MIBG Therapy

Its crazy the ride that the Hubbel family has taken and now the roadpath that we once knew is no longer in the forefront and we are taking a different road. Our lives in the past 3 weeks have been wild from taking Emily to CHOP to get her treatment for antibodies to going for scans and then going to she doesn't qualify for antibodies at the current time and her disease is considered progressing and she now is under a different regiment of treatment.  Hopefully this treatment won't take us far off and we will be back to the antibodies and this will be over.  But for now, we just take one day at a time and deal with what is in front of us. 

Yesterday Emily had to be at the clinic to be triaged, lab work, and for us to talk with Dr. Mosse and the Nurse Practioner about the process of what is to  happen the next few days.  Some things that we should expect and what will happen. We were able to take some time and get Emily a late lunch before being admitted and have some time together as a family! I have to tell you all, we miss our kids and them being away from us.  Emily is such a great eater, so we enjoy having family time eating with her.  It is always amazing to hear that many kids don't eat well, we have never had those problems unless she was in for chemo.  But Emily is a great eater, and we are so thankful for that. 

At 9 AM today, she will be undergoing general anesthesia and will have a foley catheter placed.  It is a quick procedure, but she is not going to like it one bit.  The catheter is placed because the radiation that she will be getting later today by IV will be so toxic, that you don't want it to sit in the body, it needs to come out, so it will come out through the catheter.  They will have the foley catheter go into a lead box that is liked that will be emptied a few times during the day.  This afternoon when Emily receives the IV of the MIBG therapy, she will be in the bed and will not be able to get out unless to go poop, but they would rather her do that in a bed pan. She will be behind a lead wall which will be around all sides of her bed, there is plastic all over the floor, door handles, the phone, toilet, anything that can be touched by Emily.  Even the led wall ares in plastic. Once she is given the IV, only one of us will be allowed in the room at a time and we will be wearing a meter that will monitor our radiation levels that we have and anything that she touches, will then have to be thrown away.  When we need to touch Emily, we will have to wear gloves and cover up.  We will learn more today about what we need to be aware of and things that need to be done.  I do know that the nurses will not come in as often, and we will have to change the bedding, give Emily her food and do all the most things that the nurses usually do.  They will still do her vitals and take care of her pump, but everything else will be up to us. I think the next 3 days are going to be more of a boredom for not only Emily, but us as well and ready to get this part of the process done and over with. We are nervous about her not being able to touch us because Emily loves to cuddle and touch, so we are really worried about that, but they will be giving her verset (don't know how to spelling) which should hopefully calm her and she is able to handle it. That is the biggest thing that we are nervous about.

Once Emily's levels reach 7 she will be discharged.  We have been told 7 days from today is when we need to worry about her contact with mainly her younger sister and that she she sleep in her own bed.  When she is discharged she cannot go to the Ronald McDonald House, so we will head to our camper for a few days and then head home.  After this Emily will have 6 weeks of hometime, and work will be back in order and Emily will only have 2 days a week of clinic to check on her counts and see if any transfusions are needed.  CHOP will be in constant contact with VCU to advise of what needs to be done and CHOP will call the shots, which is exactly how I want it.

The process should be starting soon and I want to post this so many of you know what we are about to go through. The past few days have been exhausting in so many levels that I haven't been able to post.

With Thanksgiving being tomorrow, there are so many things that I am thankful for in no particular order and felt that I should share. I'm thankful for friends and family who have been there to assist us in things that we need, take care of our kids if need be and things that need to be done while we are gone from our home.  I am thankful for our landlord who has been amazing during this journey!  I'm thankful for CHOP and the amazing doctors and nurses who know what they are doing and are confident in their work.  I am thankful for people, friends and family who have made donations, gifts, fundraisers for our family!  I am thankful for my job who have been beyond amazing through this journey and even allow me someone to talk to when I need it. I am thankful for a husband whom I love so much is such a great man and a wonderful father.  I am just overall thankful to have 3 wonderful kids who mean the world to me and would do anything for them.  I am also thankful for other NB moms who have been through this process (not just the current, but the past and the future) who has been there to answer questions for us anytime of the day or night and many of the moms who even text or call.  It is nice to have others who understand to talk to or even ask questions to.

Send lots of love and thoughts Emily and our way that the process is easy and goes quickly and Emily can handle this easily! Please love and hug your kids.

Happy Thanksgiving