Update as 12 noon today:
Nick's fever has broken. He is feeling okay. The doctors have decided to go ahead and give him Tamiflu as a preventative. They also did a nose swab to check for the flu, H1N1, and any other viruses he might have. He is resting comfortably and watching Indiana Jones. We may be able to go home tomorrow, but we will have to wait and see how his counts are.
Hi Everyone,
I guess there was a reason for his ANC to drop over a week. I am back from my trip and glad I jumped on an earlier flight to be home. Nick had a great day today and a playdate with Michael. I was able to give him a hug before he fell asleep on the couch. Greg carried him to bed and he seemed to be fine. Nick ended up coming into our room around 11:30pm and we noticed he was feeling very warm. We took his temp. and it was 101.1. I mentioned before and I have to repeat it, we were waiting for this. I took him into the ER and the place was packed. We were both wearing masks and I was surprised to see many parents not wearing masks while their children were coughing away. I found the first person I could and asked for a room right away. I guess I thought I would be prepared for our ER visit, but it does not change. Nick did not like his port being accessed and cried through it. We are now up in the 'red' pod, a familiar place but it has been since March the last time we were here. Of course there are new restrictions, no visitors under 18, including siblings and the doors remain closed into the pod. The precautions are good. The doctor wants to start him on tamiflu. They do not think he actually has H1N1, but because of his counts and fever, it is a precautionary measure. His ANC is 60, pretty low from just Monday when he was clinic. His White blood cells is 1.2 and red blood cells at 9.4. I'll try to keep everyone posted on his progress back to a healthy bill. I am going to try and get some sleep. I think I have been up for 24 hours now. Take care. Karen
Thursday, November 5, 2009
Tuesday, November 3, 2009
Holding down the fort without the boss here
Karen is away on business for the first time since Nick was diagnosed. The boys miss mom but enjoy running all over me. Nick finally got his H1N1 shot at clinic Monday. They will not have any for Karen or I as they first anticipated. Our Nurse was telling me that the staff has not received it yet and may not get it through the clinic either. We are still scurring to try and get the other two immunized but we don't know when that will happen. Nick had a little unusual drop in his APC this week. It went from 2400 to 1200 even though he was on steroids (Usually steroids bump his APC..the opposite happened.) It could be attributed to the fact that Nick had a high white blood cell count last week that we think was caused by his body fighting a little cold, therefore his APC was pushed higher and now that his white blood cell is back down the APC dropped as well. No large concern shown by our Nurse Practitioner, I guess we will see what next week brings. It is now time to get kids to bed. Have a great week.
Sincerely,
Greg
Sincerely,
Greg
Thursday, October 29, 2009
Fun Party Tonight
Hi Everyone,
We are doing well this week. Nick has weathered his steroids pretty good. The first day of it (Tuesday) I picked him up from school and he decided he would like a playdate with Michael. Michael and family are in FL this week and I explained we would have to wait. I think Nick cried, yelled at me and kicked things for about an 1.5 hours. He finally exhausted himself and took a 3 hour nap. I feel like I am getting a little better when I know he is going 'lose it' and get really upset. Once he gets lost in the world of 'why can't I do this', it is hard to bring him back. I think it works best when I count to ten first and then have Nick count with me. He has been good since then.
Colby, Nick and I went to a Halloween party tonight. We had so much fun. The kids had a scavenger hunt outside, dodge ball in the garage, ice cream sundaes, donuts on a string and best of all a scary story where you would put your hand in a box and feel the 'body part' (aka food) of the person in the story. Darcy and family had the house decorated and very spooky. Thank you.
The boys are very into Halloween this year. Last year, Nick was home with us but not feeling too well, with all the new chemo & steroids in him. Nick and I sat on our front steps (Kim across from us and we were yelling over to her) handing out candy. I had him all bundled up from head to toe and it was not a cold evening. He was happy just sitting on the steps, knowing he did not feel strong enough to walk around with his brother and dad. Nick remembers Halloween from last year and this year he said he really wants to try and walk around the whole neighborhood. We have the red wagon and maybe we can take Tom in tow with us.
Our family is well now and healthy. Greg and I are very concerned about the H1N1/flu going around. I leave for a business trip to Racine, WI on Monday. I look forward to the trip and seeing some of my co-workers I have not seen in a while and look forward to learning new business tools. I am also scared of leaving Nick and family. I know this blog is not about 'me', but the thought of leaving my family for 3 days is hard. I have not traveled in over a year and a half. I think I would feel much better if we had received the H1N1 shot. We are ALL still waiting for this. We can only receive the shot and NOT the nasal. It amazes me how I have learned some Pediatricians have the shot available, but our clinic does not. I really feel like it is just a matter of time before one of us gets sick. We are taking as much preventative measures as we can w/o trying to hold our kids back. Marie Cowles gave me some good advice tonight. If anyone knows of a pediatrician that have the H1N1 shots for a 6yr old and 16month old, please let me know. I know there is a lot of push back if you are not their patient, but at least I can ask. Nick is not in 'his window' to receive the shot. He can only receive the shot on days 15-21 of the 3 wk protocol. (He repeats his cycle from day 1-21). His counts will start to go down this week and next and then back up on week 3. If the shot is not available then, we will have to wait another 3 weeks for it. I am trying to focus on the rest of the family receiving the shot asap. Thanks for everyone's thoughts and prayers. Take care, Karen
We are doing well this week. Nick has weathered his steroids pretty good. The first day of it (Tuesday) I picked him up from school and he decided he would like a playdate with Michael. Michael and family are in FL this week and I explained we would have to wait. I think Nick cried, yelled at me and kicked things for about an 1.5 hours. He finally exhausted himself and took a 3 hour nap. I feel like I am getting a little better when I know he is going 'lose it' and get really upset. Once he gets lost in the world of 'why can't I do this', it is hard to bring him back. I think it works best when I count to ten first and then have Nick count with me. He has been good since then.
Colby, Nick and I went to a Halloween party tonight. We had so much fun. The kids had a scavenger hunt outside, dodge ball in the garage, ice cream sundaes, donuts on a string and best of all a scary story where you would put your hand in a box and feel the 'body part' (aka food) of the person in the story. Darcy and family had the house decorated and very spooky. Thank you.
The boys are very into Halloween this year. Last year, Nick was home with us but not feeling too well, with all the new chemo & steroids in him. Nick and I sat on our front steps (Kim across from us and we were yelling over to her) handing out candy. I had him all bundled up from head to toe and it was not a cold evening. He was happy just sitting on the steps, knowing he did not feel strong enough to walk around with his brother and dad. Nick remembers Halloween from last year and this year he said he really wants to try and walk around the whole neighborhood. We have the red wagon and maybe we can take Tom in tow with us.
Our family is well now and healthy. Greg and I are very concerned about the H1N1/flu going around. I leave for a business trip to Racine, WI on Monday. I look forward to the trip and seeing some of my co-workers I have not seen in a while and look forward to learning new business tools. I am also scared of leaving Nick and family. I know this blog is not about 'me', but the thought of leaving my family for 3 days is hard. I have not traveled in over a year and a half. I think I would feel much better if we had received the H1N1 shot. We are ALL still waiting for this. We can only receive the shot and NOT the nasal. It amazes me how I have learned some Pediatricians have the shot available, but our clinic does not. I really feel like it is just a matter of time before one of us gets sick. We are taking as much preventative measures as we can w/o trying to hold our kids back. Marie Cowles gave me some good advice tonight. If anyone knows of a pediatrician that have the H1N1 shots for a 6yr old and 16month old, please let me know. I know there is a lot of push back if you are not their patient, but at least I can ask. Nick is not in 'his window' to receive the shot. He can only receive the shot on days 15-21 of the 3 wk protocol. (He repeats his cycle from day 1-21). His counts will start to go down this week and next and then back up on week 3. If the shot is not available then, we will have to wait another 3 weeks for it. I am trying to focus on the rest of the family receiving the shot asap. Thanks for everyone's thoughts and prayers. Take care, Karen
Tuesday, October 27, 2009
Clinic
Hi All,
Today will be a quick update from us. No really big news to report. Greg took Nick to clinic yesterday and his counts were very good.
WBC: 5.9
RBC: 10.2
Plts: 245
APC:4,600
They have decided to increase his methortraxte to 100% dosage this week. He recieved Vincristine and is back on steroids and 6mp. We are still waiting for the H1N1 shot for Nick and nasal spray for the boys. It is frustrating waiting, but we know everyone else is waiting to. Until then, we continue to remind the boys to Purell all the time.
We are looking forward to the two Halloween parties for Colby & Nick and of course Saturday night. Nick is going to be the red Power Ranger and Colby is going to be a jedi. (Although his costume looks like a warrior, but that's okay). Everyone take care and have a great week. Karen
Today will be a quick update from us. No really big news to report. Greg took Nick to clinic yesterday and his counts were very good.
WBC: 5.9
RBC: 10.2
Plts: 245
APC:4,600
They have decided to increase his methortraxte to 100% dosage this week. He recieved Vincristine and is back on steroids and 6mp. We are still waiting for the H1N1 shot for Nick and nasal spray for the boys. It is frustrating waiting, but we know everyone else is waiting to. Until then, we continue to remind the boys to Purell all the time.
We are looking forward to the two Halloween parties for Colby & Nick and of course Saturday night. Nick is going to be the red Power Ranger and Colby is going to be a jedi. (Although his costume looks like a warrior, but that's okay). Everyone take care and have a great week. Karen
Tuesday, October 20, 2009
The 100th Blog
I am honored to be the one who writes the 100th blog. I guess Karen wrote almost all other 99 this is my oportunity to raise my average. The duration of this blog can be thought of in a few different measurements. Yes, 100 times we sat down to comunicate Nick's condition. Some other ways would be how many phases of treatment Nick has gone through (5 + phases: Prophase,Induction,Consolidation I, CNS therapy, Consolidation II and currently in Continuation). Or how about the amount of different medicines Nick has recieved ( 14 Chemotherapy drugs and numerous antibiotic, fungal, nausea and fever reducers not to mention the radiation). We could try and count how many hairs Nick has lost and regrown (more beautiful now than ever by the way!) but I doubt I could get any real answer there. We could try and count a lot of other life changing events that this child has gone through since this blog's inception but the most important number is 1. 1 strong child growing stronger every day and thank God for that. May this 100th post find you as happy and excited about the future as it finds Nicholas. You must understand that his excitement doesn't have much to do with his treatment and how he is doing...it is all about the kitty cat that he and his brother call Grimace. The newest member to the family. That is right, Karen finally got her girl and they named it Grimace!!!
Take care and God Bless you all,
Love the Shannon's
Take care and God Bless you all,
Love the Shannon's
Thursday, October 15, 2009
Nicholas 1 Year Ago
A year ago today is a day that forever changed our lives. It is the anniversary date of Nick’s diagnosis. While I can talk about the day and everything that happened prior to the day, I also have to reflect on how happy we are today. Our life as a family is great and Greg and I have grown much stronger through this journey.
The story: I guess I could go back to late August and September of last year. We had gone to the beach a couple of times during the summer with the kids. Nick would take walks on the pier or run around in the water, just like any 4 year old boy. After playing or a walk he would complain his legs hurt. We just assumed he was tired and wanted to be carried. Over the next few weeks he started to really snore at night and we noticed his lymph nodes on his neck looked swollen. I was at the mall with my dad (Papa Boston), Tom and Nick and my dad asked why does Nick’s neck looked so swollen. I said: ‘oh, I have to call the doctor about it, I am not sure why. He is not sick and acting fine, but he is snoring at night and sounds at little stuffed up.’ I took Nick into the doctor’s office that day to see Dr. M and after a thorough check up she explained that we needed to go to the ER tonight. She said they should check his white blood count and run some tests. She explained the swollen lymph nodes could be a virus or something more. Greg brought him in that night and they ran tests, but everything came back negative. We waited one more week and repeated these tests, thanks to the follow up from our doctor. I can remember the phone call the next morning from Dr. M. She said the results showed malignant cells in the blood and we should head down to the Tomorrow Fund clinic right away. She explained we would be in excellent hands with Dr. Forman and their team and she had complete trust in them. Greg’s mom left work and came home to watch Thomas, while I picked Nick up at Prospect hill. (He is there today, while I am writing this blog). Greg left work and met us at home. The ride to the clinic and the waiting period are a little bleary now, but we knew at the time it was either Leukemia or a virus of some sort. The final results were devastating, but we knew we had to be strong. Greg spent the first night with him and the next morning the doctors performed a bone marrow sample to confirm he had T-cell. The 2nd night I spent with Nick and the next morning he had surgery to insert his port. He was then given 4 injections of chemo into his spine over 2 weeks and also received chemo through his port. Nick went through radiation, blood transfusions, side effects and most of all, bone pain. He was amazing through it all, and always found a way to smile. We have found our strength through the wonderful friends and family, co-workers and inspirational stories we have heard over the past year.
We are blessed with 3 wonderful boys and a house filled with love. We know God has watched over us.
We were explaining to Nick last night about today and how it is his anniversary. This morning the boys woke up and decided that we should have a party. Nick asked if we would get a cake and what we are going to do tonight. While I had tears in my eyes, they boys just smiled and talked about that day. It just reminds you of how kids perceive life and how they make the most of it. Keep Rockin Nick
Love, Karen and the Shannon Family
The story: I guess I could go back to late August and September of last year. We had gone to the beach a couple of times during the summer with the kids. Nick would take walks on the pier or run around in the water, just like any 4 year old boy. After playing or a walk he would complain his legs hurt. We just assumed he was tired and wanted to be carried. Over the next few weeks he started to really snore at night and we noticed his lymph nodes on his neck looked swollen. I was at the mall with my dad (Papa Boston), Tom and Nick and my dad asked why does Nick’s neck looked so swollen. I said: ‘oh, I have to call the doctor about it, I am not sure why. He is not sick and acting fine, but he is snoring at night and sounds at little stuffed up.’ I took Nick into the doctor’s office that day to see Dr. M and after a thorough check up she explained that we needed to go to the ER tonight. She said they should check his white blood count and run some tests. She explained the swollen lymph nodes could be a virus or something more. Greg brought him in that night and they ran tests, but everything came back negative. We waited one more week and repeated these tests, thanks to the follow up from our doctor. I can remember the phone call the next morning from Dr. M. She said the results showed malignant cells in the blood and we should head down to the Tomorrow Fund clinic right away. She explained we would be in excellent hands with Dr. Forman and their team and she had complete trust in them. Greg’s mom left work and came home to watch Thomas, while I picked Nick up at Prospect hill. (He is there today, while I am writing this blog). Greg left work and met us at home. The ride to the clinic and the waiting period are a little bleary now, but we knew at the time it was either Leukemia or a virus of some sort. The final results were devastating, but we knew we had to be strong. Greg spent the first night with him and the next morning the doctors performed a bone marrow sample to confirm he had T-cell. The 2nd night I spent with Nick and the next morning he had surgery to insert his port. He was then given 4 injections of chemo into his spine over 2 weeks and also received chemo through his port. Nick went through radiation, blood transfusions, side effects and most of all, bone pain. He was amazing through it all, and always found a way to smile. We have found our strength through the wonderful friends and family, co-workers and inspirational stories we have heard over the past year.
We are blessed with 3 wonderful boys and a house filled with love. We know God has watched over us.
We were explaining to Nick last night about today and how it is his anniversary. This morning the boys woke up and decided that we should have a party. Nick asked if we would get a cake and what we are going to do tonight. While I had tears in my eyes, they boys just smiled and talked about that day. It just reminds you of how kids perceive life and how they make the most of it. Keep Rockin Nick
Love, Karen and the Shannon Family
Hi all - From Aunt Amy
It was one year ago from today that Nick was diagnosed with ALL. What a year it has been for the Shannon family and all those related to them. I still remember the call from Karen that night as she drove home from the hospital (Greg stayed with Nick when he was admitted that day) - the tears and shock of learning her son had Leukemia. It impacted their family, our family, and friends in an upsetting and uplifting way. Our sister Christa and I immediately thought of getting this blog site together to share with everyone Nick's journey. I still get tears everytime Karen or Greg posts, even though I had most of the time just seen Nick. He really is a strong boy who really just want's to enjoy life and play. It's been a long year for everyone, especially Nick and his family. Just wanted to thank everyone who has and continue to support the Shannon family as Nick fights ALL.
I think Karen and Greg can elborate more on the day, the shock of the diagnosis, and Nick's journey through the year. With Love Aunt Amy
It was one year ago from today that Nick was diagnosed with ALL. What a year it has been for the Shannon family and all those related to them. I still remember the call from Karen that night as she drove home from the hospital (Greg stayed with Nick when he was admitted that day) - the tears and shock of learning her son had Leukemia. It impacted their family, our family, and friends in an upsetting and uplifting way. Our sister Christa and I immediately thought of getting this blog site together to share with everyone Nick's journey. I still get tears everytime Karen or Greg posts, even though I had most of the time just seen Nick. He really is a strong boy who really just want's to enjoy life and play. It's been a long year for everyone, especially Nick and his family. Just wanted to thank everyone who has and continue to support the Shannon family as Nick fights ALL.
I think Karen and Greg can elborate more on the day, the shock of the diagnosis, and Nick's journey through the year. With Love Aunt Amy
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