Hmmmmmm....... Do you think it's time for an update?

Merry Christmas and Happy New Year!

I'm not quite sure where to begin this update. Lots has happened, most notably Matthew getting his December scans last week. I was so anxious in the days leading up to the MRI's, I think I made myself physically ill. At some point I realized that MRI's have NEVER resulted in good news for Matthew. Initially the scans were for diagnoses (obviously not good news). Then there were more scans that showed the significant seeding and spreading of the tumors into the spine. Then there were scans that confirmed the seeding. Two months ago were the scans that showed the tumors had gotten bigger and were showing more activity, despite the chemotherapy Matthew had been on for two months. No wonder I was feeling so anxious about these! The news we received last week was again a mixed result. Part of the main tumor was larger and part was smaller. Who knows what this means?!? Also, his ventricles were slightly smaller so less hydrocephalus (YEA!!), and the tumor seeding in his spine and brain stem was stable (YEA, again!!!) So, the current plan is to stick with the Temodar for 2 more months and re-scan. Hopefully we will then have a very definite idea if the chemotherapy is effective. Matt just completed his third round of Temodar and again seemed to handle it pretty well. He did throw up a little bit this morning, but insisted he didn't think it would happen anymore and that he felt well enough to go to school. They haven't called yet, so I assume no news is good news!

I am so thankful that we were able to postpone scans until after Christmas. It made for a really nice holiday! Matt felt really well since he was 5 weeks post chemo. Here are some photos from our day.

Christmas Eve in new jammies!

Matt being suprised by his new IPOD

Andrew, Nathan and Warren checking out the race track - the cars are meant to crash!

William with his awesome GI JOE......thingee (thanks uncle Alex!)

Andrew with his new 'Ben 10' watch


For New Years Eve we also had a really fun time. We went up to this mountain resort near our house that Warren and I have talked about checking out for 10 years! They had a room with 3 queen beds, 2 bathrooms, and a separate bedroom. It was perfect for our family. We went up there and the boys swam - there was a jacuzzi with a waterfall along with a pool and a very shallow toddler pool. The boys had a great time. Matthew couldn't swim, because his line can't get wet, but he could sit on the top step of the hot tub or pool. Then we had a fancy dinner at the resort restaurant. The Prime Rib was some of the best I've ever tasted! Afterwards we got into jammies, watched movies, and were all asleep well before midnight! :-)

Last thing, and then I will end this insanely long update! Baby Jake is so stinkin' cute! I thought about posting pictures of him on his own blog, but can't resist putting a few here! He is nearly 2 months old and HUGE! I'm anxious to see how much he has grown since his last doctors appointment!

Here is a good shot of Jake's red hair - and his famous 'Hold to the Rod' pose

One evening Matt asked to hold Jake while I was cooking dinner. I thought it had gotten awfully quiet....

Smiling at Daddy

Check out those cheeks!!

Fun, ANNUAL family tradition! (Or, 'New Blue Cast' the Drew event.....)

Almost exactly one year ago, on Thanksgiving day, Will broke his arm..... (See post, here).

Since Drew can't handle that sort of one-upmanship, he decided that not only would he break his arm, he would out-do Will by completely snapping his humerus in two places. He also thought that emergency surgery and staying overnight in the hospital would really show Will and his other brothers how this broken arm thing is done!

Truly, I wish I could figure out how to put a copy of his X-ray on my blog! His arm was literally in 3 pieces with the small middle broken bone turned sideways - his arm bone looked like a 'Z'.

On Sunday afternoon I was in a cooking mood. I had a yummy smelling pot roast in the oven with potatoes and carrots, a fancy salad, and homemade challah bread. I was putting the last touches on dinner and waiting for the roast to finish when I heard Drew start to cry. He and Will had been playing nicely upstairs (or so I thought!) When I went to the stairs I noticed Drew holding his arm funny - it was sort of hanging there and not moving. When I unbuttoned his shirt and saw his arm I just calmly told Nate to 'go get Dad right now'. Drew's arm was very clearly broken. We left the 4 other boys with Diana and went right to the Emergency room.

At first, the only story we got from Drew and Will was that Drew was getting a piggy back ride from Will. The ER doctor really questioned this (making me feel like an awful mom!) He said that breaks this severe don't happen if a child falls off a piggy back ride. Upon further questioning, it seems Drew was getting a piggy back ride ON WILL'S SHOULDERS! Apparently, Will sat on the edge of the bed and told Drew to climb on his shoulders. When Will went to stand up (with Drew) he lost his balance - Drew is only about 10-15 lbs. lighter than Will! Will stumbled forward and Drew toppled off his shoulders, hyper extending his arm on the way down and snapping his arm.

So, the ER doctors had to call in the Orthopedic surgeon who took one look at the X-rays and said Drew needed to be in surgery ASAP to avoid nerve damage. Within the hour, Drew was taken to surgery. Luckily, the doctor didn't have to open up the arm, he was able to set the break with pins. That was the best possible solution for the severity of the break, so we were happy. Drew spent the night in the hospital and we arrived home around noon on Monday.

Yesterday we went back for a follow up. Drew was having some pain in his arm, despite the fact that he was on a maximum dose of pain medication). They took X-rays again to rule out the pins shifting and also checked him closely for infection. The doctor determined that it was most likely nerve pain or his arm had gotten bumped a bit. He decided to go ahead and put Drew in a hard cast, rather than waiting until Monday when it was originally scheduled.

So, here you have "New Blue Cast" version Drew!

Re-creating the wheel.......

This year, our computer crashed. I've gotten a good lesson in backing up files (I lost all of my photos, music, and other files) and also a good lesson in not turning your 'old' computer into the 'kids' computer until you take your Christmas card list and put it on your new computer!!! Alex (my computer whiz kid brother) was able to retrieve a majority of my files, but right now my hard drive from the old computer is at his house waiting for me to go through every computer file and stick it where it belongs - I anticipate this taking several months once I actually begin....

Anyhow, I am hoping that you guys can all send me your addresses so I can re-create my Christmas card list. The thought of hunting down all of our friends from New York, Boston, and Chicago is a little overwhelming at the moment! Please email me at:

goodworth1@aol.com

Thank you everyone!!!

Thanksgiving and the 2nd round of Temodar!

We had a very eventful week this week! Particularly, when you consider that Jake is only two weeks old! On Tuesday I HAD to go buy some pants that actually fit me. There is nothing more demoralizing than giving birth and then trying on pants.... Anyhow, I thought that since we had a rather busy week ahead, I might need something to wear besides the Yoga pants I had worn every day since Jake was born! :-) So, Tuesday I went and got Thanksgiving groceries, tried (unsuccessfully - long story) to fill Matt's chemo prescription, and bought pants. On Wednesday Matt had an appointment with Oncology so he could start the next round of Chemo. Matt, Jake, and I left early - around 8:00 a.m. and picked up my mom at work so she could come with us. Matt's appointment went well. We met with a new Oncologist (since our regular, but never actually sees us doctor is on personal leave for 2 months......) and we really liked him. He spent quite awhile evaluating Matthew and talking with us. Matt looked great. His counts were wonderful and he got the go-ahead to start the next round of Temodar. We also found out that next month Matt will get another full set of MRI's. I thought this would be happening in January, and am not really looking forward to having these done a few days before Christmas. I talked to the doctor about our next plan if the Temodar (like the Carboplatin) is not shrinking Matt's tumor. He said there would be another 'tumor board' meeting about him and that most likely Matt would begin radiation earlier than originally planned. I am just anxious to get the scans and results! Each treatment we try brings us closer to the end of the options we have - once you've tried several Chemotherapies, the chance of any Chemotherapy affecting the tumor is slim since all Chemotherapies take advantage of the same process. I just want the Temodar to WORK!!!

Thursday was Thanksgiving (and, incidentally, Warren and I's ELEVEN year anniversary!) and we just had a wonderful day! We hosted the dinner - but I didn't cook anything (thanks Meg for organizing, and everyone for bringing everything and helping!) I was more comfortable keeping Jake at home and having people here, then I was taking him out in the cold while he is so tiny. My brother-in-law did a deep fried turkey. It was so FUN and the turkey was amazing! The food was awesome and the company was even better. Alex (my brother) brought his Wii and there was always a crowd of kids and adults laughing and playing games. Everyone seemed to enjoy eating and visiting and eating some more.

The rest of the long weekend was spent putting up Christmas decorations, and Warren and I were able to go out to dinner Saturday night to celebrate our anniversary. I kept Jake home from church again on Sunday - I'm just not ready to expose him to 'Church germs' yet! :-)

Matt completed his second round of Temodar yesterday (Sunday). He has seemed to tolerate it pretty well, although today he has been complaining of being tired and has had a hard time eating. Tonight I made chicken and black bean enchiladas - usually a favorite dinner for him. However, he took one bite, turned completely pale, and I thought he was going to be sick. He made himself a cheese sandwich, but still only ate a few bites. Hopefully this symptom will be short lived and he will be able to eat normally in a day or two. I will be interested to see if this round of Chemotherapy affects his blood counts. So far, nothing has really bothered his counts, and he seems to have 'Chemo-proof hair'. I keep trying to prepare him to lose his hair, but that isn't happening. His hair is as thick and wiry as ever!

Let the Holidays begin!
-Alli

Introducing Baby Jake!!!

Photo and video editing at www.OneTrueMedia.com

24 Hours Old!

I can't believe how quickly babies become a part of your life. Baby Jake is only 24 hours old and already I can't imagine our family without him. I know he was meant to come to us. In honor of this 24 hour milestone, I want to post 24 things I LOVE about my sweet boy already:

1)His sweet red hair - I was hoping for another redhead!
2)The way he smiles in his sleep.
3)His BIG feet.
4)His soft cry. It's really more of a grunt - I have yet to hear him really cry!
5)His little fingers interlocking in funny ways when he sleeps.
6)His strong neck. He can already hold his head up!
7)The way he sighs. When he is awake he just never stops 'talking'.
8)His cute frog tongue. His tongue flicks in and out all the time.
9)The way he makes Will smile. Jake is definitely Will's brother - they look just alike and Will is so thrilled!
10)His calm personality. He is really quite content to gaze around.
11)His soft skin.
12)His yummy baby smell - how do babies automatically smell this way?!?
13)His scrunchy little nose.
14)His long fingernails. We already had to clip them this morning!
15)His round belly.
16)His long arms and legs tucked in like a little frog.
17)His name. I think Baby Jake is so sweet!
18)That he is ours. We love him so much already!
19)How much the boys love him. Drew just cried last night when Diana took them home because he wanted to see Baby Jake one more time.
20)Watching Nate hold him. You could just tell he was thrilled to be a big brother.
21)How happy Matt is to 'have our very own basketball team!'
22)Jake's serious expressions.
23)How he hates to be swaddled, already. He fights to free his hands.
24)How he completes our family. We are so blessed to be the parents of this little bundle of Heaven!

-Alli

Hallelujia!!!! FINALLY - we have a baby!

Yesterday morning, when I went in for my appointment, my OB gave me the option to induce. He said that since I was close to my due date, my body seemed ready, and I had given birth vaginally twice before that perhaps some low-dose Pitocin was not an unreasonable risk. I thought about it for about, oh, 2 full seconds before I agreed! We went to the hospital, got all hooked up, and once a good labor pattern was established with the Potocin, they were able to turn it off! Apparently my body was ready and just needed a little kick start! After about 7 hours of labor ...........(drum roll please!)

Jacob Dunlap G. was born!!!
He weighed 8 lbs. 15 oz.
He was 22 inches long.
He was born at 8:24 p.m.

I couldn't believe how big he was - my biggest baby by 13 oz.! (Matt was the previous record holder at 8 lbs. 2 oz.).

Pictures to follow soon......

-Alli

Random post - but I thought this was too funny!

So, I expect to have another toddler in my life soon (well, assuming this baby ever decides to come out - hopefully before s/he actually IS a toddler!)

This video cracked me up. Anyone who has, or has ever had a toddler can relate!
Toddler UTube.

Matt's first shower in THREE MONTHS!!!

We are so excited! Because of Matt's Broviac in his chest, he isn't allowed to shower or swim. Other parents I have spoken with who have children with Broviacs are allowed daily showers, but I suppose Primary Children's is extra conservative in this regard. I even went to the 'official' Broviac site and they say that kids can shower and swim with Broviacs in!

Anyhow, any of you with 9 year old boys care to comment on how well sponge baths and 1x weekly bathing would work for your boys?!? Particularly now that Matt is attending school each day, he gets pretty stinky and sweaty. I have been going bananas trying to keep him clean! So, as I was researching on the web I found this product. I bought a package and when his home health supply company called I asked them if they carried this product and they do! They will keep me supplied so Matt can have daily showers! I know it's a silly thing to be thrilled about, but it makes such a difference to us. Imagine being a 9 year old boy and your mother having to bathe you in a bathtub - Matt had to hold a towel over his site so I could help him wash his hair/body without getting his line wet!

He thoroughly enjoyed his first shower in months. The stuff did start to peel off toward the end of his shower. I think we need to play around with it a bit to find a strategy that keeps things perfectly dry, but this was a big improvement over our previous system!

-Alli

Oh, and no, not yet, obviously.....

For those who need to know!

NOPE....... NOT YET! :-)

Since I have received several emails and calls today, I thought I should confirm. I told Luke (my BIL who said the baby would be late) that if he is the winner of our baby poll, he doesn't get the prize!!! (Not that there really is a prize, but it made me feel better to punish him somehow.....)

All is well here, though. Matt is having an exceptionally great week. He looks better than he has looked in ages. He is going to school all day long and is remembering minute details about his day - YEA!!!

I need to post Halloween pictures....... Soon, I (sort of) promise!

-Alli

Warren said my last post sounded whiny.....

Um, you don't want to hear what my reply was!!!!

A little (okay a LOT) Pathetic, but I'm desperate here!

I am really beginning to panic about this baby coming out. I am actually a pretty patient pregnant person (don't ask Warren to confirm that....., but I hear other ladies complain, and he just doesn't know how good he's got it! :-)) I am also opposed to being induced (and my OB wouldn't induce anyhow because it's dangerous for me). I am not a good candidate for induction because I had a cesarean with the twins. Anyhow, I really thought this baby would have come by now. It's funny, I was so worried about pre-term birth. If this little one gets any more comfortable, I am going to have some serious timing issues! First and foremost, I am Matt's primary caregiver. Warren can do all this stuff, but I am the one who actually does do all this stuff. I am the chief administerer (is 'administerer' even a word?) of the chemotherapy, medication tracker and giver, fluid tracker, IV medication/fluid giver, central line flusher, and appointment goer. We are currently in a great in between stage for all of these things. Someone would have to make sure Matt received his medications, flushed his line, and tracked his fluid intake. However, if this baby decides to hang out for another week or two, Matt's got an appointment that I would miss (and Warren has to be out of town that day...), someone else would have to give him his chemo, IV meds, and IV fluids, and I would have a nervous breakdown!!!

So, this post is a shameless beg for prayers that I will have this baby ASAP. I NEED this baby out!!! So, as I warned you in the title, this post is completely pathetic. However, I am going to have a panic attack if I think any further about how complicated my life gets if I go into labor at the wrong time!

From your pathetically pregnant pal,
-Alli

My bags are packed, but this little one's staying put! Also, update on Matt's first round of this new chemotherapy.

I just thought I would update everyone and let them know (Hi, Darla!) that I am still very much pregnant... On Friday, at my appointment, they pretty much confirmed my worst fear - I will officially be the first woman ever to be pregnant FOREVER! :-)

Seriously, I am feeling pretty good. Well, as good as a woman as big as a whale can ever feel. I am just hoping s/he makes their appearance soon!

Matt finished his first round of chemotherapy yesterday (Friday). He hasn't been throwing up this time (thank goodness!), although he has been on a very strong IV anti-nausea medication each day before he receives his chemo. He has felt pretty good. On Tuesday or Wednesday morning he came in and said, "Uh, mom, remind me why I can't go to school....?" I just wanted to see how he handled things this first time taking this new drug! I would hate to send him to school and have him get sick or be too tired. I asked on my Pediatric Brain Tumor message board (thank goodness there is such a thing, those moms and dads are awesome and so informative!) about their children's experiences with this new drug. They all said that while taking the pills, their kids have done great and have been able to attend school. Apparently, counts fall about 2-3 weeks after the meds are given, so this is when most of their kids have had problems and maybe needed to stay home from school. All I know is that Matt has been anxious to get back! Today he was quite tired, and a little 'off', though. He is on a hefty dose of the chemo drug, so fatigue is normal. Hopefully he will feel well and be able to attend school on Wednesday (Monday and Tuesday are school holidays).

So, that's about it on us! I hope that next time I update, it will be to tell you I had a baby!

-Alli

Okay, you all are in trouble!

Seriously, any of you predicting that I'll go over my due date (you know who you are...) are at risk of never being spoken to by me, ever again! :-)

Our Baby Poll!

Good News/Bad News - I really don't know WHAT to think!

Today was our HUGE appointment for Matt. He was due for sedated MRI's, along with audiology and chemotherapy. We had to be to the hospital at 7 a.m., so we decided to go down last night and get a hotel.

This morning, we started by registering in same day surgery. Man, it was a zoo in there! We got there slightly before 7:00 and every seat was full. We got him all checked in for the general anesthesia and then headed up to audiology at 8:00. His audiological testing came back showing some hearing loss. We have expected this, but I still hated to learn about it! The loss is slight, at this point, and is also in the high pitch (i.e. seldom used, and never in regular conversation) frequencies. Matt's hearing was still in the low-normal range, but I worry about it falling further! His left ear also now requires more volume for him to hear well.

After audiology we went up to Oncology so Matt could have his clinic visit and have his labs drawn (new labs must be drawn within 24 hours of receiving chemo). They told us that they wanted to admit him to the PICU after chemo., to stabilize him and make sure he stayed stable for 24 hours. He got so sick after the last round of chemo., and dehydration is a HUGE concern for Matt because of his DI. I didn't like the idea of the ICU because, well, it's the ICU!!! However, that is the only place in the hospital that they can give the DDAVP through a continuous drip. So, we figured that was the plan. We then went back to same day surgery so Matt could change into a hospital gown in anticipation of his MRI's. He and Warren played video games, and we just waited. There was a little boy in there with markers on his head - I thought, 'those look too familiar!' After I saw one of the Neurosurgeons go talk to them, and heard the word 'tumor', I just felt so bad for this family! I spoke to them for a moment and told them good luck and that I would be thinking about them. He was just such a sweet little boy, and it breaks my heart when I see another child embarking on a similar journey to ours!

When we went down to MRI, they got Matt in right away. We met the anesthesiologist, and Matt was hooked up to fluids through his Broviac. The doctor was telling us what to expect and said that when he put the anesthesia through Matt's line he would be out in 5 seconds. I thought it was a figure of speech, until he started putting the Propofal through! Honestly, it scared the crap out of me that there are drugs that can knock you out that fast! It was literally 3 seconds , Matt's eyes rolled back in his head, and he became completely limp.

The MRI's lasted several hours, and after Matt woke up from the anesthesia we went back up to Oncology. They had us go back to a separate room in 'infusion' (never a good sign.....) so the doctor could talk to us in private..... When the doctor came in he reported the good news first. The tumors that have spread and seeded (so the back of his head, brainstem and down his spine), have reduced. They are thinner, and the chemotherapy is clearly having an effect. However, the main, large tumor in his hypothalamus/optic chasm has grown.... Of course, the growth is small, but there is growth. The tumor also showed up 'brighter' on the MRI's, which shows active cells. Because of this bad news, they decided to change Matt's chemo. protocol. This wasn't completely unexpected, as this new drug was the one that the doctors at John's Hopkins wanted him to have. They felt that Carboplatin was a reasonable place to begin treatment, but if the results were not as positive as we had hoped, that this new drug, Temodar, should be used. Particularly, if Matt's tumor is in fact a Oligodendroglioma, Temodar is the best choice. They also increased Matt's MRI's to every 2 months instead of every 3. Hopefully this new drug will shrink his main tumor! Another benefit to the Temodar is that it is given in pill form, and is given at home for 5 days in a row, every 28 days. This is more convenient for me, both with a new baby coming, and also the hectic holiday season. We still have clinic appointments once a month, and I'm sure we will still be in often for this or that, but the long chemo appointments will be over for awhile - at least until December or January when he has his next set of MRI's and we re-evaluate.

One sort of funny thing. As we were talking to the oncologist about this new drug he said, "we will need to contact your insurance to make sure they will cover this drug, it is very expensive..." I called BC/BS and they said they did. Shortly after my call, the nurse came in to give us the prescription and said, "now, do we know your insurance will pay for this drug?" On the way home from the hospital we stopped at our pharmacy to get the prescription filled (we really didn't even expect them to have it, so were surprised when they did!) The pharmacist looked at the prescription and said, "does your insurance know this is coming through?" At this point, Warren and I were just looking at each other thinking, "how expensive can one drug be???" As the pharmacist handed us the bottle and told us our co-pay was $50. He then said, "and your insurance covered the rest of the $2,613!!! HOLY-MOLY!!! For ONE MONTH, this drug costs almost $2,700! That is for 5 pills (well, we actually received 15 pills because they only had the 100 mg. pills and Matt will need to take 3 per day for 5 days each month. I know I've mentioned it before, but thank goodness for health insurance!!!

So, there is my very long update on our very long day! The good news is that Matt seems great! His memory is coming back, he has been feeling wonderful, and he bounced back from his long day quickly. I will keep him home from school for this first dose of chemo (so this whole week), but we are hopeful that he will do well on this new drug. We are also praying that it is effective on the main tumor. That sucker needs to SHRINK!!!

Love,
-Alli

Make some guesses about our baby!

I found this game online and thought it would be fun to have everyone make predictions about our new little one! We don't know the gender, so now's your chance to tell us what YOU think it is! You don't have to register to the site to make your predictions, just FYI!

Here's the link:
http://expectnet.com/game.php
Our game name is:
GBabynumber5

Sorry if it won't work for you. It was working fine when I put it in originally. I hate computers!!!

-Alli

Nesting......Now I'll be able to locate all the clothes I still won't fit into for at least another year!

I don't know what it is about closets this pregnancy. I am just obsessed with getting them organized and labeled. Yesterday I did my own closet. I need to weed out things I'm not wearing any more, but I'm not sure that 8 months pregnant is a good time to be judging what I want to keep. It's kind of like cutting your hair short when pregnant - just don't do it, you will regret it! Anyhow, at least when I look at the shelves in my closet they aren't a huge jumble of summer and winter clothes, pants, sweaters, shorts, etc... Everything is separated and in it's own little basket. It's very satisfying.

Matt had his blood draw yesterday. All of his numbers came back looking great, again. He will need another draw on Monday morning because there have to be labs within 24 hours of giving chemo., but I think everything will look really good. While I was talking to the Hem/Onc nurse about his labs I had a chance to ask some questions. I asked about side effects and if it was normal for a child receiving Carboplatin to have as few side effects as Matt has had this round. She said some kids do really well on it. She also said that each time can be drastically different. So, I guess there is no way to judge how he will do after each round. I was sort of hoping that after the 2nd or 3rd round you had a good sense of how difficult it would be - apparently not! She also said that the longer kids were on chemotherapy, the more it affected the bone marrow and the more difficult it is to get the counts up high again before the next round of chemo. My second question was related to his counts. I have been worried (as I have expressed in other posts) that if his counts are staying so stable, is the chemo. really affecting the tumor? For this question, the nurse hedged a bit and said it is one of those questions that doesn't have an answer. Sooooooo... pretty much they don't know, but to me it sounds like there is at least some argument that I am right to worry! (Not like I need an excuse!)

-Alli

Well......

I'm still pregnant....

I shouldn't be impatient. I do have 3-4 weeks to go. It's just difficult because my last babies were born in my 35th week. The babies were both huge (6.5 lbs. and 5.8 lbs.) and they did perfectly and were able to come home with me. So, even though I'm not officially 'term' (this week I will be, though!) it feels like I am 'overdue'!

This week would be a crazy week to have a baby, though! Diana is visiting Boston, so I'm not sure what we would do with the kids! Also, next Monday (the 22nd), Matt has a HUGE appointment. We begin at 8 a.m. with audiology testing. Then off to same day surgery so Matt can get general anesthesia for his MRI's. Then he has 3-4 hours of scans of his brain and spine. After he wakes up from the anesthesia, we head straight to Hem/Onc for a clinic appointment and chemotherapy. Then, we still have to talk to the Oncologists and Neurosurgeons about what the scans showed. So, holding the baby in another week or 10 days would be best. However, it won't stop me hoping every night that my water breaks while I'm sleeping! ;-)

Matt has continued to do well the rest of this week. At church today I received several comments about how well he looked. YEA!!! Yesterday was sort of weird. He started feeling really nauseated and threw up several times. Of course, I panicked! Vomiting can be caused by several things - a virus, which wouldn't be a HUGE deal because his counts have been great and he should be able to fight off something right now. It could also be a bacterial illness, potentially more serious, especially if he had low counts. It could also be a late effect from the chemo., again nothing to worry about, we would just treat it with anti-nausea meds. Or it could be from his ventricles enlarging. Remember, Matt doesn't have a shunt, but they anticipate that at some point he will need one. We're always worried that headaches or vomiting are caused by increased pressure on the brain. Lastly, it could just be the fact that he ate AN ENTIRE BAG of beef jerky while he, Warren and Will were fishing yesterday morning! So, after waiting awhile to see how he did, I finally called the oncologist on-call. He said to give a bag of IV fluids, along with the IV anti-nausea meds and if Matt was still throwing up and feeling miserable, then we needed to bring him in to SLC to the ER. LUCKILY, the IV meds did the trick. He was feeling a ton better last night and even ate a little bit of dinner. He slept well and was anxious to go to church today. I feel thankful that everything seems all right now!

Love,
-Alli

And the numbers are IN!!!

We got Matt's blood counts back this afternoon and, really, things could not look better. Everything that is supposed to be going up is going up, and everything that is supposed to be going down is going down. :-) It's just so strange that last month, we were at Primaries 2-3 times per week - literally! Matt had some strange things with his blood counts and endocrine panel and he needed a transfusion. This month.....nothing. Everything has looked fantastic from the first blood draw. He still feels wonderful, his sodium is staying stable, and his immune system still seems to be functioning normally.

So, my concern, as was raised last week is:

What the heck is the chemo. doing if it's not making him feel crummy and have crazy blood counts?!?

(I expect each of you to remind me of this whine when things do get crazy, and I'm complaining that he's too sick!) :-)

Love,
-Alli

Photos and the REST of our summer!

Since I was so far behind in updating my blog, I thought I might post some picture of the rest of our summer! We really did enjoy our summer - up until August...

I also went back and finally put a few relevant pictures of Matt's hospital stay and surgery into their respective blog posts. If you are interested, you can go back and look at the photos. WARNING: I POSTED A PICTURE OF MATT'S INCISION IN THE UPDATE LABELED 'LAST NIGHT'. Fainthearted readers may want to avoid this picture!

Okay, now for our summer:

We moved to Utah - these are the hills behind our house. Someone hauled this bench all the way up the side of the mountain! Since I could barely climb the path to this bench, it's amazing that someone did that!

Warren bought a 4-door Jeep that has been a BLAST in the mountains! We also bought a canoe and that has also been a lot of fun. This is Warren and the boys fishing up at 'the Dike.' (At one point, Warren actually did have all 4 boys with their lines in the water - simultaneously! That's a heck of a dad!)




4-Wheelin' Boys! Have I mentioned yet, that boys (well, at least my boys) LOVE to go on anything fast and semi-dangerous? This was also up camping at 'the Dike.'



Will makes us laugh - always! While camping he was doing some 'research' as to how many marshmallows might fit on a horseshoe shaped roaster. Of course, he just likes to light the marshmallows on fire. Heaven forbid he actually eats them! :-)


William played 'coach pitch' baseball. Here he is as the catcher.


Big Sticks. Dusty Mountain Trails. A dog. Dad's new Jeep.
I'm not sure anything else would make for a more successful summer season for little boys!



We also had an awesome family reunion up at Bear Lake with Warren's family. We rented a cabin, a boat, and a wave runner. It was a hugely successful and fun reunion. But, I didn't take any pictures! I video taped a lot of it, but got home and realized I didn't have even ONE photo on my digital camera - what was I thinking?!? That was just a week or two before Matt's diagnoses and I am SO GLAD we did it. It was such a fun, normal activity and Matt was able to spend 4 full days laughing and playing with his cousins. We also did a few sessions of swimming lessons and went to the local pool several times. All in all, the summer was a blast. I am thrilled that the memories BT (before tumor) were so positive!

Love,
-Alli

One benefit (???) to having a child with a brain tumor...

The other day there was a message from my boys elementary school telling me that they were due for an immunization. I wasn't sure whether or not a child receiving chemo. can get immunized because of their compromised immunity. I called Hem/Onc to ask them and found out that Matt may not have any immunizations, but that once he has been out of treatment for 6 months he can resume his immunizations where he left off. From there we spoke a bit about flu shots. Apparently these are okay and Hem/Onc wants all of their children receiving chemo., along with all family members to receive one.

So, after I hung up with the hospital, I called the pediatricians office. When I asked about flu shots the gal said they would begin giving them on Nov. 1. When I asked if our whole family could come in at the same time to receive one, and explained that Matt was on chemo. so we all needed one, she told me to hold on a minute, she had heard that there was a possibility the shots might be available Oct. 15th. When she came back on the line she said that our family could come in any time. :-) So, next week we are all going to go in and get our flu shots. It's just amazing that impossible things are made possible instantaneously when you mention the words 'chemotherapy' or 'brain tumor' or 'cancer'. I have found people in the medical community to be especially compassionate when they find out we have a very sick child. I try to not abuse the situation, but it's funny when something happens to be mentioned, how quickly people respond!

Matt's great again today. Hopefully this will keep up!

Now I'm off to start sorting the mountain of medical bills we suddenly have. The sheer volume of paperwork for each procedure is overwhelming! There is a bill, then an itemized statement of services received, and an explaination of benefits from the insurance company. These all, of course, come seperately and need to be matched up to figure out what we actually owe! I'm going to make an excel spreadsheet to try and keep everything straight. Man, I wish I would have persued a degree in accounting!

Love,
-Alli

WHY can't I just enjoy good days???

We had another great day with Matthew attending a full day of school. It is so nice to see him come home and feel well enough to do homework, eat dinner, etc... He had his weekly blood draw early this morning and his counts are actually looking really great. His ANC is within the NORMAL range! His platelets and hematocrit are both a bit low, but not so low that he would need a transfusion. His sodium was a little high, and I think that's a result of me not being able to obsess and push fluids all day while he's been at school. Today I sent him with a 32 oz. water bottle and strict instructions that he had to drink it all by the end of the school day and that he had to drink all of his milk at lunch. If he can get in 40 oz. at school, then I can encourage the rest both before and after school.

So, why am I so crazy? I am now worried that if he feels this great during chemo., it can't possibly be doing what it is supposed to be doing!! See, I can't win (or rather the doctors can't). If he has a ton of side effects I think the chemo. is too strong. If he has too few side effects, I think it's not strong enough. Sheesh... Can't I just be thankful that this round he is doing well? If I think about it enough, I can assume it's Heavenly Father's way of helping me get through this last month of pregnancy. It should be nice to be able to stop worrying a little bit about Matt, and focus on this new baby who is going to be here before I know it!

Poor William has had a little bit of a flu-bug today. He threw up this morning, and also had a fever. I kept him home and he just hasn't been able to keep anything down all day. Poor guy! If he still feels crummy tomorrow and continues throwing everything up, we'll go see the doctor. On a selfish note, I am feeling tired of being home cleaning up vomit! My kids have all had a very throw-uppy couple of months, and I am getting a little bit tired of it!

Love,
-Alli

More good days to report!

I can't believe how well Matthew has been doing these past few days. He felt so well over the weekend that I allowed him to go to school for a full day yesterday. He did so well, even coming home and actually doing his homework! Today he also felt well enough to go to school for the entire day and I was happy to let him.

We are getting good reports from school, as well. Last night his teacher called me to ask a question and mentioned that he had memorized a fable that the class had been working on. Apparently, once a month or so, the children all focus on memorizing something. This fable was probably 1/2 a page long in small type. Matthew passed it off in class and when I asked him about it last night, he was able to recite it to me. I almost started crying - that is such a change from his severe memory issues! I am thrilled with the progress we are seeing and I am anxious for his re-evaluation from the Neuro-psychologist (6 months to 1 year from his first eval.) I think it will show pretty significant improvement.

On Saturday I took Matt to Sam's club and as we were leaving he asked me a question. I didn't know the answer so I replied, "I can't remember." He quickly exclaimed, "Mom, THAT'S MY LINE." :-) He's been a funny, happy kid these past few days.

-Allison

P.S. I think I am 'nesting'. I have felt obsessed with getting all of my closets in order. I bought a label maker and pretty much everything in my life is currently being labeled. :-) My mom came this weekend and she and I got all the boys clothes sorted, weeded out anything that didn't fit, and put everything into baskets with LABELS. I am thrilled with this little bit of control I have over my life right now. I just need to get my own closet done - in anticipation of wearing my regular clothes, and then I will feel closer to ready for this baby. I should take pictures and post them - you all would be so proud of me! :-)

Oh Baby!

Today was my 34 week appointment and all is still well! I am measuring large - about 36 weeks. With each passing week I feel relieved that I don't have a preemie. As the due date gets closer, though, I am starting to wonder if this baby will ever make an appearance. Who knows, with all these prayers for our family, including prayers that this baby stay in, I might not EVER give birth. Please, everyone who is reading this, DON'T LET AN ETERNAL PREGNANCY BE YOUR FAULT!!! :-)

All kidding aside, I appreciate all of the prayers for our family more than anyone can know. I can honestly FEEL the changes that have come as a result of those prayers. We feel so comforted every time someone says they are praying or fasting for our family, or when people mention that they've put Matthew on a Temple's prayer roll. It means a lot, and there is power in everyone's combined faith.

We had a very positive day again today. Matt went to school, remembered things I didn't expect him to remember, and had a lot of energy. Tonight he was quite tired, but he's had a busy couple of days. Of course, though, I can't help but worry that the tiredness is his hematocrit (red blood cells), which was slightly low on his blood draw this week. I hate that a child being a little bit tired, can't just be dismissed as a child who is a little bit tired. I feel like I'm always looking for something 'wrong'. It's not just Matt, either, I worry so much about my other boys, as well. I've never been a paranoid mom about, well, anything. I think germs are a normal part of life, don't obsess about sugar, and think that my kids will be just fine no matter how advanced or behind they are in preschool. That's why this diagnoses for Matt has put me through such a loop. Now I feel justified, almost obligated, to consider obscure illnessess in my children for every little thing. Instead of my usual, "Oh, it's probaby nothing. Just give it a week and it will most likely go away", I now worry that everything is a brain tumor!

Oh well! Everyone have a great weekend. I need to think of something FUN to do since Matt is feeling so great!

Love,
-Alli

Another fantastic day!

Matt was able to go to school today. It felt really normal because it was a 1/2 day for everyone, so he stayed with his class and took the bus home (rather than me picking him up at noon). He has been energetic and has done homework the past couple of days. It's nice to see him re-emerging. The memory issues are still significant, but my boy is still there.

It's amazing to watch the changes from week to week. Last Thursday Matt was so sick! He just wandered around the house with his throw-up bucket looking awful! Now, he's happy and comfortable, not too nauseated (although his food preferances and cravings are very different than they were pre-chemo), and he was even able to go with Diana and the younger boys to the 'fun park'. They are there right now. It has a big 'soft play' area, video games, bowling, etc... He was really excited and anxious to go with them. I was thrilled to let him!

Now, though, I am going to go take a nap!

Love,
-Alli

School's back on! (for the moment)...

Last night we received a call from our home health nurse scheduling Matt's blood draw for today. She said that she had just called Hem/Onc to get the orders for the draw and they had told her that they didn't want Matt going to school until we knew what his counts were. :-( He fell pretty dramatically last time and we surely don't want to risk illness or infection by sending him back if his counts are low! He was so BORED today. It made me worried because what if he feels this good for the entire year but can't go to school??? I guess I imagined that if he was too sick to go to school (with his counts) that he would feel crummy, as well. If he feels good, but his immune system is down, we are in for a long year (oh, yeah, I think we're in for a long year anyhow...) So this afternoon he got his blood draw and everything is looking pretty good. His ANC is high enough to go to school tomorrow. He was so excited when I told him. So, here we go back to our 'normal' life. Last time it was 2 and 3 weeks post chemo that he had such awful numbers, so we'll see if this month follows that pattern.

Love,
-Alli

Visit with Dr. Walker

Matt and I left for SLC this morning and had a great drive. He kept saying, "Mom, the only thing I love about visiting the hospital so often is this beautiful drive." I agree that the canyon is lovely, not so much about the construction in Ogden! Midway there he began asking if we could go to Kentucky Fried Chicken. Apparently fried chicken was a craving - and as a mom I felt obligated to indulge it. We stopped for lunch and then arrived at Primary Children's a little bit early. The parking lot was an absolute zoo and we had to drive around for 15 minutes before we found a spot! I was worried that our day was going to be l-o-n-g since there were so many people there. However, we got checked in right away and there was NO one in the waiting room for CT Scan/MRI! We checked in and were immediately called back. CT Scans only take 5 minutes, so afterwards we were on our way to Neurosurgery - again, a few minutes early. I was anticipating a long wait there, as well, but we had barely sat down when they called Matt back. It was so nice to see Dr. Walker again - have I mentioned that I trust him implicitly? He gives good advice and is amazingly knowledgeable because of his years of experience. He is just a wonderful doctor. Matt was released from his 'two feet on the ground' post surgery instruction and he can now ride a bike (with a helmet, the Dr. was quick to add), and do pretty much any other 'normal' 9 year old boy stuff. He can't, however, go back to P.E. Dr. Walker feels that it is too uncontrolled and can get too wild. Matt wanted to know if he could go to Lagoon, and the answer was YES. Roller Coasters are apparently okay, but jumping on a trampoline is not. I was worried that something physical Matt had done had caused the tumor to bleed (we had been boating, and he had been pulled on a tube, the week before, and he had just started Football). He has been an active kid this summer and I worried that by letting him resume activities, the tumor might be more likely to bleed. Dr. Walker said it's not related and Matt can go back to a normal physical activity level. Lastly, Dr. Walker had not heard that we had gotten a different pathology opinion from Dr. Burger. He felt like it was important to know whether it was a PMA or an Olio. In fact, as we left I think he was calling pathology right away. I'm glad he felt that the second diagnoses needed to be reviewed further. Dr. Burger is apparently one of the best and Dr. Walker wanted to know why he thought Matt's tumor warranted a different pathology diagnoses. So, now we are on the hunt for a 3rd pathologist to give another opinion. We are hoping there is someone at Mass General or something, since having Diana here is making me homesick for Boston! It would be a good excuse to take a fall vacation to New England (never mind the fact that we don't actually have to be present to get the pathology reviewed...)! :-)

So, that was our day. Matt had another day of feeling well so I'm going to send him to school tomorrow. Hopefully he continues to do well. We also find out counts tomorrow, so we'll see exactly how this round of chemo. is affecting him.

Love,
-Alli

Quick Update (GREAT day!)

Today I didn't send Matt to school and also didn't give him any anti-nausea meds. Unfortunately, the only way to really see whether he needs them is to not give them to him (you usually know pretty quick if they are still needed)! He has done FANTASTIC all day long. He has eaten pretty well, and has only complained once or twice of a mild sick feeling. His energy level has been great, as well. He went with me to run a few quick errands, and then he and I took the dog on a really long walk around the neighborhood. Tomorrow he has a doctors appointment with the Neurosurgeon, otherwise I would feel comfortable sending him back to school. At the appointment, they are following up with his progress after surgery, checking the incision and such, and he is also getting a CT scan to check his ventricles (to see if they are further enlarged, indicating hydrocephalus). I am anxious to see the results of this scan and also to talk again to Dr. Walker. As the reality of this diagnoses is settling in, I want more specific information so I can research things further. It was such a blur two months ago that I don't think I got enough information - or else wasn't in a position to process the information they were giving me!

I'll update tomorrow!

Love,
-Alli

Sick, sick, sick (but feeling a little better today!)

Thursday and Friday were very sick days for Matt. I am curious to see what his 'usual' response to chemo. will be. They say it takes a few cycles before you know how someone is going to typically respond. If this is a typical response for Matt, I have to say, it hasn't been too bad. (This, of course, coming from someone not actually experiencing it)!

On Friday, after he was still extremely nauseated and throwing up everything he ate or drank, I called Hem/Onc once more to see if we should do anything. Again, dehydration is a huge concern, but for Matt it is even more critical because of his DI that his endocrine panel stay within normal range. They decided that some IV fluids and some IV anti-nausea medications were in order. I had been dreading this exact solution because I thought I would have to go to SLC every time he needed fluid! Hallelujah, though, IV fluids and meds can be given at home! I was so thrilled to hear this! So, Friday night another huge bag of supplies was brought in with 3 different anti-nausea meds, an IV pole, and more saline then I can ever imagine using. A home health nurse also came to show us how to do all this. I was worried when we began, but it is really not that difficult because Matt has a central line. It's just a matter of connecting tubing correctly and adminestering the correct amounts of medication. He went to sleep that night with both Phenergan and Benadryl to help with the nausea, along with IV fluids. Saturday morning, Matt was again extremely nauseated and vomited several times. We gave him the IV Anzemet along with more fluids and he went back to bed. When he woke up, though, that afternoon, he seemed to feel quite a bit better. We actually took him up to the 'Ag-Science' barbecue that they do every year on homecoming. It is fun living in the same town as an Ag school! They had great meats, corn on the cob, yummy onion rings, flavored milks, creamies, and the BEST truffles EVER! They also had a little hayride you took from the parking lot to the barbecue. It was a lot of fun and Matthew has been saying he craves steak. He had 2 steak shish-ka-bobs and had a good time, as well. Last night he slept well and this morning was able to go to church. We did give the Anzemet this morning, as a precaution, but so far he hasn't thrown-up. The Primary program was this morning and I am so glad he was able to participate. All of my boys did so well. They knew their parts and sang most of the songs, and only had to be told to stop wrestling with the children next to them once or twice! :-)

So, there's the update. Tomorrow I am going to be brave and see how he does without the Anzemet. I think the IV medications are the key - he responds very well to them, especially the Anzemet. I'll keep him home from school until I know he won't throw-up without the anti-nausea medications. This week should be crazy since Warren is leaving for Chicago tonight and won't be back for about a week (next Tuesday should be the latest he would return). I'm anxious to see how Matt's counts are on Wednesday. If they are already bad, we could have an interesting week! Have I mentioned that I am so thankful to have Diana here!?!

Love,
-Alli

I knew it was too good to last.....

Matthew went to bed last night very tired, but otherwise well. This morning, he woke me up at 6:30 a.m. saying, "Mom, Will threw up." I went in and, sure enough, Will was covered. We got him cleaned up and the blankets in the wash. Within minutes, Matthew started retching. His stomach was pretty empty so nothing was really coming up, but he was nauseated. As soon as he drank something, though, it came right back up. This worried me because Matt had a dose of the anti-nausea meds (anzemet) right before chemo. and wasn't due for another dose for 6 more hours! Also, he has to skip one dose of DDAVP before chemo because DDAVP concentrates the urine, but during chemo his body needs to flush the chemicals out quickly. If he couldn't keep any fluids down, he couldn't build up the fluids he needs to keep his sodium in check! After a quick call to oncology we got the go ahead to give him the anzemet early. He was still really nauseated all day, and threw up quite a bit this evening. His weight stayed good, though. It has been within the range the endocrinologists want it to stay, so hopefully that means his sodium is staying stable.

This evening I got a call from a friend down the street. My ward is being wonderful and bringing in frozen meals for us to heat when we need a quick dinner. Anyhow, this friend called and asked if she could bring over a dinner for me to freeze. I jokingly said that sounded wonderful, but told her I would probably be putting it in the oven instead of the freezer tonight! She brought the pot pie already cooked and it was delicious! The best part, though, was that Matthew ate FOUR helpings! As he sat down at the table he said, 'Mom, that pot-pie smells SO GOOD.' This is a child who has eaten NOTHING all day long. I tried to make a list with him of foods and drinks that sounded good, and just the conversation made him queasy! The only foods on the list were Handi-Snacks with spreadable cheese (I never buy these, so it's funny that would be something he craved!), and sunflower seeds! How random is that?!? Anyhow, I'm not sure that a dinner has ever been such a blessing. I saved the (very few) leftovers and hopefully that will still sound good to Matt tomorrow. I am so happy that he ate, that it tasted good, and that it has (so far) stayed down. Thanks Stephanie!

So, today has been quite the day! I've done more throw-up laundry today than ever before in my life, and I still have to wash my sheets (of course, Matt was resting in my bed when he got sick this evening.....:-))

Well, it's done, and all seemed to go well!

Once again, Matt had a great (if chemotherapy can ever be considered great...) appointment. His audiological testing was still the same, so no evidence of hearing loss. We were thrilled with that! Unfortunately, even if there is hearing loss, they simply want to monitor it and will then help him with speech therapy and hearing aids after chemo. So, we're hoping for no hearing loss - or only a tiny bit.

Matt's clinic visit also went well. They decided not to cut his dose, since his treatment didn't have to be delayed. The oncologist felt like even if his counts were wacky during the month, that as long as they came up by the next appointment, we could stick with the scheduled dose. I am glad we didn't have to compromise treatment by cutting the dose! They also decided not to do a transfusion, even though his hematocrit was still a bit low. We and the oncologist also discussed next month. Matt is scheduled for full MRI's of his brain and spine. I am beyond anxious to see if the chemo. is doing it's job!

Matt did great during 'infusion'. He watched a movie and ate Skittles and drank Sprite. It feels sort of weird to be so nonchalant during the chemo. infusion. However, on the ride home it starts to affect him. He gets really sleepy and the thought of food starts making him queasy. You can just tell how hard it is on his body. I am hoping, though, that this month mimics last month. I know it's a lot to hope for, but I am the ultimate optimist. :-)

Lastly, I think we found a type of bandage that Matt is responding well to! I don't know if I've mentioned it, but he has been having pretty severe allergic reactions to the 'tegaderm' dressing they put over his Broviac site. So, we then tried a white cloth type dressing called 'primapore' which he reacted even more strongly to! His entire chest was red and rashy and itchy and raw. It looked so awful! FINALLY, last week we discovered 'duoderm'. This is a type of bandage used to treat bedsores and it has healing medications inside of it. Last week they put one on, and today when it was changed his site looked so much better! We're also cleaning the site with 1/2 strength hydrogen peroxide and betadine instead of chloraprep and alcohol. Hopefully these strategies will keep his chest healed and comfortable!

So, that was our entire day. I'll let everyone know how he seems to be doing tomorrow and Friday!

Love,
-Alli

Round TWO tomorrow!

Tomorrow afternoon we have the next big clinic/chemotherapy appointment. They drew his labs today and everything looks good for tomorrow (his counts have to be a certain amount before he can have chemo).

So, wish us luck! I hope it goes as smoothly as it did last month. However, I'm worried that he's going to get pretty sick - and sooner rather than later!

-Alli

Malignant or Benign, that is the question.

So, I thought I might take a moment to address this, the most often asked question. In 'normal' (i.e. not CNS (central nervous system) ) tumors, this is an extremely important question. If you have a malignant tumor, it has the potential to spread quickly throughout the entire body and affect every organ - including eventually spreading to the brain. In tumors of the brain and spinal cord (again, the CNS), these criteria don't really apply. Even in the most aggressive malignant brain tumors, they won't spread to the rest of the body (usually). The CNS is a closed system and, ordinarily, the tumors stay within the CNS. The terms malignant and benign are also misleading when it comes to brain tumors because a malignant tumor may be more treatable and in a better spot than a benign brain tumor that is larger, or in a bad spot. Many people breathe a sigh of relief when told their brain tumor is benign, but this label can be misleading. I liked this explanation I found online:


Grade - benign or malignant?
Brain tumours are put into groups according to how fast they are likely to grow. There are 4 groups called grades 1 – 4. The cells are examined under a microscope. The more normal they look, the more slowly the brain tumour is likely to develop and the lower the grade. The more abnormal the cells look, the more quickly the brain tumour is likely to grow and the higher the grade. Low grade gliomas (grade 1 and grade 2) are the slowest growing brain tumours.You may have been told you have a benign tumour or a malignant tumour. As a rule of thumb, low grade tumours are regarded as benign and high grade as malignant.

By benign, we generally mean
*The tumour is relatively slow growing
*It is less likely to come back if it is completely removed
*It is not likely to spread to other parts of the brain or spinal cord
*It may just need surgery and not radiotherapy or chemotherapy as well

By malignant, we generally mean
*The tumour is relatively fast growing
*It is likely to come back after surgery, even if completely removed
*It may spread to other parts of the brain or spinal cord
*It cannot just be treated with surgery and will need radiotherapy or chemotherapy to try to stop it from coming back.

With other types of cancer, these black and white explanations of benign and malignant work well. But with brain tumours, there are a lot of grey areas. Some low grade astrocytomas can spread to other parts of the brain or spinal cord. Radiotherapy and chemotherapy are sometimes used to treat 'benign' tumours. Even a slow growing tumour can cause serious symptoms and be life threatening if in a crucial part of the brain. So, you really need to ask your specialist to explain your own situation to you fully and simply.

We have never been told whether Matthew's tumor is benign or malignant. After reading these simplified explanations, I think I know why. Matt's tumor takes in characteristics of each type of tumor. It should be slow growing, because under a microscope it looks like a low-grade glioma. However it has also spread, pretty dramatically, beyond his hypothalamus, to his brain stem and down his spine. They are also treating the tumor with some heavy chemotherapy and the plan is to begin radiation once he turns 10. So, in short, he seems to have a benign type tumor that is behaving more like, and we are treating like a malignant type tumor.

So, the gist of this whole post is to say that we really don't know, we do care, but it doesn't actually seem to matter...... There, now, does that answer your question? :-)

P.S. Can I just tell you all, how HUGE I am right now! I had a sad/funny moment when I realized I was wandering the aisles of Kohl's looking for clothes to try on and my only requirement was that they have an elastic waist or be that super stretchy material that is popular right now. Oh, of course it could also be maternity, but there wasn't a whole lot in that department! I am in a sad state! This baby is poking out SO far!

Our end of week episode looks pretty good!

Thanks for staying tuned for another episode of our very own 'General Hospital.' :-)

So, after peeing out over 100 ounces (in 24 hrs.) when they took Matt off the DDAVP, they (they meaning Endocrinology) panicked again and put him back on the medication with instructions that Matt may NOT go to school until his sodium is stable. The good news is that yesterday, after drinking 100 ounces to make up for the SIX pounds he lost in one day, his sodium was good at 145. Today we were able to maintain the weight and sodium level at 142. YEA!!! Now, we've just got to hope this schedule of keeping his weight at a certain level and his 'input' and 'output' at a certain level, will stabilize his sodium long-term.

Also, his hematocrit has come back up into the 'low-normal' range and he didn't end up needing to be transfused. I am glad for that! I want to avoid blood-products as much as possible because of his allergic reaction last time. I know that they will be a necessary evil, but I worry that his reactions will become more severe with repeated exposure. Hopefully, he won't be needing them too regularly! His other counts are also slowly coming up. They have to be a certain level for him to receive chemo, and I believe that today they were all within the range they need to be for him to receive his next treatment.

Today I also went to the obstetrician to check on this sweet baby. I'm 32 weeks and all is looking good! No cervical change from last time - whew! I was really worried that pre-term labor was beginning and that I might be put on bed rest. At this point, unless something happens in the next 2 weeks, I think I've avoided that scenario. I want to hold this little one in for as long as possible, and I know that each week the risks associated with delivering a premature baby go down. I delivered 35 weekers last time, so if I can keep from delivering before then, I'll at least know what to expect!

This next week is a busy one! Matt goes in on Wednesday for his 2nd round of chemo. I am anxious to see how he reacts. He also goes in for audio grams before each round of chemo. I'm hoping that there has been no damage to his hearing from the chemo. Wish us luck this week!

Love,
-Alli

We could star in our own soap opera!

I've never been a big fan of soap operas. However, I can't help but feel a little like we are living one right now! Wouldn't we be a great cast, and a great story on 'General Hospital'?

This morning Matt was energetic and excited for school. So, once again, I was surprised to get a call from Hem/Onc saying that Matt's Hematocrit (red blood cells) was at 24.3..... they transfuse when it falls to 25. They asked how he had been feeling since low Hematocrit causes tiredness, dizziness, pale skin, weakness, etc... I reported that he had felt well that morning. They wanted to talk to the oncologist to see if he wanted to transfuse even though Matt was not symptomatic.

In the meantime, we got Matt's endocrine results back. Everyone started to panic because now Matt's sodium had fallen too low - to 126. They thought that maybe the low sodium was causing the confusion yesterday. So now we have instructions to stop the DDAVP, see if his sodium will right itself, and keep track of his weight.

So, now we are waiting to see what Matt's hematocrit will do. If it falls any further they want him to come in for a transfusion tomorrow. We will also get his sodium drawn and see if that has made any improvement.

Stay tuned for our next episode of:
'Goodworth General Hospital'.

Love,
-Alli

PARANOIA! (Or, will a headache ever just be a headache again?)

Today I started getting paranoid. Matthew kept repeating himself (a.k.a. 'Ten second Tom) and asking over and over where his pillowcase was - (answer: in the washing machine with his sheets). After several repeats of this behavior, he said, "Mom, I have a headache, can I have some medicine?" When asked, he reported his headache at a 7 - very high for him. I don't think he's asked for headache meds at all since we've left the hospital. So, I gave him a Tylenol and a few minutes later asked how his headache was. He looked at me strangely and said, "I don't have a headache." Well, I panicked because he had needed a platelet transfusion on Friday. Low platelets can cause uncontrolled bleeding - and even spontaneous brain bleeds. Presumably, it could also aggravate a tumor that has already shown a tendency to bleed. I called Neuro-surgery and they first thought about checking his sodium to make sure that was under control. However, about 10 minutes later the nurse called back and said that on 2nd thought they wanted to do a CT-Scan just to make sure it wasn't bleeding. So, we hopped in the car and headed to SLC to get a scan and an endocrine panel to check his sodium level. Thankfully, the scan showed no new bleeding. That was a huge relief. They did say that his ventricles (his tumor is on the 3rd ventricle) were a little bit enlarged from his last scan. They are going to watch that closely to make sure there is no further build up of fluid, causing hydrocephalus. It was just so scary to see a behavior regression like that. So far we have only seen progress forward (albeit, in teeny-tiny steps), so it made me nervous to see behaviors we haven't seen since diagnoses. We are waiting to hear on labs - we'll probably get those back tomorrow.

Lest anyone be concerned that we are abandoning our other children through this ordeal, I will reassure you and mention that we hired a Nanny. I am so thrilled! Our friend Diana, who helped us when the twins were born (she was a professional Nanny for another family, but the children at her other job were in school during the day, so she was able to come help me several days a week when Nate and Drew were tiny) has come to stay with us and help. I thought of her while Matt was still in the hospital, but assumed she would already be working. After talking to another Belmont friend who had heard that Diana was transitioning to a new job, I contacted her to see if she might be interested in coming to help us. She was! Yea! She got here last week and it is so fantastic having someone who can pick up anywhere I leave off. She is delightful with my children, very patient, and very independent - I don't have to give her specific instuructions, on, say, what the kids have to have for lunch. I am so thankful that she was willing to come help us through this time. It is a huge relief to have someone always on hand to help when days like today happen, and I have to be in SLC with no notice!

Love,
-Alli

Yee-Ouch!!!

Can I just say...

I am so incredibly thankful for health insurance!!!

Warren has always made sure that we had insurance - even during law school when my job paid for nothing except our insurance! No matter how bad things have ever been in our life, financially, he has been obsessed with us having health insurance. I think I have a glimmer of understanding now!

Let's just say that having a child in ICU for almost 2 weeks is extremely expensive! I know lots of people who do it for lots longer than we needed to, but the bill for those 2 weeks was enough to shock me!

I had to go fill Matt's prescriptions yesterday. Most of them are not expensive at all. However, one stood out because it had a $50 co-pay. The instructions on the bottle say that he should take this medicine once a day as needed. Because it was so much more than the other's, I was curious about it - maybe there were more pills? When I asked the pharmacist tech how many were in the bottle, she replied 3 (THREE!!!) I then asked why my insurance wasn't covering it and she replied that they had covered $150 of the cost! Hopefully Matt just never throws up (this medication is a very strong anti-nausea/vomiting medicine)!

-Alli
(who is really not complaining about how expensive things are - again, insurance is WONDERFUL - but who is just expressing her absolute amazement that medical care is so expensive. Worth it, of course, but very expensive!)

Just a quick update

This morning we met with a pediatric endocrinologist at the Utah diabetes center up at the U of U. They mostly wanted to see Matt in clinic so there was a chart on him, and just to check how he was doing. They decided to change up his DDAVP a little bit and also wrote a prescription for a hospital grade digital scale. They want to keep careful track of his weight in Kg. because he has DI, but has completely lost his thirst. The only way we will know he is becoming dehydrated is if he begins losing weight (which will be tricky, since the chemo is also likely to make him lose weight).

Afterwards, we headed straight to Hem/Onc for his transfusion. While there we *finally* got to meet our oncologist! YEA!! Of course, I wasn't expecting to meet her today, so I didn't bring my list of questions! However, we will see her again soon, so I can remember to ask her then. It felt good to talk with his primary doctor. After a short consultation we went back to 'infusion'. Apparently, it is not my imagination - it is strange for platelets to fall so quickly. Because of this, the doctor wants to cut his chemo dose by 15% next time. It's tricky finding what works - you have to have the right dose so the tumor is being affected, but not so high of dose that your counts don't come back up by the next scheduled chemo. They started the transfusion with strict instructions to me to 'watch for anything that seems different'. Many people have allergic reactions to blood products. Well, within 30 minutes of beginning the transfusion, Matt began to shake pretty violently. I called the nurses over and he started to get hives on his face right while they were all standing there. So, we had to stop the transfusion, the doctor had to come right over, and he had to have a pretty hefty dose of Benadryl along with Tylenol. Within 30 minutes the hives had cleared up and the shaking had stopped so they were able to continue the transfusion - slowly. It's crazy that they still have to give you something you are allergic to. The platelets are necessary even though they make him sick! When we finally got out of there Matt was SO tired. He slept all the way home, came home and got into bed, and is still asleep as I am writing this. These treatments are so hard on his body! I hate the fact that we have to make him sick in order to make him well. It is heartbreaking! :-(

And we were having such a good day....! :-(

Matt was tired this morning, so he didn't go to school. Otherwise, today was wonderful. He seemed so great when the home health nurses came to draw his labs. He even felt up to going grocery shopping at Sam's Club with me this afternoon.

That's why, I was so surprised when I arrived home and heard a message on my home phone from Hem/Onc. The nurse said they had received his 'counts' from his blood draw and his platelets were really low. Platelets help the blood to clot, so low platelets mean a small cut or bloody nose might not stop easily, and Matt might bruise too easily. Anyhow, he has to go into the clinic first thing tomorrow morning for a platelet transfusion! This is something very normal for a person having chemo, I just didn't expect it to happen so soon. It seems like lots of reports I get are people saying their children handled chemo well, weren't terribly sick, never needed transfusions, were able to go to school, etc... I suppose I just expected we would be in that group. Apparently,we won't be. Matt's ANC (remember, his total white blood cell count) is also getting quite low. He started at 8500, last week was 4500, and this week was 1200. Anything under 1000 is a 'gray area' in which we really need to be careful of germs and illness. Anything under 500 is critical and Matt is housebound with no visitors allowed. When Matt was 8500 I just felt optimistic that he wouldn't get to 500 very quickly. Now, though, at 1200, that 500 number seems WAY too close!

Today was just a dose of reality. I can't pretend my boy isn't terribly sick when we're going for a transfusion in the morning!

Fascinating!

Yesterday we had another LONG day down at Primary Children's Hospital. William had an appointment in the afternoon (made clear back in April!) with the Pediatric GI group for his pretty severe reflux he has had since infancy. In the morning, Matt had an appointment with the Neuropsychologist to have some testing done so we can better figure out what his brain is doing.

The results of the all day testing were fascinating. I really wish we would have had a BT (before tumors) baseline of these cognitive tests. This will have to do, though, and we hope to be able to track improvements in his memory. I felt really reassured about his cognitive functioning. He still scored "high-average" to "superior" in all of the cognitive tests. His processing speed is "average" to "high-average" and he did very well in each of those tests. His verbal IQ was 144! This score is after having brain-surgery, heavy-metal chemotherapy, and a brain tumor affecting his memory! 'Normal' IQ is 100, so it is pretty amazing that he scored so high.

The fascinating results were the memory tests. On one test Matt was given a plastic grid with 15 squares and these little round blue chips. He was given 10 seconds to look at a picture of a dot pattern, and then he had to re-create the pattern on his grid. Apparently, he did just awful on this test (which I would have predicted). He couldn't remember any of the patterns accurately. Then they did another test where Matt was shown 48 different faces. He then, immediately afterwards was shown a whole bunch of faces and had to say 'yes' if they were in the first group of 48 or 'no' if they were different faces. In this test, he got 42 faces out of 48! Then they went on to do another task and 35 minutes later came back to the face book. The test was repeated to see how many of the 48 faces he could recall. On this delayed test he got 44 faces out of 48! I don't know what's going on in that little brain of his, but I thought this was so fascinating! Then they did one other test where they told him a list of 15 items they were buying at the store. Matt was then asked what items were on the list. He was extremely inconsistent in this task. He could only remember a few items. Then, the list is repeated several times and he was asked again and again how many he could remember. Normally, people remember more items each time the list is repeated, but this wasn't the case for Matt. His correct answers were totally random (getting 5 correct one time, then 3, then 5, then 2, etc...) I can't wait for the official report with all of the test details (I am just repeating here the discussion I had with the Neuropsychologist). I am very hopeful that his full memory will return, but if it doesn't, I just hope we can find a way to successfully teach this kid who has so much potential!

Will's appointment also went well. I really liked these doctors - they took his situation seriously and are going to be very proactive. We are keeping track of his 'spit-ups' for a month and trying a few things to improve them. If we see no improvement they would like to scope his throat and try to figure out why this has been a problem for so long.

So, that was our long, tiring day! Now I get to go back to SLC tomorrow to meet with Endocrine... (sigh).

-Allison

P.S. I also made a little bit of a stink to the psychologist about never having met our primary Oncologist. The Neuropsychologist thought this was also odd and took me to meet the office coordinator guy. With his help it was very easy to switch Matt's chemo appointment to the 19th rather than the 20th and make the appointment with Dr. Bruggers. My friend from the pediatric brain tumor foundation told me that the neuropsychologist could work wonders in that department and she was right (thanks, Jamie)! So, in less than 2 weeks we meet our oncologist and can discuss our 2nd opinion with her! Yea!

In which Allison proves she's not as 'together' as she likes to believe.

I cannot figure out my meltdowns. I can explain Matt's situation, give gory details about his treatments, brain surgery, and hospitalizations to 100's of people and not blink an eye or tear up. It actually feels like it's becoming a part of our family. Sad as it is to think this is now defining us, it really is, and in some ways we are embracing it. We are becoming involved in different pediatric brain tumor organizations and are thinking about starting a foundation for pediatric brain tumor research and support. (Anyone have any clever names? The only one we can think of is "Miracles for Matt.")

So, today I decide it's finally time to return those W-A-Y overdue library books. Matt got sick right as the books were due, then my life fell apart, and truthfully, my chief library book tracker (Matt) could no longer remember where the books were hidden! Definitely one of the downsides of brain tumors . . . I've also been dreading this task because, well, Matt is my child who gets ecstatic at the thought of the library. I really didn't want to go at all, but knew I had to go face the music. I was feeling great this morning and was anxious to get a few errands run. At the library I proceeded to explain (generally) that my books were obscenely late, but that I had a good excuse. The librarian had to check with the head library guy, and he wanted me to come to his office. Apparently, they have had several people this week claim to have children in Primary Children's, and he thought I was another woman they had spoken to earlier this week. As he proceeded to look over my account and take off my fines, he agreed to waive them all if I would just pay $5. This was a kind thing to do and I had no problem writing a check. However, as I am writing, the tears just start and before I know it I am sobbing in this poor gentleman's office! As I am blubbering I worry that he'll think I am upset that I have to pay $5. That isn't it at all, the wave of emotion just hits me at the most bizarre times! I try to explain this to the man and he just hands me a tissue. So, then I have to weave my way through the (horribly crowded) library. The first day of story time was today and it was also voting day, so it was really crowded. I was so embarrassed. Luckily, there was a woman from my ward there who understood a bit about why I was melting down. She was so calm and walked me to the door. I'm sure everyone thinks I'm a lunatic, but, you just can't predict these things. For someone who considers herself usually pretty in control, these sudden losses of control are very disconcerting!

Some other signs and symptoms of my insanity:

Finding myself in Wal-Mart without a very important, um, foundation undergarment. I was totally dressed otherwise, including jewelry, I just forgot something important (especially for a woman who is 7 months pregnant)!

Missing the road to Wal-mart. Then, missing the road back home after I finished my shopping!

Taking my boys to the first day of school. Having long talks with both teachers and the principal and upon returning home having Warren look at me strangely and say, "did you know you have two totally different earrings in?" I did to - they weren't the same color, size, or style!

Driving home today I got clear to the canyon before it occurred to me that I had missed our street!

COMPLETELY losing it in the Verizon store. I am thankful I don't live in SLC because I can never go in there again. When Matt was in the hospital I was desperate for a new cell phone. My old one was completely worn out and kept cutting out on people. Verizon needed me to call my old provider and obtain my account number. When I was on the phone with my old provider they said they needed a picture ID. I totally lost it and started sobbing in the store. They were all very nice to me after that, Cingular did end up giving me the account number and the Verizon people were SO kind and helpful!

So, I suppose the lesson here is:

If you ever meet a woman whose son was recently diagnosed with a brain tumor, DO NOT ask her for picture ID or for a $5 check to get rid of any fines!

And just when I learned to pronounce (and spell!) Pilomyxoid Astrocytoma

This afternoon there was an email from John's Hopkins with their recommendations.

I wanted to pass on our recommendations. We reviewed Matthew's medical summary, pathology slides and MRI scans. In general, we are in agreement with the proposed plan as put in place by Drs. Yaish and Bruggers.

Dr. Burger (our neuropathologist) gave the tumor a slightly different diagnosis than the one from Primary Children's but this may, in part be related to having only a portion of the specimen to review at Hopkins as opposed to the entire specimen available to the neuropathologist at Primary Children's. Dr. Burger call this an oligodendroglioma type lesion which is a form of a glial tumor. Pilomyxoid astroctyoma is also a form of a glial tumor.

From a treatment perspective, I'm not sure it makes much difference. I still think it's reasonable to start with carboplatin and if that's working, stick with it. If it doesn't seem to be as effective as desired, I talked with Dr. Yaish about other choices (such as temozolomide) that might be substituted. Thanks for allowing us to reflect on Matthew's case. Please let me know if you have additional questions.

So, now I've learned quite a bit about Matt's tumor type and I need to start all over! I've been reading this article on oligodendroglioma. It actually sounds more like Matt's presenting symptoms, age range, and shows more of a tendency to do things that Matt's tumor did (like bleed and seed into the spine). I did post one more question to the doctors at John's Hopkins about the 'grade' of the tumor. The grade will make a significant difference in terms of his prognosis and also how responsive the tumor is to treatment. I really still do not want to ask about prognosis. To me, my strong boy has a 100% chance of surviving this nightmare. However, I believe it is extremely important to know exactly what we are dealing with so we can fight it effectively. I think I will talk with oncology about the possibility of adding temozolomide to his current chemotherapy. He was originally going to be on this drug, and it seems to be very effective against this new type of tumor. The side effects sound awful, though... It's hard to know what to push for.

Lastly, I can't decide whether we should try to get a 3rd opinion. The difference in diagnoses concerns me, even if the treatment might be similar.

Well, I suppose if I didn't have enough to stew about, I do now!

Love,
-Alli