Hello everyone. Thanks so much for your kind words and prayers. This has been a whirlwind of a week. My husband and I are in NYC with Ila Jean. We met with the doctors this morning.Er surgery is scheduled for Monday. She will have 3 rounds of high dose chem at our home hospital afterward. For more details you can go to her site which I'll post below.
As for me, I am having a rough time. I had a horendous head cold take over the day I found out she relapsed and it got a hell of alot worse over the weekend. I called my doctor on Saturday and he callind in Z-pak for me. The cold as gotten better and I feel better but it's not 100% yet. the problem though is that in the process of this cold I had terrible coughing fits and along with the enormous stress I am under, I have a very stiff neck. The pain in my neck is on the left side and goes into my shoulder and I can't turn my head hardly at all. The pain is awful. I am taking my muscle relaxers and hydrocodone when I know I can lay down. It's just terrible. Tonight is the mother's day spa night here in the Ronald McDonald house. I signed up for it. They do massages and I know I can't get a neck massage, but I think I am going to ask to have my shoulder massaged. The most pain is in my shoulder muscle at the base of my neck going into my shoulder blade. I am just desperate for this pain to go away. My daughter needs me and I feel like I can't give her 100% of me. My chiari headaches surprisingly are still doing great other than the one I had the day I found out. I get slight headaches but not enough to have to take something for them. They are very tolerable.
I'm doing ok down here for now. I am here and I don't have to stress about the other 2 kids or about work or the house or anything. I can concentrate on Ila Jean. I am worried about going home. She will be getting high dose chemo. This means inpatient during chemo. Home for a few days. Counts dropping, then neutropenia, back inpatient, sick and then rebounding. Then we get to doit all over again. 3 times. At least. My husband is going to be with her for the most part. BUt I will have to balance this with the house and kids and work along with the worrying. I am not looking forward to this and to watch her go through it and lose her hair and see the effects it has on her little body. This is going to be very very hard.
I know I can come here and vent and cry and get the support I need. I am so grateful for that and for all of you. Thank you.
Love, Jenny