Monday, December 13, 2010

I hope I'm not jinxing us......

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I thought Audrey's cute little voice in this video was a good way to announce that they said Matt could go home for Christmas!  Yay!  Initially, they said we would need to stay a month, and I think that if we were at this point and it was January, we would be staying for that long.  But it's not, and we should be able to go home next Tuesday, and return on January 2nd and again on January 31st.  Happy Happy Day!  Matt had his first dose of this new chemotherapy today.  They will monitor him closely this week and he will have an MRI a week from today to see how this drug is affecting new blood vessel formation/blood flow in his brain and around his tumor.  Then......

We'll be home for Christmas!

Sunday, December 12, 2010

St. Jude's Week 1

We've been here in Memphis for a week!  Wow!  It's been a super-busy week with tons of tests.  Here's a run down of all the tests and appointments Matt has had this week:


New Patient Assessment
Neuro-Oncology New Patient Visit
Assessment Triage/Labs/Port access
Visit to School Program
Knee X-Ray
Port X-Ray to check placement
Neuro-Oncology On Therapy Visit
MRI Brain (unsedated attempt 1)
Nutrition Consult visit/Eating safely
Echocardiagram
EKG
Visit to Family Resource Center
Social Work Consult/Visit
Child Life Visit
Patient Services Orientation
Line Nurse Visit/training
Anesthesia Consult
XR Central Line Patency check X-Ray
Line Nurse Visit
MRI of Brain (sedated this time, attempt 2)
MRI of Spine (also sedated - done along with Brain MRI)
NM (Nuclear Medicine) PET Brain Scan Injection (Sounds scarier than it is, this is just where they inject the dye through Matt's line)
CT PET Brain Scan
Visit with Chaplain
Visit with Research Nurse to sign on to minor protocals (3 of these at various times)
Pharmacy Introduction Visit
Neuro-Oncology On Therapy Visit
Sign onto PBTC20 Protocal studing the drug AZD2171 (A VEGF receptor that will hopefully stop the blood flow to the tumor).

Phew!  And THAT, my friends, is what the first week at St. Jude Children's Research Hospital looks like.  :)  Add to that several large Christmas carnivals/parties that are thrown by large corporate sponsors, and you can get a sense of how busy and tiring our week has been.  I will try to update about more specifics.  I have been journaling everything, but it just hasn't made it's way to the blog, yet. 

I will say that St. Judes is the most amazing organization I have ever had the privilege of being a part of.  They take ideal pediatric cancer care and wrap it up in an extremely kid friendly, comforting package.  One mom I was talking to was there for her son's yearly check up.  He had Retinoblastoma and is doing quite well now.  Anyhow, as she was checking him out of school the secretary said, "good luck on your visit to the hospital."  The boy looked curiously at her and said, "I'm not going to the hospital, I'm going to St. Jude's!"  They take a very difficult situation and make it as organized and compassionate as possible.  They take care of all incidentals, so that when you are here, you truly just have to focus on your child.  They arrange all travel.  They have patient housing.  Families are welcome - even encouraged.  They pay for food.  It's the first place I've ever been where every single thing is thought through and is made as simple and convenient as possible.  It is awe inspiring!  The children here are the very sickest children there are, that much is certain.  I want to kiss all their shiny heads!  But, it's also a place of hope and of laughter.  The children are interacting with one another.  The parents are supporting and helping one another.  I've been amazed to hear other parent's stories.  Every single story is as impossible and unbelievable as my own.  Every single day, casual 'how are you' conversations turn intimate, as we share our deepest hopes, dreams, and fears with perfect strangers.  It is uplifting to be here.  I am so glad we made this decision.  I pray the treatment is effective for my Matthew!

Saturday, December 04, 2010

Yay! Yay! Yay! A plan, A plan, A plan!!!!!

Sorry I have been slow to update our blog.  We have been through a whirlwind of information overload, planning, and WAITING. 

The news after Matt's spinal MRI was not good.  The tumor in the spine is back.  It is creeping in at the top of the spine and through an area of the brain called the 'Circle of Willis' - basically a huge collection of arteries and veins.  There is also tumor at the base of the spine.  These are called 'drop-mets' and are little bits of tumor that have broken off, gone through the CFS (Cerebral Spinal Fluid) and landed at the base of the spine.  None of this is good news, but I'm trying to remain positive and remind myself that we had all these things when he was initially diagnosed, as well.

Part of the wait was due to a radical shift in our 'plan'.  We decided that since Primary Children's Hospital does not have a Neuro-Oncologist, that we needed to take Matthew somewhere a little bit more specialized.  We discussed several options and ultimately felt the best about St. Jude children's research hospital.  It is consistently ranked #1 in pediatric cancer care of all types and they treat a lot of children with brain tumors.  Once we made that decision, and St. Jude agreed to take Matthew, it was like a burden lifted from me.  We all feel very very good about our decision to have him treated there.  However, we had to begin the waiting game.  First, all of his records had to be sent to St. Jude.  Then, his pathology slides had to be sent to St. Jude, then we had Thanksgiving....... Aaaaaargh!  How can there be a holiday in the middle of our CRISIS?!?  LOL!  Then it was the weekend.  Then St. Jude had to send for a bit more information from pathology.  The wait has been agonizing, but today we finally got the go-ahead and the plan.  Matthew and Audrey and I leave for Memphis bright and early Monday morning.  We will be staying for a month.  (Don't talk to me about the whole Christmas thing.  I'm in denial about it.  We'll take it day by day.)  At St. Jude, the patients live 'on campus' but are not 'in-patient'.  Matt will be closely monitored, to evaluate how well he is tolerating this medication (AZD-217).  The pathologist at St. Jude agreed with the pathology of Pilomyxoid Astrocytoma and thought it had some Oligodendroglioma features.

So, today we'll get some laundry done, pack up our things, and get ready to go (oh, and go to Salt Lake to pick up Will's skis - I think Warren, Will, Nate, and Drew will keep sane by skiing.  A lot.)  Thankfully, we have a tremendously wonderful and supportive ward and neighborhood.  Everyone has offered to help, and I really do think they will do just about anything if it means helping Matt.  I'll be trying to arrange a preschool situation for Jake and then he'll probably have a play date with a buddy in the afternoons.  Carolyn and my mom will also take him some of the time.  The big boys are easy, since they are in school all day and Warren works from home.  Being able to bring Audrey is a huge relief.  I was really obsessing about what to do with her.  She is sort of a mama's girl and is only 18 months old.  When I learned that I could bring her, I felt that everything would be fine.  I am so thankful Warren works from home and that he is such a confident and competent caretaker to our children.

Matt is still doing well.  Neurologically, everyone who checks him out, is amazed.  He has very few symptoms at all from his cancer.  He had a port placed last week and that has made him a little bit sore and a little bit tired, but by the middle of this week he was wanting to go to school and was back to his normal self.  He is just upset about having to miss so much school.  :)  That's my Matt!!!  His school wanted to know what they could do for him and I thought that maybe some sort of project to benefit St. Jude hospital would be a good idea.  Then, Matt could be involved and 'give back' in some way, as well.  His teachers are wonderful and have taken the initiative to contact St. Jude and see what they need.  They have undertaken a huge project of making fleece blankets, pillowcases, and hats for the patients.  Then, Matt will be distributing them.  I think it's wonderful!

I'll try to update when we get there, and keep everyone posted about how he is doing with treatment.

Thanks for your support and love, everyone!

P.S. We had some photos taken a few weeks ago with Cecily.  She is AMAZING!  In approximately 5 minutes, in the pouring rain, she got these photos of our family.








Wednesday, November 17, 2010

It's a good day!

Yesterday we went to PCMC to meet with Matt's neurosurgeon.  I had spoken with their office on Monday and learned that Matt had been put on the surgery schedule and that they were beginning preliminary preparations for another craniotomy scheduled for TODAY.  We were very anxious about the surgery - not like a prompting to not do the surgery, but feeling very very nervous about it.  With brain surgery, there is so much that can go wrong.  We have met children with many different surgery side effects, everything from foot drop or facial droop, to children who have had a stroke on the table and are now paralyzed on half of their body.  Surgery can affect cognitive function and hormone function.  That brain of ours controls everything!  Matt has escaped most major side effects.  He has some cognitive/memory issues (that could be attributed to the tumor OR the surgery, who knows??) and, of course, he has no hormone function.  Overall, though, we feel like we've won the 'surgery lottery' three times, and every time we go in, the odds of winning go down.

After much discussion between doctors and ourselves, we decided to forgo surgery for a bit longer.  Matt is doing SO WELL, and we don't want to mess with that.  He has no symptoms from his tumor - no headaches, no seizures, no vision problems, no balance problems.  Dr.Walker is very leery of another surgery causing problems.  Also, the tumor is *still* in a bad place and the direction it is growing puts it in an even worse area.  Surgery would not remove the entire tumor, that much is sure.  We decided instead to opt for chemotherapy, hope that the chemotherapy shrinks the tumor, and shrinks it into an area of the brain that is more accessible to the neurosurgeon.  We will continue to evaluate Matt's situation and hopefully at some point do another surgery that removes a greater percentage of the tumor than we could get to today.

We also drove clear to Riverton so Matt could have an MRI of his spine to see if it is still clear.  I need to call and get the result of that today.  I'm nervous......  After his MRI, we went to In&Out burger.  We had never been there before - what a disappointment!  LOL!  I even looked up the 'secret menu' and we ordered off of it, but those burgers are ICK!  We'll stick with 5 Guys Burgers and Fries, thank you very much!  :)

So, now we wait until Monday when we go back into oncology to determine, precisely, what chemotherapy protocol we will do. 

Our mood today is very celebratory.  I feel very light and happy about the decision.  I guess I'm not sure the thought of chemotherapy should make anyone 'light and happy', but with the weight of surgery off of us, it feels wonderful!

Friday, November 12, 2010

A day of pondering and some clarification

After we get bad news about Matt, I always feel like I'm reeling.  It's like, all these pieces of information are floating around my brain, crashing into each other, and bombarding me with new ideas.  The first day is THE WORST and then, gradually, I start to process the information.  All the little pieces begin falling into place like a puzzle and eventually I get to 'our new normal'.  Here are some clarifications about what we are doing and what we are thinking. :)

FACT: Matt 'seems' perfectly fine.  He looks and acts healthy and feels great!

FACT: The tumor is still much smaller than it was at initial diagnoses 3 years ago.

FACT: We have a lot of treatment options (including chemotherapy and other drugs, more radiation, surgery) and combinations we haven't tried yet.  We are nowhere NEAR the point of giving up or sending him home because 'there's nothing else we can do'.

FACT: We have some amazing doctors at PCMC, and they are in contact with other amazing doctors around the country about Matt's case.  His medical situation is very complex, but we've got great people on it.  Doctors from UCSF, John's Hopkins, UCSD (Hi Bob!), and, now, Matt's oncologist is heading to MD Anderson in Texas (which, I'm trying to not be grumpy about....).  We truly have the best of the best giving advice and recommendations about treatment for our boy.  

FACT: PMA's are known to disseminate (little bits of tumor).  Matt had a lot of dissemination when he was diagnosed and it was even in his spine.  Hopefully, the chemo will be effective in getting rid of those pesky little bits of tumor.

FACT: We have an amazing Neurosurgeon who we trust almost to a fault.....

FACT: We have great doctors all the way around.

FACT: Our disappointment yesterday was not so much that the tumor was DRAMATICALLY different.  When you're looking at something about 3 cm., dramatic changes are all relative.  :)  We went into the MRI and appointment with a scale in our minds of how things could go.  On one end was the 'miracle' side where the tumor was completely gone or completely dead.  On the other end was the news that the tumor had morphed into something much more aggressive and was taking over his brain.  :)   Honestly, we knew we would be somewhere in the middle, but we hoped to be a bit further towards the positive side.  When we were, instead, a bit closer to the negative side, that was a big blow. 

FACT: Despite being disappointed that radiation didn't work, Matt is once again feeling optimistic.  He told me yesterday that he knows he's going through this trial because, "Heavenly Father knows I can handle it and I'm learning things He wants me to learn".

FACT: Life is still good.  Even when it is difficult, it is a blessing and a gift.  Our trials don't define us, unless we allow them to.  We refuse to focus so much on the difficult parts that we miss the amazing parts.  Ya gotta enjoy the roller coaster, baby!

We will try to be better about keeping everyone updated.  We are anxiously awaiting 'the plan'.  As Matt says, "we've done this before......"

Wednesday, November 10, 2010

I think this is exactly why they told us not to get our hopes up......

Today, Matt had his first MRI since radiation.  I went in full of hope and optimism.  Matt has seemed to be doing well.  He has been enjoying school, feeling great, and aside from a bit of tiredness (that could be attributed to me just looking for something to report), has been as good as he's been in 4 years.  In fact, he even seemed to be losing weight.  He put on a pair of pants from 2 years ago last Sunday and they fit!  After doing something so high-tech and exciting to treat his cancer, I was just sure the IMRT radiation would be a success.

Anyhow, the results of the MRI weren't just a little disappointing, they feel devastating. 

The conclusion reads:
"Growing tumor volume in the original tumor bed and extensive supra and infratentorial ventricular and subarachnoid space enhancement with ventricular and subarachnoid space tumor spread."

What this means, is that the large main tumor has grown and is filling all available space surrounding it.  It is enhancing under contrast, meaning the cells of the tumor are active and growing.  Also, and this is the really bad part, it has disseminated and spread.  Those itty bitty bits of disseminated tumor are the most difficult to treat.  It would be like trying to dig a grain of sand out of a bowl of soft frosting, without disturbing the frosting.

Matt started crying as his oncologist was explaining the results of the MRI.  That broke my  heart!  He feels so frustrated that he can feel so good and assume everything is going so well, only to find out that it is not going well at all.  We can all relate.......  It was a soggy car ride home.

So, the next step is most likely surgery.  We have an appointment with our Neurosurgeon on Tuesday.  I have a feeling that with his tumor behaving so aggressively, they will want to operate quickly.  After surgery Matt will be going on chemotherapy.  We were talking about probably metronomic (daily) Temodar along with Carboplatin and Vinblastine or Vincristine.  Matt was on Temodar before and he tolerated it very well.  I don't know if there will be different side effects with taking it daily.  He was also on Carboplatin for a short time and it made him very sick.  Vincristine is also one we're familiar with.  He was on it for 2 rounds and his sodium went so low he had to be admitted to the hospital.  I'm sure that with his Panhypopituitarism, they will be very very careful in regards to chemo.  I am also hoping that since we are more familiar with Matt's medical issues, we will be better able to manage the chemo process.  I feel like I am in a better position to advocate for him now.  I just think back to last time he was on chemo and I learned a lot (IV anti-nausea, anyone???)  I feel better prepared to evaluate his endocrine issues and would recognize low sodium before it got to the low levels he had last time.

So, there it is.  Sorry I've been so bad about blogging lately.  Life has just been going so beautifully that I think I just wanted to enjoy it.  It has been a pretty wonderful six weeks.  Normalcy..... Bliss!

Friday, August 20, 2010

Week 1 COMPLETE!

Today marked day 5 of radiation for Matthew.  His protocol calls for 30 sessions of IMRT radiation.  This works out to 6 weeks of radiation, for 5 days each week.  On Monday, my mom watched our other 5 children, and Warren and I took Matthew for round 1.  We were nervous, and a little excited (after all, radiation is meant to KILL the tumor.  We are pretty giddy and optimistic at that thought).  That first day was a challenge.  Nothing strikes in your heart the reality that 'your child has cancer' more than watching them have their radiation mask get bolted down to the table.

After the mask is fitted, a frame is placed over the mask.  This frame sets 'markers', so they can be sure the radiation is reaching it's intended target.  Each day, Matt receives 2 quick X-rays to make certain nothing has shifted.  Then, he receives his therapy.  In Matt's case, there are 7 different beams of radiation.  Each beam delivers 3 minutes of radiation.  Therefore Matt spends approximately 21 minutes each day in the radiation machine.

Since we are not allowed to be in the room or even watch the monitor while he gets his radiation, we can only guess what exactly happens.  I do know that there is a large 'arm' above him on the machine that can rotate and also the 'bed' Matt is lying on can rotate slightly in 6 different directions.  I'm sure it's not quite as intense as a simulation ride at Disney World, but that's what it reminds me of when they explain it!

Matt was thrilled with the way his mask turned out - and so were we!  It has sort of a graffiti look to it with the words  'Cancer Sucks' written across it in red.  If you know our family, you know that we don't usually speak like that, or allow our children to speak like that.  BUT, given the circumstances, it seemed appropriate! :)


On Tuesday, we had all the boys with us.  We had Will go in with us so he could see the machine and get a sense of what Matt was doing each day. 

On Wednesday, we met up with a friend that Matt met at 'Camp Hobe'.  Truly, an amazing camp!  Anyhow, Matt and this boy were in the same cabin and hit it off.  They are the same age and he also has a brain tumor, slightly different pathology, but with most of the same symptoms that Matt has.  I cannot tell you how refreshing and therapeutic it is to spend time talking with another mom who totally and completely 'gets it'.  I don't have to explain ANYTHING to her.  We have the same daily challenges, the same long-term concerns, and similar personalities when it comes to advocating for our kids.  It was great!

The logistics of radiation are proving a bit tricky, but doable.  School started this week for my older boys.  Warren has those 3 here at home.  Since they are gone from about 8:30 to 4:00, it allows Warren to get a full work day in.  Starting next Monday, I've hired a girl who just graduated from college to come every day when the boys get out of school.  She will help them get a snack, do their homework, and practice piano.  Matt and I are staying in Layton with Warren's mother.  She has been gracious enough to welcome us and is proving extremely helpful in every way!   We've scheduled radiation for 2:00 in the afternoon with the hope that we can put Jake and Audrey down for naps and they can stay with Carolyn while Matt and I run to his appointment.  It's about 2 hours door to door, so it's perfect for a nap time for my littlest ones.  This week went off without a hitch.  Matt's school has also been very accommodating.  We went in and spoke to them last week.  They have a home-bound teacher who will be collecting all of Matt's work and acting as a go-between for the school and Matt.  Since he should feel fine through radiation, he should be able to do his homework.  He's a kid who thrives on school and schoolwork, so hopefully this will just be a blip in his school career.
Thanks for thinking of us and checking in on us!  We're just plugging along at this!  It feels a little bit like eating an elephant, but we're slowly taking bites and are 1/6 of the way done! :)

Friday, August 13, 2010

I have the MOST awesome family!!!

I just LOVE these videos!  Last weekend our family had a Jones Family Reunion.  This was our impromptu entertainment.  Well...... I'm not sure impromptu is the right word, since Uncle Glen (who isn't technically my uncle - he is my grandfather's cousin - I'm not sure what that makes him to me, but we all just call him Uncle Glen) had brought along his accordion, 2 fiddles, a harmonica, a keyboard with seat, a microphone and an amplifier.  :)
This is the way I grew up.  My earliest memories are singing in front of a crowd - my mom was always telling everyone I would love to perform......  We sang everywhere.  I think it created a very jolly atmosphere at every family gathering.  Just a note explaining why I try to encourage music with my children.  Uncle Glenn here is completely self taught.  At this family reunion he started out playing the keyboard, then switched it up to the accordion, then the fiddle, then the harmonica, back to the accordion, then back to the keyboard - all without a bit of music in front of him or a single music lesson in his history.  It is AMAZING!  Just watching this 90 year old heft his accordion is a sight to behold!  LOL!  My mom is no slacker, either (oh, yeah, for those of you that don't know us very well - that's my mommy on the keyboard.)  She has a gift for music.  She can play anything using music or by ear.  I grew up thinking that every piano accompanist could change keys on my whim.  It was a shock the first time someone else was playing for me to sing and I said, "that's too high, could you lower it a little?"  They looked at me like I had 3 heads.  :)  I'm hoping that some of this talent is genetic!
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I only wish I would have still been recording when my Uncle Glen had his wife come up and the two of them sang the two verses of 'Bicycle built for two'.  It was the CUTEST thing EVER!!!

Thursday, August 05, 2010

Our radiation adventure begins!

Yesterday we met with our Radiation oncologist.  I was very impressed with Dr. Shrieve and felt very very good about adding him to Matt's 'team'.  Initially, I had felt like I wanted to consult with Boston, as well, because Boston is one of only a few centers in the U.S. that offers Proton Beam radiation, and specializes in pediatric Proton care.  I called them last week and sort of started the process, but was really hoping that when we met with Huntsman cancer center we would feel good about using them.  It is infinitely more convenient to stay close to home - even though I would travel to the ends of the earth if it meant giving Matt better treatment.  Dr. Shrieve actually was in Boston for a large chunk of his career and he worked closely with the radiation oncologist that now heads the pediatric radiation program at Mass. General.  He also worked with and knows very well the radiation oncologist that we were supposed to meet with last time we traveled to San Francisco when we ended up spending all of our time in ICU instead of getting the 2nd opinions we had gone to receive (I did speak with her on the phone and she recommended the same type of radiation we are going to be receiving at Huntsman). :)  I don't think it's coincidence that the doctor we are using is someone who has worked closely with the two treatment centers we have received or wanted to receive 2nd opinions from.
We spoke in depth about different radiation options and about protons specifically.  Dr. Shrieve said that in Matt's particular case, he didn't feel like protons offered enough benefit to justify the expense and inconvenience of traveling to Boston to receive therapy there.  The part of Matt's brain that will receive the most damage from radiation is his hypothalamus...... which is already completely shot.  The side effects that Dr.Shrieve would expect are the ones that we have been dealing with for 3 years - mainly complete hormone replacement therapy (panhypopituitarism) and hypothalamic obesity.  He also said that while Protons are wonderful because there is no exit dose of radiation, there is often a higher entrance dose of radiation and his opinion is that because Matt's tumor is so deep, IMRT radiation would be a better choice.  I felt a great deal of peace and comfort while talking to Dr. Shrieve about Matt's history and radiation options.  I felt like this peace was a direct answer to my prayers about feeling confident that our choice of treatment would be what is best for Matthew.
Sooooo, today we started this big adventure.  It was an extremely long day.  Warren kept the boys here, and I dropped off Audrey at Carolyn's (Warren's mother) house.  Matt and I headed to Huntsman for his 'mask fitting' and positioning CT scan.  We had about an hour and a half before his next appointment so he and I went to the zoo and walked around for awhile.  It was so fun to go with just him.  It's way faster to walk the zoo with just one older boy.  We saw practically everything in just an hour!  After the zoo we went over to Primary Children's for the longest MRI, EVER!!  They did a full MRI of his spine without contrast then a full MRI of his spine with contrast, then a special, more detailed MRI of his brain.  For every 'slice' they usually take of his brain, they took 4 'slices', so it was about 4 times more detailed than his usual brain MRI.
Here are some pictures from the mask making.  This mask will be used during radiation.  They actually fasten the mask to the table on the radiation machine making it virtually impossible to move out of position.  They really need those beams to go precisely to the tumor!
Positioning his head in the cradle
Adding the 'mesh' under his head
Using lasers and a 'sharpie' marker to make a perfectly straight line down his face.
Stretching the 'mesh' over his face.  This stuff is pretty neat.  It is a plastic sheet with holes that is heated in a hot water bath.  When is gets hot and wet it gets pliable and feels almost like clear silicone.  They can then stretch the material around the face and it conforms perfectly.  As it cools and dries, it tightens up a bit and hardens.
Waiting for the mask to dry and harden.
Another view.
Going into the positioning CT scan.
The finished product.  Sometimes they decorate the masks.  I don't know if Matt requested that his get painted.  I guess we will see next Monday when he begins therapy!

Friday, July 30, 2010

I suppose I have to update.......

I have been a slacker about updating my blog.  My friend Liz said she hoped it was because our life was humming along so swimmingly that we had nothing to update.  That actually wasn't too far from the truth!  We had an awesome 18 month run of things going well - better than we could have imagined 3 years ago.  Matt had SIX MRI's over 18 months that were stable and beautiful and perfect.

Tuesday that all changed. :(  The MRI itself was horrible.  They had a difficult time putting in the IV and had to attempt in both arms before finally getting it in.  Then Matt threw up in the MRI machine (again).  He is quite sensitive to the contrast and it tends to make him feel nauseous.  Then, the worst part of all came when we went in to see Dr.Walker and hear the results.  The tumor has grown.  A lot.  In just 3 months, one view showed the tumor had doubled in size.

Our visit to PCMC turned into a whirlwind while we were squeezed into an appointment with oncology.  One highlight of the experience was that we met the brand new Neuro-oncologist.  He recently came to PCMC from California and I liked him very much.  He was extremely thorough and had a fantastic accent (always a bonus.  LOL!)  Seriously, he made us feel very comfortable.  He was very knowledgeable and interested in Matt's case.  I am anxious to hear his recommendations about the treatment plan for Matt.  It looks like radiation is the next step, for sure, followed by chemotherapy.  We will see how intense the chemo will be.

So, right now we are busily, patiently, waiting.  We have an appointment next Wednesday with the head of the brain tumor program at Huntsman cancer institute who also chairs the department of radiation oncology.  I have also felt that I needed to get Matt's stuff sent to a pediatric brain tumor consortium hospital that does proton beam radiation.  Protons are sort of the newest thing in radiation.  I don't know if Matt will be a candidate, or even if protons are worth it if he is eligible.  But, I left a message today for the doctors in Boston.  For my own peace of mind, I need to be sure that we are doing the best thing for Matt in terms of radiation.  Your body can only tolerate so much radiation, so radiation is a one time deal.  I feel a lot of pressure to do everything JUST RIGHT.  Should we radiate the tumor bed only or add the ventricles?  Do we radiate the entire brain and spine, just to be safe?  Do we use proton beam radiation?  Is IMRT okay?  What if we just do lateral?  What are the pros and cons of each type?  Is it appropriate to do a combination of all of the above for different parts of his brain?  Sheesh.  I should've become a doctor! :)

So, unfortunately, there is the update.  It's not the update I would like to be writing.  However, I have to keep reminding myself that this is exactly what we expected the treatment plan to be when Matt was diagnosed 3 years ago (almost to the day!)  We have been able to stave off radiation and avoid radiating a 9 year old brain.  It is a blessing that his brain had 3 more years to develop.  Now we just need to continue treatment and pick up where we left off.  Am I looking forward to spending 6 weeks away from home?  No.  Am I looking forward to another year+ of chemotherapy?  No.  Am I thankful that we live in a time and a place where these options are available?  Absolutely!  Life is still good even when it's not perfect and I am so glad to have had these wonderful, treatment free childhood years for my Matt!

Thursday, July 22, 2010

Thank you, GH, for giving me my son back!

Finally, finally, FINALLY, Matt was approved to start Growth Hormone.  His last bloodwork came back with his GH at an 88.  Boys Matt's age should have GH somewhere in the 300-400 range.  While Matt is a big kid, he hasn't grown very much at all in two years - and this during a time when boys should be growing several inches per year!  Our biggest reasons for wanting to get Matt on GH were not so much height, but rather:

More enegry
Better muscle tone
General sense of well-being
Improved blood sugar
Better management of cholesterol
Weight management (hopefully!)

Matt's energy level has been very low.  He is always a good sport to exercise or come along with us whenever we are doing something active, but he would frequently fall asleep or become extremely fatigued after only a short amount of activity.  Of course, part of this is related to his weight, but his symptoms are more severe than another overweight child.  He also has such low muscle tone that it is difficult for him to move his body in normal ways.  For instance, he can barely pull himself up into the Jeep.  He cannot pull himself up into the tube when we are out boating and he can't pull himself up out of a swimming pool - all very normal things 11 year old boys should be able to do.  This feeling of lethargy and general ickyness has been a real challenge!  Again, it's not that Matt is unwilling to do any of these things, it's that when he does do these things, you can tell it's truly a miserable and uncomfortable experience for him.  Also, at his last Pediatrician visit, they checked his cholesterol level.  It was so high it was undetectable on their machine.  It wasn't until we actually received the Growth hormone and I was looking over all of the information that I learned GH plays a critical role in managing cholesterol and blood sugar!  Yay!  I am anxious to see how GH helps with each of these issues but it already seems to be making a difference.  Matt is wanting to go outside and play without us prodding.  He is trying to exercise and he and I are actually 'training' for a 5K!  We are using the 'couch to 5K' program and amazingly, he seems to be doing fine with it!  He hasn't needed a nap on days we run/walk.

Today I took my kids, along with my 2 sisters in law and their kids to a new 'splash pad' park in the next town over.  Matthew was in a good mood and was running through the sprinklers and having a wonderful time.  I actually got all teary watching him.  He was just enjoying the sprinklers with a big smile, but he was doing something active and something fun and he was enjoying the experience. 

Thank you Growth Hormone - I really feel like you are helping me to get my little boy back!

Tuesday, April 27, 2010

Woo-Hoo!

Just a quick note to mention that today we learned Matt's tumor is STILL STABLE!  That's pretty fabulous news!  We scheduled another MRI in 3 months, and then will discuss waiting 6 months before doing the one after that.  I just LOVE it!  Dr.Walker is always amazed at Matt's progress and health.  It thrills him to see Matthew excelling in school and having a functional memory.  I also think that Matt is just a fun kid to have as a patient.  He is positive and upbeat, doesn't complain, and expresses gratitude to his doctors for all they have done.  He cracks jokes with the doctors and is very laid back about any procedures that need to be done.  Today, while he was getting an IV he went on and on about how it's no big deal if they need to poke him again because he gets lots of blood draws and he knows they are doing the best that they can, etc...  He really wins over the nurses and lab techs! :)

Just another quick note about Matt.  He was named the 'Student of the Month' for 6th grade at his middle school for April.  It is really an honor!  There are 1,400 kids at Matt's school.  They choose 3 from each grade each month during the school year.  That means only about 240 children are chosen as 'student of the month' during their time at the school.  Matt has been nominated several times through the year, and this time he won!  I guess that every teacher nominates one child per month and then once the nominations are in, the list of nominees are sent around to all of the teachers and the teachers vote to determine which children win.  Matt was invited to a special ceremony and lunch with the school administrators and counselors.  Warren and I were invited, and attended, as well.  The principal spoke about the program and awarded each of the children a special certificate along with a gift card for $25 to Hastings (a local book/music/video game store).  A local restaurant catered the lunch, which was held in the media center, and then that restaurant also gave each of the kids a gift certificate.  It was a great experience and I am so proud of my boy!  He works extremely hard at all he does and it shows!

Sunday, April 25, 2010

MRI day Tuesday!

So, this Tuesday is an MRI day for Matt.  We are still on an every 3 month MRI schedule and I suspect that we'll stay that way for a while longer.  Matt has the go-ahead to begin growth hormone from both our local Endo. and Dr.Lustig.  Since there is some concern that GH might make the tumor grow, I bet they'll want to keep monitoring him closely. To be clear, there is no PROOF that indicates brain tumors feed on GH, but, of course, there are children who have brain tumors, who go on GH and whose tumors subsequently grow.  Out of an abundance of caution, we have waited almost 18 months with a stable tumor before beginning GH.  There are doctors who refuse to prescribe GH to children with brain tumors.  We have very very carefully weighed this decision and feel like the benefits outway the risks.  I always come back to something I heard when Matt was first diagnosed.  

There is no point in saving a child's life if you don't allow them to live it.

I try to remember that mantra whenever I start panicking over Matt's health concerns, or begin to weigh what's best for Matt and am giving too much weight to his brain tumor.  Of course, it is always a factor, but I don't want it to be the only factor.  After 3 years of dealing with this, I think I've started to think of it as a part of him.  Just one more trait of my boy that makes him who he is.  It has positive and negative impacts, just like any other aspect of any of my children.  We try to take it in stride, not solely focusing on it on a day to day basis, but still adding in the things that need to be done on a regular basis - things like blood draws, doctor visits with many specialists, and quarterly MRI's.  It's part of who we are. 

The 48 hours before an MRI are aggravating and terrifying.  On the one hand, we are hopeful and optimistic, as the past 6 MRI's have been stable and have looked wonderful.  On the other hand, we are always well aware that the beast in Matt's brain may decide to grow. 

So, here yet again, I shamelessly ask for your prayers and thoughts over the next 2 days.  They've worked wonderfully so far - so why mess with a good thing?? :)
Love,
Alli

Wednesday, April 14, 2010

Me, me, ME, it was all about MEEEEE.........

Warren & I just returned from a trip to Chicago.  A trip in which 6 things were missing.  Six beautiful, boisterous, wonderful, demanding things were missing from this grand adventure.  After several months of planning and debating and on again off again drama (they kept changing the date of Warren's meetings!)  Warren and I escaped, sans children for six glorious days.  Don't get me wrong, I adore my children.  I seldom leave them.  If you take out Matthew's hospital stays, I never leave them.  We have gone on little mini vacations 3 or 4 times by ourselves and it is just fantastic.  I know that sounds bad - like I am desperate to escape my life.  Nothing could be further from the truth.  When I escape for a few days, I come back recharged, am more patient with the little people in my life, and feel more blessed than I did before I left.  Also, I think about them almost constantly while I am away.  It's so funny!  On Saturday we did something we had never done, despite many visits to Chicago and living there for 2 years.  We went and had lunch on the 95th floor of the Hancock building.  The views were amazing!  I know it's a touristy thing to do, but it was fun.  All I could think about, though, was that next time we are in Chicago as a family, I am bringing the boys (and girl, of course!) to lunch there.  They would go crazy with delight! :)

I can't tell you how rejuvenating it is to spend 6 days doing nothing - or whatever you like.  There was not a thought about whether we should eat at a certain restaurant because we were uncertain if they had highchairs.  There was no haggling about which movies to see.  There was no early morning wake up call (except the ones we requested from the front desk).  There WAS an obscenely expensive dinner at Charlie Trotters (not doing that again......), two movies in a ROW (how long has it been since you saw two movies back to back?), a midnight waffle house run at an all-night diner, 4 novels, and lots of shopping (my favorite thing, not so much for Warren, but he was a great sport).  Today was our first day back and I feel so happy and lucky and well-rested.  The little things that went wrong (lost luggage, almost missed our flight), are much easier to deal with because I had a break.  YAY! :)

Monday, March 29, 2010

Options, options, options..... But what's the right thing to do???

Well, Matt and I had a whirlwind trip to SF a few weeks ago.  It was really quite fun to go with just him.  We were gone for 36 hours exactly.  We arrived Tuesday afternoon and spent a few hours wandering around SF.  We also went out to dinner, to a CREME PUFF shop that was next door to our hotel and then I took him to see Avatar in 3D - there was a theater directly across from our hotel.  The next morning we woke up, had breakfast, wandered around for another hour or two and then headed over to the medical center for Matt's appointments.  After his appointments we caught a cab and headed directly to the airport and home!

(Here's Matt in the cab on the way to his appointments. We were laughing because his hair was blowing and standing straight up!)

Dr.Lustig was happy to see us and teased Matt since last time we had an appointment with him, we had to meet him at the hospital due to them finding more blood clots and Matt landing himself in ICU.  That was an adventure.  This time went much more smoothly.  We went fully intending to schedule a time to do the vagotomy.  Dr.Lustig is still on board with Matt having the vagotomy.  However, as I've mentioned before, it is very experimental - 4 children have had it and have follow up stats for a year.  I guess Matt is part of an elite group! :)  After we met with Dr.Lustig, we went to go see Dr.Farmer.  She is the surgeon who would actually perform the vagotomy.  She still does not want Matt to have the vagotomy.  She thinks he is doing too well to perform such an experimental procedure.  In other words, he doesn't have any obesity related diseases...... yet.  She does agree that the issue of the hypothalamic obesity needs to be addressed and she suggested Lap Band surgery.  It causes a very gradual weight loss and is reversible.  I like both of those things.  However, it is unclear whether lap band will work on kids with HO since their weight gain or loss does not seem to respond to diet and exercise in any normal way.  So, now I'm researching Lap Band.  I just contacted a doctor in DC who authored a study on Lap Band surgery in adolescents.  I wanted to know if any of the participants in the study suffered from brain tumors/injury to the hypothalamus or pituitary.  I heard back from him right away - he seems truly amazing, as well!  None of the subjects in the study had HO.  He is going to call me on April 5th to discuss whether he thinks Lap Band might be a good option for Matt.  By the way, isn't the internet amazing??  I LOVE having access to these doctors that specialize in Matt's complicated issues.  Overall, they are amazingly responsive and kind!

So, now I'm back to the same point I've been for the past year.  What to do???
Do we do the vagotomy? (experimental, permanent)
Do we do a lap band surgery? (experimental in kids with HO, reversible)
Do we just put him on Growth hormone and think about it for a few more months? (may not address weight issue, will likely make him FEEL much better)
Do we do nothing and just let him gain 100 more pounds this year - all the while watching his younger brothers out eat him at every meal....? (not really an option.......)


My decision wavers almost every single day.  Today I'm feeling like Growth hormone is the way to go.  We can see if that helps his weight loss and muscle building and energy.  If we start the GH, we need to wait 6 months before we do anything else to treat the obesity.  Is pushing off treatment a good thing because it would buy us some time?  Or is it a bad thing because we are delaying treatment that needs to be started sooner? 

Warren and I both feel so conflicted!

Monday, March 08, 2010

The good, the bad, and the ugly. :)

Last week Matt had a visit to PCMC to check up on his blood clots.

The GOOD news is that he was cleared to stop the Lovenox shots. He's given himself two injections daily for 6 months - that's approximately 360 injections! He's been a trooper and we figure it's good preparation for the growth hormone that will be started sooner or later and is also given via injection. :)

The BAD news is that if he ever clots again, he will need to remain on Lovenox or another blood thinner (like Cumiden) for the rest of his life. This is because they do not know what caused the clots. Matt has many risk factors. Besides his weight, he is on two medications that increase the risks of clotting - DDAVP and his steroids. Being dehydrated can cause clotting. Simply having a malignancy somewhere in your body increases the chances of a blood clot. Matt's hematologist believes Matt's clots were not due to one single issue, but they all contributed. We shall see! For now, though, he is injection free and we aren't really missing those shots one bit!

The UGLY. Well, I don't really have an ugly! Okay, so this is sort of ugly..... A few weeks ago I called San Francisco to make an appointment with Dr.Lustig - a pre-surgery appointment. His next available opening wasn't until August. His office lady said she was going to see about scheduling Matt for endocrine with Dr.Lustig along with surgery to discuss things - and hopefully get him in earlier than 6 months in the future! Last week I realized I hadn't heard anything back from them, so I thought I would call and check up on things. Apparently, they went ahead and made us an appointment....... for March 10th! Don't you think we would have liked to know this? We ARE flying in from out of state for the appointment! Thankfully, we were able to get a quick flight & hotel and Matt and I are going to SF this week. Warren was already scheduled to be in Chicago for work, so he can't make it to SF. I'm anxious and excited to speak more in-depth about the surgery and schedule a time for it to happen. Now that we've decided to go ahead and do the surgery, I'm anxious to get this show on the road! Matt seems to be doing very very well at the moment and I think it's a good time to do this minor procedure.

Randomness alert, Randomness alert!  Absolutely not relating to the above information at all, this is our new, wildly entertaining time-waster. On our iPhones, we have this app that lego-izes any photo. You can take a new photo, or use a photo already on your phone. Awesome, huh?!? It also makes a very satisfying clicking sound when you push the button to turn your photo into a lego collage. The very best part is that the app is free. Yea for free entertainment!




Monday, March 01, 2010

All about ME!!!

My name is Audrey.
I am 9 months old (I know, my mom can't believe it, either!)


I have two teeth.


I love it when my mommy puts my hair in pigtails - everyone says it's sooooooo cute!


Daddy is always saying mommy is, "out of control" when I am wearing fancy things like this coat. I don't know what he means.........


I am almost mobile. I just can't quite figure out how to make myself go forward!


I love feeding myself - pureed foods are SO yesterday!


My Lacey blankie makes me happy (Lacey is a very nice friend of mommy & daddy and she made my favorite blankie). I also love my Violet. She sings me to sleep every night.


One day mommy tried curling my hair with sponge rollers. Let's just say it wasn't a good look for me.



I pretty much have everyone wrapped around my pudgy little finger - especially Grandpa Ray!

Saturday, February 20, 2010

I LOVE Bountiful Baskets!

If you haven't heard of this co-op, you have to look them up! (www.bountifulbaskets.org) You make a 'contribution' to the co-op with your credit card, usually on Tuesday or Wednesday, and the next Saturday get to pick up a laundry basket full of fresh fruits and vegetables. The basic basket is only $15 and I've found the quality to be excellent. Today I went and picked up my basket. Here is what was part of one basket.


It included bananas, celery, sweet potatoes, butternut squash, brown pears, baby carrots, spinach, oranges, apples, broccoli, pummellos and tomatoes - and probably some stuff I'm accidentally leaving out. :)

I also added a 5 loaf pack of 9-grain bread, a 3 loaf pack of cinnamon raisin bread, and a 4 loaf pack of rye bread. All excellent! The bread added $21 to my total cost for this contribution. I spent $36 on what you see. AND, we got pummellos - I've never had a pumello. We're trying new fruits and veggies and eating healthier since starting Bountiful Baskets. YEA!

P.S. Never mind my 2 year old in the background of the photo holding toilet paper. LOL! He was using the packages as 'cars'!

Tuesday, February 16, 2010

Pebble Creek - Feb. 13, 2010




WARNING: You will never get these ELEVEN minutes of your life back. Also, you might not be as entertained by it if you are not a Goodworth, Bray, Haderlie, or Richards...........

video

Wednesday, February 03, 2010

Messy Munchkins (and me)

When my boys take my otherwise clean kitchen and make it look like this:


























And this: (For the record, this is one evenings worth of homework, toddler play, scripture study, paper airplane making, cookie eating, and puzzle doing. I'm not sure the photos do justice to the total chaos and disarray and STUFF everywhere...... And I didn't even take a picture of what's UNDER the table)!


And I'm walking around, picking things up and grumbling to myself about those kids being better about picking up after themselves, and there are going to be consequences....... I am destined to bend over and pick up something like this:


























I think Nate made my hands extra huge so that I could use them like scoops to pick up all their junk. But, somehow, I don't mind so much tonight.