will.
In other news, Millie's eye appointment has left me scratching my head. The specialist told me that in 47 years she had never seen or had a case like Millie's. Those words have been scratching at the back of my mind since Monday's appointment. It is no secret that Sean dislikes the place that Millie is being treated and has maintained all along that they are incompetent. I've forged ahead with his thinking on the back burner of my mind and have drawn my own conclusion that Sean is right.
Over a year ago when we first started going to the specialist, Millie's right eye was crooked, her left eye was dominant. Millie could see up to 5 feet away in her right eye and up to 20 feet away in her left. One year later, Millie's right eye is straight, the dominant eye and her left eye is crooked. Millie can see up to 20 feet away with her right eye, but not more than 2 inches away with her left. The specialist told me that she has never had a child flip visual fixation from one eye to the other. She also observed that Millie has eccentric fixation in the left eye.
After the glasses fiasco (defective glasses), the appointment in February that went terrible and then the specialist telling me she has NEVER had a case like Millie's, I have lost all confidence in their ability to treat Millie. I have put a call in to our pediatrician to find out if there is any recourse we can take. I have not heard back yet, but I suspect I will get a call before the week is out.
There is more to this story with the specialist, but I'm too drained to really go in to any more of it.
What I will say about the situation is that my heart hurts. It hurts me so deeply to think that Millie cannot see properly. I remember when I first got glasses in the 6th grade and I remember, vividly, what it felt like to see for the first time and I just want that for my little girl. At this point, I do not even care about whether or not her eye is crooked, I just want her to be able to see.
As Millie went to bed last night, she said this,
Millie: "Mom, can we pray to God?"
Me: "Yes, Millie. What would you like to pray about?"
Millie: "I want God to fix my eye."
My heart felt like it hit the floor. Maybe it is dumb, and maybe a lot of other people have it way worse, but as Millie's mother, those words hurt my heart.
Among all this sadness, grief, information and whatnot that I am trying to work through, I am trying to keep my mind busy, occupied and keep things fun. My mom, dad, sisters and I all decided we were not going to be telling the grand kids about what is going on with my dad. At least not yet, while there still is not much to tell.
Anyway, on to the fun.
My professional little fisher girl!
I think Sean actually caught that and Autumn reeled it in, but we called it an Autumn fish.
Touching it.
Look at that excitement! Her first fish this season.
We are not raising any wieners over here!
Today I went to the park with a few gals: Me, Joy, Kyle and Pearl (Pearl has Addie in Millie's class at school). Pearl is moving next week and this was our last outing with them. I am so sad about that. Pearl is one of the people I was really looking forward to becoming closer with. I do hope to keep a play date group going with the other gals though. Kyle reminds me a lot of myself in ways and we have really started to make a connection that I hope deepens with time.
Telling Pearl goodbye in a Millie way.
The chitlins. From left to right: Isaiah, Adelaide, Olive, Autumn, Peyton and Millie.
Once we got home from the park, I really needed to clean my car. It hasn't been washed in like two years.....
Of course I enlisted the help of my child slaves.
Strike a pose!
HA HA Poor Millie!!!!!!!!!
I leave you with this.
I am stressed. I am sad. I am feeling a bit distressed and maybe even a little depressed about the state of affairs that are going on around me, but I am OK. I do wish I had someone to talk to about all of this. I feel like I cannot talk openly with my mom about it. She is in such a fragile state at the moment. She is the person I would normally lean on in circumstances such as these. I am being her rock, her safe place, but I haven't found an outlet for myself yet. I don't know how to sort through all the things I am feeling. I just know I have a lot of feelings going on right now. It helps me to write about it here. You are going to see less of me on facebook. I just cannot deal with facebook right now. If you want to know what is going on with me, you are going to have to check here. I hope you understand. This is my outlet.
Take the time to love your little humans and all that makes them special. Don't forget to laugh.
Cherish HOPE
At 4 pm today, my dad saw the oncologist and he said his best guess is that it is lymphoma. There is a cluster of lymph nodes at the base of his trachea. The possibilities are that he has: lymph gland clusters, lymphoma, germ cell cancer or an infection. The doctor that removed a mass from my sister, Madeline's thymus, will be removing a lymph node from my dad. Once that is done, they will be able to determine what it is we are facing. That doctor is currently in surgery and I don't know when that procedure will take place. Dr H (the oncologist) said that my dad's lab work looked really good. Whatever we are facing, it is in early stages (which we all knew because my dad was hospitalized in November for pneumonia and did not have any mass located anywhere about his lungs at that time).
In other news, Madeline was told today (also by Dr H) that he believes she has lupus. We already knew that she had an IgG deficiency, but this is new. I had to google lupus because I was not 100% sure what it was. I do not know what this means long term.
It sort of feels like my family is falling apart. I'm trying not to stress and be upset about it, but it is definitely affecting me. If you are the praying type, will you please keep my family in your thoughts and prayers? Please do not mention this on FB either. When I am ready to talk about it there, I will.
In other news, Millie's eye appointment has left me scratching my head. The specialist told me that in 47 years she had never seen or had a case like Millie's. Those words have been scratching at the back of my mind since Monday's appointment. It is no secret that Sean dislikes the place that Millie is being treated and has maintained all along that they are incompetent. I've forged ahead with his thinking on the back burner of my mind and have drawn my own conclusion that Sean is right.
Over a year ago when we first started going to the specialist, Millie's right eye was crooked, her left eye was dominant. Millie could see up to 5 feet away in her right eye and up to 20 feet away in her left. One year later, Millie's right eye is straight, the dominant eye and her left eye is crooked. Millie can see up to 20 feet away with her right eye, but not more than 2 inches away with her left. The specialist told me that she has never had a child flip visual fixation from one eye to the other. She also observed that Millie has eccentric fixation in the left eye.
After the glasses fiasco (defective glasses), the appointment in February that went terrible and then the specialist telling me she has NEVER had a case like Millie's, I have lost all confidence in their ability to treat Millie. I have put a call in to our pediatrician to find out if there is any recourse we can take. I have not heard back yet, but I suspect I will get a call before the week is out.
There is more to this story with the specialist, but I'm too drained to really go in to any more of it.
What I will say about the situation is that my heart hurts. It hurts me so deeply to think that Millie cannot see properly. I remember when I first got glasses in the 6th grade and I remember, vividly, what it felt like to see for the first time and I just want that for my little girl. At this point, I do not even care about whether or not her eye is crooked, I just want her to be able to see.
As Millie went to bed last night, she said this,
Millie: "Mom, can we pray to God?"
Me: "Yes, Millie. What would you like to pray about?"
Millie: "I want God to fix my eye."
My heart felt like it hit the floor. Maybe it is dumb, and maybe a lot of other people have it way worse, but as Millie's mother, those words hurt my heart.
Among all this sadness, grief, information and whatnot that I am trying to work through, I am trying to keep my mind busy, occupied and keep things fun. My mom, dad, sisters and I all decided we were not going to be telling the grand kids about what is going on with my dad. At least not yet, while there still is not much to tell.
Anyway, on to the fun.
My professional little fisher girl!
I think Sean actually caught that and Autumn reeled it in, but we called it an Autumn fish.
Touching it.
Look at that excitement! Her first fish this season.
We are not raising any wieners over here!
Today I went to the park with a few gals: Me, Joy, Kyle and Pearl (Pearl has Addie in Millie's class at school). Pearl is moving next week and this was our last outing with them. I am so sad about that. Pearl is one of the people I was really looking forward to becoming closer with. I do hope to keep a play date group going with the other gals though. Kyle reminds me a lot of myself in ways and we have really started to make a connection that I hope deepens with time.
Telling Pearl goodbye in a Millie way.
The chitlins. From left to right: Isaiah, Adelaide, Olive, Autumn, Peyton and Millie.
Once we got home from the park, I really needed to clean my car. It hasn't been washed in like two years.....
Of course I enlisted the help of my child slaves.
Strike a pose!
HA HA Poor Millie!!!!!!!!!
I leave you with this.
I am stressed. I am sad. I am feeling a bit distressed and maybe even a little depressed about the state of affairs that are going on around me, but I am OK. I do wish I had someone to talk to about all of this. I feel like I cannot talk openly with my mom about it. She is in such a fragile state at the moment. She is the person I would normally lean on in circumstances such as these. I am being her rock, her safe place, but I haven't found an outlet for myself yet. I don't know how to sort through all the things I am feeling. I just know I have a lot of feelings going on right now. It helps me to write about it here. You are going to see less of me on facebook. I just cannot deal with facebook right now. If you want to know what is going on with me, you are going to have to check here. I hope you understand. This is my outlet.
Take the time to love your little humans and all that makes them special. Don't forget to laugh.
Cherish HOPE
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