The day started out well. We both got a good night’s sleep last night and Daniel was ready to start the day off right with poptarts and football. We were glad to find out that Kristyn, one of our favorite nurses was in charge of the day. She is caring and attentive and super sweet. Daniel loves her and although she has never given Campath before she knew exactly what to do and to be prepared for all that was coming. I became increasingly anxious as she began explaining how the day would go again to Daniel and wondered if it was best if he knew everything that potentially could happen throughout the process of the treatment. It was all so scary and I didn’t want him getting more worried than he needed to be, then realized that it was really me that was worried. After all I thought this is only the worst case scenario they are giving us. They just all kept saying how it “really kicks your butt” –REALLY. He started one premed and then another and then his first chemo drug and that went off without a hitch. Then started some premed benedryl and got ready for the test run of the Campath. Kristyn started getting him all ready with monitors and extra precautions. During Campath which is the heavy hitter of all the chemos to knock out the T-cells and this dose especially that knocks out the majority (up to 90% of them) or basically your entire immune system they want to monitor your blood pressure, heart rate, oxygen levels, at all times because it can be so dramatic to your system. So right on time the test dose starts and runs over two hours. He did okay and we enjoyed Kristyn’s constant company watching the early football game. He also had a good size lunch (keep this in mind for later). It was quite funny to watch her scramble as his heart rate and blood pressure would skyrocket in irregular patterns as he watched the game. He let out three random coughs and the doctor was alerted immediately as well as when his hands and feet got hot at one point. Meds were paused at both points, labs were drawn to assess the situation before determining it was safe to move on with the test dose. Once the test was completed over two hours the big guns came out. Full dose for the next two hours. All was a go and full speed ahead. The Broncos are about to start on one screen and some other game on the computer and I thought he was in a good place and all of a sudden it was like a bomb dropped. Within 15 minutes it was all hands on deck. He said his stomach hurt and he thought he was going to be sick. He looked at Kristyn and asked her politely if she gets sick if she sees other people throw up. She laughed at him and said “Daniel, you silly, why would I have this job if that happened?” He said okay good and asked me to get him the bucket quick. I refer to the large lunch he consumed about an hour ago. Well up that came and the throwing up did not stop for two hours. It was violent and painful and horrible to watch him go through. He hasn’t eaten enough to throw up for that long and after an hour and a half into throwing up he was maxed out on all medications that could possibly help. He was begging for anything to make it stop and just allow him to sleep. His body was so worn out and sore at this point he couldn’t even hold it up to throw up anymore and he was now throwing up blood. The doctor assured us that his platelet levels are still actually very good and that the blood is because he has been so violently throwing up for hours. My poor baby. He was moaning and screaming to go to ICU and we had to reason with him that there was nothing that they could do there and that it was almost over. The Campath had only 15 minutes left to go. G-d willing it was almost over and soon all the medicine would allow him to just sleep. He was almost out of all his energy and as he was laying there so weak and spent but still kept gaging and choking up blood. As he finally rested the shivering and chills set in. He still never did get a fever like they expected him to get. His poor little body was so sore he was just moaning in pain but he finally fell asleep for about an hour. I did too I think for a few minutes. And sure enough the little shit woke up just in time for Rob to get here and would you believe he was almost chipper and ready to watch the Packers game. I kid you not. He did say his ribs are sore and he is achy and he is down almost two and half pounds from this morning. That is a lot. I can not believe the strength of my child. The shitty thing is he has to have the same treatment for the next two days BUT supposedly the majority of the cells are out now so he should not go through this horrible experience again. Please G-d. I can’t imagine it happening this bad again. I truly think they will need to almost sedate him first tomorrow so that his poor tummy doesn’t tear apart. The weird thing is, nausea and vomiting isn’t even a typical side effect of Campath so I don’t even understand why he responded how he did. But that is atypical Daniel for you. Hopefully tomorrow we will just sleep through the whole thing and move closer to transplant. We are one step closer to our goal and Daniel has proven once again that in my eyes he is as big of a hero as they come.
I was right to be not ready for today. How could anyone have been ready for what we went through. And in the end when I told Daniel that he deserves to celebrate Veteran’s Day because he just went through his own personal war, he stopped me quickly and said that that was not right and that that was disrespectful to the real veterans out there. Oiy this kid never ceases to amaze me.
The day started out well. We both got a good night’s sleep last night and Daniel was ready to start the day off right with poptarts and football. We were glad to find out that Kristyn, one of our favorite nurses was in charge of the day. She is caring and attentive and super sweet. Daniel loves her and although she has never given Campath before she knew exactly what to do and to be prepared for all that was coming. I became increasingly anxious as she began explaining how the day would go again to Daniel and wondered if it was best if he knew everything that potentially could happen throughout the process of the treatment. It was all so scary and I didn’t want him getting more worried than he needed to be, then realized that it was really me that was worried. After all I thought this is only the worst case scenario they are giving us. They just all kept saying how it “really kicks your butt” –REALLY. He started one premed and then another and then his first chemo drug and that went off without a hitch. Then started some premed benedryl and got ready for the test run of the Campath. Kristyn started getting him all ready with monitors and extra precautions. During Campath which is the heavy hitter of all the chemos to knock out the T-cells and this dose especially that knocks out the majority (up to 90% of them) or basically your entire immune system they want to monitor your blood pressure, heart rate, oxygen levels, at all times because it can be so dramatic to your system. So right on time the test dose starts and runs over two hours. He did okay and we enjoyed Kristyn’s constant company watching the early football game. He also had a good size lunch (keep this in mind for later). It was quite funny to watch her scramble as his heart rate and blood pressure would skyrocket in irregular patterns as he watched the game. He let out three random coughs and the doctor was alerted immediately as well as when his hands and feet got hot at one point. Meds were paused at both points, labs were drawn to assess the situation before determining it was safe to move on with the test dose. Once the test was completed over two hours the big guns came out. Full dose for the next two hours. All was a go and full speed ahead. The Broncos are about to start on one screen and some other game on the computer and I thought he was in a good place and all of a sudden it was like a bomb dropped. Within 15 minutes it was all hands on deck. He said his stomach hurt and he thought he was going to be sick. He looked at Kristyn and asked her politely if she gets sick if she sees other people throw up. She laughed at him and said “Daniel, you silly, why would I have this job if that happened?” He said okay good and asked me to get him the bucket quick. I refer to the large lunch he consumed about an hour ago. Well up that came and the throwing up did not stop for two hours. It was violent and painful and horrible to watch him go through. He hasn’t eaten enough to throw up for that long and after an hour and a half into throwing up he was maxed out on all medications that could possibly help. He was begging for anything to make it stop and just allow him to sleep. His body was so worn out and sore at this point he couldn’t even hold it up to throw up anymore and he was now throwing up blood. The doctor assured us that his platelet levels are still actually very good and that the blood is because he has been so violently throwing up for hours. My poor baby. He was moaning and screaming to go to ICU and we had to reason with him that there was nothing that they could do there and that it was almost over. The Campath had only 15 minutes left to go. G-d willing it was almost over and soon all the medicine would allow him to just sleep. He was almost out of all his energy and as he was laying there so weak and spent but still kept gaging and choking up blood. As he finally rested the shivering and chills set in. He still never did get a fever like they expected him to get. His poor little body was so sore he was just moaning in pain but he finally fell asleep for about an hour. I did too I think for a few minutes. And sure enough the little shit woke up just in time for Rob to get here and would you believe he was almost chipper and ready to watch the Packers game. I kid you not. He did say his ribs are sore and he is achy and he is down almost two and half pounds from this morning. That is a lot. I can not believe the strength of my child. The shitty thing is he has to have the same treatment for the next two days BUT supposedly the majority of the cells are out now so he should not go through this horrible experience again. Please G-d. I can’t imagine it happening this bad again. I truly think they will need to almost sedate him first tomorrow so that his poor tummy doesn’t tear apart. The weird thing is, nausea and vomiting isn’t even a typical side effect of Campath so I don’t even understand why he responded how he did. But that is atypical Daniel for you. Hopefully tomorrow we will just sleep through the whole thing and move closer to transplant. We are one step closer to our goal and Daniel has proven once again that in my eyes he is as big of a hero as they come.
4 Comments
mom
11/9/2014 01:41:27 pm
Nadine you are taking care of your baby and I am so very proud of MY baby with how you are getting daniel thru this horible journey. There will be a light at the end. You will both keep going and both of you be strong.
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Mandy
11/9/2014 10:40:40 pm
Nadine your blogs are so point on that we are all there with you. Sending strength to Daniel who is in the fight of his life and to YOU for your unconditional love and support of him in every moment of this battle for LIFE. Sending live and strength were needed. Xoxo. Thinking if you all daily and following along...
Reply
Leslie Sidell
11/10/2014 02:41:01 am
Sending lots of love and strength at this difficult time. we are so sorry... . However, You all are amazing! Hang in there. We will keep good thoughts for a positive outcome. xo
Reply
Ronit
11/10/2014 01:21:08 pm
We are all cheering and praying…A true hero…Keep fighting. Thanks Nadine for the updates. Your heroism is inspiring.
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