The anticipation is almost unbearable when it comes to learning what is happening with your child. Each nurse that we have had, even though so caring, had a look of concern that mom's give one another. Basically saying "I am so sorry, but oh how glad I am this is not my child".
In my last post I just left it with the diagnosis, because after that diagnosis there is little left to say. So much more happened in between in which I will go back and talk about another day.
Once you have the diagnosis, which you kinda already have a gut feeling about, now you go into hyper drive of information overload. I consumed every website, blog, book, or pamphlet the hospital had trying to learn about what I could be doing to make this easier for Kagan.
You find something that you can do to help --- change the sheets on the bed, go get your child food, play games, clean up the room, update family and walk over about every minute your teenage son will let you and give him a kiss. There is so little you can prepare him for because you have not walked in his shoes.
I don't know a way to describe the feelings of being a parent in this situation.
So today, on day 8 of being in the hospital we are patiently waiting to start chemo. They expected us to start at 9pm but the urine test they had to take showed we needed a little more hydration. So the IV pump continues and we await the chemo that has now been "delivered to the floor".
Nervously sitting and waiting for the journey to begin. Praying the medicine will work but praying for now bad side effects. Our son, a little nervous himself, just trusting in the Lord for strength. Little else matters in the world at this moment.....Just make my babv better.
In a brief moment our lives were changed forever. Our precious and amazing 15 year old son received a diagnosis of Hodgkin's Lymphoma and our new journey begins. A journey with him finding victory over this "C" word. This blog is our journey for our family and friends to share in Kagan's fight.
Wednesday, May 30, 2012
Tuesday, May 29, 2012
Where it all Began
Where it all began....
Kagan, our 15 year old son, had complained of a swollen lymph node on his neck a few months ago. While we were concerned, we were not over reacting because our younger son had something similar when he was three years old. Just sometimes when you get sick, this is what happens.
A call to the pediatrician was made and very little worry or concern was expressed. After setting out an appointment for a few weeks, we noticed the neck was swelling more and more. Also, he had just began to sleep constantly. Cat naps, long naps after school, and early bed times. Things just did not feel right.
On April 30, 2012 we were at the pediatricians office having Kagan tested for a variety of things that could be wrong again. At about 6 am that morning, I searched over WebMd and noticed a variety of illness associated with this kind of swelling. I went from being overly scared and panic filled to more assured after we met with the doctor at 8 am. She decided to run some test and determined that Kagan's extreme fatigue and swollen lymph nodes were due to a recent "mono" illness. I even joked on my facebook post that morning that you should never read WebMd before a trip to the doctor because you would be scared to death.
We were very relieved to say the least with the diagnosis. Mono was something Kagan could handle. Something that would just run it's illness and he would be back to normal soon. Since there is no cure for mono, there was nothing Kagan could take except some steroids to help the swelling of the lymph nodes to go down.
I had missed work, which I rarely ever do, so as in my nature I rushed into the office and let Kagan go home to sleep and rest.
Over the next few days, his symptoms just seem to be more concerning. The doctor had said that sometimes lymph nodes could swell and never go down but his were growing. Then they had some pain associated with the growth that he had never had before.
I called the doctor and we started the blood work to see what else was going on. The doctor did not seem overly concerned about his illness but wanted to take every precaution needed. As blood work was ordered and beginning to come back there still was nothing overly alarming about the results. They ordered some antibiotics just in case there was an infection they could not see.
Days went by and I called the nurse and told her, I was not sure what it was but something just was not right. All the test were stating he should be getting better but he wasn't. To check on Kagan (and appease a mom), they ordered more blood work.
Then with some suspicious, yet still not alarming, information we were to get an ultra sound completed. Results were indicative of mono and made a slight mention of other possibilities --- recommending x-rays.
So, we went back to the doctor for labs, off to get xrays, and to an ENT to doctor to see what was wrong with Kagan's neck. I was fully expecting to having some sort of procedure to aspirate the swelling or the treat the swelling but what come next was NEVER what I imagined.
The ENT doctor saw us that afternoon around 3:30 PM. By the time we reached his office he looked at Kagan for less than 30 seconds and then wheeled his chair over to me with a fax from my pediatricians office. The xray diagnostics were back and the word "possible lymphoma" was glaring at me from the papers he showed me.
He quickly left to make calls to get us into THAT DAY (within the next 10 minutes to be exact) to a pediatric oncologist.........The words, the fear, the gut wrenching feeling when everything started to happen at warp speed.
At 4:00, the day before a holiday weekend, the oncologist agreed to see us. We went to the office and he sat down with us and started a discussion that just was fully never expected --- a tidal wave of emotions were coming forth.
By 4:45 we were admitted to St. Joseph's Children's Hospital. This is where our journey has began. In a hospital with possibilities of "WHAT" was wrong, that "cancer word" hanging over our heads and then came the process.
- Blood work
- More Xrays
- Cat Scan
- Neck Biopsy
- Bone Marrow/Bone Biopsy
- Echo Cardiograms
- Pulmonary Function Test
- Pic Line
- More Blood Work
- More XRays
- More Cat Scans
- Pet Scans
- Waiting, Waiting, Waiting, Waiting.
Kagan, our 15 year old son, had complained of a swollen lymph node on his neck a few months ago. While we were concerned, we were not over reacting because our younger son had something similar when he was three years old. Just sometimes when you get sick, this is what happens.
A call to the pediatrician was made and very little worry or concern was expressed. After setting out an appointment for a few weeks, we noticed the neck was swelling more and more. Also, he had just began to sleep constantly. Cat naps, long naps after school, and early bed times. Things just did not feel right.
On April 30, 2012 we were at the pediatricians office having Kagan tested for a variety of things that could be wrong again. At about 6 am that morning, I searched over WebMd and noticed a variety of illness associated with this kind of swelling. I went from being overly scared and panic filled to more assured after we met with the doctor at 8 am. She decided to run some test and determined that Kagan's extreme fatigue and swollen lymph nodes were due to a recent "mono" illness. I even joked on my facebook post that morning that you should never read WebMd before a trip to the doctor because you would be scared to death.
We were very relieved to say the least with the diagnosis. Mono was something Kagan could handle. Something that would just run it's illness and he would be back to normal soon. Since there is no cure for mono, there was nothing Kagan could take except some steroids to help the swelling of the lymph nodes to go down.
I had missed work, which I rarely ever do, so as in my nature I rushed into the office and let Kagan go home to sleep and rest.
Over the next few days, his symptoms just seem to be more concerning. The doctor had said that sometimes lymph nodes could swell and never go down but his were growing. Then they had some pain associated with the growth that he had never had before.
I called the doctor and we started the blood work to see what else was going on. The doctor did not seem overly concerned about his illness but wanted to take every precaution needed. As blood work was ordered and beginning to come back there still was nothing overly alarming about the results. They ordered some antibiotics just in case there was an infection they could not see.
Days went by and I called the nurse and told her, I was not sure what it was but something just was not right. All the test were stating he should be getting better but he wasn't. To check on Kagan (and appease a mom), they ordered more blood work.
Then with some suspicious, yet still not alarming, information we were to get an ultra sound completed. Results were indicative of mono and made a slight mention of other possibilities --- recommending x-rays.
So, we went back to the doctor for labs, off to get xrays, and to an ENT to doctor to see what was wrong with Kagan's neck. I was fully expecting to having some sort of procedure to aspirate the swelling or the treat the swelling but what come next was NEVER what I imagined.
The ENT doctor saw us that afternoon around 3:30 PM. By the time we reached his office he looked at Kagan for less than 30 seconds and then wheeled his chair over to me with a fax from my pediatricians office. The xray diagnostics were back and the word "possible lymphoma" was glaring at me from the papers he showed me.
He quickly left to make calls to get us into THAT DAY (within the next 10 minutes to be exact) to a pediatric oncologist.........The words, the fear, the gut wrenching feeling when everything started to happen at warp speed.
At 4:00, the day before a holiday weekend, the oncologist agreed to see us. We went to the office and he sat down with us and started a discussion that just was fully never expected --- a tidal wave of emotions were coming forth.
By 4:45 we were admitted to St. Joseph's Children's Hospital. This is where our journey has began. In a hospital with possibilities of "WHAT" was wrong, that "cancer word" hanging over our heads and then came the process.
- Blood work
- More Xrays
- Cat Scan
- Neck Biopsy
- Bone Marrow/Bone Biopsy
- Echo Cardiograms
- Pulmonary Function Test
- Pic Line
- More Blood Work
- More XRays
- More Cat Scans
- Pet Scans
- Waiting, Waiting, Waiting, Waiting.
HODGKIN'S LYMPHOMA
Kagan's Battle
This is Kagan!
Kagan is the most amazing young man. I don't say that because I am his mom, I say that because I know it to be so true.
To explain Kagan is pretty easy. He is quite, shy, funny, witty, caring, loving, giving, selfless and also kind hearted. He is reserved but only until he finds his place. He has a old soul, which we have said for a very long time. He is wise beyond his years. He is the oldest in our family and such a loving brother.
This is his battle! This is fight! And I, his mom, will be his biggest cheerleader and his biggest fan.
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