Judeebug! Playing and learning!

Playing Super Chex Hockey with Uncle Corey and Aunt Veronica!!! He loves this game!

About to look in a microscope with Dr. Shrinivasan after a lesson on cells!!!

Update from Jeni!!!!!

So we talked to the doctor today, and he went over the images with me (and Jude, who kept saying, "woe! it looks like a skull!") He says that everything looks very good. Everything has continued to shrink, including that questionable spot. He says there are only a few spots that he can see, which is a huge improvement from when we got here in May, when Jude's brain had 50 tumors, and remainders from the big tumor that surgery couldn't remove, plus tumors in the spine. So hopefully, these remaining spots will continue to shrink, even after we go home. (Radiation continues to work for years) To be honest, I am afraid to get too happy, because this kind of cancer can come back fast and agressively and at any time......but for now, it's great news and a relief! (for the next three months, anyway) Jude is getting another appetite stimulant...so if he can eat enough to maintain and or gain weight, we will be able to come home if he is stable. Docs havn't given us a date yet, they just have to monitor Jude's weight and his counts, and make sure he is eating and holding his own. Hopefully he'll be hungry soon....
Thankyou so very much again for all your prayers, love and support. It means so much...and we love you all!!

PS....Uncle Cory and Veronica came to visit, and had a great time!

Visits warm the hearts....

The beautiful fountain outside the Target House

Gina was able to visit!! What fun they had!!!!

A note from Jeni...

"Those pics were of Jude's no mo chemo party in the med room and in the hospital room. He Loved the confetti, of course. His immune system is 0, and we are waiting for it to come up. Meanwhile, today is the first day he actually feels good enough to walk to all his apointments in the hospital. He has been feeling really yucky, and has been having burning pain from the acid in his stomach and the tears in the mucosa lining that the chemo caused. Basicly the mucus lining from his nose down to his gut is raw. The doctors put him on Protonics to help heal that, and gave me IV meds for him so he wouldn't have to take so much by mouth. Thank goodness it has helped, because neither him or me has got more than 3 hours sleep at a time for a while!! He is doing good and looking forward to going home. Hopefully that will motivate him to eat when the time comes. Talk to y'all soon!! XXXOOO's!!!"

Finally!!! Last chemo treatment for Judeeee!!!! Yipee!

It has been a long haul for little Jude since he was diagnosed last April with Anaplastic Medulloblastoma. He had surgery to remove the biggest tumor the very next day after diagnosis. There were 50 other smaller tumors. Jeni had to make the important yet difficult decision to accept treatment in the form of radiation and chemotherapy at St. Jude Hospital in Memphis, TN. But this was the best choice for him. Jeni loves her little boy so much and has been there every step of the way. Jude is also blessed to have a daddy who loves and cares for him too and has made himself available to be there for the treatment. It has not been easy for them as parents. They were out there in the beginning of May and had 31 radiation treatments. Then they came home for a few weeks and flew back in August for the chemotherapy. 4 doses. These were very difficult and certainly unpleasant. His life has been very different these past 6 months. He has missed his family and friends back here in California. It was a privilege for me to be able to visit them twice during this journey. I went the first time at the end of May during his radiation. I stayed for a week. This was when his posterior fossa syndrome was still fairly severe and he was not even walking. It was during that trip that Jude also got his shunt put in. If you have read the posts from that time, I had to leave when they were in the ER still. It was a very emotional time for me. But what an appreciation for life, love and health I gained from this experience. I feel that I grew as a person and am thankful to my special friend for letting me come. I know she enjoyed the visit as well. She has had several visits from others...family and friends. These have been so very important to her and she has cherished every one.

I was also able to visit last month for a weekend. That, too, was a wonderful experience for me. I hold these memories close to my heart. Jeni and I laugh a lot...which I love!!! When I was there and had to leave (which I did not want to do) I joked with my husband about what would happen if I...say...."accidentally" missed my flight. Jude, sitting next to me, chimed in and said "Miss your flight". That was a highlight of my trip actually. To have this litle guy want me to stay!!! While talking to another mother there with her son who has leukemia, I expressed sincerely how much I personally had gained from witnessing first hand what has become routine for Jeni and Jude and other patients/families there. It is a big process every day for everything they do. I was in amazement to be honest. I watched Jeni take care of the TPN every night which is how Jude gets his nourishment. She has become a pro! It is different to be able to see the daily process rather than just hear about it. However, as I told the other mother as well.....this appreciation is still only as a bystander. I can not begin to imagine what the experience would be if it was my own child. Wow. I am very happy to be writing this since Jude received his FINAL chemotherapy treatment. He now waits for his counts to go up and to be eating....and hopefully come home next month!!!

He's done!!!! It's time to celebrate!

Jude getting his last chemo treatment in the med room. You can see his shunt behind his left ear.

Everybody sing...NO MO CHEMO!!!!!

Update from Jeni.... Last chemo is done!!!!!

"All in all, his chemo went much better than last month. He was throwing up blood on Monday, but he didn't throw up nearly as much as before. Tues and Wed, Thurs and today went very smooth with little or no vomiting! Wahoo! So now, our objectives are to recover from this chemo cycle as fast as we can, get back to eating, take a final MRI scan, and go home! His counts still have to bottom out to zero, which they will in about 4 more days, then, as usual, they will go back up when the stem cells engraph, which takes about 10 days after the docs infuse them. We are excited and looking forward to coming home soon....hopefully in about a month. Miss you all so much and thank you again for your thoughts and prayers!!"

A little silliness never hurt anyone right?

My visit to Tennessee!!! FUN FUN FUN!

The beautiful walls of the hospital!!!

Everything is a mural....
One home of MANY we saw that we loved...and the trees are amazing!

Departure night. Waaaaaa.... I did NOT want to leave!

Me and the nurse Ron had a ball. He is a wonderful person!!!!

Mural in the Assembly Hall!!!

A little Pac Man action. Jude is hiding under me. He is not too keen on pictures.

The playground outside the Target House. The place truly has everything!!!

Jude LOVES the Pink Palace. He loves to go there and get rocks for his collection!

Jude's adorable Make A Wish list. How cute is this simple little list????

Ron peeked through the curtain and Jeni let out a blood curdling SCREAM!!! hahahaha It was soooo funny. Then Ron AND Jude kept trying to scare her!!! haha

A little TPN preparation. This takes about 20 minutes. She is a pro now. But..man I was impressed. This is a detailed process. He is hooked up for 12 hours. This is how he gets his nutrition since he is not eating.

Yeehaw!!! We had fun. Notice even little Jude got his rodeo hand up! haha

In the music room. With the piano. Jude had fun on this!

Jude hid alot when I was taking pics. But that's ok. The fact that he was smiling and having fun with me was golden!!!! I love that boy!

Jude and the trees I brought from home for him. He had requests!

The play room in the Target House. Very cool!!!

The lobby area...and the Foozball table that Jude loves to play!!!

There are some things that remain the same. Starbucks!!!! Requirement!!!

The day I got there. Jude hides.... but he was a little chatterbox! hehe.

The kitchen in the apartment. So nice to have this!!!!

The living room area. Look at that cool desk!

The front of the Target House. Gorgeous building!

The entrance sign.

New Pics and an update!

As far as an update on Jude, He is at zero immune system again, and hopefully it will start to rise up in the next couple of days. He is doing great in all his therapies, like physical, speech, and occupational. All his therapists say he has come a long way and he has improved a tremendous amount.This third cycle that we have just finished has been a little tougher than the others. He has had a bit more waves of nausea/vomiting and tummy cramps than last time. But so far no mouth sores, no bone or joint pain, his liver and kidneys are functining good,and he is active when he feels good. So far no hearing loss, and his eyes have improved since last eye exam. He will get another MRI after his last cycle in November. Hopefully things will still be shrinking or gone! He has suddenly remembered that he loves trees, and wants all his favorite plastic miniature ones sent over!! (He has been so into Wii that he forgot about trees!) Hugs and kisses to everyone.!!!!! MISS YOU ALL!!!!!! I would also like to say thankyou to all those who were part of the tournaments for Jude. Your kindness means so very much!! Thankyou! I can't say it enough to everyone. Knowing there are so many people out there who care so much is very heartwarming. LOTS of LOVE.......Jeni

Jude being silly!!!

Viv and Jeni. Smiles galore!

More pics and a note from Jeni!

Jude is going in for his 3rd round of chemo already. We check in Sunday night if he is still doing well. He had an MRI yesterday to see how things are going, and the docs told us the spine is still clear, and the spots scattered through the brain are even smaller than they were before. There is one that seems to be no change either way but that is ok....they are just going to keep watch on it. If it doesn't change anymore, it could be just dead on the inside. We will find out later after the 4th round when they scan again. All in all, it's good news and definately progress is being made. We will just keep hoping and praying for the best. Thanks and much love to everyone!!

Jude, Grandpa and Jay!

Grandpa and Jude having fun...

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!

Jude in the ST. JUDE video!!!!

http://www.stjude.org/stjude/v/index.jsp?vgnextoid=1064211bb3f23210VgnVCM1000001e0215acRCRD&vgnextchannel=40f3211bb3f23210VgnVCM1000001e0215acRCRD&plt=NDMGENLKSULLY1000001

Some cute new pics!!!

Gramma and Jude

With friends...

This was from last week.....

This was an update Jeni sent me while I was on vacation....so when I get another, I'll add that too!!! =)


"So here's how Jude is.....we were released from the hospital today, and he is doing much better as far as the shunt goes. There is a little swelling that the neurosurgeon is checking out tomorrow by his belly, and hopefully it is ok. He just lost more weight because he didn't eat for 4 days because he was throwing up so much. They are gonna start him on some intravenous nutrition when the chemo starts to maintain his weight. He is in good spirits though, even though all this happened. Chemo is supposed to begin on Sunday...so we will be back in the hospital for 5 days while he gets it. Hopefully he tolerates it well. Love you lots, and can't wait to come home. Love,
Jeni"

In the hospital to check his shunt.....

Jude...looking happy...not vomiting anymore. They hope the shunt is working now properly. Scary for his parents to have him vomiting blood.....again...having the shunt, while necessary, is also something you always have to think about. =(

Jude in the hospital waiting to hear if his shunt is ok

The Target House where Jeni and Jude are staying for the chemotherapy portion of his treatment.