Sort of back to normal

Luckily, we did not end up needing to head back to SLC to the hospital yesterday. We've worked out a good system where our pediatrician is a little bit more involved in the day-to-day stuff with Matt. It's nice because he is way easier to get ahold of than any specialist in SL! I've been taking Matt into the office each day for lab-work and they have been bending over backwards to accommodate us. Today the RN (because he has a central line, his labs have to be drawn by an RN instead of an LPN) met us at the office at 8:30 a.m. so Matt could get to school, but she wasn't even scheduled to work today! Things like that mean a lot to me. We also have a new system where I have to be obsessive about 'input' and 'output' :-). Matt has to drink a certain amount each day and we are hopeful that by concentrating his urine significantly that it will flush more sodium out. I didn't hear his numbers today, but yesterday they were coming down pretty well. He still has a ways to go, but as long as he is coming down they are happy. The endocrinologist also wants to write a prescription for a fancy-schmancy digital scale from the hospital supply store. I'm not quite sure what keeping close tabs on his weight will do but something important, obviously! :-)

We had a fun family evening tonight. It was USU's first home football game and we all went. We signed the boys up to be Jr. Aggies and they all looked so cute in their matching shirts. It was actually a pretty good game - both UNLV and USU are equally crummy teams so it made for an even match. After the game was over we went out to dinner and it just felt very good to be together as a family doing something 'normal' and fun. Matt had a nice long rest this afternoon, so although he was tired when we got home, he wasn't too tired to have a later than usual evening.




On the baby front... I went to the obstetrician yesterday. Everything is looking pretty good. He was a little bit concerned that I am already 50% effaced and my cervix is funneling. However, he said it wasn't hugely concerning because it's not terribly abnormal for a 5th baby. The baby is also quite low (which I could have told him - ouch!) He was also concerned about my weight gain, but I put an end to that conversation quickly. :-) I always gain TONS of weight when I am pregnant (75 lbs. with the twins!) so I'm trying to convince myself that I'll go back to my normal size after this little one, as well. The doctor is watching me closely and having me come every 2 weeks to see him. This is a new doctor for me and I really liked him. He spent a lot of time talking to me and took my concerns seriously. I've been worried that the stress of Matt is putting stress on the baby and might make me go into pre-term labor. The last thing I need is a 31 weeker! I am trying to take it a little bit easier - today I napped while Matt was asleep and it was so nice! I'm getting anxious to meet this little one, and at the same time, I wouldn't mind holding him or her in for 42 weeks! Babies are easier in than out!

That's it for now!

Love,
-Alli

Man, oh man, oh man...

Yesterday I posted about our 'new normal'. Unfortunately, our life is anything but! Last week when Matt went to chemo, they checked his endocrine panel and his sodium went up (again). People with brain tumors sometimes have diabetes insepidus - and Matt is one of them. His high sodium is what landed him in the PICU (pediatric intensive care unit) upon diagnoses of the brain tumor. They have increased the medication that helps his kidneys process the sodium, but it isn't helping. He was stable when he left the hospital, but his sodium is not staying in check. Right now it is 165. Normal sodium levels are 135-145, and high sodium can cause lots of problems, as can a high sodium level that comes down too quickly. We also have the unusual complication of Matt not being very thirsty. Usually people with DI are VERY thirsty and have to make sure they don't drink too much, but because of the tumors location, it affects Matt's thirst center, making him not thirsty. So we've spent this evening tracking down the endocrinologist on call and trying to figure out what to do. He's on the maximum dose of DDAVP already, so there's a possibility that a trip to the hospital will be in order tomorrow. The endocrinologist I spoke with was interested in speaking with our regular pediatrician tomorrow. He thought that maybe with some help locally, we might be able to avoid a trip to SLC. I sure hope so!

On a brighter note, we heard today about the second opinion:

Just wanted to update you on the process of the review. We looked at Matthew's studies today in our conference and are in agreement with the interpretation of the scans. Dr. Burger (the neuropathologist) is still in the process of reviewing the pathology specimens and I think he was asking your hospital for the original block which would allow them to cut more sections and do some additional studies. That might take a few days to complete.Once he's completed his pathology review, I'll be in touch. I suspect I'm going to be in agreement with the proposed plan, but I want to withhold judgment until I've heard Dr. Burger's opinion regarding the pathology.

So, it looks like they will be in agreement on both diagnoses and treatment. This is good news - it gives me confidence in my doctors. I am a little worried that the pathologist wants to do more testing, though - hopefully he is just extra cautious!

I had the most bizarre conversation with Matthew this afternoon when I picked him up from school. As we were driving, Matt said, "Mom, I know it's not really playing, but it sounds like there is music playing in the car." I asked him if he would sing the song and he said it wasn't a song with words, just a melody. When we got home Matt said again, "Mom, I don't remember anything that happened at school today except the music Mrs. Blair was playing." I absentmindedly asked him what music she had been playing and he replied, "Bach."
This exchange has me rethinking my assumption that he won't do piano this year. We were really excited to begin lessons with the youth conservatory at the university. They have fabulous teachers. Anyhow, I started thinking that perhaps keeping up in piano lessons would be a good way to work on his short term memory. I have always felt like music had healing properties, and they have done studies showing music lessons help kids brains develop. If I can find a teacher interested in working with Matt, I think we'll try it out. It can't hurt anything, and it would be wonderful if it helps!

Wish us low sodium tomorrow!
-Alli

New Normal

I think today was a pretty typical day in our 'New Normal' life. This morning Matt felt well enough to go to school and he wanted to take the bus with Will. I wanted to let him, but started to panic when I thought of him attempting to find his classroom on his own! Will is a little bit young for that responsibility, so I called a couple of moms of other 4th graders and asked if their kids could just make sure Matt found his classroom. It turns out I know a few moms who have children in Matt's class who take his bus, so they were able to all walk together to his class. I decided after the first day of school that a full day was just too long for Matt. He is so incredibly tired from the chemo - Sunday he slept ALL DAY, only waking up to eat. So, I thought it would be best to do half days unless he is feeling super well. I picked him up from school at noon, he ate lunch with his little brothers, and then he asked to go up to bed. He slept all afternoon, but had a great evening because he was well-rested. He even had a friend over this afternoon! It's funny how things like giving medicine (it seems like a lot - 6 pills morning and night, plus a nose spray to control diabetes insepidus), orchestrating his life so he finds his way around, and flushing his Broviac, are becoming part of our routine. It is certainly a different 'normal'!

This made my day!

Today I emailed the doctor at John's Hopkins to let him know Matt's chemo treatment plan and also to see if they had received the slides from pathology. In less than 5 minutes I received this reply:

"I did receive the slides and pathology is reviewing the material now. I plan on presenting Matthew's case on Tuesday morning and then I'll be in touch. I forgot to ask, who is the treating oncologist?"

I am so THRILLED that they will be reviewing his case in just TWO days! It makes me want to move to Baltimore so these doctors can handle Matt's care. I thought the question about Matt's treating oncologist was a little tricky since I've never actually met her... I mean, can any doctors reading this tell me if this is normal? It seems so bizarre to me that the person who is supposed to save my sons life has never taken the time to examine him, or look me in the eye so I can decide to trust her. Maybe I'm overreacting, but it really ticks me off!

So, everyone can anxiously wait with me to see what these different doctors say!

Have a happy weekend everyone!

Love,
-Alli

P.S. Tonight we had a nice 'breakthrough' moment! Matt and I were talking in the car. He is so tired right now and he was all curled up in a blanket, resting. I asked him if his stomach felt okay (Carb is supposed to make you very ill). He said his stomach was a little bit sick, but he didn't need any medicine. I started to explain that he might need some extra medication for his sick stomach when he interrupted with, "I know, Mom. The chemotherapy helps the tumor but makes me sick in other ways." I almost cried at this level of understanding from him! It is so rare that he remembers what is going on (i.e. that he even WENT to chemotherapy this week), that I was blown away by this comment! I think everyone's prayers are helping. THANK YOU!!!

First Day of Chemo and SO FAR SO GOOD!

Matt had his first round of chemotherapy yesterday. It was a LONG day. We had to be in SLC by 8 a.m. for his first appointment - which means we had to leave Logan a bit before 6. He first had an audiogram to check his hearing. One potential side effect of the Carboplatin is hearing loss, so before each round of chemo he will be having a thorough hearing check. After the audiogram we headed down to oncology. We met the oncology Fellow and really liked him. He was very knowledgeable and easy to talk to. After waiting for several hours and talking to many different people, it was time for Matt to go back to 'infusion.' He received a bag of fluids, then got an anti-nausea medication, then the carboplatin, then more fluids. He was able to watch two movies and eat lunch while he was there. He complained a little bit about his stomach feeling 'funny' but didn't get sick this first time. He was also quite tired when we got home, which is likely from the medication, but also probably from such a long day. This morning he woke up feeling well. He had a good appetite at breakfast and he wanted to go to school. I decided to keep him home to let him rest for today and this weekend. Hopefully next week he can go to school for a bit.

Primary Children's hospital has a program for critically ill children called 'colors of courage.' Basically (in Matt's words), for every horrible thing they have to do to you, you earn a specific color/style of bead. We laughed at that analysis. I was surprised, when I started looking at the list to give to the social worker, at how many procedures Matt has had. He has had a:

Biopsy

2 PICU admissions

PICC line insertion

Clinic visits

Course of chemotherapy

Dressing changes

Inpatient admission

Numerous IV starts

Lumbar puncture (Spinal tap)

Several Morphine infusions

Port access

Surgery

Many tests and scans

Tube insertion (his Broviac)

So, he has quite a little collection of beads already! It's amazing how quickly it adds up over 3 weeks!

Love,
-Alli

Bittersweet Day

Yesterday was the first day of school for Matt and Will. Despite Matt having had his Broviac placed the day before, he adamantly insisted that he wanted to go to school. He did very well the night before and wasn't complaining of any pain, so I relented. William started first grade - he was so cute in his new jeans and sneakers and glasses! I need to post some pictures... Anyhow, I took both boys to school so I could meet with their teachers for a second before school. First we went to Matt's class and I think I panicked the teacher a little bit when I had to briefly explain what to do in case Matt's Broviac gets a hole or breaks (there will be a LOT of blood since it's in a main artery, and you have to quickly put gauze over the hole and clamp it). It is not very likely that anything will happen, but everyone who cares for him needs to know what to do in an emergency - and I'm convinced that recess would be a prime time for such an emergency! She seems like a wonderful teacher. She is known for having a strict schedule and expecting a lot from the kids. I feel bad that Matt won't be able to fully take advantage of her style this year - I think she is a great match for him! We then all walked down to Will's classroom. His teacher is so sweet! She was just delightful with all the 6 year olds and I think she will also be an excellent fit for Will. Kindergarten starts Monday, so it will be a few days before we do the 1/2 day K 1/2 day 1st grade thing with him. He was so excited to come home and announce, "I LOVE first grade, I got THREE recesses!" :-) I left Will in his class and Matt and I walked back down to his class. I was really worried when he couldn't remember his teacher's name or where his classroom was! I can't begin to explain how debilitating short-term memory loss can be. It also has its funny moments, but leaving him at school to fend for himself was not one of them! I explained to the teacher about the memory loss, but you have to be with him for a few minutes before you really understand. But, I got him settled at his desk and LEFT! I called the school after lunch but his class wasn't back from recess yet. So, I decided to run down to the school to peek at him. I was worried that even if I spoke to him on the phone, he might not tell me if he was too tired to stay at school. I needed to physically see how he was doing. He was doing great! I'm not sure how much he remembered about his day, but he really wanted to stay the rest of the day. Yesterday evening was difficult. Matt was extremely tired - which exaggerates his memory symptoms. As I was cleaning out his backpack and checking his folders, I just lost it. I have been holding it together pretty well the past few days, but looking at all the 'normal' fourth grader stuff that has always been so easy for him but will likely be impossible this year, was just too much to take in. School has always been Matt's strength. Now, to have it be a challenge on this level is extremely difficult to adjust to. I think I could deal with and get used to him having brain cancer (although that is hard and awful, as well), but worrying that I've lost the boy I know to this disease, even though he isn't 'gone' is very painful. I just pray that my spunky, smart, '9 year old boy in a 40 year old man's body' will somehow be given back to me. I know it isn't as important as treating the tumors, but if there might be some prayers sent that his memory can improve - or that I can know of things to do to help him in this way, I would be so grateful! Love to you all, Alli

Why on Earth do they think we can do this???

Today Matthew went in to have his Broviac placed. Of course, the 1/2 hour procedure took ALL STINKING DAY!!! They wanted us there at 9:30 a.m. and said his surgery would be 60-90 minutes after that. Well, by 12:30 I was beginning to feel a little abandoned so I went to the nurses desk to make sure they remembered we were sitting there. They hadn't forgotten us, but when they called the OR we were scheduled for, they said it would be another hour, at least! Yikes! I'm not irritated that we had to wait - I do understand emergencies, that OR's are always running late etc... However, don't you think it's common courtesy to let a family know their surgery has been pushed back 3 HOURS?!?

So, while I'm feeling rather complain-y, I guess I can go off about Oncology, as well! The transition from the Neurosurgery group to the Oncology group has been a bit rocky, to say the least! We have yet to meet the Neuro-Oncologist that we should be working with. All of our contact with Oncology has consisted of a 5 minute visit (with the Hematologist - which would be great if Matt had Leukemia!) before we were discharged from the hospital (in which the doctor just told us we didn't have a treatment plan as of yet). Then a call on Friday (from the same doctor) telling us our 'plan' and answering a few questions I had. Both conversations together took no more than 10 minutes. So today the Nurse Practitioner who is prepping us for surgery is asking me all sorts of questions about his Broviac, his treatment plan, my training in care of the Broviac, and is HORRIFIED that no one has spoken to us in-depth about what is happening. I mean, this is life altering, scary stuff for parents, and no one has bothered to tell us anything. She got upset and says she is going to call them. She calls and tells them that we need someone to come talk to us. The lady from Oncology gets huffy and tells the Nurse Practitioner that we need to make an appointment! Finally the oncology nurses asks for our name, and when the NP tells her Matt's name she says that we are scheduled to be seen in the Oncology clinic today. Um..... was someone going to let me know about this??? So, while we were waiting for surgery we decided to walk up to oncology. They see us and we get things going. Everything turned out well, but I think they seriously need to work on their new patient transitions!

On a positive note, we had the BEST nurse in oncology (FINALLY) discuss lots of details with us. The scariest parts were related to Matt's blood counts. There are many guidelines to follow that give us signs and symptoms we need to watch for. Here is a site that discusses blood counts and things to watch for in a patient receiving chemotherapy. It's scary to think how susceptible to infection Matt will be when his counts are low. He will need to wear a mask and remain inside with no visitors besides immediate family if his ANC is 500 or below. We also have to be obsessive about keeping sick people away from Matt at all times. If he runs a low-grade fever it means a trip to Primary's and a shot of antibiotic. If the fever is a bit higher, it means admittance to the hospital. Scary stuff!

The nurse also showed me how to take care of Matt's Broviac. I was surprised that I will be in charge of the care - dressing changes, cap changes, and daily saline and heparin flushes. I mean, who do they think we are? Honestly, I can't believe they do surgery to put this thing in your child's body, talk to you for 30 minutes about keeping it clean, schedule a home-health nurse to come assist you, and let you take your child home and expect you to not mess any of this up! It's a bit overwhelming! I'm sure it will become routine, but sheesh, it sure feels foreign right now!

LASTLY (I promise I will end this post soon), they wanted to change Matt's chemotherapy plan. There is a doctor at Duke who did a study on the chemo plan we were going to have. He found that there was a significant increase in allergies to carboplatin, when it was given weekly along with vincristine and temozolomide. Since carboplatin is supposedly the most effective drug for this type of tumor, we really hope to avoid allergic reactions to it! Anyhow, this doctor at Duke recently published a study that showed a once a month chemo regimen in which the entire dose of carboplatin was given (so, 4 times as much as would be given weekly) showed a high success rate, low allergic reaction rate, and lower instance of side effects. Then the tumor is re-evaluated at the 3 month mark to see if it has shrunk or stabilized. I like the idea of less toxicity and fewer chemo medications in my boy. However, I also worry that this treatment is NOT ENOUGH to fight the tumors. I suppose it comes down to the fact that I'm nervous about the treatment no matter what they recommend! We are still anxious for our second opinion to come in. Hopefully they will have all they need to review Matt's case next Tuesday. I am ready to see how they would fight this thing! I hope the two opinions concur (well, that's too much to hope for - I hope they are close to one another). Then we can feel even more confident about his treatments. If they differ drastically, we might contact the doctor at Duke to see if he will give us a THIRD opinion.

Okay, congratulations - you made it to the end!

Love,
-Alli

Kennel Kindness

The day we found out about Matt's tumor, I truly wasn't thinking about the dog... In fact, I completely forgot that she was in the crate in the garage until we had almost arrived in Salt Lake to meet the Neurosurgeons. I called my SIL, who also had my boys and sheepishly told her I forgot the dog. I asked if they could pick Aspen up and take her to the kennel that we use in Brigham City. So, the next day, with no notice, my BIL arrived at the kennel, explained the situation, and told Phylene (the owner) that Aspen needed to stay and he had no idea how long it would be.

Well, this afternoon we finally got down to Brigham City to pick up the dog. We owed the kennel at least $200 - Aspen had been there for several weeks!

THE OWNER REFUSED TO TAKE ANY MONEY!!!

It's funny how acts of kindness of this sort are the things that make me 'lose it'. I had tears running down my face when I thought of this kind thing she had done for our family. We are trying to figure out some sort of donation we can make to help her out. If anyone has any ideas of something a kennel owner would appreciate (besides lots of dog food - we already thought of that :-)) please let us know!

And, I think I have to put a plug here in my blog for Ellie's Pet Hotel and Phylene, the kind owner who wouldn't take our money. She is truly THE BEST (and we thought that before she was so nice to us!) Her dog grooming is impeccable, she is so kind to all the animals, she is very knowledgeable, and her facility is clean and well-managed. I can't say enough good things about this place. Check out the theme rooms! :-)

So, next time you need a place to board any type of pet, check the place out. We feel like it's worth the 30 minute drive from Logan!

Treatment plan

Yesterday the 'tumor board' at Primary Children's met to discuss Matt. They determined that he would begin Chemotherapy right away. He has a 60 week treatment plan which will entail cycles of 6 weeks of Chemo, then 4 weeks of 'maintenance Chemo' that they call a rest period. During this time they will re-evaluate the treatment and see how the tumors are responding. He will be on 3 drugs, which of course I can't remember. (Carbo-something, Vinc-something, and a pill that starts with 'T'). We just spoke with the Oncologist on the telephone. We will meet to discuss things more in-depth this week. I also spoke with the doctor briefly about Matt's school (he will need a home-bound teacher this year, although he may be able to attend school during brief periods when everything looks well). I also asked about our dog. I have been worried that we would need to find Aspen a new home. The doctor said that he would tell us 'no' if we were going to GET a new dog, but since Aspen already lives here, she can stay. The doctor said it would probably be more traumatic for Matt if we had to get rid of Aspen. So, I'm not quite sure how we will take care of her - she will probably be in the kennel a lot this year, but at least she can remain part of our family!

This week, we will also be taking Matt down for a minor surgery to get a Broviac catheter placed. This is the line through which he will receive his Chemotherapy. Then, the doc said, a day or two later he would begin Chemo.

So, we have a crazy-full week with 1 surgery, the first day of school for Matt and Will (if Matt feels well enough, we hope he can go for the first day to at least meet his teacher and other kids in his class), and the first day of Chemotherapy.

Are we ready for this?

I'm not so sure.......!

Really antsy!

So, on the one hand it is nice to be home. Our family is enjoying being together and feeling sort of 'normal'. However, I can't think of a more helpless feeling then that of being home doing NOTHING when I know this tumor is growing in my baby everyday! It's difficult to get started doing anything (errands, etc...) because it feels so strange to not be focused on Matt's treatment. In due time (hopefully tomorrow... ;-)) we will talk about the treatment plan, review the second opinion and get this show on the road. Today, I just couldn't sit around, though. I started calling the hospital to talk to those who could help me gather the information John's Hopkins has requested for the second opinion. I talked to four helpful ladies, in four separate departments, and I just knew that I could NOT wait around for the stuff to arrive in the mail. So, since Matt was having another great day (no headache again, and he seems to be remembering stuff today (yea!)) I decided that I would drive to SLC to pick up the records I needed. The 3 hour round trip drive was worth it because I now have everything I need to send in my hot little hands. Besides, looking over his records - especially the operative report - was fascinating! The only thing that may take a little bit of time are the copies of the slides from the pathology department. The gal there said it takes a few days to 'cut' them and that if Johns Hopkins would request them, she would send them directly there. Hopefully that doesn't hold us up too much. While there, I also had the Neurosurgery nurse take out all of Matt's 35 stitches.

In other news, we received a surprise visit from Will's teacher from last year. I have been debating where Will should be this year. I was considering putting him in Kindergarten again because last year was a total bust for him.

First of all, he had hernia surgery which kept him out of school for 2 weeks.
Second, he broke his elbow and was in a full shoulder to wrist cast for 3 months.
Third, we moved and he was out of school for several weeks while we found a house.
Fourth, he started a new school with a very different curriculum from what we left.
Fifth, he is one of the youngest kids in his grade since his birthday is the very end of July (cutoff is September 1st).
Sixth, he is his own little person and while he is incredibly bright, he tends to do things about 6 months later than my other kids. This is not a big deal at all, but all milestones have followed this pattern for Will. So, being the youngest child in the grade just doesn't feel like the best fit for him.

So, all of these things combined with Will's personality had me really feeling strongly that he could use a good full year of Kindergarten. I had been thinking about it all summer, and his teacher and I were set to speak in August about what we would do. When we found out about Matt's tumor, though, I immediately felt like a nurturing Kindergarten environment with a teacher he was already comfortable with was the right choice for Will.

Well, his teacher stopped by last night and we discussed options. She is so wonderful! I think we've come to a good conclusion about what will work this next year. William will go to Kindergarten in the morning (K is just 1/2 day here), then he is going to go to first grade during the 2nd half of the day. That way, he gets the K curriculum for reading and writing and math, but still gets to go to 1st grade for the 'extra' stuff and lunch. Then next year he will transition into full first grade (unless he just shoots off academically this year, then they will put him into 2nd grade). I just cannot tell you how good I feel about this scenario for Will. I think it will be the best of both worlds, and he can go to school for a full day, which I believe will be good for him. I am just overwhelmed at how supportive and kind everyone is!

-Alli

Rambling about all sorts of stuff...

Today we had some good news. A couple of doctors studying PMA (Matt's type of tumor) at Johns Hopkins are going to review Matt's diagnosis and treatment plan. We have wanted a second opinion, and are glad these doctors have agreed to provide one. Assuming we can get the information to them this week, we may have their opinion by the end of next week.

Matt had a good day today. He was up and around all day. We took him out to lunch with some friends who were visiting. He insisted all day that he didn't have a headache and so has not had any pain medication - pretty remarkable for 1 week after brain surgery! His main complaints are still the excessive sweating and shaky legs. Today he was just darling, though. I think I've wrote before that we joke the tumor is affecting his 'pleasant, helpful' section of brain. He continually asks what he can do to help (although if I do give him a job, he forgets what I sent him to do... :-)). Today he really wanted to keep the younger children entertained. He read to them (another good sign, I think!), and generally just helped organize them and played with them quite a bit. He also surrounded himself with his 'normal' items - his Gameboy, Harry Potter 7, this bird book that he has been looking at a lot lately. Seeing him with this stuff makes me hopeful that our Matt will return - along with his short term memory!

Today we had the first of probably many experiences involving Matt's short term memory loss. One of Matt's cousins described Matt's current behavior as being like Dori from 'Finding Nemo.' It is really a spot on description. He has a hard time remembering things we did 10 minutes ago, even if he can recollect in minute detail, things that happened to him at the age of 4. Anyhow, Matt told Will that Will could play his new Pokemon Gameboy game. Then something happened and Matt took it away, didn't remember the promise he had made to Will, somehow lost the game, and then truly couldn't remember where he had put the game. Will was just devastated! Matt has always been so reliable about keeping his promises, but tonight he just couldn't remember that he had promised anything! It will take awhile before William understands Matt's new limitations. It is very hard on our kids, especially Will, to see a different Matt emerging.

We have also realized that many people don't know that we moved to UT. We have been here since March. Warren got a job offer from a firm with the a SLC office (main firm is located in Palo Alto, CA). When he went in to quit, his current firm made him the same offer- but he could work from home since his current firm does not have an office here. Staying with the same firm and working from home meant we could live anywhere. We had such positive memories from our undergrad days at USU that Logan seemed like the right place. It is also centrally located for our extended family. Warren travels from UT to Chicago a couple of times a month, but spends the majority of his time here. Best of all, Warren gets to spend more time with the boys doing the things we love (hiking, camping, jeeping (Warren bought a new jeep . . .), fishing, skiing, etc.). At the time, it just seemed like a good opportunity for Warren's career and our family, now we truly feel it was 'meant to be.' We can't imagine living in Chicago and trying to fight this battle without the support of our extended families.

Wow, for having such an uneventful day, this post sure got long! Congratulations if you made it through the WHOLE THING!!

-Alli

***We Are HOME!!!***

I am so thrilled to be here in my own home today. They *finally* released Matt yesterday around 4 p.m. We knew they were working on getting him released, which is why I didn't update yesterday. Then, by the time we got everyone home and fed, we were all so tired we just fell into bed and had a great night's sleep.

Matt has just slept like a log. Even as a patient, in a 'real' bed, you just don't sleep well in a hospital. I think it will be great for Matt to have a week or so recovering and resting in his own bed. I am still a little bit nervous about being in charge of his care. I need a schedule to keep track of his medications (medications for a kid who seldom even had Tylenol before two weeks ago)! Warren and I were laughing about all the times we had taken home newborn babies (well, all 4 of them). It's always scary knowing that you are in complete charge of this little person. I feel SO MUCH MORE stressed about taking care of Matt. I worry about forgetting a medication, not noticing a sign of something wrong, not being able to call in a doctor or nurse for every little question, and just keeping him comfortable. I know this aspect will only get harder as he has more and more medications.

We met with a Neuro-oncologist yesterday. There is no treatment plan as of yet. Matthew needs a little while to heal from the surgery. They are having a big 'team meeting' on Friday to talk about Matthew's treatment and care. I guess there will be some debate about whether he should have a combination of chemo/radiation, or if they might just try chemo. Radiation is damaging to a child and his tumors are so widespread that they are worried about damage to all the surrounding tissues. I'm anxious to see what they will recommend, and then what our 2nd opinion will recommend.

For now, though, we are just enjoying our time together in our home. It is so wonderful to be here!

-Alli

Thankful for so much...

This morning was a comforting morning. We did receive both good and bad news, but Matthew seemed to be doing well - mornings are the best. He woke up requesting a shower (trust me, this is a first for my 9 year old boy)! We got him all clean, he ate a nice breakfast, and then we decided to go down to 'church'. Primary Children's Hospital offers a 30 minute sacrament meeting. It is such a great service to the families here. Matthew seemed very comforted by this little bit of normalcy. I am not sure I have ever felt the Spirit quite as strongly as I did in that little meeting. As the congregation began singing, "We Thank Thee O God For a Prophet', I became overwhelmed with emotion, and comforted at the same time. I was totally unprepared to lose it (i.e. I didn't bring any tissues!) but luckily they line the sides of the chapel with boxes of tissues. It was tremendously comforting to be surrounded with families who also have critically ill children, but also have the same faith as I do. Matthew's spirit has always been bigger than his little body. From a very young age he has received comfort and guidance from Heavenly Father. Now is no different. Matt's faith buoys up my faith, his strength makes me stronger, and his happy demeanor helps me remember to have joy.

Now for the 'news'. The good news is that this morning they were talking about sending him home tomorrow (yea!!!). He needs awhile to heal from the surgery before we begin treating the tumor. I can't tell you how wonderful it sounds to sleep in my own bed, surrounded by all of my boys. I think it would be good for Matt, as well. Now, it has been made clear to me that Oncology may have very different ideas about when it will be appropriate to send him home - they often want to start treatment right away, so we'll see if Neurosurgery wins this particular battle! :-) The bad news is that the MRI they took yesterday (remember, they just got the brain, not the spine) showed seeding in the spinal cord, which they had strongly suspected after the first MRI. We are disappointed and heartsick to know that the tumor has spread. However, Dr. Walker hasn't seen the films yet, and he may still think there's some question.

Thank you all again for all of your prayers on our behalf. It is amazing how comforted I feel.

Love,
Alli

Diagnoses

Yesterday we learned the pathology of Matthew's tumor. Matt has a Pilomyxoid Astrocytoma. The doctor thinks it is a medium grade (so not slow growing, like we had hoped, but not the most aggressive) tumor. Right now we are waiting to speak with Oncology (we will probably hear from them Monday). They will help determine what will be the best course of treatment. After we speak with them we are anxious to begin the search for the group that can give us a second opinion. I am hoping that the two opinions concur on diagnoses and treatment, because I want him to receive his treatment here in SLC. I really like this hospital and am very impressed so far with the doctors. Of course, we will take him wherever we need to if we feel he can get better treatment, but this feels like a good place for him.



Matt is healing well from the surgery. The drain came out yesterday and it is nice to see one less tube hooked up to him. He still doesn't react very well to the steroids but they are a necessary evil for a little while longer. He has a pretty wicked headache, which is to be expected! Overall he looks and feels very well. Dr. Walker ordered another MRI this morning of Matt's brain and spine. They got good pictures of his brain, but they tried to sedate him for the spine (he tries to hold still, but the steroids make him very shaky!) He again fought the techs when he was sedated and they weren't able to get the pictures they needed. He shouted at them (and Warren, who was helping):
"I demand to be released!!!" :-) Personally, I like to see the fight in him - I think it's a good sign!
We are anxious to see whether or not the tumor has truly seeded into the spine or if what was showing up on the MRI might be blood. I am frustrated that we have to wait until Monday to see that answer! They think they will put him under General Anesthesia on Monday so they can get MRI's where he is perfectly still.

His night went well. My mom (a.k.a. 'Grandma Julie') stayed all night with him last night and he slept very well. After 8 straight days of being here at the hospital, Warren and I needed a full night's rest. We booked a room at the 'Little America' and when we arrived were told our room had been given away. They had moved our reservation across the street to the 'Grand America' - the only 5 star hotel in Salt Lake! It was such a wonderful break. We showered, ordered room service, and were in bed by 9:00. It was fantastic to sleep for a good 10 hours straight. Now I feel ready to face several more days in the hospital.

Love,
Alli

Hopeful??? News...

Last night Matt was able to sleep well. He woke up very alert and ate a BIG breakfast. His fluid levels keep doing funny things that get everyone worked up - this is normal, they tell me, after surgery around the hypothalamus. We have to keep correcting medication for his sodium levels being too high, then too low. Last night something else was high (calcium, maybe...? I really should keep better track of these things)! Anyhow, this morning everything is looking good again on the labs.

Dr. Walker came in this morning and they are going to take the drain out (yea!) They are also going to start to taper him off of the steroids which I think will help a lot with the shaking and sweating. Also, he thinks we might have a diagnoses from Pathology this afternoon. Keep your fingers crossed for us! On the one hand, it's like waiting for a bomb to drop, but on the other hand, the not knowing exactly what it is could drive me crazy! We can't start getting rid of it if we don't know what it is! Also, Dr. Walker talked a little bit about how he is beginning to wonder if the 'tumors' he saw in the spine might have been dried blood. I'm not exactly sure what the implications of blood clots in the spine might be, but it surely must be better than tumors!!!

Here is Matt shortly after getting his drain out.


Hopefully in my evening update we'll have some sort of (even tentative) diagnoses!

-Alli

Hard Day

Today was a little bit difficult for Matt. Interestingly, the 8 inch gash in his head wasn't causing the least bit of problem. Tylenol has been keeping that pain at bay pretty well. The other medications, especially the steroids, are much more difficult to deal with. They are important to keep the swelling in the brain minimized, but they cause all sorts of nasty side effects. Today, Matthew was so shaky. It was very severe and had me panicked. The only way to describe it is the uncontrollable shaking of someone having a seizure. However, since he was awake, it was not a seizure (in any event, a seizure isn't something that would be outside the range of 'normal' behavior after brain surgery). He was just shaking uncontrollably and sweating profusely. We changed his sheets multiple times. We were finally able to get him a sedative that relaxed his legs and body enough that he could get some rest. He fell asleep the very second the medicine was completely in his system. The rest of the evening he rested calmly.

I am suprised at all he is doing this soon after surgery. He is getting up to use the restroom (with LOTS of support, but walking), he is alert and talking to us, and after building up to it all day, he was allowed to eat a soft dinner. I am convinced that plain noodles have never tasted better to anyone!

No news on the biopsy, yet. I learned today that pathology reports are a bit more like art than science. I guess I imagined them sending a bit of the tumor through a machine and the diagnoses for what it was popping up on the screen! Apparently it is much more looking and testing and talking among other pathologists. Hopefully, they will put their heads together soon and figure out what is in my baby!

Last night

Matt's incision, immediately after surgery. Amazingly, he was alert and talking to us at this time.

Matthew had a great night (everything considered :-)) We were able to see him last night right after the surgery. I was suprised to see that he was awake and the incision was only covered by a towel. I suppose I expected that his whole head would be wrapped in bandages and that he would be sleeping. He does have a lot of tubes - including a drain (about the size of a large IV) in the top of his skull. He was properly responsive to the neurological tests and could talk to us. The breathing tube was not in anymore. He looked at me, though, and said, "Mom, I think I might have strep throat..." :-)

This morning he is even more alert. It is very difficult to tell whether or not his short term memory will be improved. Morphine will make anyone repeat themselves! I think he looks a little better and calmer. He is also on a clear liquid diet. That is making him very happy. He just went for a CT scan to see how things look this morning.

We'll see how the rest of the morning goes, but so far so good!

I took some pictures of him immediately after the surgery, but I need to decide whether or not they will be too graphic! I don't want anyone to feel uncomfortable seeing his incision. It's about 8 inches across the front of his head!

I'll try to update again this evening!



Love you all,
Alli

Craniotomy update...

Matt, waiting for surgery - those green things on his head are markers to be used during surgery (they take MRI's with the markers and then the surgeons have a 'map' to know exactly where they are.


Now it is Wednesday. His surgery was scheduled for 1:30. They said it is typical for the OR to be running late and today was no exception. We didn't leave his room until almost 4:00, and it took until almost 5:00 for us to talk with the surgeon and anesthesiologist.

We received an update at 6:30 and they had just started opening the brain. He had taken the anesthesia well and his vital signs were strong.

At 8:00 we were told the surgery was going well, but they hadn't reached the tumor yet.

9:00, we were just told that they had started closing the skull. Dr. Walker will be out to speak with us soon.

9:30. Dr. Walker came in and told us it didn't look like a Germinoma (the type of tumor we were hoping for). They took a small piece to biopsy and also removed a blood clot. We are hopeful that by relieving a tiny bit of the pressure, Matthew will regain his short term memory. It will be tomorrow before we know very much, though, and Monday before we know for sure what type of tumor it is.

Thank you again for your prayers!

BLINK!!!

This is a difficult post. I have been meaning to update my blog for ages, but a TON has happened. However, updates on those major changes will have to wait for another time because one week ago my life as I know it changed dramatically.



Tuesday of last week I was the mother of 4 happy, healthy, active little boys. Matt had just started football, we had started shopping for the new school year, and I was a bit obsessed with baby gear (I am almost 30 weeks along with baby #5 - one of my "I've gotta blog that" major updates). After dinner on Tuesday, I sent Matt upstairs to get ready for football practice. He seemed to be taking a long time so I called up to him to find out what was wrong. He called back that he had just thrown up. I helped him get cleaned up and prepared myself for a week of the stomach flu. That night he continued to be violently ill - throwing up or severely dry heaving every hour. He also did some strange things, like turn the radio on loudly at 3 a.m. The next morning I called the Pediatrician because Matt seemed confused. He kept asking me what day it was, and saying funny things out of the blue. They had us come in right away and OF COURSE Matt acted fine in the office. He was answering all of the doctors questions perfectly. They tested his blood sugar (normal) and sent us home with instructions to continue treating his 'flu'.



That day, Matt's strange behavior continued. He was very tired, but when he woke up he again didn't know what day it was. That afternoon we had some major fires in Cache Valley that were right behind our home. Matt seemed very confused about the fire - I kept having to remind him that there WAS a fire. The fire truck was in front of our house, with the hose stretching across our driveway. The other boys were fascinated, but Matt couldn't quite figure out what was going on. He kept asking why the trucks were there! That evening we were evacuated from our home for several hours. During that time we drove to Salt Lake (Oh, yeah, we moved to Utah - another major update) and picked up Warren from the airport. On the ride home, Warren became very concerned with the repetition of the same questions over and over. One of the oddest things that happened was when we arrived home. I went upstairs to put the boys to bed. I came downstairs and Warren and I were talking in the kitchen. Matthew heard us and dashed down the stairs. "Hi Dad, he exclaimed. We have missed you so much while you've been gone!" He had just been in the car, talking to Warren for 90 minutes. We determined that I would take him in immediately the next morning (at this point it was after midnight).



Thursday morning I called the Pediatrician again, explaining Matt's symptoms and insisting that we needed to be seen again. I was so relieved when they decided to send us directly to the hospital for an MRI and some blood tests. During the MRI it was clear to me that something was dramatically wrong. The MRI was taking way too long. After quite awhile they decided to inject dye for 'contrast'. After the MRI the tech repeated several times that I needed to call my doctor right away, if he hadn't called me first. He was also sure to give me copies of the MRI scans on CD - I'm pretty sure that isn't 'normal' procedure. We left the hospital and the pediatrician called me before we even arrived home and asked me to come to the office right away. With shaking hands and a sick feeling in my heart we went to the office (Luckily, Warren was with me because that morning the car wouldn't start - of course - so Warren drove and dropped Matt and I at the hospital.) They had us come back right away and the doctor delivered the devastating news, "I'm not going to beat around the bush", he said, "Matt has a fairly large growth on his brain. You need to go to Primary Children's Hospital right away, here is the name and phone number of the Neurosurgeon. They will be expecting you." I felt like I was in a fog as we left the office. We went home. On the way I called my mom and dad and Warren called his mom. We tearfully told them that it was a brain tumor and that we were heading to Salt Lake right away. I called my visiting teacher (thank goodness for visiting teachers!) and she took Will, Nate and Drew. We packed a bag of a few toiletries and changes of clothes (I didn't know if they ever sent people home with brain tumors......???) I had Matt get in the shower. Since we had thought he had the flu, he was looking and smelling really 'sick'. A few minutes later we were on our way to Salt Lake.



When we finally got in to see the Neurosurgeon, the news was quite bad. Matt's tumor was fairly large (3 cm, they estimated) and was in a very bad spot. It was right in the center of the 3rd ventricle, blocking the flow of spinal fluid, and affecting his hypothalamus (the hormone regulating part of the brain). He had a pretty dramatic sodium level (indicating that his kidneys were not functioning well). He was admitted to the ICU right away. We spent the next day getting tests (CT scans, more MRI's of the brain and spine, and lots of opthamological testing to see if the tumor was affecting his eyes). That was a bad day (Friday). Matt did not do well with the anesthesia. He needed more then they anticipated, he woke up more quickly then he should have, and he was very MEAN and STRONG when he woke up. Warren and I peeked into the MRI room and there were SIX people holding him down!!! It was an awful day. The worst part, though, came at the end when the neurosurgeon came in and with a grim look told us that the tumor had bled (causing the sudden onset of symptoms) and that it had also seeded and spread down his spine and there was another tumor wrapped around his spinal cord. I have never felt a blow like that in my life and I broke down and sobbed uncontrollably. Because of this news, it became impossible to continue with the plan of an endoscopy (where they drill a small hold in the skull and extract a tiny piece of the tumor using a long needle) on Saturday morning. Instead the doctor decided to try to get a diagnoses with spinal fluid, hoping that the fluid would show what type of tumor was there.



Saturday and Sunday were pretty good days. I just kept thinking:

No news is at least not bad news...

Sunday morning Matt was moved out of ICU because his sodium levels had stabilized. I was a bit shocked when he was moved to the 'Neuroscience Trauma Unit'. That unit name was a big dose of reality for us. I guess I imagined him going to a unit mingled with 'regular' sick kids. I know it's where he needs to be, but it was still a shock to be there!



Monday afternoon we learned that the spinal fluid had all come back 'normal' despite being cloudy and bloody. At first my heart leaped at this news, until the doctor explained that this only showed that they were simply not finding what they already knew was there. They decided, after much discussion that they needed to do surgery because they couldn't treat the tumors until they knew for sure what they were. I suppose that I always thought a tumor was a tumor and that they were either benign or malignant. Apparently there are over 100 different types and then different classifications within each type. They can also be 'mixed' types. So, it is extremely important to find an accurate diagnoses so the proper treatment can be given. A Craniotomy was scheduled for Wednesday afternoon.




Tuesday was another good 'waiting' day. Matt was cheerful and comfortable. He had a few visits from friends, and we had a little birthday party for Nate and Drew (their 4th birthday is the same day as the surgery!) out on the patio at the hospital. It was a good, but difficult day. I didn't realize how hard the birthday party would be. Luckily, Nate and Drew were happy with their party and thrilled with their little gifts and Transformer cupcakes from Wal-mart. My mind just kept going over how quickly life can change. In literally the BLINK of an eye, my entire life and focus have changed. I am also shocked by the frailty of this precious life. I know that I will not take my sweet (but LOUD) little boys for granted anymore!


I am going to try to keep this blog updated at least once a day for those who are worried about Matthew. We appreciate the concern, love, and especially prayers given on behalf of our family and Matthew. We feel the support of all of you - even those far away.