Today Kagan, Kade and Kenadee started back to school. Kagan in the 10th, Kade the 9th, and Kenadaee the 7th. It is so hard to believe how quickly they grow up and move on.
We had a decision to help Kagan do homebound school, virtual school or regular school. We decided that we would opt for regular school until we wait to see what comes next. Obviously, he will have some more stuff to go through but the school has assured me that they will work with us around this.
I thought it was best for Kagan to begin to get some normalcy into life.
He will officially have all his test re-ran on September 4th. It will be such a relief to see what is happening and to be able to make plans. Until then,I will be patient.
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.
Tuesday, August 21, 2012
Saturday, August 18, 2012
Support Systems
This week I got some literature from the SuperSibs! program that really got me to thinking.
SuperSibs is a program that offers literature and support to the siblings of kids with cancer. Obviously, as most people know, the whole family is impacted by dealing with any illness that causes all the attention to be focused in one direction. Rightfully so, the child dealing with the illness needs extra attention, parent's time at the hospital and resources from the family. It is a great program and I can see where cases that are more severe than our families it must be a lifeline for those children.
We struggled to keep Kade and Kenadee's lives as normal as possible during Kagan's journey. The day he went to the hospital I decided that everything was going to remain the same for them and I am so glad that I did. It took much effort from Kaleb, our family and friends to keep things going but everyone offered to pitch in and help. Luckily we were able to manage most of it on our own but the outpouring of love towards the kids and offers to help with them gave us a peace of mind.
So that brings me to what I was reading in the SuperSibs! packet. The literature reminded me how lucky I am that Kade and Kenadee are who they are too. These two kiddos helped me out so much with picking up extra chores at home, taking more turns with walking dogs, making phone calls for me and then the one part that was even harder - they relayed the news of their brother to Kagan's friends, teachers, church friends, cousins, etc. I thank them both for the never ending support of their brother and for taking on that burden that this blog was suppose to alleviate for them somewhat.
I read this packet of information right before Thursday and Friday's open houses. We had teachers, students and school officials all come up and offer support and their concern for our family. Kenadee's culinary class teacher last year made meals for our family this summer and has offered concern for Kenadee on several occassions. (Thank you very much Mr. Artz and Culinary Club!). I realized at this point that as they go back to school all three kids have a burden of answers to carry back with them.
I appreciate people who invested time with Kade and Kenadee. They both have some very good friends with great parents who will never know how much their stepping up with my kids have meant to me.
Simply, put I know that I have talked about how the support of my parents (who again I will tell you are just the most awesome people in the world) and Kaleb's mom (who is such a blessing to all of us), our friends and Kagan's support group of friends. I just know that I have yet to thank all those who stood up to be there for Kade and Kenadee and it felt like time.
Thank you God for support systems that make us stronger than we are!
SuperSibs is a program that offers literature and support to the siblings of kids with cancer. Obviously, as most people know, the whole family is impacted by dealing with any illness that causes all the attention to be focused in one direction. Rightfully so, the child dealing with the illness needs extra attention, parent's time at the hospital and resources from the family. It is a great program and I can see where cases that are more severe than our families it must be a lifeline for those children.
We struggled to keep Kade and Kenadee's lives as normal as possible during Kagan's journey. The day he went to the hospital I decided that everything was going to remain the same for them and I am so glad that I did. It took much effort from Kaleb, our family and friends to keep things going but everyone offered to pitch in and help. Luckily we were able to manage most of it on our own but the outpouring of love towards the kids and offers to help with them gave us a peace of mind.
So that brings me to what I was reading in the SuperSibs! packet. The literature reminded me how lucky I am that Kade and Kenadee are who they are too. These two kiddos helped me out so much with picking up extra chores at home, taking more turns with walking dogs, making phone calls for me and then the one part that was even harder - they relayed the news of their brother to Kagan's friends, teachers, church friends, cousins, etc. I thank them both for the never ending support of their brother and for taking on that burden that this blog was suppose to alleviate for them somewhat.
I read this packet of information right before Thursday and Friday's open houses. We had teachers, students and school officials all come up and offer support and their concern for our family. Kenadee's culinary class teacher last year made meals for our family this summer and has offered concern for Kenadee on several occassions. (Thank you very much Mr. Artz and Culinary Club!). I realized at this point that as they go back to school all three kids have a burden of answers to carry back with them.
I appreciate people who invested time with Kade and Kenadee. They both have some very good friends with great parents who will never know how much their stepping up with my kids have meant to me.
Simply, put I know that I have talked about how the support of my parents (who again I will tell you are just the most awesome people in the world) and Kaleb's mom (who is such a blessing to all of us), our friends and Kagan's support group of friends. I just know that I have yet to thank all those who stood up to be there for Kade and Kenadee and it felt like time.
Thank you God for support systems that make us stronger than we are!
Wednesday, August 15, 2012
Birthday Boy!
I type...
I erase...
I type again.
Today is a day that I am full of emotions that I am attempting to put into words. We celebrated Kagan's 16 birthday today and my heart is overflowing with words and emotions but my mind can't seem to make a coherent statement on this page.
Turning 16 is a milestone in everyone's life. I remember turning 16 like it was yesterday. It is when you know that adulthood is right around the corner because it is the next big milestone ahead. This caused a few tears for me today but also a few big smiles thinking about all that Kagan has ahead of him.
We discovered today the interesting facts of things that happened on August 15th! The start of Woodstock, the discovery that there was a solar system other than ours, the release of the Crisco by Proctor and Gamble and the dentist chair. Yet, I know that on August 15th that the birth of Kagan Ray Moss was a blessing beyond all discoveries of that day.
We did not get Kagan a car. It was a very (VERY) hard decision not to. There are several reasons why we didn't but mainly it would have been irresponsible of us to go into any debt when the future still holds a lot of unknowns. (This is me being very reasonable and mature and I hate it.) The only comfort is that he will not actually have a driver's licenses for another month and for the foreseeable future he will not be out driving without me anyways.
So it is something he can look forward to in the future.
These little things are the hardest part for me. Was getting Kagan car really that important? No, it was not. It is lavish and not a necessary at this point. It is just one of those things that cancer stopped and I get really angry when those things come up.
I also was tearful that when we woke up that stupid culprit decided to grow from a jelly bean back into a large shooter marble! There is some other areas that seem to be swelling on the neck but we will hold our breath and wait until tomorrow to see what is up with that when go to the doctor.
So for Kagan's birthday here are my 16 thoughts for you.
1. Kagan, I wish that the rest of your life from 16 forward is lived with the knowledge that life is precious. Unwrap the gift of each day full of expectation of joy, laughter and contentment.
2. Always know that YOU are worthy for EVERYTHING that your heart desires. I know this is true because your heart is pure and good and therefore all things that you heart is set on is within your reach.
3. Begin each day with prayer and end each day with prayer. Surrender the day to what God will bring and then each night thank Him for what He did.
4. Know that true love is never created. It is found and then nurtured to blossom into what it will be.
5. Never be afraid to fight for what is right. You will feel it in the depths of yourself and when you know it right you will never regret the bruises or pain it brings.
6. Aspire to be anything you want. Don't put a boundary on your dreams for your future for it is yours to live.
7. Don't ever live in fear! If you can be afraid of it then you can also conquer it.
8. Build bonds with your brother and sister every day because there will be one day when they will be the only ones who can understand exactly where you have come from.
9. Fill your life full of people but make sure that your most in depth thoughts and personal life are shared only with a few precious ones.
10. It is your story to tell but you get to tell it when you are ready. No a second more or less. Never feel ashamed to say when is the right time.
11. Know that cancer may have stolen this summer but Chemo gifted you being able to have many more.
12. For every negative you have make sure that you think of five positives.
13. SMILE!
14. Dig into God's word. Listen to wise teachers, us, pastors but know that God has written the word for YOU and there are treasures within the pages that only you can find. It is not a text book. It is God's love letter to you.
15. Give people a chance to know the real you. You might be surprised who they turn out to be when you give them an opportunity to show their real selves to you.
16. You are loved and cherished. I am sorry for the times I am wrong or when I don't know what to do. I am sorry when you deserve more than I can be. Yet, I can promise you that everyday in the past and each day in the future I will continue to strive to be the best mom you can have. When you need me, I will be there. For today I have to be your mom but I can't wait for the days to be your friend too!
I erase...
I type again.
Today is a day that I am full of emotions that I am attempting to put into words. We celebrated Kagan's 16 birthday today and my heart is overflowing with words and emotions but my mind can't seem to make a coherent statement on this page.
Turning 16 is a milestone in everyone's life. I remember turning 16 like it was yesterday. It is when you know that adulthood is right around the corner because it is the next big milestone ahead. This caused a few tears for me today but also a few big smiles thinking about all that Kagan has ahead of him.
We discovered today the interesting facts of things that happened on August 15th! The start of Woodstock, the discovery that there was a solar system other than ours, the release of the Crisco by Proctor and Gamble and the dentist chair. Yet, I know that on August 15th that the birth of Kagan Ray Moss was a blessing beyond all discoveries of that day.
We did not get Kagan a car. It was a very (VERY) hard decision not to. There are several reasons why we didn't but mainly it would have been irresponsible of us to go into any debt when the future still holds a lot of unknowns. (This is me being very reasonable and mature and I hate it.) The only comfort is that he will not actually have a driver's licenses for another month and for the foreseeable future he will not be out driving without me anyways.
So it is something he can look forward to in the future.
These little things are the hardest part for me. Was getting Kagan car really that important? No, it was not. It is lavish and not a necessary at this point. It is just one of those things that cancer stopped and I get really angry when those things come up.
I also was tearful that when we woke up that stupid culprit decided to grow from a jelly bean back into a large shooter marble! There is some other areas that seem to be swelling on the neck but we will hold our breath and wait until tomorrow to see what is up with that when go to the doctor.
So for Kagan's birthday here are my 16 thoughts for you.
1. Kagan, I wish that the rest of your life from 16 forward is lived with the knowledge that life is precious. Unwrap the gift of each day full of expectation of joy, laughter and contentment.
2. Always know that YOU are worthy for EVERYTHING that your heart desires. I know this is true because your heart is pure and good and therefore all things that you heart is set on is within your reach.
3. Begin each day with prayer and end each day with prayer. Surrender the day to what God will bring and then each night thank Him for what He did.
4. Know that true love is never created. It is found and then nurtured to blossom into what it will be.
5. Never be afraid to fight for what is right. You will feel it in the depths of yourself and when you know it right you will never regret the bruises or pain it brings.
6. Aspire to be anything you want. Don't put a boundary on your dreams for your future for it is yours to live.
7. Don't ever live in fear! If you can be afraid of it then you can also conquer it.
8. Build bonds with your brother and sister every day because there will be one day when they will be the only ones who can understand exactly where you have come from.
9. Fill your life full of people but make sure that your most in depth thoughts and personal life are shared only with a few precious ones.
10. It is your story to tell but you get to tell it when you are ready. No a second more or less. Never feel ashamed to say when is the right time.
11. Know that cancer may have stolen this summer but Chemo gifted you being able to have many more.
12. For every negative you have make sure that you think of five positives.
13. SMILE!
14. Dig into God's word. Listen to wise teachers, us, pastors but know that God has written the word for YOU and there are treasures within the pages that only you can find. It is not a text book. It is God's love letter to you.
15. Give people a chance to know the real you. You might be surprised who they turn out to be when you give them an opportunity to show their real selves to you.
16. You are loved and cherished. I am sorry for the times I am wrong or when I don't know what to do. I am sorry when you deserve more than I can be. Yet, I can promise you that everyday in the past and each day in the future I will continue to strive to be the best mom you can have. When you need me, I will be there. For today I have to be your mom but I can't wait for the days to be your friend too!
Monday, August 13, 2012
Jelly Bean
"The Culprit" is getting down to the size of a jelly bean! It is still changing sizes and the infection is still hanging on there but we are praying that it is just infection and no cancer. I hate that little thing so much! Now that Kagan is finished with the antibiotic we will watch it the next few days to see how it reacts without the medicine being taken each day.
On the light side cancer jokes are quite the common thing in our house these days. It is odd how you begin to laugh at things that you can't otherwise change. I am sure that it will warp my children (and me) but the laughter is worth it these days.
We have decided that Kagan is going to do his very best to begin back to school next week. This decision has been made with a heavy heart and also with lots of emotions. I know that it will be good for him but it is getting harder each day that it becomes closer. If it does not work, we have a Plan B and Plan C already in place.
Today was a hard day. I just had a lot of emotions that I had not dealt with. I was thankful for Kaleb to come to my rescue. He just showed up and rescued me from a day of gloom and doom. Thank you, my love!
On the light side cancer jokes are quite the common thing in our house these days. It is odd how you begin to laugh at things that you can't otherwise change. I am sure that it will warp my children (and me) but the laughter is worth it these days.
We have decided that Kagan is going to do his very best to begin back to school next week. This decision has been made with a heavy heart and also with lots of emotions. I know that it will be good for him but it is getting harder each day that it becomes closer. If it does not work, we have a Plan B and Plan C already in place.
Today was a hard day. I just had a lot of emotions that I had not dealt with. I was thankful for Kaleb to come to my rescue. He just showed up and rescued me from a day of gloom and doom. Thank you, my love!
Sunday, August 12, 2012
Mission: Chemo Complete
The last few days I have not published my post because I have decided
that the post written while in the hospital and first night home are
pretty much too raw and make me sound like more of a lunatic than I
want to be. I will maybe post them someday for those who follow my
blog because they too have a loved one that is going thru what Kagan is.
For them, they will find it normal but for others maybe not.
Emotions at this time are running very high. Basically though we are getting to the point where Kagan is going to get busy living the life that he fought so valiantly to live.
The next few weeks will be hard, I will not lie. I spent most of yesterday trying to put my thoughts around what is next and how to sort out the next steps. Oddly, the chemo treatments had become the normal and after this week we leave the comfort of that "road map" that told us what comes next. After Thursdays chemo - the next parts are unknown!
What we know is yet to come is - more testings, more appointments, more testings and then in about a month ANSWERS!
As the days have passed, I will tell you that our parents have made such a big difference in our journey. I don't think I will ever get to old to need my parents with me. Thank you Momma and Daddy from the bottom of my heart for being where I could land to get strength to to hold up my family. You both will NEVER know how much I love you both for everything you have done. Thank you to my mother-in-law (Jeanne) for pretty much rearranging her whole life to be where I needed her to be when I needed her to be. I am very fortunate to have a mother-in-law who loves my kids so much and who I can always depend on. I love you very much! Thank you to Kaleb's dad for reaching out at the right time and sharing your concern. It meant more than you will ever know. Thank you all for loving your grandson so much and giving him love!
Emotions at this time are running very high. Basically though we are getting to the point where Kagan is going to get busy living the life that he fought so valiantly to live.
The next few weeks will be hard, I will not lie. I spent most of yesterday trying to put my thoughts around what is next and how to sort out the next steps. Oddly, the chemo treatments had become the normal and after this week we leave the comfort of that "road map" that told us what comes next. After Thursdays chemo - the next parts are unknown!
What we know is yet to come is - more testings, more appointments, more testings and then in about a month ANSWERS!
As the days have passed, I will tell you that our parents have made such a big difference in our journey. I don't think I will ever get to old to need my parents with me. Thank you Momma and Daddy from the bottom of my heart for being where I could land to get strength to to hold up my family. You both will NEVER know how much I love you both for everything you have done. Thank you to my mother-in-law (Jeanne) for pretty much rearranging her whole life to be where I needed her to be when I needed her to be. I am very fortunate to have a mother-in-law who loves my kids so much and who I can always depend on. I love you very much! Thank you to Kaleb's dad for reaching out at the right time and sharing your concern. It meant more than you will ever know. Thank you all for loving your grandson so much and giving him love!
Wednesday, August 8, 2012
Last Longterm Hospital Admission
This is the LAST long term hospital admission for Kagan under this protocol. In our prayers, it is the last forever! It seems just like yesterday was May 23rd and it was our first admission. I can't even begin to tell you how the emotions have changed from that date to this date.
From day 1 to now has been:
77 days
2 months and 16 days
110,880 minutes
6,652,800 seconds
Kagan had his THIRD PICC line inserted today. It went in so smoothly and without any complications. As usual there was the bedside X-RAY to check it's placement. He wasn't even phased as the process of a PICC insertion is kinda just the normal routine of what has happened at each admission.
We were in ROOM 106 when we first got admitted today. That room was THE ROOM where we first sat anxiously learning the process. It was kinda eerie going back there. For some reason the nurses asked us if we wanted to move to one of the larger rooms so we did. It was kinda nice to walk out of ROOM 106 in a different manner than the tearful and scared process that happened last time.
Today there was also some reassurance from the doctor that had been giving us a really hard time. I think she finally realized what I was concerned with and today for the first time she acted TOTALLY different. I feel better now that the neck thing being treated and the PICC line being fixed that she realized there were problems and hopefully will listen to us better in the future.
Kagan was also asked to participate in a ceremony at the hospital for the Pediatric cancer patients. The grant from Hyundai was $75,000 to the St. Joseph's to support children's care AFTER they are in remission. To better help support children as they grow into adulthood to be able to better coordinate their care for any future issues and to have access to their records for coordinating with other physicians. They had a car that is traveling around the country and on it the kids place their handprints. The story can be read here: Hope on Wheels.
Kagan's handprint is the red one to the right of the logo on the car. Isn't that the cutest handprint ever? I can't tell you how many lives he has touched and how his print on life has blessed me more than my words can say!
Now we sit here at 10:29 waiting for the urine test to come back to okay Kagan to begin chemo. It has been a long stay but hoping we get to the start the chemo before too long. Tonight is the rough night because he has to take many chemo medicines that last over 6 hours. Yet, the good thing is that he will likely sleep (as much as possible) during the chemo and therefore not be quite as difficult unless he get sick. Nurse just walked in and said it went UP (which is the wrong way) so we are going to try and get Kagan to drink a picture of water to help! (I am sure that he will love that I shared this whole part of the story)
I am hoping THE CULPRIT is beat the rest of the way down this chemo. It is still about the size of a shooter marble but I am praying that it will just go away after this chemo treatment. It would be such a mental relief to see it gone.
I got some really sweet emails from people this week that have kids with cancer that have been reading my blog. They sit where I did months ago and told me that knowing our story has made it easier. There is no two cancer stories alike but there is one hope that is universal - HOPE! I am thankful Kagan lets me share his journey for just this purpose.
We will keep everyone updated as we move forward to CHEMO GRAD day!
From day 1 to now has been:
77 days
2 months and 16 days
110,880 minutes
6,652,800 seconds
.... and I can assure that for the first time in my life each of those seconds have been counted and I have been thankful to God for allowing me to live them!
Kagan had his THIRD PICC line inserted today. It went in so smoothly and without any complications. As usual there was the bedside X-RAY to check it's placement. He wasn't even phased as the process of a PICC insertion is kinda just the normal routine of what has happened at each admission.
We were in ROOM 106 when we first got admitted today. That room was THE ROOM where we first sat anxiously learning the process. It was kinda eerie going back there. For some reason the nurses asked us if we wanted to move to one of the larger rooms so we did. It was kinda nice to walk out of ROOM 106 in a different manner than the tearful and scared process that happened last time.
Today there was also some reassurance from the doctor that had been giving us a really hard time. I think she finally realized what I was concerned with and today for the first time she acted TOTALLY different. I feel better now that the neck thing being treated and the PICC line being fixed that she realized there were problems and hopefully will listen to us better in the future.
Kagan was also asked to participate in a ceremony at the hospital for the Pediatric cancer patients. The grant from Hyundai was $75,000 to the St. Joseph's to support children's care AFTER they are in remission. To better help support children as they grow into adulthood to be able to better coordinate their care for any future issues and to have access to their records for coordinating with other physicians. They had a car that is traveling around the country and on it the kids place their handprints. The story can be read here: Hope on Wheels.
Kagan's handprint is the red one to the right of the logo on the car. Isn't that the cutest handprint ever? I can't tell you how many lives he has touched and how his print on life has blessed me more than my words can say!
Now we sit here at 10:29 waiting for the urine test to come back to okay Kagan to begin chemo. It has been a long stay but hoping we get to the start the chemo before too long. Tonight is the rough night because he has to take many chemo medicines that last over 6 hours. Yet, the good thing is that he will likely sleep (as much as possible) during the chemo and therefore not be quite as difficult unless he get sick. Nurse just walked in and said it went UP (which is the wrong way) so we are going to try and get Kagan to drink a picture of water to help! (I am sure that he will love that I shared this whole part of the story)
I am hoping THE CULPRIT is beat the rest of the way down this chemo. It is still about the size of a shooter marble but I am praying that it will just go away after this chemo treatment. It would be such a mental relief to see it gone.
I got some really sweet emails from people this week that have kids with cancer that have been reading my blog. They sit where I did months ago and told me that knowing our story has made it easier. There is no two cancer stories alike but there is one hope that is universal - HOPE! I am thankful Kagan lets me share his journey for just this purpose.
We will keep everyone updated as we move forward to CHEMO GRAD day!
Sunday, August 5, 2012
Saturday, August 4, 2012
Sleep Over
So there is little news over the weekend. All I do know is that the plan is to take out the drain from Kagan's neck on Sunday.
The preliminary cultures for organisms and fungus came back negative but the other cultures have yet to come back. Therefore, no news is good news type thing. For now Kagan is on IV antibiotics every 6 hours.
Still no news as to when the chemo will start. It could be that we stay here and go straight into chemo later next week or they could send us home for a week after this stay ends and then start chemo. Who knows?
Kagan is feeling well. Such a different kind of stay than when he gets chemo.
Kenadee spent the night last night. She said that it wasn't really hard to sleep here because she slept just fine. That girl could sleep thru a freight train.
This morning she snuggled up in the bed with her big brother to watch some tv together.
I feel so lucky to have such amazing kiddos. Kade will be here to sleepover tonight. Kagan really enjoys having them with him.
The preliminary cultures for organisms and fungus came back negative but the other cultures have yet to come back. Therefore, no news is good news type thing. For now Kagan is on IV antibiotics every 6 hours.
Still no news as to when the chemo will start. It could be that we stay here and go straight into chemo later next week or they could send us home for a week after this stay ends and then start chemo. Who knows?
Kagan is feeling well. Such a different kind of stay than when he gets chemo.
Kenadee spent the night last night. She said that it wasn't really hard to sleep here because she slept just fine. That girl could sleep thru a freight train.
This morning she snuggled up in the bed with her big brother to watch some tv together.
I feel so lucky to have such amazing kiddos. Kade will be here to sleepover tonight. Kagan really enjoys having them with him.
Thursday, August 2, 2012
FRANKENSTEIN
Well, the culprit has a new nickname - Frakenstein!
So as soon as he came out of surgery I said, "It looks like Frankenstein". He did not laugh, but seriously look:
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Today's outcome was that there was tons of puss in the there. The surgeons both said that it really needed to be done and they are so glad that we got it done because it poured out. It is now out for pathology to see exactly what we are dealing with!
The doctor said Kagan will likely be on the IV antibiotics for a week and we may be in the hospital for the entire IV cycle unless it responds very well and can then be given as a pill. It just depends on how the body fights here. Then the same game plan is to start chemo afterwards.
The really good news was the surgeon did NOT see any new tumor via his visual of the area during the surgery. That is absolutely the best of news to me. Doctor warned me still aren't 100% sure but not near the alarm that we had yesterday. He told me today he was actually very worried that the cancer had spread rapidly in that area.
So our plan of yesterday is a little altered but again Kagan did great. NO PAIN MEDICINE at all after surgery! The nursed keep telling him he has morphine ordered but he is like "No, I am fine"!
This morning Nurse G (now named Nurse Vampire) got the IV working this morning after a number of sticks but they replaced it again during surgery. When he come out we saw that they had poked him several times under sedation and now it is sitting very oddly on the side of his wrist. He does not like the position but again - no complaint.
Every day God just amazes me when the beginning of the day we see a mountain to climb and by the end of the day we are resting at the peak! If you are going to be on a roller coaster ride might as well be on the amazing ride that God designed because there is never a point where the dips and curves don't leave you with a awe inspiring feeling of what a great ride life can be.
When Kagan got back on the floor all the nurses welcomed him back. One of the absolute sweetest and FUNNIEST nurses Mrs. Desa was giving him sugars because she said he might not let her do it once he was awake. Such a sweet and caring nurse who makes this journey just a little easier.
So, for the rest of the night we are just watching a little tv and then hoping to get some sleep early.
(Yucky, I know but it is interesting to a teenage boy?)
So as soon as he came out of surgery I said, "It looks like Frankenstein". He did not laugh, but seriously look:
.jpg)
Today's outcome was that there was tons of puss in the there. The surgeons both said that it really needed to be done and they are so glad that we got it done because it poured out. It is now out for pathology to see exactly what we are dealing with!
The doctor said Kagan will likely be on the IV antibiotics for a week and we may be in the hospital for the entire IV cycle unless it responds very well and can then be given as a pill. It just depends on how the body fights here. Then the same game plan is to start chemo afterwards.
The really good news was the surgeon did NOT see any new tumor via his visual of the area during the surgery. That is absolutely the best of news to me. Doctor warned me still aren't 100% sure but not near the alarm that we had yesterday. He told me today he was actually very worried that the cancer had spread rapidly in that area.
So our plan of yesterday is a little altered but again Kagan did great. NO PAIN MEDICINE at all after surgery! The nursed keep telling him he has morphine ordered but he is like "No, I am fine"!
This morning Nurse G (now named Nurse Vampire) got the IV working this morning after a number of sticks but they replaced it again during surgery. When he come out we saw that they had poked him several times under sedation and now it is sitting very oddly on the side of his wrist. He does not like the position but again - no complaint.
Every day God just amazes me when the beginning of the day we see a mountain to climb and by the end of the day we are resting at the peak! If you are going to be on a roller coaster ride might as well be on the amazing ride that God designed because there is never a point where the dips and curves don't leave you with a awe inspiring feeling of what a great ride life can be.
When Kagan got back on the floor all the nurses welcomed him back. One of the absolute sweetest and FUNNIEST nurses Mrs. Desa was giving him sugars because she said he might not let her do it once he was awake. Such a sweet and caring nurse who makes this journey just a little easier.
So, for the rest of the night we are just watching a little tv and then hoping to get some sleep early.
Thank you God for each sweet dream and answered prayer!
Wednesday, August 1, 2012
Round 4 - TIME OUT!
We checked into the doctor's office today fully expecting to be admitted to the hospital for chemotherapy today. It is our normal admission date so we were packed and ready for the stay.
This last week Kagan has dealt with the healing of chemo sores in his mouth, a broke PICC line, a low blood count and being a little more sleepy. Then a two days ago he started saying that his neck was sore, like maybe he had slept on it wrong.
I began checking the culprit CONSTANTLY and noticed it was getting larger and puffier. When I would touch it I could feel fever in it but Kagan was not running any fever. Obviously, the doctor's knew we were coming in on Wednesday so we were to have it checked that day. When we were on our way, I noticed that the culprit had a white dot (looked like a pimple) in the center of it with even more red around it. It is about double the size then when the doctor last measured it a week ago.
So, we were already put on hold for chemo until the new PFT test could be done on Kagan's lungs. If he does not pass the test and there is an issue there could be a change in the chemo drugs because it means they are having and adverse action on his lungs and ability to breathe.
Then as soon as Dr. Panchoosingh looked at Kagan's neck he immediately began to take action. He said upon looking at it that there was no way this thing was staying in Kagan past this weekend! (Kagan not so happy but I am so glad to see this thing being aggressively beat down!)
Let me introduce you to the two doctors that I just adore for all their attention to Kagan and the absolute extraordinary care that they are giving them. I will be getting a photo with Kagan and them soon but I just pulled off their photos from their pages so that my Mom and Dad can put a face to the names of who I keep talking about.
Within the next hour we were admitted to the hospital, IV inserted, antibiotics being given, had an X-Ray and ultrasound! The surgeon and the two nurse practitioners were in to consult and to make a plan. They immediately scheduled Kagan for surgery tomorrow morning.
Our understanding is that they will put in a drain to get rid of the infection while also doing a biopsy to get some more tissue to send the pathologist. In a few days, Kagan will undergo another surgery to completely remove this area of lymph nodes once the report comes back so that they know exactly what they are dealing with here. (All subject to change :-))
As far as chemo the tentative plan is to get a PICC line back in after the infection goes away followed by chemo started. We are just praying that the timing does not require that Kagan be on Chemo during his birthday in just two weeks. It is the BIG 16!
We also learned today that there appears to be a manufactorer issue with the lot of Kagan's PICC line. They have been pulled from the hospital and they found his and sent it back to the manufactorer to see what happened with it. Great to know that we knew something wasn't right and for the amazing IV team for being on top of it. (Thanks to Stephanie, Wendy and Mani)
To pass the time I did allow him to sneak off in the wheel chair while waiting for the x-ray. Not sure it was allowed but hey the kid needed some fun for the day!
Even after the rough start to the day he had several friends (Janine, Abby and Sean) come to spend the afternoon/evening with him. Sure it made passing the time go by a little bit and not be so borrowed. Kaleb, Kade and Kenadee came up after Kaleb got off work.
Kaleb is off tomorrow so that he can be here for Kagan's procedures and hear what the doctors are saying. I am so very thankful for his company, bosses and their process to allow him to be a dad when it is important.
All and all, we have a busy day ahead of us tomorrow. We appreciate all the prayers that are being said for a safe surgery.
This last week Kagan has dealt with the healing of chemo sores in his mouth, a broke PICC line, a low blood count and being a little more sleepy. Then a two days ago he started saying that his neck was sore, like maybe he had slept on it wrong.
I began checking the culprit CONSTANTLY and noticed it was getting larger and puffier. When I would touch it I could feel fever in it but Kagan was not running any fever. Obviously, the doctor's knew we were coming in on Wednesday so we were to have it checked that day. When we were on our way, I noticed that the culprit had a white dot (looked like a pimple) in the center of it with even more red around it. It is about double the size then when the doctor last measured it a week ago.
So, we were already put on hold for chemo until the new PFT test could be done on Kagan's lungs. If he does not pass the test and there is an issue there could be a change in the chemo drugs because it means they are having and adverse action on his lungs and ability to breathe.
Then as soon as Dr. Panchoosingh looked at Kagan's neck he immediately began to take action. He said upon looking at it that there was no way this thing was staying in Kagan past this weekend! (Kagan not so happy but I am so glad to see this thing being aggressively beat down!)
Let me introduce you to the two doctors that I just adore for all their attention to Kagan and the absolute extraordinary care that they are giving them. I will be getting a photo with Kagan and them soon but I just pulled off their photos from their pages so that my Mom and Dad can put a face to the names of who I keep talking about.
THESE MEN ARE REAL HEROES TO ME!
Within the next hour we were admitted to the hospital, IV inserted, antibiotics being given, had an X-Ray and ultrasound! The surgeon and the two nurse practitioners were in to consult and to make a plan. They immediately scheduled Kagan for surgery tomorrow morning.
Our understanding is that they will put in a drain to get rid of the infection while also doing a biopsy to get some more tissue to send the pathologist. In a few days, Kagan will undergo another surgery to completely remove this area of lymph nodes once the report comes back so that they know exactly what they are dealing with here. (All subject to change :-))
As far as chemo the tentative plan is to get a PICC line back in after the infection goes away followed by chemo started. We are just praying that the timing does not require that Kagan be on Chemo during his birthday in just two weeks. It is the BIG 16!
We also learned today that there appears to be a manufactorer issue with the lot of Kagan's PICC line. They have been pulled from the hospital and they found his and sent it back to the manufactorer to see what happened with it. Great to know that we knew something wasn't right and for the amazing IV team for being on top of it. (Thanks to Stephanie, Wendy and Mani)
To pass the time I did allow him to sneak off in the wheel chair while waiting for the x-ray. Not sure it was allowed but hey the kid needed some fun for the day!
Even after the rough start to the day he had several friends (Janine, Abby and Sean) come to spend the afternoon/evening with him. Sure it made passing the time go by a little bit and not be so borrowed. Kaleb, Kade and Kenadee came up after Kaleb got off work.
Kaleb is off tomorrow so that he can be here for Kagan's procedures and hear what the doctors are saying. I am so very thankful for his company, bosses and their process to allow him to be a dad when it is important.
All and all, we have a busy day ahead of us tomorrow. We appreciate all the prayers that are being said for a safe surgery.
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