Here's the other side to our sob story!

Although we have been feeling upset and depressed about the current news regarding Matthew's tumor progression, I thought I would take a moment to reassure you that, in our day to day life, even we have to remind ourselves that anything is wrong!
Matthew is doing and feeling so WELL 95% of the time. Just two weeks ago we took the whole family skiing (well, Jake didn't ski..... and I was there mainly as photographer, but everyone else skied and had a wonderful time)!
This was Matthew's second time skiing this year - he enjoyed this time more than last. The first time he went, he spent the majority of the time on his bottom. This time he was complaining about going, but we finally talked him into it, and by the end he was really enjoying himself.

Here's a video of Matt and Will following their instructor down 'Little Beav'. Will is in the front, in the orange coat, and Matt is in the blue coat.


Will, waiting for his class to begin:


This was sort of a funny moment. Before the day of skiing began, Matt was not very happy about being there! He was whining about wanting to 'go home' or 'just wait in the car'. We finally talked him into skiing, but he was still not happy about it at all. Around the lodge, there is a gentle little slope with benches. We sat the boys on the benches and helped them get all ready for skiing. The other boys made it down the little slope without incident, but Matthew didn't want to slide down. Eventually, we convinced him to 'ski' to us. He started down the little hill and was just howling. He forgot to snowplow and crashed right into Warren - who had braced himself to stop Matthew! We didn't mean to laugh, because Matthew certainly didn't think it was funny, but we couldn't help ourselves - it was hysterical! :-)


Here is a video of Will skiing down the aforementioned slope before Matthew.


Nate, just being cute!


Nate and Drew waiting for their blissfully unaware instructor. At this moment he didn't realize his next several hours would be spent attempting to keep two 4-year olds upright on skis. He did a wonderful job with the boys, but I believe he earned his money!


So, as you now can see, our life is really pretty 'normal' right now. We are doing our best to keep things fun and light and optimistic. I read somewhere (probably my PBT (Pediatric Brain Tumor) message board, where I get LOTS of wisdom from parents who are further along this journey than we are) that there's no point in saving a life if you won't allow the person to LIVE that life. I often want to shelter Matthew and to keep him away from experiences that are challenging for him or where he has the potential to get hurt. However, I have to realize that there will likely be a time when he IS too sick to do these things. I don't need to cut them out during a time when we don't have to! For those of you that don't see Matthew each day, please be reassured that he is busy living and the cancer treatments are only a small part of his full and active life!

Rookie Mistakes

Even though Matt has been on chemotherapy for the past 8 months, our family has gotten quite good at ignoring that fact. Matthew has had NO symptoms to speak of. He still has all his hair, doesn't get terribly tired, and the nausea has been easily kept under control with the Anzemet he uses on days we give the chemo. On Wednesday he started this new chemotherapy (CCNU) and is on a very high dose. We were instructed to give him the anti-nausea meds for two days and then more if needed. He hasn't been too sick. Today, after a fun time at the Discovery Children's Museum in SLC, we decided to stop at Red Robin for dinner. Walking in Matt said, "I feel a little bit sick - I must just be hungry." As I go to sign us in for the wait, I am surprised when my cousin comes up behind me. I'm visiting with her and start looking around for Warren. My cousin tells me he's by the door. I look over and there's Warren frantically waving me over. I walk out the door and Warren informs me that Matthew has just thrown-up. THANKFULLY, Warren was right by Matthew when Matt said again, "I think I'm going to throw-up, but it's okay because I brought a bag." Warren quickly steers him outside and Matt proceeds to throw up in the bag (which I didn't even know he brought!) Unfortunately, the bag had a huge hole in it..... That would have been a classic moment in Red-Robin had Matt proceeded to throw up in that bag in the crowded foyer!
Warren and I loaded the boys back up into the car. We both felt like this was a little message from above saying, "You've been warned........" I know the symptoms that are supposed to hit Matthew eventually will - and I can't help but think that it will be on this aggressive chemotherapy. Now, we just need to make sure that we are prepared to handle those side-effects! Tonight I made Matt several little 'just in case I throw-up bundles' to carry around in his pocket at all times. I just rolled a gallon size Ziploc baggie up tightly and put a small clear rubber band around it. This creates an easily portable bundle with a non-holey bag that can be zipped up and easily tossed in the trash if Matt has to use it.

So, we've learned a lesson about being prepared today! Other parents with children on chemotherapy are probably laughing at us right now because of this Rookie mistake!

As I read back over this post, I can't believe I talked this long about throw-up!

Not good news MRI - SOB!

I can't believe it's been an entire MONTH since I last updated! I suppose we were just basking in our delight at an MRI that proclaimed improvement. This morning we went to Salt Lake assuming the news would remain positive, or at least stable. What we weren't prepared for was this MRI report:

Examination: Brain MRI, without and with intravenous MRI contrast, 25 March 2008, 11:18 a.m.

Comparison: 25 January 2008

History: Primary malignant brain tumor, Pilomyxoid astrocytoma partially resected.

Findings: There has been interval enlargement of the heterogeneous mass that is centered in the suprasellar, anterior inferior interhemispheric, and septum pellucidum. The maximal craniocaudal dimension is 5.8 cm previously measuring 5.3 cm, width is 4.7 cm previously measuring 2.9 cm and AP dimension is 4.1 cm. previously measuring 2.9 cm. I see no evidence of remote CSF tumor spread.

In addition, there is progressive right more so than left lateral ventricular dilation. The third ventricle is unchanged.


Sooooo, in English, we learned that the tumor has grown. In two months it has grown half a cm front to back, and nearly half an inch both in width and top to bottom. The ventricles surrounding the tumor are also more dilated which indicates the spinal fluid might not be draining properly, which means a shunt might be in Matt's future. The good news is the part that says "no evidence of remote CSF tumor spread." Dr. Lemons talked to us about some options. We could begin radiation right away. I am nervous about this option because of the permanent damage that radiation will very likely cause to his endocrine system. The longer we can put it off, the better. I also like the idea of Matt finishing out the school year. Academically, I'm not worried about him, but springtime is the nicest part of the year! I want him to be able to enjoy these last weeks of school - because school defines who he is. Since radiation will be every day, he would not be able to attend school for the remainder of the year. The other option presented to us was a more aggressive chemotherapy regimen. The protocol is a six week cycle in which Matthew would take 3 different drugs. There are certain drugs taken each day for 4 weeks and then a 2 week break. We decided to try the chemotherapy for the hesitations about radiation that I already mentioned. Matthew will start tomorrow on Lomustine (also known as CCNU). We wait one week, and next Wednesday will go back to Primary's for an IV chemotherapy called Vincristine. That same day Matt begins Procarbazine, a pill that he takes at home everyday for 2 weeks. Eight days later there is another dose of Vincristine and then a two week break until the next cycle.

I am so anxious to see how he will handle this chemotherapy. With the previous two types, he has handled everything so well! The carboplatin made him sick, but I think we are much better equipped to deal with this possiblity this time. I have IV anti-nausea medications (3 different types!), as well as IV hydration that I can use if he can't keep food or liquids down. His blood counts have remained in the normal range for the past 8 months - with the exception of the first month, but I am beginning to suspect that was a fluke! Now we are beginning something new and that is always scary. Scarier than the side-effects, though, is the possibility that this chemotherapy will also fail..... I just want something to work so badly!