Tuesday, October 30, 2007

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

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

Monday, October 29, 2007

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,

Saturday, October 27, 2007

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!


Tuesday, October 23, 2007

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!

Monday, October 22, 2007

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!!!


Saturday, October 20, 2007

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:
Our game name is:

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


Thursday, October 18, 2007

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!)


Sunday, October 14, 2007


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!


Wednesday, October 10, 2007

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!) :-)


Monday, October 08, 2007

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!


Friday, October 05, 2007

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!


Wednesday, October 03, 2007

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!


Tuesday, October 02, 2007

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.


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! :-)