Andy & Jessica

This morning when Jude was brushing his teeth he said cutely, “Why does this toothbrush taste yucky? It tastes like it’s been in someone else’s mouth.”

Tomorrow is a big day for Jude. He will apparently be the first 5 year old that has ever undergone a functional MRI for this particular technican at Abbott. She was very hesitant, but somehow the neurosurgeon and oncologist must have talked her into it. I sure hope my stubborn little Jude can cooperate. I told him that the technician thought he was too little to do a good job and that it would be so cool if she could prove her wrong and be the first 5 year old to ever pass the test. He wins any XBox game he wants if he is able to cooperate. I have a call into Children’s Hospital to get more information about whether the dyes will burn when going through the IV, what questions they wil ask him and what ideas they have to hide the IV from Jude. I am interested in knowing if they can use the foot since Jude may not think to check if an IV is there after he stops daydreaming while on nitrous oxide when they are placing the IV. I also have to practice with him in the tunnel tonight and get him prepared for the loud noises he will hear.

Jude is scheduled for surgery to remove his cancerous brain tumor that reappeared after the earlier resection 1-1/2 years ago. The surgery will be on June 6th, with a pre-op MRI in the late afternoon on June 5th. That will be rough since Jude won’t get to eat or drink all day on the 5th. But, it’s just one of many things rough that will be coming his way.

We learned today that the technician who does the functional MRIs is hesitant to agree to do one on a 5 year old.  The oncologist and neurosurgeon who reviewed Jude’s neuropsychological testing are trying to convince her that with Jude’s super high IQ, that he is more like an 8 year old in the body of a 5 year old.  Given his fear of IVs, I think there is certainly a reason for her hesitancy.  But, given the stakes, I don’t understand why the functional MRI wouldn’t at least be attempted.

Jude had his vision and hearing checked this morning and everything is looking good there.

Tomorrow we are bringing him to an ENT specialist to look at him for frequent nose bleeds. They may be able to treat him on the spot in a painless manner. We figured since we’ll be satisfying our $12,000 family out-of-pocket maximum this year, we might as well get this done.

This all doesn’t seem to real to me. Maybe after they shave a large stripe through his hair then this will all seem more real. But, it’s good that it’s not feeling that real yet since I still need to focus on other things, like earning my paycheck.

Andy was busy this weekend as a delegate at a state political convention so I decided to take the boys to Litchfield for the weekend.  They love visiting their Grandma and Grandpa Forbes and Uncle Mike.  Jude and I went tubing in the freezing water.  I was really impressed with him.  He was so much more comfortable in the water than last year when he was a much less confident swimmer.  I was relieved when he said he was finally ready to be done since my arms were like spaghetti noodles.  Then he shocked me by saying he wanted to swim back to the boat.  Boy it was cold.

He decided not to try waterskiing, but I can’t blame him since it was so cold.

I then went barefooting for the first time since before I was pregnant with Asher.  It really does come back — just like riding a bike.  I did 3 runs, before I was ready to quit since it was so choppy that my feet were killing me and I wasn’t enjoying the water temperature.  Jude convinced to do a 4th run.  He wasn’t easily impressed.  Even my best tricks weren’t good enough.  He wanted me to “Do a jump!”

Given that Jude will be having another brain surgery in the next few weeks, it is unlikely that his oncologist will let him go waterskiing this summer.  Big bummer since I was really hoping he’d master skiing this summer and I know Mike was hoping he’d be barefooting like those cool, young girls on You Tube.

 

 

I’m pretty stressed out about the bad news we got yesterday and, as a result, didn’t sleep much last night. I think the boys must have picked up on the stress, even though we didn’t verbalize it much. They were up all night. I was bed hopping all night long, helping the boys get back to sleep.

Last night I came up with the idea of building Jude a tunnel so we could practice for the upcoming functional MRI. Jude and I gathered 2 large empty diaper boxes and taped them together and formed them into a cylinder shape. It is the boys’ favorite new toy. We practiced having Jude lay in there while we played Simon Says. I sure hope my stubborn little guy will cooperate for the real thing. I plan to bribe him with a toy or something, but I’m not sure that will prevent him from failing and freaking out about the IV. I need to come up with an idea of a way to bind the IV with something cool that will take his mind off of it.

I was hoping that brain cancer was just something in Jude’s past and that it was just one really bad week a year and a half ago when he was 3-1/2. Since Jude’s littlest brother, Asher, was conceived in the brain cancer blur period, I had even convinced myself that it worked out for the best that Jude got the cancer since we wouldn’t have gotten beautiful little Asher without it.  Our new reality is that Jude is not done battling brain cancer.

We went in today for one of Jude’s triannual MRIs and got the devestating news that his brain tumor is back. I’ve been so worried about it coming back since they always told us that if it came back, they would do do a resection followed by more aggressive treatment — including 6 weeks of proton radiation in some other state since Minnesota has no where to get such treatment. I hate the idea of radiation. The risks just seem too great to me — potential secondary cancer, potential vision problems, potential hearing problems, potential cognitive problems, etc. I hate the idea of my brilliant and amazing Jude losing functioning because of radition to kill some dumb smaller-than-microscopic cancer cells that just don’t want to die.  I don’t think they’ll be able to convince me to go along with radiation without at least another attempt at resection only, unless, of course, tumor #2’s pathology is more aggressive than tumor #1’s.

I’m frustrated. I feel awful knowing that Jude’s cancer really never went away. Here I mistakenly thought I had a healthy 5 year old, just like a mistakenly thought I had a healthy 3-1/2 year old the first time the tumor appeared. It turns out that the bright spot they were watching on the MRIs and thinking was scar tissue from the first resection was really just the tumor back to attack.  I hate that thing.

The neurosurgeon wants to do a functional MRI on Jude in the coming week, where Jude would have an IV to insert dyes to provide contrast on the MRI and where Jude would comply with the neurosurgeon’s instruction to touch this, do that, etc. Normally they never do such functional MRIs on children as young as Jude, but thought he could maybe handle it since his neuropsychological examination revealed that he has such a high IQ. We’ll see. Jude hates pokes and may just spend the time screaming, “Take out my poke! Right now!” like he did today after he realized they gave him an IV while he was, in his own words, “daydreaming” on nitrous oxide.  The functional MRI would assist the neurosurgeon in determining how much of Jude’s brain can be removed while trying to get all the cancer cells that are visible under a microscope.  They want to take out around the margins as much as possible without having a negative effect on function.

Jude will undergo brain surgery to remove the tumor likely in the next couple of weeks.  The same neurosurgeon who operated on him 1-1/2 years ago will do the surgery.  He was part of the team that stopped by to talk to me after the big reveal.  I told him that I had been hoping that I would never need his services again.  It sounds like the surgery should be simplier than the first time, since, kind of sad to say, the first surgery created a pathway through the brain to the tumor spot.  The surgeon anticipates using that same pathway to get to this tumor that is located in the same place as the first one, unless the functional MRI reveals that the planned pathway would be too risky.

We haven’t told Jude the news yet.  He knows he had a “head owie” when he was younger, but we never told him the seriousness of it and his memories of the week long stay in the hospital only involve great things like watching Astro Boy over and over and playing Kung Fu Panda on the XBOX.  I’m not sure how we are going to explain to him that his owie is back and what that means for him.  Knowing him, he’ll hate the pokes, but love the TV and video game time.  I just wish he could be a healthy kid and that I could stop worrying about him.

Every 4 months, Jude goes in to be anesthetized for an MRI to determine if his brain cancer remains at bay. I worry constantly, but I get extra nervous leading up to the scan. The moment of truth will be tomorrow afternoon when his oncologist walks in the room and tells us hopefully something like, “The scan looked good.” Then I will breathe a big sigh of relief.

I have to worry more than usual about the logistics of tomorrow, since Andy will be a delegate at a state political convention and unable to help me juggle our 3 boys during our full day of medical procedures and appointments. Luckily, my mom agreed to come with to help. I’m praying for more good results!

Our boys almost might as well be triplets. They are all boys. They all look similar and they act similarly. They are also all learning 3 languages at the same time. Of course they mostly hear English. But, starting when Jude was about 3 and when Levi was born, we starting introducing German. They both understand it very well. They watch most of their T.V. in German. Recently we also started introducing them to French, which Andy studied in high school. We were just going to introduce it to Jude and spare Levi since he’s still struggling with English, but we weren’t able to. Andy tells me that Levi is picking up French quickly. Well, he may not talk until he’s 4, but when he does, he’ll maybe speak 3 languages, which will be pretty cool.

It was apparently a circus as usual at our house yesterday. While I was at work, the boys were running wild, like normal. Andy turned away for just a minute and Jude ran down the stairs and Asher (who was crawling) decided to follow him. Asher fell down 3 stairs and then Jude raced up to catch him from falling further. Jude then called out to Andy, who then came to grab Asher from Jude. Apparently I was not supposed to hear that story, but Jude was thrilled to fill me in as soon as I got home from work. He was so proud of himself for saving Asher.