Tonight a group of friends convene one more time to pray for Daniel before he goes to transplant. I know this will help raise his name to G-d and prays will be heard for a successful transplant and speedy recovery and I thank everyone for keeping him in their thoughts. At this time I can’t help but focusing all my thoughts towards a complete stranger that tomorrow will become Daniel’s donor. Tomorrow Daniel’s donor will harvest his marrow and surely have some discomfort. As I am sure you can imagine there is no way to properly thank this person. What can you say to someone that makes a conscious choice to save a life. We don’t know this person and they don’t know us. Maybe next year once all goes well we will get the chance to find out who this wonderful person is and find a way to say a proper thank you. I don’t think a year is enough time to come up with the right words. I know my words won’t be heard by this man and his family but if I could ask everyone reading to please say a few silent words or prayers or whatever you feel is right to thank this man and his family for what he is doing for ours. There is no greater gift than the one he will give tomorrow. I wish him an easy time and quick healing as he sends part of himself into our lives forever.
After a terrible night sleep for both of us (due to beeping machines and malfunctioning night nurse). We started the morning early with poptarts and getting a head start writing his football show. In anticipation of feeling crappy with his treatment, despite feeling okay early, he preemptively decided to hand in a script and have Chris and Cody read it for him. If he could participate at 2:00 he would. Once again premeds as usual and his last day of the second type of chemo was completed (woohoo). On to the Cyclosporin, which he will have to take for a year as an anti rejection drug and will switch to pill form after transplant but right now is on IV form. Problem is that something in the IV compound is making him react poorly. And by poorly I mean it is making him sick. He is needing extra doeses of Benadryl to tolerate it. Onto the second day of Campath with made him violently sick yesterday but completely depleted his lymphocytes and most of his white blood cells yesterday. Worth the side effects …hmmm, I guess so??? He proceeded to start eating lunch (still has a great appetite), fixated on putting back on his 2.5 pounds in one day and did fine with no nausea. Then just as fast as yesterday’s symptoms came on Daniel got a hive. This is a typical side effect. Then Daniel instantly turned into ONE BIG HIVE. He blew up into a big red rash from head to the bottom of his feet and then he started to get a tickle in his throat and when he went to take a drink of water started to choke. Within seconds every doctor on the floor was in the room. They had him filled with steroids, hydrocortisones, and different forms of Benadryl in minutes before they hit him with the Epinepherin. He liked watching his heart rate rise on the monitor and match it with the visual of seeing it beating in his chest. He thought it was very cool that he could see it beating so fast. Yah, very cool. Meanwhile he now has 5 times the allotted amount of Benadryl in him and he is still wide awake (since 4 in the morning I might add). Now with the epinepherin he could run a marathon. The meds helped to calm the rash and itching and heat (have I mentioned he keeps the room as cold as a meat locker). By 2:00 he was unexpectedly fine to call in to his football show and was pretty funny trying to clean up the comedy of errors going on in the studio that was going on as Miss Colorado and a Studio intern tried to bluff their way through Daniel’s [P]Review. Afternoon rolled on and he worked on a mega-Lego set that Rob got him and 5:00 hit the hives returned with a vengeance. This time different and 10 times worse. Instead of small and consistent they were huge welts and ugly and blobby and in very bad places and were hurting. Back to the load up of Benadryls and cortisones but this time we covered him from head to toe in Calamine and a topical steroid. My BIG PINK BOY. He was such a good sport. I can’t imagine how uncomfortable he is. He said his ankles were the worst and driving him crazy. UGH! I would be going mad. I was but there was nothing I could do about it. Now swimming in Benadryl and not asleep I don’t understand it. But wait. It is Monday night football. No wonder he isn’t sleeping. Rob just got here and once again all is calm. He is still eating two hours later and has put on at least a pound today. Another crazy day. Dr. says he is going to change the last day of Anti T-Cell Serotherapy tomorrow to a different type. It has done the majority of its job and he wants to try this other one to see if we have such dramatic impact on Daniel’s system tomorrow. Daniel seems to be taking it all in stride. He said he had a great day today with his favorite nurse Rebecca. You could knock me over with a feather at this point with all he is going through.
Tonight a group of friends convene one more time to pray for Daniel before he goes to transplant. I know this will help raise his name to G-d and prays will be heard for a successful transplant and speedy recovery and I thank everyone for keeping him in their thoughts. At this time I can’t help but focusing all my thoughts towards a complete stranger that tomorrow will become Daniel’s donor. Tomorrow Daniel’s donor will harvest his marrow and surely have some discomfort. As I am sure you can imagine there is no way to properly thank this person. What can you say to someone that makes a conscious choice to save a life. We don’t know this person and they don’t know us. Maybe next year once all goes well we will get the chance to find out who this wonderful person is and find a way to say a proper thank you. I don’t think a year is enough time to come up with the right words. I know my words won’t be heard by this man and his family but if I could ask everyone reading to please say a few silent words or prayers or whatever you feel is right to thank this man and his family for what he is doing for ours. There is no greater gift than the one he will give tomorrow. I wish him an easy time and quick healing as he sends part of himself into our lives forever.
4 Comments
Earnest Shapera
11/10/2014 02:09:37 pm
Our prayers and thanks forever go out to the donor our wish for a good night for Damiel and Nadine and Rob and Matthew
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Mandy
11/10/2014 11:21:29 pm
Grateful for the KINDNESS of Strangers. Gathering Prayers from all over. Strength of Spirit be with you Daniel and may LOVE see you thru <3 much Love... See ICU Happy Healthy and Well <3 Love you now and always.. Aunty Mandy
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Beatrice and Ron Koffman
11/11/2014 06:39:28 am
As friends of your parents and grandparents, Cookie and Earnie, I have following your blog and Daniel's progress. Although I have met Daniel, I am still constantly amazed by his attitude, his strength and his bravery, as well as your (Hailpern family) positivity and perseverance and love. You are truly blessed to have the support of so many people. On the eve of Daniel's transplant tomorrow, I will be praying for a positive outcome for Daniel and his wellness. Daniel, you are truly an inspiration for so many. Here's hoping all goes well for you tomorrow and that we will see you healthy and happy back in Winnipeg in a year's time.
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amy scott
11/11/2014 09:27:17 am
After going through this journey with my husband many years ago, I know how thankful you are to the donor, how every blip of a machine or mark on the body gets you into 5th gear. You are amazing, Nadine. Your blogs are so filled with wonderful insights, interesting connections, etc. Please tell Daniel that I think of him every day. And I think of you every night. Prayers, positive vibes etc. go to your family and the donor today and tomorrow and always. Lots of love!!!
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