My thoughts.....

It is hard for me seeing these pictures of Jude. He is not the same little boy he was several months ago and will come out of all of this changed to one degree or another. He is undergoing serious treatment. It is a reality Jeni and I have talked about. She is not overly saddened by this I think because ultimately all she wants is for her son to survive this. He is getting the best treatment. If there are effects of the treatment...she can handle those. I still applaud my friend Jeni for the champion she is for her son. Sometimes I think I try not to think of all of it too deeply because it makes me too sad. The comfort and happiness (at some level) I feel comes from seeing the smile on Jude's face. And to know he is handling this all so well. And when I have the opportunity to talk with Jeni on the phone...well, that makes me happy too. She is such a strong person. I want her to see these words too and know how amazing I think she is. And how much I wish I could do more for her and Jude. I know there are so many people that feel the same. I literally am counting the days til they can come home....I'm sure everyone feels the same about that too!!!! I KNOW they wish they were home. And I can't wait!!!!!

A note from Jeni.....sent to me Sunday. =)

"Well, Jude is doing great. He is really bouncing back from his last chemo. He's walking alot more, even chasing me around!! His immune system is 0 right now, but he feels good. Had some friends from the hall visit, and it was great. !!! We are due for a scan soon, to see how the cancer is reacting to chemo so far. Hopefully all is well. I'll let you know. Jeni "

Visits from friends....touches the hearts of Jeni and Jude for sure!!!

Kent and Todd came to visit!!!

Vickie came too!!!

Target House events!!

Here are some pics of some events Target house had for their 10th anniversary. They had some celebrities come to the hospital, then a circus theme at Target House. Jude did good with his chemo's Tues and Wed, he rested in the hospital thurs, and then Friday (the day of the carnival) they let him go home. He didn't want to go outside to where the carnival was, so he just looked with his telescope through the window....especially fascinated with the stiltwalker. Little did he know that his dad told the stiltwalker what room we were in, and she suprised Jude and came up there to bring him some cotton candy!!

From this past week's note from Jeni!

Here's a note about today(Monday September 14). Monday morning and we did the second round of chemo today. Vincristine, Cysplatin, and amifostine (which is a rescue drug because without it the other drugs would damage his hearing and or kidneys) That last one is the worst. Poor Jude started out doing better than last time, so I thought, but with that 2nd dose of amifostine, he just kept on throwing up for a couple of hours till they gave him a new anti- vomiting drug that finally worked. Then he was fine, and of course, went back to his favorite things......WII and his telescope. Whew!! Tomorrow will be Cyclophosphomide (did I spell that right?) and Mesna, and Wednesday will be the same. Mesna is another rescue drug that has to be given so the other doesn't give him bladder disease. They fill him with fluids and he will have to pee every 2 hours round the clock until Wednesday. Hopefully things will go better tomorrow. Bye y'all...

Jude with BMX rider Matt Hoffman

judeebug911@gmail.com

The above email is the account to use through Paypal if you would like to make a donation to help with costs for Jeni and Jude for necessary items. She is obviously not working at the moment and help is very much appreciated!!!

This was put here as simply a friendly reminder since I posted this information so long ago and have not mentioned it since May I think. I was asked by someone about it and thought it would be nice to include it again on here! =)

A note from Jeni....

Here is an update on Jude at the moment..... We are getting ready to go for a 2nd round of chemo this Monday. (Just as he is recovering from the last one, but that's how it goes.) Jude is doing really good this week, He is feeling great and has tons of energy. He's doing schoolwork now, and doing very well at it. We can't wait to get back to chep.!! He is walking all over the place. Still no appetite, but that's typical, and it probably won't return till chemo is done. It's ok though, because he is on the liquid food IV, and it's giving him all he needs. We are almost halfway done.!! Yay!! Thanks so much for everyones kind thoughts and prayers. We appreciate it so much!

More fun pics!!!

Jude sleeping with his telescope...

With Nana and Aunt Tracy!!! Happy little guy! =)

CORRECTIONS:

Okay, so I did mention in the beginning of this blog months ago that I would be correcting things if I wrote something wrong or remembered it wrong....doesn't happen often, but it happens. haha

SO: Jude is STARTING his second course of chemo at this time. He has not completed 2.

and, the little boy who passed away had "inoperable brain stem glioma". It was not medulloblastoma as I had thought from my visit.

Hope that clears things up and thanks Jeni for pointing those out. =)

JUDE!!!!! Yes, I am finally writing something! =)

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!