Ashton has been in isolation due to fever for a few days now. However, as of today, he will be in isolation until the end. We are moving to the Bone Marrow Transplant area of the hospital today. It is paramount that he remains well. He received IVIG night before last and it did not go well. I was encompassing his entire body with mine to hold back rigors and fever through the night. They gave him Oxycodone for pain and Tylenol to reduce fever. We both finally fell asleep and slept until ten am. Then an aggressive nurse was like, “UP AND AT ‘EM!” If Ashton knew how to throw the bird, he would have. Instead, he said, “I hate you”.
I decided to come home last night for several reasons. One: I do not know when I will be back here again. Two: the calm before the storm. This is calm? It’s about to get really crazy with the new chemo because it has to be. He has to get so sick before he can get well. I, myself, have to be well. I finally obtained a doctor to help me with medicine. So, Ash and I are properly medicated for psychological reasons and we both have therapy.
I have about a million tomatoes and peppers about to jump out of my garden. Whoever wants them, you can have them. Anaheim peppers are hot, usually. It would be a shame to lose the yield. As for my lawn, I don’t even care anymore. A tree fell over my fence yesterday and I don’t care about that either. I think I was trying to keep things normal at home for when he returned. If he comes home, it will be winter. No grass. Let it die.
We are in the process of deciding our WISH. AS in, what does Ashton want as his WISH for the foundation.
My family is horribly apart because I use words like, “terminal”. Everyone deals with death differently, especially with a child. I will tell you this: I am allowed to be in reality. I will not pretend that this may not end with a reason or outcome. If I am not prepared (he is SEVERE HIGH RISK REFRACTORY ACUTE MYLEOID LEUKEMIA ) I have to spend these months living in reality. I have doctors tell me this. Many doctors who take children from all over the world tell me this.
I am taking today to prepare for the long stretch. Mentally. And, you know what? I’m going to get a damned haircut. I need to feel pretty for a day.
Thank you to all those who reach out and actually call or return calls or message me. If I thought it was a bad diagnosis on March 30, 2014, I am so afraid now. Much more afraid. If I act out, I am allowed. I am NOT allowed to fall apart because I have my two other children who will need me. Hell, they need me now. (I’m so sorry)
We are being photographed tomorrow. Hair and make-up. That makes me worry. Why are they doing this? Because they fear the worst? A last memory?
Thank you for those who give a hell and inquire about him daily even if I cannot answer the phone. Thank you for your prayers to the universe.
Stay strong dear, for all that the future holds. We listen in silence to every word that you share. I can’t imagine the pain that you both are feeling and I pray that the Lord answers our prayers.
Sending our love, hugs and prayers Erin….
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