Andy & Jessica

Jude was throwing up and complaining of headaches. I called his oncologist’s on call doctor and he was worried about brain swelling so we took Jude into the ER, where we are now. Sounds like they want to do a CT scan. I am hoping Jude can lay still during it to avoid yet more anesthesia.

Jude had a bit of a rough night and had really bad headaches and threw up about 4 times.  I was glad I had put him on a twin mattress in our room so I could monitor him and have him closer to the floor.  He rolled off of the mattress in the middle of the night and I was there just in the nick of time to catch his head.  When he needed a change of clothes in the middle of the night, I ended up putting him in one of my t-shirts since his aunt and uncle and cousins were in his room and I didn’t want to disturb them.  I had no idea what t-shirt I was putting on him since I was doing it in the dark.  It turned out it was a nice, pink t-shirt.  The first words out of Jude’s smiley mouth this morning were, “Why do you have this on me?”

Overall, Jude describes the hospital stay as, “kind of good, not that good.”

The best parts were:

1.  Our nurse for check-in was a nice lady we know from our church.

2.  Our 2 pastors came from our church to pray for Jude and visit with us during the surgery.

3.  Family came to visit.

4.  The surgeon thinks he got out the entire tumor so that it is possible that Jude is cancer-free.  Although “time will tell,” we are told.

5.  After appeals to our nurse, the charge nurse and the patient care coordinator and using both the social worker and our oncologist’s RN as our mouthpieces for part of the appeals process, they finally permitted me to keep Asher (who is still breastfeeding) in the room with me and Jude.  That was one battle I was just never going to give up on and was just shocked that it was a battle.

6.  Andy and Levi got a room at the Ronald McDonald House within Children’s Hospital so they were close by.

7.  Without us asking for permission, the nurses turned a blind eye and let Levi (who is 3 years too young under the visitor’s policy) to visit Jude.

8.  Jude got the XBox running on his own within 1-1/2 hours after waking up from surgery and is the same old Jude.

9.  Jude got to watch movies and TV in English.

10.  Jude got some great presents.

11.  Jude got to eat unlimited popsicles and ice cream.

12.  Jude was encouraged to eat salty foods like bacon, french fries, chips and macaroni and cheese since he developed a mild case of Cerebral Salt Wasting Syndrome.

13.  Jude and Ivan’s trips to the fridge or “nutrition” room to get all the not-so-nutritious snacks like ice cream, popsicles, pudding, juice boxes etc.

15.  Jude and Ivan got in trouble for racing in cars Flinestone’s style up and down the halls of the PICU since there were sick kids who needed their rest.  Jude wasn’t one of them!

16.  Deloitte sponsored a carnival with face painting, carnival games and prizes, arts and crafts, etc. and an ice cream social that we attended on discharge day.

17.  Jude learned how to take medicine in pill form.

18.  We learned the tumor’s pathology was Grade II.  Although we still need to get that verified by the national expert at Johns Hopkins.

The worst parts were:

1.  They did a blood draw to check his blood type 2 hours prior to surgery without anything to make it more comfortable for him (e.g, no nitrous oxide, numbing cream, etc.).  That was pure torture for the poor boy.

2.  Losing a huge strip of hair and having a 6+ inch incision on his head and a head that is sewn up like a football.

3.  Waking him up at 12:30 in the middle of the night to give him an oral medicine that tasted disgusting.  He sure made the nurse regret ever disturbing him.

4.  Removing the central line that went part of the way to his heart and was sewn into his neck with 2 stitches.  Again, pure torture for the poor guy.

 

Discharged 48 hours after brain surgery — amazing. Thanks everyone for your prayers for Jude. God answered them. He’s running around the house with his cousins and the discharge nurse made sure to put in the charts that he is too active and that she instructed us to encourage “quiet play.” Not going to happen.

Jude has had a busy day. He got up at 5 a.m. and watched Cars 2 with me and asked 100 times when he was going to see his cousin Ivan. He then went back to bed for 2 hours to make the time go faster. A physical therapist came by to check Jude over. Jude was really dizzy and did not want to get out of bed until I reminded him that he had to get ready to play with Ivan. That sprang him to life and by the time Ivan came at 9 a.m., Jude was walking the halls. He and Ivan drove cars Flinestone’s style up and down the halls of the PICU until a nurse finally told them that there were sick kids who needed their rest and that they had to drive them in the playroom. They played all day. One of their favorite activities was to raid the patient fridge that contained ice cream in 4 flavors, popsicles, pudding, juice boxes and chocolate milk. Jude even wrote a song and choerographed a dance to go with it that goes, “We will never run out of treats!” I bet they made 10 trips to the fridge. They also played XBox and with Jude’s new toys. Jude even jumped off a couch but we had to put a stop to that.

Our oncologist spent about an hour and a half talking with us today. She is amazing. She is going to do some research for us and talk with all the national and international experts to help us decide whether to proceed with the standard proton radiation treatment. It seems risky, given his age and I would like to avoid it if I feel it would be safe to do so. She said that given how smart he is, he has a large buffer and any cognitive impairment would make him normal functioning. But, that is not something I want to sign Jude up for if it can be avoided.

No final pathology yet from Children’s.

The word from the representative of the neurosurgeon is that he thinks he got the entire tumor and all the microscopic cells, but “time will tell.” Certainly not the most comforting statement, but I know they cannot promise anything more.

Jude is supposed to get out tomorrow!

Jude has been potty trained for years now but I was unable to convince his PICU nurse that she shouldn’t put a diaper on him. Jude noticed he was wearing a diaper and he was disgusted. Andy said, “Those are special hospital underwear that you can pee in.” Jude responded: “It’s a diaper, you silly!”

When Jude had to take his first ever medicine in pill form and it tasted yucky, he freaked out about how bad it tasted to his taste buds and said, “I wish I didn’t have a tongue!”

The surgery went well. The neurosurgeon used the same 5-6 inch incision as he used last time. He was able to remove the entire tumor and every cell he could see under a microscope. They put Jude in the intraoperative MRI and used contrast to verify that the entire tumor was removed. They gave him 2 titanium plates this time and just 4 screws. Last time he got 3 titanium plates and 15 screws, which were removed. As Andy pointed out, Jude has a partially bullet proof head. I know that would freak Jude out now, but he may think it is cool when he is older. Our OR nurse from Children’s was awesome and gave us so much information during and after the surgery. She even told us something that she apparently was not supposed to tell us — that the preliminary view of the surgeon and pathologist was that the tumor was a Grade II rather than a Grade III. We will get Children’s final pathology by Friday, and I think a slide will still be sent to the doctor at Johns Hopkins who defined the difference between the Grade II and III. Jude was out of surgery by noon and his surgeon was a man of few words, as usual, and just said again that it went well and that we would be pleased.

Jude
was brought to the PICU after surgery. They wouldn’t let us see him right away and was already awake when we were allowed to see him. He was pretty upset about all his IVs and didn’t like discovering the central line that is stitched into his neck.

He is going so great. He went right to work asking for popsicles and presents. He ate a popsicle in each color and made quick work opening up the presents I brought for him. He insisted on seeing all the XBox games and was playing XBox within an hour of waking up. He has even gotten out of bed to go to the bathroom and has eaten a huge dinner. He is going to recover in no time. Thanks to everyone for praying for him! God really was holding Jude in the palm of his hand today.

Jude had an MRI of his brain and an MRI of his spinal cord today. The spinal cord MRI would be new information and I think that it must have turned out okay or I would have thought the radiologist would have tracked us down by now if he saw something really troubling. Jude really hated getting the IV, but otherwise tolerated the procedure fine. He sure slept from the anesthesia and we were stuck at the hospital until about 7 p.m. Jude got a Happy Meal (which we rarely splurge on), which will be his last meal for quite awhile. He can’t eat again tomorrow since his surgery is right away in the morning. I’m not sure this whole thing is really sinking in yet for me.

I heard back from Jude’s oncologist with answers to all my questions and finally understand why she wants Jude to undergo proton radiation treatment since his tumor has recurred.  I wanted to not take such a step unless the tumor came back a 3rd time after this next resection because of the risks of radiation — potential vision loss, hearing loss, cognitive problems, growth problems and secondary cancer — and because such treatment is 6 weeks long and not available in Minnesota. 

Apparently she doesn’t want to mess around with this because if the ependymoma spreads to the spinal fluid, it will coat the whole surface of the brain and go to the spinal cord and then surgery alone is not curative.  Instead, surgery, chemotherapy, radiation of the whole brain and spine would be required in a last ditch effort to save his life.  In other words, the prognosis of metastatic ependymoma is very poor and most likely would result in his death.

This is a very difficult decision indeed. 

 

This afternoon is Jude’s stealth MRI in preparation for surgery on Wednesday. I got him up early this morning so that he could get some food in his stomach since he can’t eat anything between 7 a.m. and the time he wakes up from the anesthesia from the MRI, at probably 5 p.m. tonight. That will be a little brutal for him to go through a day without food. Today could be tough for me, watching them shave off spots all over of his head so they can put on the little stickers that will act as the GPS to help the surgeon find the tumor. I’ve been having him grow out his hair so he can do a comb over for awhile after surgery.