It's been a while since I am written anything for this blog. There are a few reasons why to. The main one is that I am just so busy with everyday life, that I don't slow down to sit here at write very often. When I do, it's for a mom's website I am a contributor for. So, that's a huge one. I am writing, just not for myself. Really, this blog was started to give updates on my family and myself going through my cancer fight. I am still fighting the big C, but I am doing so well that there really isn't anything to talk about on that front. But, I will give a small update today.
Today is the 4th of July. A day we all celebrate America and becoming a Free Country. Most people celebrate by going out of town to busy places, going to the lakes, rivers, ocean. Heading out to family and friends houses for BBQ's and then the main event at night, the fireworks! Last year and this year we have decided to just stay home and celebrate it together as a small family of three. This morning Brandon had OT (how amazing is that, that his therapist came on a holiday. She is amazing!) and that was fun to watch him through. Both Eric and I were so amazed at Brandon. He has come such a long way in such a short period of time. He usually hates slimy things, or those squishy toys with tentacles hanging off them or squishy things. Not now! He actually couldn't wait to play with a lot of that stuff. It was amazing to see. After therapy, we all left to go to Kaiser (because in this family, Kaiser is our family these days) to pick up some prescriptions. I was there yesterday for chemo and went to get them afterwards, but found out that the pharmacy computers had been down for three hours and they had just gotten back up. So, they were very busy and it would take probably 3 hours to get my one prescription that still needed to be filled. The other two were ready, but I'd rather get them all at once. So I left yesterday with no prescriptions and we ended up going today to get them as a family. Brandon enjoys going there. Mainly because he likes to play on the elevator. If it's busy, Eric will take Brandon up and down the elevator while I wait in line.
Now, we are home and Brandon and Eric are napping while I write. Another reason I don't write as much is that Brandon and I have been very busy. For the last month we have been in a parent and child gymnastics class and also swim lessons. He has had a short break from swim lessons now, but gymnastics just finished a few days ago. We start swim lessons again next week. He had such a blast doing both. I think he will miss gymnastics. He has missed swimming. I know that. He keeps going to get our suits and asks to go swimming. Soon buddy, soon! You ad both of those activities, along with working full time and chemo every other week, it leaves no time for anything else. So, my blog posting as been on the back burner.
On the cancer front. Yes, I am still doing chemo. I found out in April that there is no end to my chemo days. I am on maintenance chemo indefinitely. When the cancer decides that this chemo doesn't work anymore, I will move on to another one. Then maybe another transplant. Maybe a clinical trial. We will see. For now, I am living life the fullest I can without hurting myself and making things worse. See, I still have the fractures in my spine to deal with. So, I have to be careful with some things I do. Even on play dates I notice when it's getting to be too much for me. I lean and hold myself up with playground structures. Then, afterwards on the way home, I use the heat from my heated seats in my car to help my back. Then once I'm home, it's popping a few of the backup pain killers to ease that pain. It sucks. I went from never taking a pill other than vitamins to having to take all kinds of different ones. On a normal day I take six different meds and sometimes, after chemo when I get sick (whichever that day may be) I end up taking a seventh one. Crazy! I know there are people out there that take more, but to go from none or one to six or seven is a lot!
Well, nothing more is going on. Tonight we will be BBQ'g hamburgers and having fries, corn on the cob and watermelon with it. All American meal right there! Hope everybody has an amazing 4th of July! Until next time.
Wednesday, July 4, 2018
Saturday, April 7, 2018
Friends Come & Friends Go...But Some Hurt More Than Others
Multiple Myeloma is technically a terminal diagnosis. As I have said before, there is no cure. You live with this cancer for however long you live after diagnosis.This isn't your typical terminal where you know about how long you have. This terminal is a long slow, and usually painful, death. You're in pain all the time. Well, you might have some days where you feel good, but usually you are in pain. It's bone pain. A nagging pain. Because your bones have fractures and sometimes tumors.
Yes, there is treatment, but you do not know when that treatment will stop working. Or if the next treatment will work. Or the one after that. Some people exhaust all treatment possibilities right away and do not get to the next step of a stem cell transplant. Others are lucky, like I have been, to have treatment work and get that stem cell transplant. There is also a new treatment out there for people who have exhausted all chemotherapy treatments. It's called the Car T-Cell Therapy. But, some people may not make it through that helping them. The same goes with going through a stem cell transplant. Not everybody is lucky to have anything work. And that's my fear. That one day no treatment will work and I will leave Brandon without a mother and Eric without his wife.
A lot of people don't understand this cancer, but seem to act like they know everything about it and the person going through it. I recently lost somebody who I thought was a friend. No, not to cancer or death. Well, kind of not to cancer. This person has another friend going through an incurable cancer and they decided that I supposedly don't understand how lucky I am to have a treatable cancer. Nice to know that they know me better than I know myself. The way I found out about all of this started very childishly. We don't have to go into that. You better believe my fucking ass I know just how lucky I have been. I have seen and watched new virtual friends (from MM support groups on Facebook) go through this worse than I had it and not make it. I have, in the past, gone through a time when a friend of mine was diagnosed with Leukemia when she was 16 and then treatment stopped working and the cancer spread to her lungs and then to her brain. At the same time I had another friend going through a curable cancer and I felt the same way this so called friend of mine is with me, but at 18 I was more adult than this person. I went to the friend with the curable cancer and talked to them. Told them how I felt. What was going on. We actually talked it out and I understood her side and she understood my side. At 18 I was more of an adult than this person I thought was a friend.
This person hurt me. They hurt me hard. I have not been that hurt since I found out a guy I was engaged to was screwing around on me and I had to kick him to the curb. Besides that guy, I have never been this hurt. And of course, they could care less. The way things have gone down, and the way they feel makes me think they would rather I died from my cancer over their friend. Makes me think they would rather Brandon grow up without his mother. I know I am lucky to have a treatable cancer. I know it could be much worse. That is why I do my best to live my life to the fullest I can. I could go out on disability permanently. It's actually something my doctor had mentioned to me, but I would rather try to lead as much of a normal life as I can. Brandon and Eric deserve that.
A few nights ago Eric and I were talking about how we would tell Brandon about my illness. It's an illness I will have for the rest of however long I have. When we tell him, he's probably going to be sad and scared that he may not have his mommy very long. Any time I get sick from a cold or flu, he may think that is it. When the MM comes back, because it will, with vengeance he will be afraid of what may happen. He will never know his mommy as the actives woman she once was. He doesn't understand now, but will one day. And I hope I am still here at that time.
I have lost other friends over my diagnosis. But none have hurt as much as this one has. I mean, people are entitled to their own opinions. We are a free country, although some would beg to differ. But here's a news flash. Not all cancers are the same, No two cancers, or people for that matter, take to treatment the same. I am lucky, very lucky, enough to have had treatment work for me since I started treatment in November of 2015. Just 5 weeks after delivering my son. I am very lucky, I know that. Because not everybody gets a treatment regimen that is good and works.Not everybody gets a diagnosis early or a diagnosis that your cancer is found early.One day my body and my cancer can decide that none of the treatment for my cancer is going to work and just stop. And technically, my cancer is killing me right now as I type. Like I said before, it is a very long slow painful death sentence I have. There are many days I can only stand for maybe 5 minutes at a time from the pain I have. And some days my medication for that pain doesn't work. I push myself to play with Brandon when I am in pain. I shouldn't, but I do. I may complain about things that are trivial to others, but no two cancers are the same. No two people are the same. Some people need to realize that and not compare people.
Friends come and friends go. But when they go, it's usually just from growing apart and going separate ways. People do lose friends over cancer diagnosis because they don't want to see that person diagnosed in pain or they don't want to hear about it. I have lost some when I was first diagnosed. But then again, I had others get closer. I am very lucky to have those friendships. But other the last 2 1/2 years, I have learned that even though people ask you how you are doing, they do not necessarily want to know exactly how you are doing. They want to know good news, not the bad. So, I technically lie and say I am ok. That I am doing well, when in all actuality, most days, I am not. I'm sure when this ex friend finds out about this post, they will probably be angry, but I am at the stage where I just don't care. It is now their loss and they can live with cutting me off in a childish way. I am still hurt, but I am slowly (very slowly) getting over it. I have friends in my life that actually care about me and my family. People that will talk to me if they have a problem. And those are the people I need in my life. Not the ones who think they know everything about me and leave.
I know this post was kind of rambley, but my mind is all over the place about this and has been for a week now. But I knew I needed to write it down. Get it out. Thank you for reading.
Yes, there is treatment, but you do not know when that treatment will stop working. Or if the next treatment will work. Or the one after that. Some people exhaust all treatment possibilities right away and do not get to the next step of a stem cell transplant. Others are lucky, like I have been, to have treatment work and get that stem cell transplant. There is also a new treatment out there for people who have exhausted all chemotherapy treatments. It's called the Car T-Cell Therapy. But, some people may not make it through that helping them. The same goes with going through a stem cell transplant. Not everybody is lucky to have anything work. And that's my fear. That one day no treatment will work and I will leave Brandon without a mother and Eric without his wife.
A lot of people don't understand this cancer, but seem to act like they know everything about it and the person going through it. I recently lost somebody who I thought was a friend. No, not to cancer or death. Well, kind of not to cancer. This person has another friend going through an incurable cancer and they decided that I supposedly don't understand how lucky I am to have a treatable cancer. Nice to know that they know me better than I know myself. The way I found out about all of this started very childishly. We don't have to go into that. You better believe my fucking ass I know just how lucky I have been. I have seen and watched new virtual friends (from MM support groups on Facebook) go through this worse than I had it and not make it. I have, in the past, gone through a time when a friend of mine was diagnosed with Leukemia when she was 16 and then treatment stopped working and the cancer spread to her lungs and then to her brain. At the same time I had another friend going through a curable cancer and I felt the same way this so called friend of mine is with me, but at 18 I was more adult than this person. I went to the friend with the curable cancer and talked to them. Told them how I felt. What was going on. We actually talked it out and I understood her side and she understood my side. At 18 I was more of an adult than this person I thought was a friend.
This person hurt me. They hurt me hard. I have not been that hurt since I found out a guy I was engaged to was screwing around on me and I had to kick him to the curb. Besides that guy, I have never been this hurt. And of course, they could care less. The way things have gone down, and the way they feel makes me think they would rather I died from my cancer over their friend. Makes me think they would rather Brandon grow up without his mother. I know I am lucky to have a treatable cancer. I know it could be much worse. That is why I do my best to live my life to the fullest I can. I could go out on disability permanently. It's actually something my doctor had mentioned to me, but I would rather try to lead as much of a normal life as I can. Brandon and Eric deserve that.
A few nights ago Eric and I were talking about how we would tell Brandon about my illness. It's an illness I will have for the rest of however long I have. When we tell him, he's probably going to be sad and scared that he may not have his mommy very long. Any time I get sick from a cold or flu, he may think that is it. When the MM comes back, because it will, with vengeance he will be afraid of what may happen. He will never know his mommy as the actives woman she once was. He doesn't understand now, but will one day. And I hope I am still here at that time.
I have lost other friends over my diagnosis. But none have hurt as much as this one has. I mean, people are entitled to their own opinions. We are a free country, although some would beg to differ. But here's a news flash. Not all cancers are the same, No two cancers, or people for that matter, take to treatment the same. I am lucky, very lucky, enough to have had treatment work for me since I started treatment in November of 2015. Just 5 weeks after delivering my son. I am very lucky, I know that. Because not everybody gets a treatment regimen that is good and works.Not everybody gets a diagnosis early or a diagnosis that your cancer is found early.One day my body and my cancer can decide that none of the treatment for my cancer is going to work and just stop. And technically, my cancer is killing me right now as I type. Like I said before, it is a very long slow painful death sentence I have. There are many days I can only stand for maybe 5 minutes at a time from the pain I have. And some days my medication for that pain doesn't work. I push myself to play with Brandon when I am in pain. I shouldn't, but I do. I may complain about things that are trivial to others, but no two cancers are the same. No two people are the same. Some people need to realize that and not compare people.
Friends come and friends go. But when they go, it's usually just from growing apart and going separate ways. People do lose friends over cancer diagnosis because they don't want to see that person diagnosed in pain or they don't want to hear about it. I have lost some when I was first diagnosed. But then again, I had others get closer. I am very lucky to have those friendships. But other the last 2 1/2 years, I have learned that even though people ask you how you are doing, they do not necessarily want to know exactly how you are doing. They want to know good news, not the bad. So, I technically lie and say I am ok. That I am doing well, when in all actuality, most days, I am not. I'm sure when this ex friend finds out about this post, they will probably be angry, but I am at the stage where I just don't care. It is now their loss and they can live with cutting me off in a childish way. I am still hurt, but I am slowly (very slowly) getting over it. I have friends in my life that actually care about me and my family. People that will talk to me if they have a problem. And those are the people I need in my life. Not the ones who think they know everything about me and leave.
I know this post was kind of rambley, but my mind is all over the place about this and has been for a week now. But I knew I needed to write it down. Get it out. Thank you for reading.
Saturday, March 24, 2018
Two Years
Today marks two years since I started this blog to let you all, and anybody else who may want to read it, know about my cancer journey while embracing being a new mom. I only know it has been two years because Facebook told me so. It was on the "On this day" part of my timeline. My first post was titled "You Have Cancer" and basically went through what we had gone through seven months before. About hearing those words and all the emotions we had running through us.
Here it is, two years later, and I write when something comes up worth mentioning. When something gets stuck in my head that pertains to my fight against this ugly beast called Multiple Myeloma. The most recent thing I am doing is looking into a plasma cell study where they will do a study on my plasma cells (well, duh) and see what common factors there are with other people with MM. Of course, that will only happen if I get accepted into this study. If I do, they pay for flight, hotel, transportation to Pennsylvania and will also give you $200 per donation. So, we shall see. Honestly, I don't really want to fly clear across the country without Eric and Brandon, but at the same time, it would be nice to see if I can help anybody with having this study done. We shall see.
Not much is new in my world. We are just chugging along. Both Eric and I are working and Brandon goes to day care. He is switching, sadly, to a new smaller day care because come May his current amazing one will be closed on Fridays. We felt that for him, he needs consistency. So, we are switching. But, this new one will be amazing also. Rachelle is a wonderful woman and she has the same thought processes as Kourtney. So it shouldn't be too much of a change. Also, we met with an owner of an ABA therapy company that we really wanted and are getting ready to set up therapy for Brandon for the autism side of things. This company is great as they want to teach the parents and caregivers all the tools to help Brandon thrive and once they have done their job, they leave us to it. I love that! Most ABA therapy's want to come in for 30-40 hours a week. I am sorry, a child does not need to have therapy where it's like a job for them. It leaves no time for family time or down time. So, this company we have is great.
Oh! Another thing that is different is that I have printed out this blog up to a certain point to be read by different people to edit it and hopefully get it published. I have had many people say I should turn it into a book, so I have done the first step. I have also just finished, I believe, my children book. Next should be for my friend Bobbi to do the illustration. Hopefully! If she still wants to. She is an amazing artist. such talent with so many different crafty things. I would be honored to have her illustrate my book. I went with a book that depicts kids in a hospital and a magician puts a spell on two of the kids that turns them into a Pegasus and a Unicorn each not after they get their medicine. That's the basis of it. I am not going to give it all away. I need for people to read it.
Well, luckily my life is uneventful right now. Which means not much to write about. I only have about four more months of chemo. that would be about nine more sessions. Or is it eight now? I can't remember and I don't feel like getting my calendar out right now. All I know is that two years of maintenance chemotherapy is over in July and I shouldn't be on it anymore until the beast decides to try to torment me again. I can not wait to not be sick every other week. To maybe get some energy back. And just have my life back to almost normal. I will miss seeing all my nurse friends all the time. But I do know that they would be happy for me to not have to be there every other week also.
So, off to bed I go. Listening to Eric play his guitar for Brandon in his room. It's so calming. Good night everybody. And THANK YOU for reading my blog these last two years! Cheers!
Two year notification of blog
Here it is, two years later, and I write when something comes up worth mentioning. When something gets stuck in my head that pertains to my fight against this ugly beast called Multiple Myeloma. The most recent thing I am doing is looking into a plasma cell study where they will do a study on my plasma cells (well, duh) and see what common factors there are with other people with MM. Of course, that will only happen if I get accepted into this study. If I do, they pay for flight, hotel, transportation to Pennsylvania and will also give you $200 per donation. So, we shall see. Honestly, I don't really want to fly clear across the country without Eric and Brandon, but at the same time, it would be nice to see if I can help anybody with having this study done. We shall see.
Daddy and Brandon
Not much is new in my world. We are just chugging along. Both Eric and I are working and Brandon goes to day care. He is switching, sadly, to a new smaller day care because come May his current amazing one will be closed on Fridays. We felt that for him, he needs consistency. So, we are switching. But, this new one will be amazing also. Rachelle is a wonderful woman and she has the same thought processes as Kourtney. So it shouldn't be too much of a change. Also, we met with an owner of an ABA therapy company that we really wanted and are getting ready to set up therapy for Brandon for the autism side of things. This company is great as they want to teach the parents and caregivers all the tools to help Brandon thrive and once they have done their job, they leave us to it. I love that! Most ABA therapy's want to come in for 30-40 hours a week. I am sorry, a child does not need to have therapy where it's like a job for them. It leaves no time for family time or down time. So, this company we have is great.
Oh! Another thing that is different is that I have printed out this blog up to a certain point to be read by different people to edit it and hopefully get it published. I have had many people say I should turn it into a book, so I have done the first step. I have also just finished, I believe, my children book. Next should be for my friend Bobbi to do the illustration. Hopefully! If she still wants to. She is an amazing artist. such talent with so many different crafty things. I would be honored to have her illustrate my book. I went with a book that depicts kids in a hospital and a magician puts a spell on two of the kids that turns them into a Pegasus and a Unicorn each not after they get their medicine. That's the basis of it. I am not going to give it all away. I need for people to read it.
Rainy day fun
Well, luckily my life is uneventful right now. Which means not much to write about. I only have about four more months of chemo. that would be about nine more sessions. Or is it eight now? I can't remember and I don't feel like getting my calendar out right now. All I know is that two years of maintenance chemotherapy is over in July and I shouldn't be on it anymore until the beast decides to try to torment me again. I can not wait to not be sick every other week. To maybe get some energy back. And just have my life back to almost normal. I will miss seeing all my nurse friends all the time. But I do know that they would be happy for me to not have to be there every other week also.
Mommy and Brandon
So, off to bed I go. Listening to Eric play his guitar for Brandon in his room. It's so calming. Good night everybody. And THANK YOU for reading my blog these last two years! Cheers!
Saturday, February 24, 2018
Telling Brandon
Lately Eric and I have been talking about my cancer and regards to Brandon. Mainly, how are we going to tell him when the time comes and when is that time. He's so young and I am going to have this cancer for all of his life. Unless they find an actual cure for it in that time.
I was thinking a possible time, when he may understand, is when he is 5. What he will understand is that mommy is sick. I don't think he will understand what cancer is yet, to be honest. What we don't want is for anybody else, any other family or friends, to tell him that I am sick. We both believe that it should come from us. His parents. Especially me. Being the one who is sick.
One thing I will definitely do and I mentioned it to Eric, is talk to our medical Social Worker Lori. She is amazing. She has helped us through so much. From the initial diagnosis and what to expect to helping with financial situations and even work issues. She has been a God send and life saver where we have been so confused. Of course, like Dr H and Kellie and all the other nurses, they have been there and known Brandon since before he was born.
I'll be honest, as I always am here. I am nervous about telling him. About how he will process it. How he will react to the news. I wonder if he will cry, be angry, upset, scared. I wonder if he will be quiet or ask questions. With whatever happens. Whatever reaction or feelings he has, I just hope he knows this doesn't change the way I feel about him and I hope it doesn't change how he feels about me. I know when some people tell family they have cancer, some of the family walks away and distances themselves from that person. I don't know why it happens, but I think, and only think, it's because they are afraid. Afraid of getting too close and having something happen. The unspeakable. Death. All in all, I just hope that Brandon knows I am a fighter and will do what I can to make sure I am there for him for a long time. That I am not going to let this beast take me from watching him grow.
Another thing that has been bothering me is that I have a lack of energy. I think it's from treatment and the beast. I always thought that when I had a kid I would be involved more. Involved by getting down on the floor playing with him without hurting. To be able to run and chase after him. Play tag and chase. To even wrestle with him like daddy does. But, due to this ugly cancer, it has taken that part of my motherhood away from me. I can get on the floor and play Legos and cars with him, but not for a very long time as sitting on a hard floor hurts my body. I can run after him and chase him, but not for a long period of time because the bouncing up and down from running hurts my back and my compression fractures.
I am happy that what I can do is walk and hold his hand. Maybe not for a very long distance, but it is getting better...slowly. I love that he is a cuddly and affectionate little man. That is something I can do. I can lay on the couch or bed and cuddle with him while watching a favorite movie of his or even just listening to music. I can sit in my chair with him in my lap. Something I absolutely love is when he comes up to me, places his little hands on my face and looks me right in the eyes and says his gibberish. I have no clue what he is saying, but he does, and that's special. Sometimes he will end it with a sweet kiss or hug or both. If there is something good about this cancer, it is that it has taught me to slow down and really notice the small things. I believe Multiple Myeloma has helped me teach Brandon to be more caring. And it really shows in those special times where he is affectionate.
In the end, I am a fighter. I am going to fight for the rest of my life. I believe I have a long time to go. I believe I will be here to see Brandon graduate from high school and college. Meet his future wife and even be there to see him get married and to meet my grandchildren one day. If anything, I can still see all of that in the future. I may have this incurable cancer, but it doesn't have me. And no matter what, I know I have an amazing village of family and friends who are right there beside us helping us through everything and giving us all the love me need.
Monday, January 15, 2018
Hip Pain
You would think I'd be used to pain by now. I am almost 2 1/2 years into my battle with Multiple Myeloma and have dealt with back pain the whole time. Yes, I had a Vertebroplasty just over a year ago that took some of the pain away, but not all.
For the last few months (maybe 3 or so) I have had a new pain. Well, it's the same type of pain, just in a different spot. The new spot is in my hips. It started in my left hip and would come and go. But the last few days it's been constant. Now, just this weekend, it has started in my right hip also. In this hip it has been consistent. Not like the left hip where it was off and on. It has been consistent.
One thing MM does is "eat" away at your bones. That's how I got the compression fractures in my T12 and lumbar spine. I'm afraid that the MM is "Eating" away at my hips now. That scares me. Why? It means my hips would be getting fragile and could eventually break. That a wrong move could cause a bigger break than I have had in my spine. Being an almost 40 fairly active woman with a toddler, I don't want or need for my hips to break. I don't want a hip replacement. That's what would eventually happen. I would need a hip replacement. Unless there is another procedure that I don't know about yet. But from what I can tell, you break a hip and you need a replacement. I can't be out of commission for who knows how long after one, or two hip replacements.
Started writing this post last night. I wrote it on my phone. Then, I was going to write it this morning when I woke up. That's exactly what I am doing, all while my hips, both of them, are hurting. I've already taken my Morphine ER (extended release) pain medication this morning. Honestly, I have, for the last 6 months, been taking it once a day because I hadn't really been hurting. When I would wake up with pain I would then take it twice a day. But like I said, the pain has been mainly off and on. Until recently. This last week the pain has become more consistent. So, I have started back at taking my pain medication twice a day. Also, twice in the last week I have had to take my breakthrough pain medication of Dilaudid.
Maybe it's because I am back to work and moving a lot more. Maybe that is where the more pain is coming from. The fact that I am moving a lot more than usual. And honestly, I kinda hope that's it and it will go away and be normal again soon. That I will just have the typical back pain and the hip pain will go away. But I am also realistic and know that the hip pain has been there for a few months. So, yes, I'm scared. It would also mean that the MM is rearing it's ugly head again. But then my labs are looking good. I just don't know. And I am always going to worry. My life is full of worry knowing that I can not get rid of this cancer all together with a surgery like some other cancers.
Only time will tell what is going on. I have a message in to my Oncologist, Dr. H, but know that today is a holiday and so it will be another day before I hear anything from him. Ohhhhh the waiting game.
For the last few months (maybe 3 or so) I have had a new pain. Well, it's the same type of pain, just in a different spot. The new spot is in my hips. It started in my left hip and would come and go. But the last few days it's been constant. Now, just this weekend, it has started in my right hip also. In this hip it has been consistent. Not like the left hip where it was off and on. It has been consistent.
One thing MM does is "eat" away at your bones. That's how I got the compression fractures in my T12 and lumbar spine. I'm afraid that the MM is "Eating" away at my hips now. That scares me. Why? It means my hips would be getting fragile and could eventually break. That a wrong move could cause a bigger break than I have had in my spine. Being an almost 40 fairly active woman with a toddler, I don't want or need for my hips to break. I don't want a hip replacement. That's what would eventually happen. I would need a hip replacement. Unless there is another procedure that I don't know about yet. But from what I can tell, you break a hip and you need a replacement. I can't be out of commission for who knows how long after one, or two hip replacements.
Started writing this post last night. I wrote it on my phone. Then, I was going to write it this morning when I woke up. That's exactly what I am doing, all while my hips, both of them, are hurting. I've already taken my Morphine ER (extended release) pain medication this morning. Honestly, I have, for the last 6 months, been taking it once a day because I hadn't really been hurting. When I would wake up with pain I would then take it twice a day. But like I said, the pain has been mainly off and on. Until recently. This last week the pain has become more consistent. So, I have started back at taking my pain medication twice a day. Also, twice in the last week I have had to take my breakthrough pain medication of Dilaudid.
Maybe it's because I am back to work and moving a lot more. Maybe that is where the more pain is coming from. The fact that I am moving a lot more than usual. And honestly, I kinda hope that's it and it will go away and be normal again soon. That I will just have the typical back pain and the hip pain will go away. But I am also realistic and know that the hip pain has been there for a few months. So, yes, I'm scared. It would also mean that the MM is rearing it's ugly head again. But then my labs are looking good. I just don't know. And I am always going to worry. My life is full of worry knowing that I can not get rid of this cancer all together with a surgery like some other cancers.
Only time will tell what is going on. I have a message in to my Oncologist, Dr. H, but know that today is a holiday and so it will be another day before I hear anything from him. Ohhhhh the waiting game.
Monday, January 1, 2018
2017 In Review
Well, it's the beginning of a new year. 2017 is over and today was the first day of 2018. So much happened in 2017. I started the year working a temporary position with the Telecom unit for State Parks. It was only to last a year. It was a great spot for me to work at since I couldn't (and still can't) go back to dispatch yet. I was lucky enough to work with some amazing co-workers. Only three of us in the office on a daily basis and we had two others that would come in to help us about once or twice a week. Honestly, working with just a handful of people was amazing! Coming from working with about 10-15 people in dispatch. Most jobs have even more than that.
We started 2017 with a quick family trip to Southern California to visit my family and go to Disneyland. Brandon's first time. When we left, we left at about 4 or 5 in the morning. It was pouring down rain too. So much that it was hard to see out the windshield. We kept Brandon in his pajamas with the hopes he would just go back to sleep. Honestly, he was a great traveler. He fell back to sleep after about an hour or two on the road. Brandon started to get a little fussy about being in the car about 5 hours into the drive, but we were almost to our first destination. My great aunt Val and uncle Al's house in Northridge. It was great to see them and have them meet Brandon. My aunt Valerie and uncle Mike were there too along with my dad and brother with his family. We had lunch then everybody went their ways. Us going to Long Beach to my dads house with him. Of course, we had a stop at the beach for Brandon's first trip to the beach. He LOVED it! He kept trying to run into the water. We ended up having to take off his clothes because he was getting so wet and sitting down in the water. After we got to my dad's house we all settled in and everybody went to sleep really early. I think it was about 6:30 or 7 when we all went to bed. The next day was Disneyland. It was raining that day but it made for a great trip since there wasn't that many people at the park. Made going on the rides so much easier. We even met up with my friend Karen and her girls for a little visit and to go on some rides together before we all left for dinner. On the way back to my dad's house we stopped off at my step mom's so she could finally meet Brandon. It was a quick visit as we needed to get back to my dads house to sleep so we could wake up early to leave to go home the next day. Again, we left at 5am to miss traffic and this time Brandon was over the trip sooner than before. He was just tired of being in the car. We made it home in the early afternoon since it was raining still. All in all, our first family road trip of the year was a success!
February was uneventful until the end. We were in a car accident that ended up totaling our car. Our car we only had for less than a year. We were actually about a month shy of a year. It was a brand new teenage driver driving a friend home at night. She most likely wasn't paying attention and showing off for her friend. Which, that right there. Her driving with a friend in the car and no adult is illegal. The thing that really irked me and still does to this day is that she only got a warning. She should have lost her license. But the cop let her off. She obviously shouldn't be driving and her parents should have gotten a ticket or something too. But whatever.
The next few months went by pretty fast. We got some money from the accident and used it to have Eric's older boys come out for a month to visit. That was in June. It was so good to have them here and for them to meet Brandon in person (before it had only been on FaceTime) and they also got to celebrate my 1st REbirthday. June 6th marked one year since I got my transplant. WOOHOO!! I had been in complete response for a whole year. While the boys were here we did family pictures, went to a water park called Wake Island and to San Fransisco, Stanford and Pacifica. San Fransisco was on Fathers Day and we mainly went to Alcatraz. It was Brandon's first boat ride. He loved it. He loved watching the other boats on the water as we were on our way to Alcatraz and back to the shore. We stayed the night in Palo Alto so we were near Stanford for my 1 year follow up appointment with my transplant doctor. On that visit Dr W said everything was looking fabulous and that he didn't need to see me for a whole a year. No Stanford trip for a whole year felt amazing to hear. I love all the doctors and nurses there, but it takes up a whole day to go there and back for an hour at the Cancer Center. On the way home we hit traffic and unfortunately Eric ended up in a minor accident. To us, it was the motorcycles fault, but I guess no mater what, when a motorcycle is involved, it's the cars fault. Shitty, but nothing we can do about it. We had it taken care of. Eric ended up having to be towed home all the way from Oakland because the motorcycle popped his tire and then the spare got a flat after a short distance. Ugh! Not fun, but we all made it home. Later than we thought we would. It was bittersweet, but the boys had to go back home to Missouri just before 4th of July.
August came and Eric and I had a low key 4th wedding anniversary. We just made dinner at home and celebrated with Brandon. Then, two days later we celebrated my 39th birthday with a family and few friends dinner at The Spaghetti Factory. Since my cancer diagnosis, I want to celebrate my birthday even more, whether low key or party, because every year I am still here with this cancer, the better. The end of August brought on me stopping work for a few months due to treatment. Treatment was making me sick and we had to figure out why.
In September we celebrated Eric's birthday and that was pretty much it. It was nice to have a month where we didn't have much to do. Especially since chemo was making me sick more days than not it seemed.
October was a big month. First, Brandon turned 2. He had a little birthday party at day care where I made cupcakes for all the kids. He also got a super cool construction worker Lego set from Kourtney. He loved it! Then, my step brother Jeremy was getting married and originally we weren't going to be able to go. Then, my dad offered to pay for Brandon and myself to fly down for a few days for it. So, Brandon had his first ever plane ride. At the airport he was fine. But, it was getting on the plane that he didn't like. He had his own seat but was freaking out so much that he sat on my lap the whole flight. It was tough trying to navigate the airport in Long Beach by myself with everything I had for us. One of the pilots saw me struggling and helped me get to baggage claim. And luckily that was right next to where my dad was picking us up. We had a great trip down to Southern California again. We went to a park I grew up going to. We went to the beach again, where this time Brandon was a little more scared. Even in the bay portion of Long Beach where there were no waves. We also went to see grandma Susan (my step mom) and to the Aquarium of the Pacific. We went to Riverside to visit my brother and go swimming in his pool. And the wedding was beautiful. It was great to have all 4 of us kids together in one place again. Even if just for a night. And I have gained a new beautiful sister in law, Anna. Before we left, my friend Karen picked us up at my dads house and we went to lunch and the Lakewood mall that I grew up going to. Then, she dropped us off at the airport and helped me organize everything to make it easier to get through the airport and security. The best thing was actually wearing Brandon this time. Especially since about 10-15 minutes before we were to board he fell asleep. Making it easier to navigate getting on the plane. He slept in my arms and on my lap until about 5 minutes before we landed. When we landed and got off the plane it was great to be back with Eric. I couldn't wait to hug and kiss him. It was the first time, other than when I was hospitalized after my transplant, that we had been apart for a few days. It was hard, but also good for us I guess. Absence makes the heart grow fonder. The next thing was Halloween. We all dressed up as a family of scarecrows. It was great! And everybody that saw Brandon while trick or treating thought he was the cutest.
November came and we started to have issues with Eric's car after it got fixed. So much so that it was cheaper to get a new car than it was to fix it. So, after 10 years with his little "skate", he sold it to a friend and got a new car. A 4 door Accent instead of a 2 door hatchback Accent. I was also cleared to go back to working, just not to dispatch yet. So, the return to work person is searching for a "reasonable accommodation" position for me. In my opinion, it's taking too long. But I understand it's tough to find a position. Hopefully they find something temporary at least soon. My dad also came up to visit for Thanksgiving as usual and we missed having his friend Linda here also. But she had to work. Unfortunately, on Thanksgiving day I was feeling sick from chemo the day before and my dad wasn't feeling well from something else. So, poor Eric did most of the cooking. But dinner was still great and we enjoyed having my dad here as usual.
Then came December. Christmas month. Even though I wasn't working, we still had a good month. We decided to get a real tree this year but we wanted a small one. Originally we went to Apple Hill but they wanted $90 for a cut your own tree, tree. Forget that! We found what we wanted at Lowe's that night and brought it home and got it up. Actually, that was in November. The day after Thanksgiving. We also decided to make December as festive and Christmasy as possible. So, once or twice a week we would go out and drive around looking at lights. It was great because Brandon learned to say "so pretty" and would "ooooooo" at all the lights as we would drive by looking at them. The Saturday before Christmas we went to my brother and sister in law's house and met up with my mother and father in law also and made Christmas cookies. We made A LOT of cookies. Brandon didn't want to help, so all the boys (father in law, brother in law and Brandon) all went to the park to get some energy out of Brandon. It was a great day. Christmas Eve we had a visit with my aunt Jean and then Brandon had a late nap, so we couldn't go to Mass at the Catholic church light we wanted to. Instead, Eric went to the Mass at 10pm and Brandon and I stayed home since he needed to get to bed. Christmas morning we woke up and snuggled for a little bit as a family and then went down stairs to see what Santa brought. Brandon was spoiled, again, this year. We had started shopping early in the year and ended up with a lot of stuff. All of which he loves. We went to my brother and sister in laws for Christmas dinner and more presents and it was nice to have a festive Christmas with family. Brandon didn't have day care last week as she closed for the holiday so I spent the week with him. New Years was now here. As a family we just stayed home and all of us fell asleep early as we were exhausted.
We had some good things in 2017 and some bad. The bad I am glad to leave behind. Here's to hoping 2018 is better!
We started 2017 with a quick family trip to Southern California to visit my family and go to Disneyland. Brandon's first time. When we left, we left at about 4 or 5 in the morning. It was pouring down rain too. So much that it was hard to see out the windshield. We kept Brandon in his pajamas with the hopes he would just go back to sleep. Honestly, he was a great traveler. He fell back to sleep after about an hour or two on the road. Brandon started to get a little fussy about being in the car about 5 hours into the drive, but we were almost to our first destination. My great aunt Val and uncle Al's house in Northridge. It was great to see them and have them meet Brandon. My aunt Valerie and uncle Mike were there too along with my dad and brother with his family. We had lunch then everybody went their ways. Us going to Long Beach to my dads house with him. Of course, we had a stop at the beach for Brandon's first trip to the beach. He LOVED it! He kept trying to run into the water. We ended up having to take off his clothes because he was getting so wet and sitting down in the water. After we got to my dad's house we all settled in and everybody went to sleep really early. I think it was about 6:30 or 7 when we all went to bed. The next day was Disneyland. It was raining that day but it made for a great trip since there wasn't that many people at the park. Made going on the rides so much easier. We even met up with my friend Karen and her girls for a little visit and to go on some rides together before we all left for dinner. On the way back to my dad's house we stopped off at my step mom's so she could finally meet Brandon. It was a quick visit as we needed to get back to my dads house to sleep so we could wake up early to leave to go home the next day. Again, we left at 5am to miss traffic and this time Brandon was over the trip sooner than before. He was just tired of being in the car. We made it home in the early afternoon since it was raining still. All in all, our first family road trip of the year was a success!
February was uneventful until the end. We were in a car accident that ended up totaling our car. Our car we only had for less than a year. We were actually about a month shy of a year. It was a brand new teenage driver driving a friend home at night. She most likely wasn't paying attention and showing off for her friend. Which, that right there. Her driving with a friend in the car and no adult is illegal. The thing that really irked me and still does to this day is that she only got a warning. She should have lost her license. But the cop let her off. She obviously shouldn't be driving and her parents should have gotten a ticket or something too. But whatever.
The next few months went by pretty fast. We got some money from the accident and used it to have Eric's older boys come out for a month to visit. That was in June. It was so good to have them here and for them to meet Brandon in person (before it had only been on FaceTime) and they also got to celebrate my 1st REbirthday. June 6th marked one year since I got my transplant. WOOHOO!! I had been in complete response for a whole year. While the boys were here we did family pictures, went to a water park called Wake Island and to San Fransisco, Stanford and Pacifica. San Fransisco was on Fathers Day and we mainly went to Alcatraz. It was Brandon's first boat ride. He loved it. He loved watching the other boats on the water as we were on our way to Alcatraz and back to the shore. We stayed the night in Palo Alto so we were near Stanford for my 1 year follow up appointment with my transplant doctor. On that visit Dr W said everything was looking fabulous and that he didn't need to see me for a whole a year. No Stanford trip for a whole year felt amazing to hear. I love all the doctors and nurses there, but it takes up a whole day to go there and back for an hour at the Cancer Center. On the way home we hit traffic and unfortunately Eric ended up in a minor accident. To us, it was the motorcycles fault, but I guess no mater what, when a motorcycle is involved, it's the cars fault. Shitty, but nothing we can do about it. We had it taken care of. Eric ended up having to be towed home all the way from Oakland because the motorcycle popped his tire and then the spare got a flat after a short distance. Ugh! Not fun, but we all made it home. Later than we thought we would. It was bittersweet, but the boys had to go back home to Missouri just before 4th of July.
August came and Eric and I had a low key 4th wedding anniversary. We just made dinner at home and celebrated with Brandon. Then, two days later we celebrated my 39th birthday with a family and few friends dinner at The Spaghetti Factory. Since my cancer diagnosis, I want to celebrate my birthday even more, whether low key or party, because every year I am still here with this cancer, the better. The end of August brought on me stopping work for a few months due to treatment. Treatment was making me sick and we had to figure out why.
In September we celebrated Eric's birthday and that was pretty much it. It was nice to have a month where we didn't have much to do. Especially since chemo was making me sick more days than not it seemed.
October was a big month. First, Brandon turned 2. He had a little birthday party at day care where I made cupcakes for all the kids. He also got a super cool construction worker Lego set from Kourtney. He loved it! Then, my step brother Jeremy was getting married and originally we weren't going to be able to go. Then, my dad offered to pay for Brandon and myself to fly down for a few days for it. So, Brandon had his first ever plane ride. At the airport he was fine. But, it was getting on the plane that he didn't like. He had his own seat but was freaking out so much that he sat on my lap the whole flight. It was tough trying to navigate the airport in Long Beach by myself with everything I had for us. One of the pilots saw me struggling and helped me get to baggage claim. And luckily that was right next to where my dad was picking us up. We had a great trip down to Southern California again. We went to a park I grew up going to. We went to the beach again, where this time Brandon was a little more scared. Even in the bay portion of Long Beach where there were no waves. We also went to see grandma Susan (my step mom) and to the Aquarium of the Pacific. We went to Riverside to visit my brother and go swimming in his pool. And the wedding was beautiful. It was great to have all 4 of us kids together in one place again. Even if just for a night. And I have gained a new beautiful sister in law, Anna. Before we left, my friend Karen picked us up at my dads house and we went to lunch and the Lakewood mall that I grew up going to. Then, she dropped us off at the airport and helped me organize everything to make it easier to get through the airport and security. The best thing was actually wearing Brandon this time. Especially since about 10-15 minutes before we were to board he fell asleep. Making it easier to navigate getting on the plane. He slept in my arms and on my lap until about 5 minutes before we landed. When we landed and got off the plane it was great to be back with Eric. I couldn't wait to hug and kiss him. It was the first time, other than when I was hospitalized after my transplant, that we had been apart for a few days. It was hard, but also good for us I guess. Absence makes the heart grow fonder. The next thing was Halloween. We all dressed up as a family of scarecrows. It was great! And everybody that saw Brandon while trick or treating thought he was the cutest.
November came and we started to have issues with Eric's car after it got fixed. So much so that it was cheaper to get a new car than it was to fix it. So, after 10 years with his little "skate", he sold it to a friend and got a new car. A 4 door Accent instead of a 2 door hatchback Accent. I was also cleared to go back to working, just not to dispatch yet. So, the return to work person is searching for a "reasonable accommodation" position for me. In my opinion, it's taking too long. But I understand it's tough to find a position. Hopefully they find something temporary at least soon. My dad also came up to visit for Thanksgiving as usual and we missed having his friend Linda here also. But she had to work. Unfortunately, on Thanksgiving day I was feeling sick from chemo the day before and my dad wasn't feeling well from something else. So, poor Eric did most of the cooking. But dinner was still great and we enjoyed having my dad here as usual.
Then came December. Christmas month. Even though I wasn't working, we still had a good month. We decided to get a real tree this year but we wanted a small one. Originally we went to Apple Hill but they wanted $90 for a cut your own tree, tree. Forget that! We found what we wanted at Lowe's that night and brought it home and got it up. Actually, that was in November. The day after Thanksgiving. We also decided to make December as festive and Christmasy as possible. So, once or twice a week we would go out and drive around looking at lights. It was great because Brandon learned to say "so pretty" and would "ooooooo" at all the lights as we would drive by looking at them. The Saturday before Christmas we went to my brother and sister in law's house and met up with my mother and father in law also and made Christmas cookies. We made A LOT of cookies. Brandon didn't want to help, so all the boys (father in law, brother in law and Brandon) all went to the park to get some energy out of Brandon. It was a great day. Christmas Eve we had a visit with my aunt Jean and then Brandon had a late nap, so we couldn't go to Mass at the Catholic church light we wanted to. Instead, Eric went to the Mass at 10pm and Brandon and I stayed home since he needed to get to bed. Christmas morning we woke up and snuggled for a little bit as a family and then went down stairs to see what Santa brought. Brandon was spoiled, again, this year. We had started shopping early in the year and ended up with a lot of stuff. All of which he loves. We went to my brother and sister in laws for Christmas dinner and more presents and it was nice to have a festive Christmas with family. Brandon didn't have day care last week as she closed for the holiday so I spent the week with him. New Years was now here. As a family we just stayed home and all of us fell asleep early as we were exhausted.
We had some good things in 2017 and some bad. The bad I am glad to leave behind. Here's to hoping 2018 is better!
Friday, November 17, 2017
ASD Evaluation & Diagnosis
The last day has been hard for me. Nothing to do with my cancer. This is about Brandon. A little back story. He has delayed speech. Before he started speech therapy back in October he was only saying maybe a handful of words. And only one phrase. That phrase was "Bye daddy". Some of the words he was saying were "dada, mama, hi, bye, and Lua (for Kahlua)". In order to be speech evaluated through Kaiser, the child needs to go through an ASD (Autism Spectrum Disorder) Evaluation. Well, even though we already have the speech therapy through Alta Regional, we still are going through Kaiser to have it documented. Yesterday was Brandon's ASD Evaluation.
The ASD Evaluation is a 4 1/2 to 5 hour process of play base testing and then an interview with the parents. Unfortunately Eric couldn't go. His boss wouldn't let him have the day off as a trade. He was trying to trade to work the night shift instead, but as I think about it, I think it was a no because he had to be back to work today at 6:30am. Anyways, we got to the center a little late because it took FOREVER to get there it seemed. Mainly because there is no direct route to the location of the center. No freeways straight through. They would take us way around, so, surface streets it was.
This was the first time I saw Brandon be shy around anybody when he first met them. He was standoffish with the clinical psychologist. But, he eventually warmed up to her...with a little bit of my help. We went into a room where there was a one way mirror. People could sit in the observation room without the child to see. The first evaluation was the cognitive functioning evaluation. What that entailed was giving Brandon a puzzle of sorts where he was to put the different shaped blocks into the right spot. Also, how he deals with getting a cheerio out of a bottle and things like that. Brandon did amazingly. He was quick to putting the blocks in the right spot without any hesitation. Same went with the cheerio in the bottle. On that, he tested in the average range. I had no doubts about it at all.
The next phase, after we had a 10 minute break, was the ADOS-2 and DSM-5 diagnostic impression. This was all play based while the clinical psychologist from the first evaluation and another observed him doing different things. During this time, Brandon didn't want to play with the doll, which I already knew he wouldn't and mentioned it to the clinical psychologist when we first got in the room that he wouldn't. He just doesn't like dolls or stuffed animals. But they used bathing the baby as a play evaluation. Brandon was more interested in how the bathtub worked. He was taking it apart and putting it together. He was also interested in the door to the room. Mainly the door handle. I can see how he was interested in it since we don't have those handles at home and you could lock it and then unlock it by turning the handle. It was fun. Like I said, it was all play based. So there were all different kinds of toys on the ground also. He played a little with the blocks, the big dump truck and the cars. Leaving the baby doll and purse alone. He's a total boy. It's not for a lack of trying with dolls or other girly things. He just prefers the "typical" boy toys.
After that part was over we had a 30 minute break in which I opted to stay in that room and I put music on for Brandon and we danced and chased each other. Then it was time for the parent interview. So, the clinical psychologist asked me questions about Brandon and I answered them. Everything she asked I knew except for the ones about interacting with other kids. I know he does at day care and I have seen him a few times with other kids at the park and his cousin more recently. He interacts with them. He plays with them. Sometimes he wants to be a loaner. Shoot, I'm an adult and I don't blame that. I feel like being a lone at times also. While she was asking me the questions, Brandon got to run around and play with some toys and have snacks.
When that portion was done, there was a five minute break and then she came back in to give us the preliminary results. She sat down and mentioned these are just preliminary results and that the full report would be available and sent to us in a month. She said that the preliminary results is that his cognitive is average. He is right where he should be. Then, she said the results I was NOT expecting. She said that Brandon was preliminarily on the moderate to severe range for Autism. I was in shock! My happy, outgoing, fun, loving little boy was supposedly moderate to severe on the spectrum? There is no way! Maybe closer to mild to moderate but not moderate to severe. I broke down. I cried. Not that it's such a horrible thing to be on the spectrum. Shoot, my husband is on the spectrum. It's the wording that was used and the results. What do they expect when the child has been teething (2 year molars are coming in) and is up in the middle of the night because of it and he had to be up earlier than usual. He isn't going to want to do some of the things they expected him to do.
Once home, I let Eric know what happened and also Brandon day care provider. She helped me a little by letting me know that early intervention is key and that there was another kid in day care that was just diagnosed earlier this year the same way and also through Kaiser. Once I heard from Eric and when I picked him up last night from work I was able to explain to him everything that went on and tell him what the clinical psychologist said. He too was dumbfounded by the results. Neither of us think he is moderate to severe. When I hear that, I think of his son Benjamin and a friends son. I also thought to what two of Eric's older boys say. They hate school. They hate it because they are picked on because they are on the spectrum. I was already nervous (years early) about school for Brandon because of the bullies out there among the other things like school shootings which have become almost normal now. I just can't believe he could possibly be that far on the spectrum. Not my happy go lucky boy. We both told our parents and got the same reactions that we had/have.
This morning, when I dropped Brandon off at day care I was able to talk to his provider face to face about it. She said she was talking to another friend who's son is older than Brandon but was also diagnosed the same way and also through Kaiser. He was diagnosed at 18 months with the same thing. Moderate to severe. She told her that it's just the wording they use to get the assistance and help the child will need. I can understand that, but they should have explained that to me when she was telling me the preliminary results. Instead of letting me sit there balling my eyes out basically over making me think that because he's a delayed speaker and doesn't do certain things the way they want him to that he's moderate to severe on the spectrum. I think they need to work on how they tell parents results.
I'm going to wait until we get the full report, but eventually I want to get books on how to HELP Brandon succeed and feel confident and not feel like he's dumb. To help him not be picked on in school over this diagnosis. We will eventually go to classes on what to do and how to help him. He will get another therapist that will be able to work with him with these things. Things will be ok, it's just the initial shock when you do not see it. When so many people around him DO NOT see it. Just one more stressor on me that I really do not need. This week we will have labs done for him and get a genetic testing done also. Things will be ok. We just need to figure out our next steps.
The ASD Evaluation is a 4 1/2 to 5 hour process of play base testing and then an interview with the parents. Unfortunately Eric couldn't go. His boss wouldn't let him have the day off as a trade. He was trying to trade to work the night shift instead, but as I think about it, I think it was a no because he had to be back to work today at 6:30am. Anyways, we got to the center a little late because it took FOREVER to get there it seemed. Mainly because there is no direct route to the location of the center. No freeways straight through. They would take us way around, so, surface streets it was.
This was the first time I saw Brandon be shy around anybody when he first met them. He was standoffish with the clinical psychologist. But, he eventually warmed up to her...with a little bit of my help. We went into a room where there was a one way mirror. People could sit in the observation room without the child to see. The first evaluation was the cognitive functioning evaluation. What that entailed was giving Brandon a puzzle of sorts where he was to put the different shaped blocks into the right spot. Also, how he deals with getting a cheerio out of a bottle and things like that. Brandon did amazingly. He was quick to putting the blocks in the right spot without any hesitation. Same went with the cheerio in the bottle. On that, he tested in the average range. I had no doubts about it at all.
The next phase, after we had a 10 minute break, was the ADOS-2 and DSM-5 diagnostic impression. This was all play based while the clinical psychologist from the first evaluation and another observed him doing different things. During this time, Brandon didn't want to play with the doll, which I already knew he wouldn't and mentioned it to the clinical psychologist when we first got in the room that he wouldn't. He just doesn't like dolls or stuffed animals. But they used bathing the baby as a play evaluation. Brandon was more interested in how the bathtub worked. He was taking it apart and putting it together. He was also interested in the door to the room. Mainly the door handle. I can see how he was interested in it since we don't have those handles at home and you could lock it and then unlock it by turning the handle. It was fun. Like I said, it was all play based. So there were all different kinds of toys on the ground also. He played a little with the blocks, the big dump truck and the cars. Leaving the baby doll and purse alone. He's a total boy. It's not for a lack of trying with dolls or other girly things. He just prefers the "typical" boy toys.
After that part was over we had a 30 minute break in which I opted to stay in that room and I put music on for Brandon and we danced and chased each other. Then it was time for the parent interview. So, the clinical psychologist asked me questions about Brandon and I answered them. Everything she asked I knew except for the ones about interacting with other kids. I know he does at day care and I have seen him a few times with other kids at the park and his cousin more recently. He interacts with them. He plays with them. Sometimes he wants to be a loaner. Shoot, I'm an adult and I don't blame that. I feel like being a lone at times also. While she was asking me the questions, Brandon got to run around and play with some toys and have snacks.
When that portion was done, there was a five minute break and then she came back in to give us the preliminary results. She sat down and mentioned these are just preliminary results and that the full report would be available and sent to us in a month. She said that the preliminary results is that his cognitive is average. He is right where he should be. Then, she said the results I was NOT expecting. She said that Brandon was preliminarily on the moderate to severe range for Autism. I was in shock! My happy, outgoing, fun, loving little boy was supposedly moderate to severe on the spectrum? There is no way! Maybe closer to mild to moderate but not moderate to severe. I broke down. I cried. Not that it's such a horrible thing to be on the spectrum. Shoot, my husband is on the spectrum. It's the wording that was used and the results. What do they expect when the child has been teething (2 year molars are coming in) and is up in the middle of the night because of it and he had to be up earlier than usual. He isn't going to want to do some of the things they expected him to do.
Once home, I let Eric know what happened and also Brandon day care provider. She helped me a little by letting me know that early intervention is key and that there was another kid in day care that was just diagnosed earlier this year the same way and also through Kaiser. Once I heard from Eric and when I picked him up last night from work I was able to explain to him everything that went on and tell him what the clinical psychologist said. He too was dumbfounded by the results. Neither of us think he is moderate to severe. When I hear that, I think of his son Benjamin and a friends son. I also thought to what two of Eric's older boys say. They hate school. They hate it because they are picked on because they are on the spectrum. I was already nervous (years early) about school for Brandon because of the bullies out there among the other things like school shootings which have become almost normal now. I just can't believe he could possibly be that far on the spectrum. Not my happy go lucky boy. We both told our parents and got the same reactions that we had/have.
This morning, when I dropped Brandon off at day care I was able to talk to his provider face to face about it. She said she was talking to another friend who's son is older than Brandon but was also diagnosed the same way and also through Kaiser. He was diagnosed at 18 months with the same thing. Moderate to severe. She told her that it's just the wording they use to get the assistance and help the child will need. I can understand that, but they should have explained that to me when she was telling me the preliminary results. Instead of letting me sit there balling my eyes out basically over making me think that because he's a delayed speaker and doesn't do certain things the way they want him to that he's moderate to severe on the spectrum. I think they need to work on how they tell parents results.
I'm going to wait until we get the full report, but eventually I want to get books on how to HELP Brandon succeed and feel confident and not feel like he's dumb. To help him not be picked on in school over this diagnosis. We will eventually go to classes on what to do and how to help him. He will get another therapist that will be able to work with him with these things. Things will be ok, it's just the initial shock when you do not see it. When so many people around him DO NOT see it. Just one more stressor on me that I really do not need. This week we will have labs done for him and get a genetic testing done also. Things will be ok. We just need to figure out our next steps.
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