Finished with round 1

I took Matthew to the doctor this morning to have his pump removed.  He is finished with round 1 of chemotherapy.  He is having trouble with indigestion, and some mild nausea, but nothing too bad.  He is 3 different medications that counteract the side effects.  So, they must be helping.

Dad has arrived back in New Jersey safely.  The kids are driving Matthew crazy with all of their questions, but all in all I don't think they are bugging him as badly as he wants us to think they are.  I say this because instead of napping in his room, he chose to lay down in the room where Claire was watching a movie.

The new air conditioner will be installed in two weeks.  Until then, we will just keep sweating it out--and sit very close to the fan.


Thanks for all the prayers!

Round 1....Matthew!

Matthew started his first round of chemo today.  He got his first dose in the doctor's office, and managed to sleep through most of it. He is at home resting while receiving part two of the first dose.  It is being delivered over the next two days via a portable pump.  So far, so good.  No noticeable side effects.  He still fatigues easily, but he also still in the recovery period from his surgery.

I am headed down (with the kids in tow) to help out for the next few days.  Dad is leaving tomorrow to fly back to New Jersey and help Mom travel (this involves a trailer, an invalid Grandma, and 10-yr-old cousin Isaac) down for her stay.

Keep up the prayers....if you have it in you, we would appreciate it if you would throw some in for safe travels!

Art Therapy

Chemo starts tomorrow, so for today, please pray that Matthew's body handles it as well as possible.  He is more nervous about the chemo than anything else.  I will update to let everybody know how it goes.  

For today,  I will share this story and pictures that came via my Dad.  For those of you that don't know, Matthew took painting lessons when he was younger, was a pretty good at acrylics, and enjoyed it. 

 

Before

Matthew has an extremely weather-faded plaster gnome that he uses as a door stop. I came across a pile of bottles of his acrylic paints in the garage today. Surprisingly they were still good (they are at least ten years old). So I had him repaint the gnome. Thus, his “art therapy”. Actually, he really did enjoy it despite his grousing. I know because he wanted me to take before and after pictures for the blog.

All Done

Quick Update

Matthew's port insertion was uneventful. Matthew was home sleeping when I spoke with Dad.  The port will be used for the chemotherapy, but also can be used to easily draw blood or give other medications.  Chemotherapy can damage skin and muscle tissues, so this should help prevent this from happening.  It will also prevent Matthew from having to have quite as many needle sticks.  The veins can harden after frequent sticks, which would  then make it more difficult to access a vein.

Anyway, all is well.  Will update when I have more.

More Details

I have several tidbits to share today.

Matthew's appointments have been changed.  He will get his port put in tomorrow, and chemo will officially start on Monday, June 27th.  My understanding is he will be doing a 2 drug combo.  One that he will receive in the office, and a 2nd that he will receive via pump over a 3 day period. He will repeat this cycle once every two weeks. Day one of the three-day cycle is supposed to be the worst.  However, they say that these drugs are not harsh, and that they don't even expect him to lose his hair.  Everybody's body can react differently.

As most of you know, colon cancer is very rare in somebody Matthew's age.  The doctor said that there is a 70% chance that Matthew's cancer has a genetic factor.  Therefore, the rest of us are encouraged to be screened.  I had my first colonoscopy on Tuesday, and while it was not pleasant, it is done. (Honestly, the procedure itself wasn't bad since I slept through the whole thing...the prep is what is miserable). I am very happy to share that there were no concerns, and that I don't have to go back for another one for 5 years. 

Thanks to all that have given recommendations for AC companies.  Dad has gotten a couple more quotes and is making progress on those fronts. 

For those that do not know, my parents have decided to relocate to the Lake Jackson area for the next year.  Next Tuesday, my Dad will be flying up to New Jersey to drive back with Mom, Grandma Grace, Isaac, and a trailer.  The kids and I will be going down to help Matthew for a week or so until they make it back. 

Today's Visit

My Dad sent me an email summarizing today's visit...it covers it all.  So, I just copied and pasted :-)  The doctor got a copy of the scan from M.D. Anderson, and thankfully, there was nothing new.  Below, you will see discussion about 3 tumors....Matthew does only have 1 on his liver.  Additionally, my Dad said that the doctor was very upbeat, and Matthew seemed in generally good spirits.

Just got back from visiting Dr. Falcon, the local oncologist who will doing the chemo.

 

First off, I pressed him as hard as I could about Matthew’s prognosis. Basically, it comes down to this: if he responds to the chemo he should completely recover. With respect to the liver tumor, it has to be operable. There is a region in the liver where a bunch of plumbing comes together. If the tumor is there, you are pretty much a goner – they wouldn’t have even attempted chemo. But Matthew’s tumor is in a very favorable position – on the upper dome of the liver and they can whack off a large part of that area. On a slightly negative note, Matthew’s tumor is also a little on the large size (6 cm) and they would like it to be more in the 2-3 cm range for surgery. If the tumor responds to the chemo it should shrink down to that range.

 

I then  pressed Dr. Falcon for a worst case scenario. He would not lay one out because he said that even if the chemo fails, there are still some back-up therapies that can be tried – in particular oblation of the tumor (sticking a catheter into the tumor and killing it with microwaves or alcohol).

 

I also asked him about the “3 tumors or less” factor that Mom (Amanda) had turned up (your chances improve greatly if you have 3 tumors or less on the liver). He actually was quite familiar with this factor and reiterated that this was in Matthew’s favor. Most liver centers actually use this as a cut-off as to whether or not they can remove all of them and still leave you with enough functioning liver.

 

Finally, the schedule for the next week. Despite what seems like endless delays, we aren’t really running too far behind a best-case schedule. Since the chemo interferes with healing after surgery, they usually wait at least 4 weeks after surgery before they start using chemo. We are just a few days past that now. Matthew still needs a “port “ (permanent IV hook-up). We will go see Dr. Thompson (Matthew’s original surgeon) tomorrow (Wed) for a preliminary visit, and then will probably have the port procedure done as an out-patient procedure at Brazosport Hospital on Friday. Then we will probably start the first round of chemo next Monday.

 

Love to all,

Dad

More doctors, more appointments

The doctor from M.D. Anderson called and left a message, but my dad said all but about two words were difficult to understand.  The doctor has gone on vacation, so my Dad called the hospital to see if the doctor left any notes in the chart, but he hasn't gotten a call back yet. 

My Dad has also spoken with the oncologist in Lake Jackson.  This oncologist will be handling Matthew's chemotherapy.  They will need to put in a port to administer the chemotherapy, so that will be the next step.

My Dad sent me this new image to share....Matthew enjoying a barium smoothie last Friday.

 

Cautious Optimism

Those were the words the doctor used.....and we all exhaled.

Matthew had a CT scan today.  We don't know the results of it until tomorrow, so for today, we have cautious optimism--and we are thrilled.  It will not be an easy year.  Matthew will have to have 2 months of chemo, another surgery to remove the tumor on his liver, another 4 months of chemo, and then another surgery to resect his colon.  It will be a long road, but for now, the doctor was cautiously optimistic about his outlook. 

Matthew says he is most grateful that he doesn't have to have radiation.  He also says it takes a long time to get an answer from doctors, and that he doesn't like CT scans...

We are grateful for the prayers, they are working, but keep up the prayers because we aren't out of the woods yet.

Destiny?

Tomorrow is the big appointment day.  Matthew has to be at M.D. Anderson at 7AM. He has appointments for different testing all day long.   His appointment is with Dr. Christopher Garrett, who specializes in treatment of liver cancer and GI oncology.  We are all very anxious to hear how it goes. 

I would like to finish this post off with a excerpt from my church bulletin.  This excerpt stuck with me so strongly that I kept it for over a year.  I think we are all struggling with anxiety and fear through this, but we have (and his caregivers have) what we need to get through it.  I have to believe it.

What part does God have in our lives in terms of destiny?  Is there such a thing as destiny? We are given some work to do that if we enter into it fully we find fullness and joy.  If we avoid it, if we step away from it, if we are afraid of it-we find a kind of emptiness in life.  This reading (Jeremiah 1:4-5, 17-19) implies that God does have a role in our destiny.  Jeremiah is told by God that before he was born he was given a task to do.  As he was being born there is a beautiful image of God knitting him together, making sure each and every thing he needs to be able to accomplish the task will be given to him.  He is empowered by God.  That's one of the beautiful things about this image of destiny.  We've all heard the phrase:  God does not give us more than we can handle.  He doesn't give everybody the same amount of stuff.  Not everyone can handle the same amount.  If we play with this in the image of destiny, we will see that God is going to understand what our gifts and talents are.  We are asked to use them for the good of the world and for the good of others.  There's a beautiful balance between what we are asked to give, in a sense,  and what we have.  Any time we think God is asking us to given things he hasn't already give to us we are in a place of anxiety and fear.  Those are two things the kingdom of God is not supposed to have.  This beautiful image in the reading from Jeremiah reminds us that God has given each and every person all they need to accomplish the task.  

What does Amen mean?

I spoke with Matthew this evening, and he was in good spirits.  He is most ambivalent about the thought of the potential treatment.  I am sure that is to be expected.  I shared a story with him about my daughter, Claire,  He told me to post it here...so here you go.

Claire (age 4) has recently learned both the "Our Father" and the "Hail Mary."  She was proving that she could say them to Evan (her brother, 8) in the car.  She ended the prayer with "Amen."  Evan asked her if she knew what Amen meant.  Her response:  "It means time to go to sleep."  (She says her prayers just before I leave her bedroom at bedtime.)  Evan and I got a kick out of her response.  Evan's explanation to her was..."It means you really mean it."

Is it Friday yet?

We are all waiting for Friday (Appointment Day).  Dad is still working on rewiring the house.  Apparently, the house was very poorly wired to begin with, and then it had developed more problems.  It is slow going because he is working in the early morning and evening to avoid the heat. 

Since I don't have too much new to share.  I will share the fact that I have spoken with my doctor, and since Matthew is younger than me, they have done a referral to a doctor so that I can have a colonoscopy.  My doctor said the usual rule of thumb is to start screening/testing 5-10 years before the youngest person in your family was diagnosed.  This goes for pretty much any type of cancer.  I encourage anybody that is putting off any kind of screening to get it done---just do it, and get it over with.  They may not be pleasant, and they can be scary, but early detection is so much better than later.

What's the address for that website?

I had a brief talk with Matthew today.  I asked how he was feeling.  He said his mobility was improved, but he still had lots of "tender spots."  He has been out walking, but is disappointed in himself because he can only walk about two blocks before getting tired.  I assured him that recovery from surgery is long and it takes a while to recover.  It has only been 3 weeks.  Also, they have tried to add flaxseed oil to his diet.  He says it is awful, and that it tastes like furniture polish.

Apparently, my Dad has torn up the carpet in one of his bedrooms.  He and Matthew have been working on pulling up the carpet tack strip.  The floors underneath were hardwood, and they have been rubbing them with tung oil to help restore them.

As the conversation was ending, he asked me about the blog.  He asked me about the address, and then asked about the name....apparently he didn't know that Haluska meant noodle (technically pasta pieces). He knows that I have been writing the blog to keep people informed to minimize repeated phone calls and emails.  We also got the OK on sharing stories about him.  But, I hope he is pleased with what I have written so far.

Always a Boy Scout

I don't have much new to report today, so I thought I would share a "Matthew story."

This story comes from Harriotte Robinson, a family friend, and the mother of one of Matthew's friends since childhood.

I am always telling the story of Matt at Chris Nesbits wedding! I remember all the planning and organizing and finishing details that happened the last days before the wedding... and MATT... you were amazing! You had this "miracle" backpack, that reminds me of "the bag of holding"! You had anything and everything in that bag. How you thought of everything... that anyone could have possibly needed... it was stunning. Tape-you had it... Scissors - you had it...pins- you had it... string- you had it... rubber bands, glue, tissues, pens, pencils, push pins, paper, hair pins, powder, spot remover, water... I don't think we ever stumped you and your bag! I have tried to imitate your example at two other weddings (never quite had your skill!!) and again I get to tell of your bottomless bag. Even now I am smiling and shaking my head, and giving you all the credit! You're da weddin' man!

This story made be think about boy scouts, so I wandered over to a Boy Scout website to double check my memory about their motto.  I found the following excerpt from the Boy Scout Handbook.....

Be Prepared.

That's the motto of the Boy Scouts.
"Be prepared for what?" someone once asked Baden-Powell, the founder of Scouting,
"Why, for any old thing." said Baden-Powell.
The training you receive in your troop will help you  live up to the Scout motto. When someone has an accident, you are prepared because of your first aid instruction. Because of lifesaving practice, you might be able to save a nonswimmer who has fallen into deep water.
But Baden-Powell wasn't thinking just of being ready for emergencies. His idea was that all Scouts should prepare themselves to become productive citizens and to give happiness to other people. He wanted each Scout to be ready in mind and body for any struggles, and to meet with a strong heart whatever challenges might lie ahead.
Be prepared for life - to live happily and without regret, knowing that you have done your best. That's what the Scout motto means.

Matthew achieved the rank of Eagle in scouts, and I think that he embodies the meaning of the motto as well.  

Appointment!

Finally! Matthew has to be at M.D. Anderson at 7:00 AM on June 17th.  This is for admission for testing.  This has been long awaited.  It is actually one month exactly from his surgery, which according to some research, is usually the amount of time they like to wait after surgery. 

On the downside, the air conditioner in his house has to be replaced.  :-(

Kudos to Dad

My Dad is really on top of things, but people are not making it easy for him.  M.D. Anderson has had a really hard time getting the insurance issues straight.  Matthew does not have traditional medical insurance, which may be one reason he didn't visit a doctor earlier.  He does have a catastrophic insurance policy (thank goodness my Mom helped him get that).  If this doesn't qualify as catastrophic, I am not really sure what does.  M.D. Anderson keeps telling my Dad that the policy won't cover the treatment.  My Dad has followed up with the insurance, who says they will cover it.  Today, it finally came down to a conference call between the case worker, my Dad, and the insurance.  The policy should cover his treatment --copay still required of course--and the caseworker said she would be back with Dad first thing in the morning. 

Dad has also been making sure Matthew eats lots of foods with antioxidants and cancer fighting properties--per Mom's orders (he makes Matthew a shake each morning).  He has been taking care of appointments and paperwork.  Additionally, Dad has been doing some electrical work on Matthew's house.  So he has been doing that morning and evening--when it is slightly cooler.  The air conditioner needs work, and Matthew has never been home to schedule an appointment.  Also, if you know Matthew, he is used to being hot all the time so he thinks air conditioning is too cold.  The air conditioner people have now cancelled twice.

Dad has also been doing his own job through this all.  All he needs is internet and his laptop (which he had to replace today, but that's another story).  

So, in case you didn't already know, my Dad is awesome.  We love you Dad!

Waiting for the Phone to Ring

Nothing new to report from the weekend.  I spoke with Matthew today.  He said he still tires very easily, but is feeling better. 

The main thing is that we are waiting for M.D. Anderson to set and appointment.  My Dad will be on the phone with them bright and early in the morning.  Let our prayer be that he gets an immediate response.



When Matthew was about 3, he decided to decorate a bar of soap.  This bar of soap was given to my grandparents, and has remained in their curio cabinet ever since--close to 30 years now.   In the videos below, you get a look at the soap, and my Grandmother is telling my Aunt Martha about how Matthew gave it to them.  These are very short videos, just a few seconds, but look closely at the decorations.  This is a family favorite.

 

Like a Surgeon

Nothing new to report today.  My Dad left two messages with the case worker at MD Anderson.  I am thinking if he doesn't hear from them on Monday, they are going to incur the wrath of Dad.

When we younger Matthew was a big fan of Weird Al.  You can't help but sing along.

Emily's Wishes

My (and Matthew's) sister Emily, came to me with a suggestion yesterday.  She thought it would be nice if people shared their favorite story about Matthew, or a quote/song that reminds you of Matthew.  Please send me your stories and quotes and/ or songs and I will include them in the blog.  Just in case you are wondering, Matthew knows we are doing this. :-)


From Emily....To Matthew.....

"Music expresses that which cannot be put into words and cannot remain silent” – Victor Hugo

The Squeaky Wheel

There is not a lot of news today, but I thought I would go ahead and post so people don't worry because I didn't.

Matthew had his staples out today and the doctor says everything looks good so far.  Healing from this surgery is essential to moving on to anything else.
 

My Dad is becoming the squeaky wheel at M.D. Anderson.  He spoke with the case worker again today about insurance, then checked with the insurance, and then called the case worker back to tell them they were wrong.  Here's hoping the squeaky wheel does indeed get the grease, and that they will soon get Matthew in for an appointment.  Keep the thoughts and prayers coming.  They are much appreciated.