Really sad day......

Today Matt and I attended the funeral for Marcus. It was a beautiful service. There were hundreds of people in attendance, many of them high school students. Marcus played in the marching band for his high school, and I lost it right before the service when the entire marching band marched in dressed in their full uniforms. To see such solidarity and support from these special teenagers was really moving. After the service the band lined up in two rows to make a path and the casket was carried between the rows, then the family followed. Although it was sad, the service was very uplifting. In our LDS faith, we believe that life on earth is a small part of our eternal life, that it is a time for testing and trial. We believe that when we die we will be able to see our loved ones again. This doctrine was repeated many times throughout the service and it brought me comfort. The most difficult part of the day was seeing Karen. My heart was breaking for her. To watch your child suffer and then accept a reality that children shouldn't have to face must have been so difficult. It makes me so sad and terrified that brain cancer is taking so many children. Since Matt's diagnoses, I have known of 2 other children in this valley with brain cancer. They are both gone now....... Matt's diagnoses is slightly more positive. He has a grade 3 Pilomyxoid Astrocytoma rather than a grade 4 Anaplastic Astrocytoma, but I still get scared, and I still think this awful disease shouldn't be taking our children away from us. Today was a somber day of reflection.

Prayer Request!

Please say a prayer for my friend, Karen, and her son Marcus and their family. I mentioned that Marcus had a recurrence of his cancer a few posts back, and he is failing fast. I feel so heartsick for their family. I've met Karen several times (we both live in Cache Valley), and she has been a source of strength and support to me. They need prayers of comfort during this time!

I can't believe Jake is nearly one - and other stuff!

Today Matt had an Oncology clinic visit. It was just a check up and resulted in nothing terribly exciting. His counts look good. He always looks and acts as healthy as a horse - particularly when you're comparing him with some of the other kids in oncology! We always feel incredibly blessed with Matt's relative health when we are there. Carolyn came with us and it was wonderful to have an extra set of hands. Jake was a little tired and cranky so it was so helpful when she took him for a little walk so we could visit with the doctor.
After leaving the hospital we went to Crown Burger (mmmmmmmmm, Crown Burger.......) for lunch and then I had scheduled Jake to have his photos taken. Being the slacker mom that I am, Jake has never had professional studio photos taken. Now, it's not quite fair, since we've had Diana living with us and she takes some AMAZING photos of him all the time, so he hasn't been totally neglected on the photo front! Anyhow, my cousins wife works for Kiddie Kandids and so I made an appointment with her. My little man looks so grown up!


This photo is one of my favorites because it so perfectly captures Jake with his 'magic bunny'. I'm sure I've mentioned Jake's 'lovey' on here before. I found this bunny at the store and he fussed until I handed it to him. As soon as I let him hold it, he put it up to his face, put his thumb in his mouth and became the happiest, most content baby on the planet. Hence the name, 'magic bunny!' I wanted to capture the love Jake has for this soft little toy, and I think this photo comes pretty close!


Lastly, on a whim, I threw in Jake's Halloween costume. I am so glad I did! I actually bought a large 8x10 of this picture that I plan on framing and putting out each year. He is a skunk (if you couldn't tell), and on the bum of the skunk are the words, "Little Stinker" that you can see when he crawls around. He is so CUTE!

See, maybe we WOULD have cute girls!

Diana has a large collection of wigs that she brings out at Halloween. My boys love putting them on. There's something about a wig that really turns you into someone else. In Nate-a-lina and Drew-n-fer's case, it turns you into GIRLS! :-)

My weakness (well, one of them........)

Is there anything on the planet more fantastically indulgent than a fine hotel? Warren and I have had the opportunity to stay at some pretty amazing places. Right now we are at the Four Seasons in Chicago. The linens are sumptous, the service is amazing, and without our children, we are enjoying ourselves immensely! In fact, they 'upgraded' us to a 'residence'. We are in a Four Seasons apartment. It has a large living area, full dining room, and a kitchen along with a large bedroom. We're feeling pretty spoiled!

Lobby of the Four Seasons in Chicago - oooooh la la!


Some other wonderful places we've stayed:
The Intercontinental, also in Chicago. We often stay here when we visit Chicago. The pool is spectacular!


The Swisshotel in Boston was the beginning of the end for me. Warren and I 'Pricelined' a hotel and ended up with a wonderful price for the Swissotel. I was so comfortable in that room and I think I enjoyed it a little bit too much! Before this experience, I was perfectly happy in a Motel6 and I figured a hotel was just a place to sleep when you couldn't be home. Now I know, though, that a stay at a fine hotel can fully rejuvinate me.

For our 10 year anniversary we stayed at The Boulders in Arizona. This resort has these darling little individual cabin type rooms called 'casitas.' They are open and airy and each has a real wood fireplace. One of my favorite memories of our trip was waking up early and sitting out on our own private little balcony, wrapped up in the warm blanket available in our room, reading the newspaper and drinking a cup of cocoa - Heavenly!



Our very favorite hotel is the Grand America in Salt Lake. When Matt was sick, after 10 full nights staying at the hospital with him, my mom talked Warren and I into taking a night away. We booked a room at the Little America, but they were full so they moved us over to the Grand. It is THE nicest hotel I have ever stayed at! The bathroom was all marble, the furniture was beautiful and comfortable, the bed was heavenly. We even got room service that night and the food was so good.


So, now you know my weakness! I enjoy being pampered at a wonderful luxury hotel. It is so fun!

Sweet prayers.

I am so thankful for the faith and steadfastness that I see everyday in my little boys. They continually pray for Matthew. Every morning, mealtime, and evening, whoever is praying asks that Matt can 'feel better' and that his tumor can go away. Last night Will was offering the prayer and he asked that Matt could feel better. Then he went on to ask, in the sweetest and most humble little voice, if Heavenly Father could help Matt's tumor to shrink and asked that, "it might shrink and shrink and get so tiny that it is just gone." That is what we all hope for, stated so eloquently by my barely 7 year old. I believe that the faith of my children is necessary for me to maintain my faith. They teach me lessons everyday. I love them all so much!

Unreasonable people - or good reasons not to fly FRONTIER AIRLINES!

Warren travels quite a bit for his work, and I think he's a pretty savvy traveller. Today he had an experience that was just horrendous! He was supposed to fly out of Midway airport at 8:00 p.m. on FRONTIER AIRLINES. He arrived and attempted to check-in. Apparently, though, he was only 38 minutes early for his flight. FRONTIER's policy is that you must check in 45 minutes prior to your scheduled departure time. Warren was not checking any bags and there was no line for security (and the recording over the airport intercom kept telling travellers to be sure to arrive at their gate at least 20 minutes prior to departure........). He was plenty early - I'm not sure he ever arrives any earlier, but he usually doesn't fly FRONTIER. To top it off, they wouldn't book him on a flight tomorrow unless he paid a $150 change fee plus the difference in the cost of the ticket tomorrow - and there were no flights in the morning. He was treated rudely at the desk by a girl who kept insisting that he should arrive at least 2 hours early for any flight. Then he called them and was even more horrified at how rude they were on the telephone. Apparently, to fly stand-by, you must fly on the same day your ticket is scheduled........ and since Warren was on the last flight of the day they won't let him fly stand-by tomorrow. So, he finally found a flight with Southwest that leaves early tomorrow morning. For only $400, he gets to come home! Lastly, the hotels at Midway airport are all completely booked. He even called the travel agent associated with his firm and they confirmed that there are no hotels at Midway tonight. Apparently, they are full of travellers who attempted, and failed, to fly FRONTIER. I guess he's going to tuck in for the night at the airport. It doesn't seem worth it for him to go all the way back into the city (to sleep on the floor of his office), only to turn around and come back at 4:30 tomorrow morning.

We flew FRONTIER on our last trip to Chicago and had a 4 hour delay (getting us into the airport at 2:00 a.m......... with 5 children), but that was weather related, so I guess understandable (even though other airlines were flying into Denver). Then, on the way back, we tried to change our tickets to extend our trip a day with no success that cost less than $1800.

Between these two experiences, I don't think we will be booking with FRONTIER ever again, even if they are the cheapest!

My apologies to Janiel and Steve for this rant! Steve is our neighbor and a Frontier pilot, but we hear he has nothing to do with the policies or procedures, so we hope he won't be offended!

Now you can see for youself!

We have been wanting to post some MRI pictures from Matt's recent surgery. It has been a bit of a challenge to get all of his MRI's onto a CD. The ladies at the imaging department are fantastic, but I'm not sure they are asked very often to put as many MRI's as Matt's had on a CD. It took us two tries of going in there before we had the scans we needed!

This scan is from the first part of June. After Dr.Walker (the Neurosurgeon) saw these, he felt pretty strongly that we needed to drain the cystic portion of Matt's tumor. It's the big balloon looking portion on the top left of the tumor. You can see how this cyst could make judging the size of the actual tumor a little difficult! The cyst would fill and empty with fluid, constantly changing, and creating quite the challenge for the neuro-radiologists! Also, even though the cyst wasn't as dangerous as the tumor, if it gets too big, it can block ventricles and cause nasty symptoms, as well.



This is the MRI that was just done last week. I believe that why we were so ecstatic is pretty obvious! Even though the surgery turned into more (much more!) than a simple reservoir insertion and draining, the amount of tumor and cyst that was removed is remarkable and it was SO worth it! HOORAY FOR MODERN MEDICINE!!!

Wonderful Will!

Today, Will brought this assignment home. I thought it was so cute! He is becoming more excited about school - becoming a fluent reader was the key. Now he loves to read and it's helping him feel more confident in school. I love that one of his describing words for himself was intelligent - and love the way he spelled it even more!

What a great day!

For the past 8 weeks, our family has been in 'denial' mode. With Matthew's break from treatment, it's been easy and wonderful to just pretend our life is 'normal'. Without constant appointments, MRI's, and chemotherapy, we haven't talked a lot about the whole cancer/brain tumor thing. We did fish, canoe, swim, hike, play, have 4 birthday parties, vacation in Chicago, begin school, and otherwise fully enjoy the rest of our summer.

Monday afternoon we started up again with a nice refreshing dose of reality. Matt had a follow-up MRI at 7:00 Monday night (really, our appointment was at 7:00p.m. - isn't that weird?!?) Then, Monday morning he had his MRI of his brain, followed by a visit to Oncology, and finished up with a visit to his Neurosurgeon. We had an overwhelmingly positive day. First, the MRI of his brain showed the tumor was a bit smaller than it had been immediately after surgery. This, apparently, is because his brain was so swollen the day after surgery. Secondly (and this is HUGE, so brace yourselves), there were NO TUMORS IN HIS SPINE!!!!! We feel like this is a true miracle. His spine has shown marginal improvement with each spinal MRI, but to say there are no tumors is just amazing. Perhaps they were just the residual blood from when his tumor initially bled, perhaps the chemo really attacked them, but whatever they were, they are gone now! The report came back saying something about 'fatty tissue in the bone marrow' that is typical after a patient receives radiation treatment........ but Matt's never had radiation. We are so grateful for this amazing change. Lastly, his Neurosurgeon was very pleased with how well he is doing. We are so very lucky that with the size and location of Matt's tumor, coupled with 2 extremely invasive surgeries, Matt has virtually no side-effects. Some common side effects might be extreme weakness in one side, seizures, foot drop, personality changes, cognitive difficulties, etc..... Matt has none of that and our Neurosurgeon was really happy - as are we.

We know we are so blessed to be at a current 'up' in our roller coaster ride. On Monday, we learned that a friend (Karen) just hit a 'down' with her son Marcus. After a year of being 'cancer free', his tumor has returned with a vengeance, and is now tumorS. So, even in our happiness, we are sad for children who are backsliding. This disease is so awful. The ups and downs take a tremendous toll on children and families. So, as you pray and are thankful for Matt, please remember to pray and bless Marcus and his family as they continue another really difficult part of this journey.

Summertime!

I sort of lost my camera for awhile, so I haven't posted any pictures in ages! When I found it, I had several hundred photos of some of the fun things we've done this summer. This montage is several things we've done. First, Warren, Aspen, and the boys went jeeping one Saturday morning over Monte Cristo (between Cache Valley and Eden). Then, Warren and Will went on a long, hard hike up to the Wind caves in Logan canyon. The whole family hiked the short and lovely Limber Pine trail at the summit of Logan canyon, and lastly, we took a trip up into Bear Lake and spent a day hiking in Minnetonka cave. The cave was incredible! Nine 'rooms' all very different and very cool.


We are so happy that Matt has been able to participate in such fun activities this summer. He has kept pace with everyone and isn't having a bit of pain or complication. He feels wonderful. We are going on vacation to Chicago next week, and then school starts, and then the next week we have the appointment for Matt's MRI and our big appointment to figure out the next step in this journey. As for now, we are just enjoying the normalcy of our summer!

Photo and video editing at www.OneTrueMedia.com

Morphing!

Thanks to my cousin, Karrianne for this celebrity morphing thing! I have wasted too much time on it this morning. I thought it especially interesting that Nate and Drew didn't even have ONE common match. Since they are identical twins, I thought they would at least have some features in common........ :-)
Maybe someday I'll be brave and post the morphs for Warren and I - especially the one of Warren morphing into Whoopi Goldberg - it's great!

Nate

MyHeritage: Family trees - Genealogy - Celebrities

Drew

MyHeritage: Celebrity Morph - Genealogy software - Geneology

Matt

MyHeritage: Family trees - Genealogy - Celebrities

Will

MyHeritage: Celebrity Morph - Blank family tree - Roots

Jake

MyHeritage: Celebrity Morph - Pedigree charts - Free genealogy

Quick update.

Dr. Lemons (Matt's oncologist) called today. I wonder if doctors know how much it means to parents when we receive calls at home from them? When any of our doctor's call us personally, they get HUGE POINTS in my book! Anyhow, we talked about Matt's surgery and about 'the plan'. At the next tumor board, Dr.Lemons will present Matt's case and they will decide on chemotherapy agents and discuss radiation. Dr.Walker (the neurosurgeon) said it looked like the chemo was working (YEA!) since the tumor had pulled away from the ventricles and seemed more solid than it had last year. For this reason, I like the thought of Matt remaining on chemotherapy. However, which chemo has been working? He was on Temodar for 6 months and has only had 2 rounds of PCV..... It seems much more likely that the Temodar was the one affecting his tumor. I think that some kids are on PCVT (so Procarbazine, CCNU, Vincristine, and Temodar all at the same time). We'll just have to be patient and see what they recommend!

So, in about 4 weeks we are going in for another MRI to get a baseline of the tumor. This time frame gives any swelling a chance to go down, so we can get a true look at his brain. At that time we will begin chemotherapy again. I am quite excited, though, because this break means Matt gets a gift....... a whole month of SUMMER without worrying about treatments or trips to the hospital. Wooo-Hooo!

Matt is still feeling great. He had labs drawn today and everything was perfect. He didn't want to nap today, and he didn't even take a Tylenol! He insists there is no pain and based on his behavior, I really believe him.

More Blessings!

Yet another miracle this week! Yesterday morning, they let Matt go home. He is doing wonderfully. We were able to help him shower on Saturday - isn't it amazing how much better you feel when you are clean?!? For his last Craniotomy we requested they shave his entire head. It was very convenient to keep his incision clean. This time we sort of were thrown into the whole major surgery thing rather quickly, so he kept his hair. It was so SKUNKY! They use this gunk to slick the hair away form the incision during surgery, plus they clean the site well with iodine, plus they put numbing cream on the drain site, plus he had 2 IV's in his head during surgery, plus he had several circles shaved off his head for the 'markers'. His hair was disgusting! It was so nice to finally wash everything out (very gently, of course!) When we rinsed it the first time, the water was rust colored from all the crud in his hair - YUCK!

That was a little tangent - sorry! So, Saturday Matt really did well. He was up and walking by himself, with no support! He was using the restroom, eating well, and just amazing everyone around him with how well he was feeling. In fact, I bought him a 300 page book the day before his surgery. He read a bit that morning while we were checking into surgery. He read THE REST OF THE BOOK in the 3 other days he was inpatient! On our first walk after surgery, Matt was in a wheelchair and we were taking him out onto the patio for some fresh air. Matt was reading his book while we walked the halls and we passed the Neurosurgery team as they were doing their rounds. They were all shocked that Matt was reading - it was pretty funny!

So we are home, just letting Matt rest and get better through this week. He is feeling very well and I keep having to force him to lie down and rest. Now we wait to figure out the next step in our 'plan'. Hopefully it will involve continuing chemotherapy since it seems like that is working. Then, maybe, we can keep radiation 'in our pocket' until we absolutely have to use it.

A*M*A*Z*I*N*G!!!!!!!

This morning Matt had his MRI. We are so thrilled that Dr.Walker was able to remove a LOT of his tumor! I don't have a percentage or anything but I did see the scans. The huge balloon looking portion of it is totally gone. The ventricles are all clear, and about half of the white solid tumor is gone, as well. Dr.Walker was, again, just overjoyed. You could tell he was pretty darn thrilled with himself. Today he was excited to see just how much of it was gone and also to see that there was almost no bleeding. Bleeding is one serious complication that we are happy to have avoided, particularly given Matt's history of his tumor bleeding.

So, of course I wondered if it might be possible to do yet another craniotomy on the left side to see if we could get out the other half of the tumor! Dr.Walker didn't dismiss the idea, which I see as positive! Of course we aren't going to do it tomorrow, or anything, but in the future it might be a possibility. Total resection (removal) of the tumor is like a dream I hadn't ever dared to dream. Now the possibiliites for Matt's complete recovery and healing seem endless!

YEA FOR GOOD NEWS!!!!