I talked with Jeni a few times over the last several days and I have time now to sit down here and actually type something! She is doing so great and I think she is such a strong person. I know it is not easy. Jude was not eating and had lost weight...so they have her now feeding him through his line. I believe it is TPN (Total Parenteral Nutrition). He is not gaining weight, but at least he is not losing anymore either. Jeni said he weighs about 36 pounds right now. She said he is so much skinnier than in the video (I posted the link in the previous post). She can't believe it either. He has actually been in the hospital the last couple days because he got a fever and when that happens, he automatically is an inpatient since his immune system is pretty much non existent right now.
Actually, that is what happens with the chemotherapy. He receives 3 doses, 3 days in a row, then has a day of rest and then gets stem cells the next day. This happens once each month for the 4 months they are there. He is almost done with the second I believe, so Jeni is happy about that. The tough part is that after his chemo, his immune system goes to NOTHING. This means he wears a mask and she has to have antibacterial wipes and cleanser everywhere and washes the sheets every day and also their clothes. EVERY DAY!!!! She cannot take him in any store or anywhere around people during the time until his counts go up which I think she said takes about 10 days. Which leads me to an interesting story about his NOT being able to go in a store.....
Her sister and brother and law were visiting last week and one day they all went to a Wal Mart in Arkansas. Well, Jude had to stay in the car so his auntie Jocelyn stayed in the car while Jeni and Jeremy went inside the store. Well, while they were in there they heard a "pop...pop" and were told there was "violence in the store" and they should stay where they were. There were gun shots and police were called. Funny thing is she and I were actually on the phone later after she told me this story and then the story came on the news. I told her to listen and tell me what it said happened. How weird, huh? Well, some man was upset at his wife who worked at the WalMart apparently. He shot at her twice but missed....but then somehow got a hold of her. Police told her to move so they could get a clean shot....she did something and knocked the gun out of his hand or something...and police jumped him and arrested him. Is that crazy or what? Jeni said I'm missing all the excitement. She's so cute....
On a sad note, in a previous post I mentioned some of the families I met while I was there. One was a man named Trent with a 5 year old son with inoperable medulloblastoma. Jeni called me yesterday to let me know that the little guy lost his battle......he passed away last week. This is so very sad....These are the things that cause me to reflect on my own life and children. If I knew it might be the last day I had with my child....?? While optimistic about radiation and chemotherapy, Trent also knew that the treatments were only holding off what was probably the inevitable for his son. We knew it too....but it was not spoken.
Jude with Laura in occupational therapy
Jude with Courtney on her last day......they were both sad about that! 