To the Person Who Gave My Husband a Second Chance,
I don't think you understand what you have done for Jake and my family. I have no idea how rough the medications have been on you or anything you've been through to give us this precious gift, but I thank you with everything that I am. You probably know that you're saving a life, but you don't know that without your stem cells, my husband would not have much of a chance of living past a year. We would likely not see another anniversary, or celebrate another Christmas together. His baby would not have a chance to know his daddy. You have provided us with hope and that second chance that will hopefully be successful and provide us with a lifetime of opportunity.
Your selflessness is something I will never forget, nor will I ever be able to repay you for this very precious gift. I hope you know in your heart that what you did is so good and beautiful, and your generosity inspires me to want to be a better person.
I pray that you will be blessed in your life in the ways that are needed for you. I pray also that you will know how grateful we are for this part of you that you are giving to us. We are forever indebted and grateful.
God Bless,
The Newrens
To my readers:
You may not know this, but we aren't allowed any information about our donor, and aren't allowed contact for a year or more. We may send letters through the transplant/donation center, but they will ensure that no identifying information is provided. It's actually an extremely hard thing to not be able to express gratitude directly, so this will have to do.
I can't believe tomorrow is T-day. It seemed like this day would take forever, and now it's here and it's real. It still scares me, but for tonight, I'm just grateful. What an amazing gift to be able to give to someone, and an incredibly precious gift to receive. I will cherish this gift for as long as God will allow me, and look forward to spending many years with my husband.
Wish us luck!
Tuesday, January 22, 2013
Rough Days
I have so many things running through my mind right now, I don't even know where to start. Unfortunately, this post will probably end up as unorganized as those racing thoughts. But I think I need to get it out on "paper."
I never expected this to be easy for Jake. I think I just hoped it based on how well he tolerated the first round. Each round proves harder and harder, though, and I'm constantly surprised at how strong I'm not. It's no secret that I've been nervous for the transplant round since we realized that was the road we needed to take, and I can't say it's getting any better. I really feel that I'm being tested beyond what I was prepared for, and I'm struggling to maintain a sense of feeling grounded.
Radiation began Jan 13th, and lasted for 6 days. Nausea hit hard within a couple of hours of his first round. Each day's side effects got progressively worse, and the doctors had a hard time getting his nausea under control. (Side note: It's been interesting to see the use of psych meds in nausea control. From a psych nurse perspective, it really threw me off). On Friday, he finally had a day that was much more tolerable than days past.
Following radiation, he had 2 days of chemo. Jake was quite nervous for those days, but they turned out to be a bit of a reprieve and those 2 days he was able to spend doing things he enjoys, such as working on dj mixes and playing video games. It was great to see him doing so much better. But that relief was short-lived.
This morning, he was started on an anti-rejection medication, and it really messed with him. His blood pressure went from normal, to 190/100, to 80/42. His heart rate spiked up to the 130's. He had tremors and a high temperature, and he was really reacting poorly to this medication. After nearly an entire day of trying to fix these problems, his providers finally decided that the best course of action is to transfer him to the ICU.
I can't begin to describe the things that start going through your mind when this kind of information is received. I've been struggling with the poor prognosis and long-term survival rates as it is, and then to have him transferred to a higher level of care was incredibly stressful and scary. I took comfort in the fact, however, that I was able to call and speak to Jake through all of this, so I knew that while he was talking he was mostly ok.
Jake remains in the ICU for tonight, and will likely stay there for the majority of the day tomorrow. He is stable now with a BP of about 110/70 and his heart rate is hovering between 100-110 (which is fairly normal for him). His temperature is also back to normal. So he's looking really good for tonight. He receives another dose of the anti-rejection medication, and so they'll monitor him more closely due to the reaction that he had today. We're hoping that he'll be back in his room on BMT tomorrow evening. Transplant is still on for Wednesday, so that's another thing to look forward to. We were hoping that transplant would be the start of the downhill part, but we have learned that the week after transplant tends to be the hardest. We are told that we can look forward to more nausea, mouth sores, body aches, fevers, and all kinds of fun things. I'm really not looking forward to the next week to week-and-a-half of hell.
I really wish Jake didn't have to go through this all. It's hard to watch and know that there's really nothing I can do for him. I just hope that once it's done, we'll be able to have a relatively normal life together, and experience the things we talk about so much. I miss him deeply while he's gone, and am hoping the next 5 or so weeks go by quickly.
Thank you to all of you who were willing to include Jake in your prayers when he requested it; I know those prayers and your faith helped him through this and have peace tonight.
I never expected this to be easy for Jake. I think I just hoped it based on how well he tolerated the first round. Each round proves harder and harder, though, and I'm constantly surprised at how strong I'm not. It's no secret that I've been nervous for the transplant round since we realized that was the road we needed to take, and I can't say it's getting any better. I really feel that I'm being tested beyond what I was prepared for, and I'm struggling to maintain a sense of feeling grounded.
Radiation began Jan 13th, and lasted for 6 days. Nausea hit hard within a couple of hours of his first round. Each day's side effects got progressively worse, and the doctors had a hard time getting his nausea under control. (Side note: It's been interesting to see the use of psych meds in nausea control. From a psych nurse perspective, it really threw me off). On Friday, he finally had a day that was much more tolerable than days past.
Following radiation, he had 2 days of chemo. Jake was quite nervous for those days, but they turned out to be a bit of a reprieve and those 2 days he was able to spend doing things he enjoys, such as working on dj mixes and playing video games. It was great to see him doing so much better. But that relief was short-lived.
This morning, he was started on an anti-rejection medication, and it really messed with him. His blood pressure went from normal, to 190/100, to 80/42. His heart rate spiked up to the 130's. He had tremors and a high temperature, and he was really reacting poorly to this medication. After nearly an entire day of trying to fix these problems, his providers finally decided that the best course of action is to transfer him to the ICU.
I can't begin to describe the things that start going through your mind when this kind of information is received. I've been struggling with the poor prognosis and long-term survival rates as it is, and then to have him transferred to a higher level of care was incredibly stressful and scary. I took comfort in the fact, however, that I was able to call and speak to Jake through all of this, so I knew that while he was talking he was mostly ok.
Jake remains in the ICU for tonight, and will likely stay there for the majority of the day tomorrow. He is stable now with a BP of about 110/70 and his heart rate is hovering between 100-110 (which is fairly normal for him). His temperature is also back to normal. So he's looking really good for tonight. He receives another dose of the anti-rejection medication, and so they'll monitor him more closely due to the reaction that he had today. We're hoping that he'll be back in his room on BMT tomorrow evening. Transplant is still on for Wednesday, so that's another thing to look forward to. We were hoping that transplant would be the start of the downhill part, but we have learned that the week after transplant tends to be the hardest. We are told that we can look forward to more nausea, mouth sores, body aches, fevers, and all kinds of fun things. I'm really not looking forward to the next week to week-and-a-half of hell.
I really wish Jake didn't have to go through this all. It's hard to watch and know that there's really nothing I can do for him. I just hope that once it's done, we'll be able to have a relatively normal life together, and experience the things we talk about so much. I miss him deeply while he's gone, and am hoping the next 5 or so weeks go by quickly.
Thank you to all of you who were willing to include Jake in your prayers when he requested it; I know those prayers and your faith helped him through this and have peace tonight.
Sunday, January 6, 2013
Bring Him Home
One benefit of living in Utah County is that you can almost bet that Sunday will be a day to avoid crowds. This turns out to be a huge deal to those who are immunocompromised and have to stay out of heavily populated areas. The movie theater is luckily not an exception to this rule.
We knew we wanted to see Les Miserables in the theater since we learned it was coming out. Jake's diagnosis threatened those plans. So we let a few weeks go by, and chose a Sunday matinee to attend (I know. I can already hear the judgement ;) ). I'm so glad we did! I loved the deeper story that the film version brought to the musical, and it added some things that I didn't recognize in the stage version.
As we draw closer to admission to start the transplant process, my emotions are very much on the surface. I found myself sobbing as Jean Valjean sang "Bring Him Home" and recognized the pleas of my heart to be that of the same. I could feel myself begging to God to just let Jake come home; he's so young. I feel comfort in knowing that the many blessings we have received have said that God will take care of him, but sometimes I wonder how it is that God sees fit to take care of him.
I hope for a future of happiness, and even welcome the sorrows if it means continued life together. I have dreams of building a house with Jake, of having another baby, and of experiencing more travel and family vacations. I pray that life continues and we are allowed such blessings.
About transplant: we are so far on schedule to be admitted on 1/13. This gives us a week to get everything together and to enjoy our time with Jake at home. We have not heard anything contradicting these plans as of yet, so this is what we are anticipating.
I can't believe how nervous I can get. I'm just trying to look ahead and to find things to look forward to in the future. In the meantime, I'll continue my pleas of "Bring Him Home".
We knew we wanted to see Les Miserables in the theater since we learned it was coming out. Jake's diagnosis threatened those plans. So we let a few weeks go by, and chose a Sunday matinee to attend (I know. I can already hear the judgement ;) ). I'm so glad we did! I loved the deeper story that the film version brought to the musical, and it added some things that I didn't recognize in the stage version.
As we draw closer to admission to start the transplant process, my emotions are very much on the surface. I found myself sobbing as Jean Valjean sang "Bring Him Home" and recognized the pleas of my heart to be that of the same. I could feel myself begging to God to just let Jake come home; he's so young. I feel comfort in knowing that the many blessings we have received have said that God will take care of him, but sometimes I wonder how it is that God sees fit to take care of him.
I hope for a future of happiness, and even welcome the sorrows if it means continued life together. I have dreams of building a house with Jake, of having another baby, and of experiencing more travel and family vacations. I pray that life continues and we are allowed such blessings.
About transplant: we are so far on schedule to be admitted on 1/13. This gives us a week to get everything together and to enjoy our time with Jake at home. We have not heard anything contradicting these plans as of yet, so this is what we are anticipating.
I can't believe how nervous I can get. I'm just trying to look ahead and to find things to look forward to in the future. In the meantime, I'll continue my pleas of "Bring Him Home".
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