So as I spend tomorrow repacking and getting ready to head back to the hospital, it is more than just packing up a box and suitcase to move us out for a couple months. It is so much more. So much is on the line, so much that can go wrong, so much to risk. But we have to do what we have to do to bring our baby home again. We will come home safe and healthy and whole again. New lease on life, new blood and new start. We will be home again, and will get that chance.
Well we did it. We made it through a grueling two weeks of BMT work up. We have had every organ, emotion and orifice assessed and everything has checked out. Daniel is in remarkably good health and all baselines are collected and complete. The best news came earlier this week when we got the results of Daniel’s latest bone marrow biopsy. For the first time since being diagnosed in June Daniel is technically Leukemia free. He no Leukemic cells in his bone marrow and has no genetic mutation any longer. I know it sounds very confusing. You ask then why does he need to have a whole bone marrow transplant? That’s okay everyone asks that. Even Rob on a daily basis. It is because of how he responded (or didn’t respond) to his first round of induction and the type of resistant rare Leukemia he has. The bottom line is the bone marrow transplant is the best chance of a CURE to his Leukemia period. Believe me, not that we want any of this to be happening but if we can walk away at this point we would. But we can’t. But we are walking in on Sunday with the cards stacked in our favor. Daniel is healthy, his numbers are strong, timing is good, his donor is an excellent match. The time is right and we are doing this NOW. And I am scared as shit. Along with the tests came all the consent forms and waivers and signatures. Everything that described the worst case scenarios and warnings. I know they are covering themselves and need to prepare us in the unlikely event, but nonetheless it made me feel like I was literally signing my life away. Literally. As difficult as everything started and as long as we have been at this, Daniel has been feeling good lately and now they are telling us it is not going to stay that way, they are telling us about how bad it will get and how it is rare that he will get through it without all of the bad parts (I will spare you). I kept turning to reassure Daniel that these things may not happen, and we will may not have to deal with most of those hard things because we haven’t seen any of it so far, and the doctor kept redirecting us giving us a timeline about WHEN these things will surface in our timeline (or roadmap as they call it). I understand that there will inevitably be side effects to deal with and that is a price to pay for the bigger prize of a cure, I am just terrified of it all. I think I am anticipating it now, when before I didn’t know what to expect. Man, am I to knowledgeable? Regardless, we are doing this and I will do everything humanly possible to keep Daniel’s spirits up and keep him as healthy as long as possible. I know I can’t do anything medically, but I can advocate for him, and keep things in this strange environment as normal as possible for him. With all the restrictions we will have imposed it won’t be easy, and this blog will be my only connection to the outside world for quite a while. This will be another challenge. We will welcome all emails and texts and calls when we can take them. Again I cannot predict how our days will go, I hope with ease and time for introspection not just days of stress and sickness. I hope you will all send us your best wishes, thoughts, prayers or whatever you can. We would love you to drop us a card or a fun picture to brighten Daniel’s day and liven up his room. We will be at the hospital in isolation for a minimum of 6-8 weeks starting on Sunday morning. Please G-d not much longer. I am not anticipating any set time frame at this point. Sending anything to our house will get to us through Rob most nights (446 South Olive Way, Denver, CO, 80224) or in care of Daniel Hailpern at the Hospital (The Children’s Hospital, 7th Floor East , 13123 E. 16th Ave, Aurora CO, 80045). I know Daniel loves looking at your words and cards that are made or sent (as do I).
So as I spend tomorrow repacking and getting ready to head back to the hospital, it is more than just packing up a box and suitcase to move us out for a couple months. It is so much more. So much is on the line, so much that can go wrong, so much to risk. But we have to do what we have to do to bring our baby home again. We will come home safe and healthy and whole again. New lease on life, new blood and new start. We will be home again, and will get that chance.
6 Comments
Mandy
10/31/2014 06:42:36 pm
Praying daily for you all <3
Reply
Baba
11/1/2014 01:37:46 am
Daniel, you are in our heart and soul, you are a strong boy and with a great smile through all this and we all wish you lots of love and a great recovery with the new lease on life. Nadine we wish you also from our heart that you and Daniel will come out off this with flying colors.
Reply
ZaidA earnie
11/1/2014 02:11:49 am
Hey little buddy . I know this is a big moment but with a brave heart and the love of all your family and friends ,we hope you will come through this chapter of your life with flying colours . We wish we could be with you in person but we are with you in spirit
Reply
Aunty Toby
11/1/2014 11:11:48 am
my candle burns bright for you Daniel on your journey to good health
Reply
Rikki mor
11/1/2014 11:39:05 pm
Thinking of you all as you embark on this journey! We are sending love, strength and prayers your way!!
Reply
cory shapiro
11/2/2014 06:58:35 am
Our thoughts and prayers go out to you Nadine, and to Rob, Matthew and especially to Daniel. May G-d grant Daniel a rifuah shleymah and may you all know only health and happiness in the future. Your Winnipeg cousins with (almost) the same last name.
Reply
Leave a Reply. |
Archives
July 2016
CategoriesAuthorNadine |