Andy & Jessica

I think Jude’s original brain cancer diagnosis was harder to take than the discovery of its recurrence. But, there are some harder parts about this time around. For one, the waiting game is brutal. Last time, he was diagnosed after we arrived at the hospital by ambulance on a Sunday and he just had to wait until the next Wednesday for the operating room with the intraoperative MRI machine to open up. This time, since it is not an emergency, we are having to wait weeks. The waiting is stressful and I know I’m not as productive as normal.

Asher is a little smooch. He’s such a happy boy. His little tongue is often wagging outside of his mouth, twisted to one side. It’s his way of showing he is extra happy. I’ve never seen another kid with such a waggy, twisted tongue. It’s very cute.

Levi demonstrates some pretty sophisticated computer skills for a new 2 year old. He knows his way around the iPad as good as me and moves from app to app like a pro. He really enjoys watching Cars in German on the iPad. I got him a new app last night in French that he just loves and that caused a couple good brawls between him and Jude. The first thing Levi likes to do each morning is to log onto the computer by himself (no password required), navigate himself to his favorite website nickelodeon.de (the German Nickelodeon site) and find and watch full episodes online of Umizoomi. Another of Levi’s favorite morning activities is to wait until he knows Andy is in the shower and then he’ll run upstairs and steal the iPad that is always sitting right outside the shower. It’s just amazing to me that he can do this techie stuff himself at age 2. But, with a techie for a dad and an older brothers to keep up with, I bet Asher will be doing that same tricks at an even earlier age.

Interesting development — a partner in my group googled functional MRIs and found that Seattle Children’s Hospital seems to be the best at fMRIs for small children, with a heavy neuropsychological component, where they coach and practice with the children prior to the fMRI.  I spoke this morning with the functional MRI technician at that hospital in Seattle this morning and she said she has a 50% success rate on 5 year olds.  I was almost ready to book a flight to Seattle for Jude and Andy when Andy suggested that I call our neurosurgeon to see if he thought it was necessary.

His secretary called me back and said that our neurosurgeon found that the fMRI was very successful and that he got everything he needed.  That is the complete opposite of what the MRI technician told Andy.  What a relief to know that it actually turned out.  I suppose I should just exercise my rights under HIPAA privacy regulations to access all of Jude’s medical records so that I can see what the providers tell each other since I’m clearly not in the loop.  Funny!

I’m really frustrated that Jude rose to the occasion, and that the functional MRI nevertheless didn’t work out. I really feel that if Abbott had the proper restraints, it would have been a successful scan and they would have gathered some valuable information to make the surgery less risky and more successful.

I’m looking into other options. Unfortunately, Amplatz Children’s doesn’t do functional MRIs and the U of M has a worse set-up for kids than does Abbott so they referred me to Abbott. I also called the Mayo Clinic. It sounds like they at least do cushions on either side of the head, but it doesn’t really act as much of a restraint.

I just don’t get what would be so hard about restraining his head during the scan. Heck, I can imagine it would be accomplished with a long shoe lace. But, there is probably some dumb government medical device approval process that the shoe lace would have to go through and Jude will be 10 before that process would wind up. Insane.

We had always heard about the great things Make-A-Wish does for children with life-threatening illnesses, but were not aware of all the other great charties that cater to children, such as Jude.

My favorite such charity is HopeKids. We joined HopeKids a few months after Jude’s brain cancer diagnosis. HopeKids provides an ongoing calendar of free events (like private movie screenings for HopeKids families, tickets sporting events, theater, etc.). The idea is to always give the children something to look forward to in order to encourage them to get through the next phase of treatment, etc. One HopeKids event that I’m really looking forward to is an upcoming brain tumor family picnic. The details of the event sound so fun, but I’m really looking forward to networking with other families and finding out more about proton radiation and any other treatment options.

Another great chartity we’ve learned about through Jude’s condition is the Ronald McDonald House, which provides free meals to families with a child in the ICU and sometimes free lodging (we save our pop tabs for this organization).

I also recently leanred about an organization called Icing Smiles. It is a nonprofit organization that provides custom celebration cakes to families impacted by the critical illness of a child. Although 6th Jude’s birthday is a year away, I recently requested a dream cake for him. Jude is already looking forward to coming up with design ideas and this is just the kind of thing that he needs to look forward to.

It’s remarkable that with all of the difficult things Jude has endured at Children’s Hospital (including brain surgery, stitches in the eye lid, stitches in his ear, and a stay for pneumonia), he always looks forward to going there. So, they are doing a great job catering to kids with the play areas, toys, video games, stickers, cool band-aids, etc. He is bugging us about how many more days until his surgery since he knows that Andy loaded the Android tablet with movies in Germany and French and Jude picked out his favorite XBox games that don’t require Kinect to bring — Plants vs. Zombies, Indiana Jones 2, and Pirates of the Caribbean. He’s looking forward to this so he really doesn’t know what’s coming.

Given that Jude is just 1 of 13 known kids across the world with the same kind of tumor in the same location as Jude’s, we really don’t have good data on what his future holds.

I’m hoping he kicks this cancer and grows up to be a neurosurgeon who can reassure all the scared kids he sees that when he was little, he had a head owie too, and that it didn’t slow him down.

Will the brain cancer/surgeries/possible radiation impair him? Will he still be with us in 5, 10, 20 years? Maybe it’s better just to pray for the best and not to know, but it’s so difficult living with such uncertainty about someone so precious.

Today was a big day.  We had to be at Children’s Hospital at 7:30 a.m.   Since our boys usually sleep in past then, I decided to put them to bed in their clothes for today instead of pajamas so we could get out the door on time.  My idea didn’t work out according to plan.  Jude had a bloody nose in the middle of the night and used his shirt sleeve as his Kleenex until I jumped out of bed to answer his screams.  And Asher wet through his clothes in the middle of the night and needed a new outfit when he awoke.  At least little Levi cooperated and then only needed his hair brushed, teeth brushed and diaper changed before our family raced out the door.

Jude’s functional MRI was at 9:30 a.m. at Abbott.  I got the anesthessiologist to agree to try the IV in Jude’s foot since it’s further away from his eyes.  Overall, the IV location worked out better than the hand, I believe.  Jude had to be awake during the functional MRI and we got to send in a parent.  We picked Andy since Jude tends to obey Andy more than me (I’m a softey).  Jude was given some drug that made him more relaxed than he otherwise would have been and that has some sort of amnesia-effect.  Jude was a trooper and really cooperated well during the functional MRI even though it was so loud in there and he was paranoid that people were poking more needles in his foot.  The problem was that while Jude was reading or moving his hands as requested, he kept moving his head.  He just couldn’t keep his head perfectly still for the required 3-5 minutes for each individual test.  In the end, the functional MRI was not successful and I do not believe they got any useful information from it.  Really big bummer.  I’m proud of Jude for rising to the occasion and trying so hard and being so brave, but, in the end, it just didn’t work out.  Too bad they didn’t have some way to restrain his head.  As my mom said, “He didn’t fail.  They failed him.”  Kind of true.

After the functional MRI, they put him to sleep and did a normal MRI.  I think the reason for another normal MRI (since he just had one 5 days ago) was because Abbott has a better MRI machine than Children’s and the neurogurgeon wanted better pictures.  They had Andy squeeze Jude’s hand during a part of it and were able to locate which part of Jude’s brain controls sensory function.  Apparently it is normal that motor function is controlled in a location by sensory function.  So, they think they at least know which parts of his brain control sensory and motor function.

After Jude woke up from anesthesia, he ate an orange popsicle, some graham crackers and some strawberry Jell-O and watched Cars on the TV.  We then went to Target and bought his a new XBox game and some Legos as a reward for trying so hard on his scan today.

 

My younger sister, Katie, is a professor in the biology department at NDSU and she also runs a lab where she studies colon cancer.  Katie’s research focuses on the link between diet and colon cancer.  My awesome mom (who is often right, but thinks she is always right) has always thought that Katie was meant to be doing what she was doing and that she was going to discover something great.   I’ve been hearing from my mom through Katie that Jude really needs to change his diet.  Of course Katie would never contend that Jude’s diet caused the brain tumor, but she thinks that maybe his diet maybe doesn’t help with his treatment.  Just so I feel like I’m doing everything I can do, I really think we need to change Jude’s diet so that he eats healthier.  Maybe this will boost his immune system and help him fight off any cancer cells that will remain after surgery.  This change will be hard since Andy and I are definitely not health nuts.  I made an appointment with a nutritionist in a week or so and then would like to have the house cleared of unhealthy food and filled with healthy food when Jude gets out of the hospital.

According to Katie the following foods are good and bad:

Bad foods that Jude eats:

Hot dogs, sausages, fish sticks, chicken nuggets, processed meat, Kraft macaroni & cheese, Velveeta cheese, artificial sweeteners, sugar, high fructose corn syrup, and grilled meat.

Good food that Jude should eat:

Nuts, fruits, vegetables, fish and chicken (not processed), leafy dark greens like lettuce and spinach, beans, peas, lentils, broccoli, cauliflower, strawberries, blueberries, applies, cherries, cranberries, dried fruit without preservatives, flax seed, low fat milk, whole wheat pasta (not refined), real cheese, spices, tomatos, multi grain foods, brown rice, 100% whole grain foods, oil that is high in omega 3 fatty acids, and plain yogurt.

Jude is such a picky eater so I’m hoping we can make some progress.  It certainly can’t hurt to try.