History

Journal History

Monday, October 07, 2002 at 01:33 PM (CDT)

Realized that this hasn't been updated since our last appointments in the summer. Spencer had his prostheses removed and checked and that all looks really good. No changes were made, everything looks great. Spencer also saw the Pediatric Opthamologist. The vision in his left eye remains the same, needing a little bit of correction. Spencer was encouraged to wear his eyeglasses at all times and they went over some things that Spencer should always refrain from......sling shots, splat ball........! A good reminder for all of us.

Spencer is doing really well in 1st grade. He is a bit unimpressed with all the "learning" that has to take place and there isn't nearly as much play time as in Kindergarten. Reality Check! Spencer loves to be active and is hoping that Santa will bring some jumps for our driveway that he can use his bike on. :)

Blessings to you!

Sunday, July 07, 2002 at 09:17 PM (CDT)

It's been a while since we've updated - life got a bit hectic around the Syvertson house.

Amy was put on "restricted activity" for the last month of pregnancy. Spencer wrapped up his school year and celebrated his 6th Birthday on June 4.

Spencer's last appointment at the U of M went very well. The MRI was completed and the results were wonderful. There were no abnormalities noted and we were told that he will only have to have more MRI's if he develops symptoms that would indicate something is not normal. The check-up with Dr. Harrison went great! Spencer allowed him to take out the prosthesis and get a good look at the socket. That all appears to be doing great. The MRI also noted that the tissue is growing well around the orbital implant and that things are coming to life in there real well. So overall Spencer had a fabulous check-up. He returns to see Dr. Harrison in 1 year. We're having a tough time believing that - an entire year!!!

On July 29 Spencer will visit Mr. Fletcher and have his prosthesis checked out to make sure that the size is still appropriate. Spencer will also visit the Pediatric Opthamologist at that time to check the vision in his left eye.

Spencer is having a great summer. He is busy with Tee-Ball and Soccer and has had lots of fun at the lake tubing behind the boat and swimming. He is also enjoying being the biggest brother to his new sister Elli Jo. She was born on June 13.

Blessings to You!

Wednesday, April 10, 2002 at 09:56 PM (CDT)

We're all scheduled to see Dr. Harrison at the U of M on May 13 for another follow-up from the enucleation.

We received a call from Dr. Olson (also at the U of M) and he has requested that Spencer have an MRI done. Some abnormalities were found in a previous MRI. Sounds like the MRI equipment at the U of M is a little more detailed and can give us a closer look at the abnormality. We don't know exactly what area it is in, somewhere in the head. So we'll have lots of questions when we're there. They'll be able to send our MRI films with us when we see Dr. Harrison so at least we'll have some preliminary results.

We'll keep you posted!

Thursday, March 07, 2002 at 09:52 AM (CST)

We received the new prostheses just a few days after Spencer's appointment. So we're getting practice at home getting that put in! This one is a bit larger than the last one and so Spencer is adjusting to that. He says it just feels different. He is getting very independent in taking care of his prostheses. If it looks a little off kilter he'll go to the mirror and check it out and turn it himself.

This week has been a little challenging. Spencer has a cold and some has settled into his eye. So twice this week his prostheses has come out. Both times in public places - it's making him stronger, but it's still tough to see. He gets scared. Both times now he has put it back in by himself with a grown-up there to help. He's doing great! We're waiting on a call from the dr. to see if there are other things we should be doing to treat this cold.

Spencer began play practice this week. He's going to be in a production of Snow White. He is very excited about it - something new - and he's very excited about the new found independence of play practice. Away from mom and dad and enjoying the new experience. We're so thankful he has such confidence to go out and try these new things without thinking twice about it!

Friday February 8, 2002 9:50 AM CST

Spencer's appointment on Wednesday went really well! He tolerated the anesthesia well with very little side effects! That was great for all of us!

Dr. Harrison said that his eye has healed up just great! Everything looks perfect. They also did a full exam on the left eye - just for safe measure - and that eye looks perfect! Good news all around!

Mr. Fletcher, the Ocularist, put in a mold to create his new prostheses with. Once Spencer was feeling good we headed to Mr. Fletcher's office and he got fitted for the new prostheses. Lots of in and out of the prostheses - and Spencer was just so brave - once again. He makes us so proud!! So now we need to wait a few days and the prostheses will be sent in the mail hopefully by the middle of next week! Not your average mail for the day!

Spencer is doing just great & is so resiliant to all of this. He headed off to Kindergarten yesterday with his clear conformer in, which allows a full few of his "eye socket." Didn't phase him a bit. He did say that all the kids were asking him what happened to his eye. But, just another day in the life of Spencer! What a blessing he is!

Tuesday February 5, 2002 9:47 AM CST

We're headed to the cities this afternoon, so Spencer can get in a little swimming time tonight. Tomorrow morning he has an appointment at the U of M for an exam under anesthesia. They'll be putting in a mold to make a new prostheses. So we're hoping he comes out of the anesthesia easily - then we're off to Mr. Fletcher's office where he'll complete the prostheses. It'll be a long day - but he's always such a trooper and a brave boy!!

Thanks for your visits to the website and for your continued prayers!

Wednesday, January 09, 2002 at 06:27 PM (CST)

It's been a while since you've had an update! Spencer is doing really well! He has adjusted to his prostheses very well. It doesn't seem to bother him too much. Every now and then his eye needs a good cleaning, but we've been infection free for quite some time! The prostheses definately doesn't like to stay in place as it should. It likes to shift a little bit. We fussed with it alot in the beginning and discovered that it wasn't worth it. So on February 6th, Spencer will be going under anesthesia at the U of M and they'll be putting the mold in and making a new prostheses. We're hoping that with the mold we'll get a better fit. Also, resulting in better tracking and a better overall quality! So we shall see. We figured that after all that Spencer has been through - he deserves to look as "normal" as he can, and we know that it's possible. It just might take a couple of attempts to perfect it!

We received a call today with the final pathology report. They confirmed the diagnosis to be the Astrocytic Hermatoma. (Spelling ???) Which was a benign tumor that decided to grow. So we'll just keep a close observation on Spencer through young adulthood to watch for signs of associated risks. But for now - things look GREAT!

God Bless!

Saturday, December 01, 2001 at 08:56 PM (CST)

Finally an update after our busy week!

Spencer was to the U of M on Monday, Nov. 26 to see Dr. Harrison. That
appointment went very well. Everything appears to have healed real well.
Spencer wouldn't let Dr. Harrison remove the conformer so that he could look
behind there. Spenc wasn't real excited about the little suction tool he
was going to use. Spencer thought he was going to suck he whole eye out.
Regardless, the appointment went well. No pathology reports yet, so we'll
continue to wait for those.

On Wednesday Spencer had his prostheses made in the cities. That was a busy
day. We are very proud of Spencer for how well he did. There was quite a
bit of in and out of the conformer and prostheses in order to get the
fitting done. He was a real trooper! Not to say that he was excited about
the whole process, but he hung in there and did really well. Gene Fletcher
is the Ocularist that made the prostheses. What an artist! He painted the
prostheses so well, it matches his other eye extremely well!

So now we're adjusting to the prostheses and trying to decide if this will
be the one for the long haul (next 2-3 years) or if we're going to have them
redo it. It doesn't really want to stay in place real well and doesn't
appear to be tracking real well. What we can do is have Spencer sedated and
then they could make a mold of his eye tissue and the prostheses would have
a more accurate fit. So we'll see what the next few weeks bring and we'll
make a decision.

God Bless and Merry Christmas!

Syvertsons

Thursday, November 08, 2001 at 07:13 PM (CST)

We've come leaps and bounds since the last update! Praise God!! We removed
the patch "for good" from Spencer's eye on Saturday morning and it's been
off ever since! He has been doing fabulous. He hasn't once asked to have
the patch back on! It's been a huge help that the swelling is gone and the
conformer is staying in where it belongs! We're still putting ointment in
the eye twice a day but that's old hat by now! We're surprisingly impressed
at how good the conformer looks - considering it is just temporary. It
tracks really well. So we have high hopes for his prostheses.

Spencer will have a follow up appointment with the surgeon on Monday,
November 26th. Then back to the cities again on Wednesday, November 28 for
his prostheses. Sounds like it will be an entire day but we'll go home with
his prostheses at the end of the day! They'll fit him in the morning and do
the painting that day! So it will be an exciting day. We're not sure how
the whole in and out of the prostheses and conformer is going to go so we're
asking for a few extra prayers that day! But besides that, Spencer is busy
being a typical 5 year old boy and has really been working on his baseball
skills with this nice weather! He also has been very excited as he found
out that he's going to have a new brother or sister in June! So life has
been very good for Spencer!

Again, thank you for your prayers & support! God has really blessed us!

Monday, October 22, 2001 at 09:04 PM (CDT)

We were at the U of M to have a check-up with Dr. Harrison today. He
removed the patch for the first time and we were all pleasantly surprised at
what we saw. There wasn't too much bruising - although it is still quite
swollen. The conformer that is in place temporarily looks really good.
(This is the contact-like piece with the digital picture on it.) We saw
that his new eye was tracking some and that was good to see! So Dr.
Harrison sent us on our way with plans to see Spencer in 4 weeks. We almost
made it to the waiting area and then the conformer popped out. Needless to
say, Spencer got very scared, it was an unexpected surprise. To spare you
details, the conformer was eventually put back in by Dr. Harrison with the
help of 2 nurses and our good friend, Tracy Johnson. (It truly was a
blessing that she was with for this appointment!) Mom ended up not being
too helpful - this episode pulled at the heart strings a little - it didn't
feel so good to see Spencer so scared. (Mom was scared too!) Dad had to
return to school today - we thought this appointment would be a piece of
cake.

Another patch was put on and we'll continue to patch until the swelling is
gone. We do need to remove the patch twice a day to put antibiotic ointment
on the eye. Well, we did just that tonight - and it was a task that one
couldn't prepare for. Our Spencer now has quite a bit of fear that when the
patch is removed that his "eye" is going to fall out! Will you please pray
that his fear will subside and that he will feel comforted? We know each
day will get better and this will all get easier and will soon be a regular
part of our life. Until then, we're a little scared and uncomfortable and
it is really hard to see Spencer go through this fear & anxiety.

Right now we're tired, exhausted & ready for a new day! A day we give to
God!

Thursday, October 18, 2001 at 12:39 PM (CDT)

Everything went well with Spencer's eye removal surgery. Dr. Harrison feels
the tumor was contained within the eye, he didn't see any growth outside of
the eyeball. So that leaves us comforted in the respect that the tumor
didn't spread anywhere else in his body!

We had a huge support group at the Phillip's Eye Institute with us. We
appreciated them being there for us on a "not so fun" day! To those of you
who were with us in thought and prayer - THANK YOU! And a big THANK YOU to
Karen Mogard & Becki Quade for watching Teirrah and Easton for the day so we
didn't need to worry about them!

Spencer was really sleepy yesterday, they sent us home around 7:00. He
slept most of the way home then crawled into bed. The night went as well as
could be expected. This morning he perked up really well and then tuckered
out again. We keep pumping in the pain killers as often as we can so we can
try to keep him comfortable. The pain seems to be tolerable.

We return to the U of M on Monday and Dr. Harrison will remove his patch.
So until then we'll lay low and continue our healing prayers.

God Bless You and Thank You for the unending prayers and support!

Monday, October 15, 2001 at 07:05 AM (CDT)

Surgery date is almost here! Spencer is doing great and has the best attitude about all that is to come! He's great to have around! Today he visits our family dr. for his pre-op physical. Tomorrow morning we're heading to the cities for a day of fun and relaxation at the Mall of America! Spencer's older cousin Nick is joining us so that will be lots of fun for all! We also have an appointment with the Ocularist. An initial appointment to meet so that he's a familiar face when we return to him 6 weeks post-op to create the prostheses.

Surgery will be at 12:30 on Wed. Oct 17 at the Phillips Eye Institute. We have some friends and family joining us there. The support will help so much on a day that will be full of a lot of emotion! The dr.'s tell us that Spencer will return home with us after surgery, no hospitalization needed. We're a little anxious about that!

The prayers and continued words of encouragement from you have helped comfort us. This has been a difficult time, but with our support system we've had more peace with the decisions that have been made.

God Bless and Thank You!

Monday, October 08, 2001 at 10:03 PM (CDT)

Hello everyone,

On Oct. 17, 2001, Spencer will be having surgery to remove his eye. 12:30
at the Phillips Eye Institute in Minneapolis. We met with Dr. Harrison
today. He told us that Spencer's surgery will take about one hour and he
will be going home that same day. What a surprise to us!! The healing
process will take about 4-6 weeks. He will have to wear a patch for 7 days,
to prevent any infections.

He will be fitted with a Orbital Implant which is made out of Ocean Coral.
They use this coral because it's structure has a remarkable similarity to
the human bone. The implant will be placed in the eye socket at the same
time the eye is removed. They will attach the eye tissues and muscles to
the orbit. This will allow the artificial eye to move in the same manner as
the natural eye. There will be a temporary design - iris like - placed on
the orbit until the final prosthesis can be put into place.

Spencer will be meeting with an Ocularartist before the surgery.
Ocularartist is a person who details artificial eyes. We are going to have
the artificial eye painted just like eye that is being removed. There are
some unique characteristics that we want to keep. The prosthetic eye is a
large contact like lens that is placed in the front of the orbital implant.
This will be need to be resized in about 4-7 years. Most people will have
about 3 or 4 different prosthesis in a lifetime.

We believe that we are taking the best path for Spencer. The radiation
treatment posed too many risks that we were uncomfortable with. We
appreciate all the emails and words of encouragement that we have received.
Please keep sending us these items as they are a great comfort to us as we
go through this difficult time.

Spencer is so very ready for this next step to happen. He actually thought
Dr. Harrison was going to take his sick eye today and give him his new one.
Spencer was letting people know that in 9 days he'll have no more tumor.
His great attitude sure helps us out!

God Bless You All & Thanks for your unending support and prayers!

Mark & Amy

Sunday, October 07, 2001 at 04:22 PM (CDT)

A short update to let you know that we will be meeting with Dr. Harrison at the U of M on Monday, Oct. 8. He is the Occulplastic Surgeon that will be performing Spencer's enucleation. We have many questions ready for him. They will be setting his surgery date when we are there!

Spencer is excited about getting a new eye. We talked about it this weekend and he said,"I'm glad I'm not going to have a sick eye anymore!" So hopefully he can keep his great attitude through all that is to come and we're sure the outcome is going to be GREAT!

Thank you so much for all the supportive and caring emails! The guestbook has been encouraging and all of the messages sent to our personal email address - THANK YOU! It's the support and prayers that really help us through!

Thursday, October 04, 2001 at 02:16 PM (CDT)

It's been a long week, we've made a difficult decision and we're going to go ahead and have Spencer's eye enucleated (removed).

We put all of our facts and information together and basically there is no great hope for Spencer's eye right now. The treatment option of radiation is just to risky and without treatment, the tumor will continue to grow.

So after many phone calls to doctors and many tears shed, the decision is made and we truly feel it is the right decision for Spencer's best interest for his future.

So now we wait for a surgery date and begin to gather information on a prosthetic eye. We know it will not be an easy road, but Spencer is such a fighter that we know he'll be so strong and will do great! (Probabley better than mom and dad!)

About all that we know right now is that he will have about a 6 week healing time after surgery and then he should have his prosthesis in 2-3 months. We're hoping to do the surgery soon so we can put some closure to all of this.

We'll keep you informed as we know more details!

Thanks for the prayers!

Monday, September 24, 2001 at 09:47 PM (CDT)

How to summarize what happened today?
We'll give it a shot!

This morning Spencer saw the Radiation Oncologist at the U of M. We received our information regarding radiation treatments and side effects. We also learned today that there are only 9 cases in the world of people with this same type of tumor in the same location. Astrocytoma in the eye. So, not a lot of past history to go on for treatment options and successess/failures. We left the appointment at the U of M not sure that we will begin radiation now. Some of the long-term side effects really didn't sit well with us. And since we're the ones making this decision - we feel we need to be a bit more confident and comfortable in what we decide for Spencer.

We talked with the eye tumor specialists out in Philly today and their opinion is that we continue to monitor the tumor for a few more months, then return to Philly in January. Right now we're comfortable with that, but at the same time we're ready to get to the next step and figure out what we're going to do about this rare tumor.

Spencer has been such a trooper through all of this and he bounces back so well. If his eye has to be removed - we would prefer that it is done now while he is younger and can adapt pretty easily without his ego taking too big of a whamie!

Our plan is to return to the U of M in a coule of months and then to Philadelphia in January. Our hope is that we make some decisions there after a year of observing this tumor.

So in the meantime, can we ask that you continue to send your prayers this way? It was a difficult day and as we imagined - as it's time to make decisions that will affect Spencer's future, it gets more difficult. Thank you for your love and support! We're really blessed and thank God for our support system!

Tuesday, September 11, 2001 at 09:24 PM (CDT)

We're headed towards our first course of treatment soon. Spencer will begin External Beam Radiation Therapy (EBRT) at Fairview University Hospital in a few weeks. We're are not sure of what this all entails and have many questions ourselves. But we've been reassured that they'll answer all of our questions when we go for our initial consultation on Monday, September 24. The "educated quess" from Philadelphia is that Spencer would go through radiation treatments 5 days a week for 4 weeks. We'll find out all of our details in our next couple of appointments with the Radiation Oncologist. We first have our consultation, then Spencer will return and they'll do all the measurements and Physics involved in detailing his treatment. ..........Then we begin. While we wait this allows us plenty of time to pray and think through this next step of our journey.

Spencer will be going in for some more testing locally in attempt to rule out more rare diagnosis. Currently they're diagnosing his tumor as an ASTROCYTIC HEMATOMA. (Spelling may not be correct this time of night.) Basically, a benign tumor. Spencer will be having another CT scan done as they want to rule out any tumors in the brain. (We're not sweating that one too much as he had an MRI & CT Scan done in Feb.) But regardless, more testing for our trooper. We're hoping this will lead to a specific diagnosis someday soon!

Spencer has begun Kindergarten and he thinks it's the best thing ever! He loves riding the bus everyday! He also thinks he's pretty special since the only ones that wear glasses in his class are him, Mrs. Pelton (his teacher) and Mary (classroom assistant).

Again, thank you for the continued prayers, support, & notes of encouragement! We're truly blessed!

Thursday, August 16, 2001 at 11:04 PM (CDT)

We're back home again! We had safe travels and Spencer enjoyed the airplane rides!

Wednesday, Aug. 15 they did a fine needle biopsy. They were hoping for results by the afternoon - no such luck. We flew home not knowing the results, but that was the dr.'s recommendation. They put on a pressure patch after the biopsy - we will be able to remove it Friday morning. They did the biopsy by going in the front of the eye - so we're hoping for the least amount of effects from that.

FINALLY we received a call from Philadelphia - Dr. Shield's - this afternoon with the results. The preliminary cytology reports show NO SIGNS OF CANCER!!!!! YAH!!!!! All of those prayers are sure helping! So now a full gammet of tests will be run in the cytology lab and they're going to do their best to find out what type of tumor this is. So in about 3 weeks we'll find out the results from that and proceed with recommended treatment. Right now it looks like they're leaning towards doing radiation - laser. With hopes that the tumor would respond well and shrink. We're definately not out of the woods yet but we can sleep a lot better! We'll be doing much less patching therapy - maybe 1-2hrs. per day. Dr. Shields said he'll never have good vision in the right eye because of the location of the tumor. So it's not worth causing so much stress to our little guy and making this part of his childhood so miserable.

Spencer's kind of bummed since he can't do any swimming the next 2 weeks - but I'm sure he'll survive this also!

After we take off the pressure patch we'll be doing ointment and eye drops 3 times a day. He's being a big, brave talker and says this is no big deal - so we sure hope so. We have to do it - we can't take a risk of him getting an infection in that eye.

So besides that - this Syvertson Family is so happy to all be home together again. Dad was gone with the Air Force for 2 weeks prior to the Philadelphia visit. We're all happy to be home in our own beds! We're all exhausted and hoping for a few naps in the next upcoming days!

You are all so special to us! The support never ceases - we continue to be amazed! God really has blessed us with so many wonderful people in our lives. God Bless You!

Monday, August 13, 2001 at 11:30 AM (CDT)

We've seen both Dr. Jerry Shields and Dr. Carol Shields this morning! What a brave guy Spencer was!! The did an ultrasound, took photos of his eye and sat still and followed directions really well while they examined his eye. He was able to do very well and they did a very thorough exam without the anesthesia! We've VERY proud of him!!

Today they confirmed that the tumor is showing a progression of growth and that there is some hemorrage going on. So, Back to Will's Eye Hospital early Wednesday morning. They decided it's time to do a fine needle biopsy. This will be done under anesthesia - a very quick procedure. Basically right now they're telling us we're looking at 2 treatment options. (1) If the biopsy confirms that Spencer has Retinoblastoma - the malignant cancer - then his eye will have to be removed very soon. Within a week of the biopsy. (2) If the biopsy shows a benign tumor, then the treatment option would be radiation. Not the radiation plaque, but radiation beams. Both of these treatment options would be done back in Minnesota at the University.

We were told we should know the results from the biopsy in 24-48 hours. So our plan is to fly back to Minnesota Wednesday evening, Aug. 15 and wait for a phone call letting us know what to do next.

The patching therapy is "on vacation" for a couple of days! We are going to have some fun and try to eliminate some stress the rest of our trip here in Philadelphia.

We're staying at the Ronald McDonald House in Camden, NJ again - right across the river from Philly. Spencer thinks we have a really cool room - the jungle room! His bed is elevated and he's pretty important!

We're holding up well - a bit tired - but doing fine. We'd appreciate continued prayers - it still gets overwhelming at times.

We'd love it if you'd take a minute to type a little note in the guestbook - we can check those even when we're not home! Fun to hear!

Thanks for visiting Spencer's site - we'll keep updates coming!

God Bless!

Friday, August 10, 2001 at 11:37 AM (CDT)

We're getting ready for our visit to Philadelphia. Spencer and mom fly out Saturday, Aug. 11th and will meet dad out there. He's been on the east coast for 2 weeks with the Air Force Reserves.

Spencer's appointment is Monday, Aug. 13. It will be in the office and they will try to do a complete exam without anesthesia. If they need to follow up with an exam under anesthesia or the radiation plaque - that would most likely be done on Wed. Aug. 16. We will find out the game plan once the dr.'s have had a chance to do a good exam and review what's been going on.

The patching therapy has been going quite well.........considering the circumstances. Spencer patches his left eye for 6-8 hours per day. So that leaves him with the minimal vision that he has in his "sick" eye. He does real well around home and in familiar situations. We've had several frustrating moments for all of us but we know that this is what the dr.'s feel is best right now. Hopefully he'll be able to restore some vision in his right eye.

Thank you all for the continued support. We love to read the messages in the guestbook - it's so encouraging! We also appreciate the cards and calls. We are so blessed with a great support system.

God Bless you and we'll post news when we can once we're in Philadelphia.

Thursday, July 19, 2001 at 02:53 PM (CDT)

We just returned from the U of M - Spencer had his exam under anesthesia this morning. He was so brave and did very well with his eyedrops! Today they didn't intubate or put an IV in so that was GREAT! Recovery from his anesthesia went really well!!!

Dr. Olson feels that again the tumor has grown a small amount and he is confident that there's a pattern of growth. Also today he observed an area of hemmorhage. He said there were 2 areas of blood so that was something new and would indicate obvious change. He is making recommendation to Dr. Jerry & Carol Shields in Philadelphia that they do a needle biopsy or remove the eye. Basically, it's time for some sort of treatment. So we'll see what their opinion is out at Will's Eye Hospital.

So now we hang tough and wait for our next trip to Philadelphia. His appointment is set up for August 13.

Tuesday, July 17, 2001 at 11:00 PM (CDT)

Here's a little update on Spencer's appointment today with Dr. Freeman - Pediatric Opthamalogist. We were very pleased with the staff and especially Dr. Freeman today at the Northwest Eye Clinic. Spencer had a real good experience! Yah! He only had to get one set of drops and he was so brave!! We found out they have their drops specially made for pediatrics. We were hoping we could get a few bottles. It's all mixed together so they only have to do it once! Spencer also thought this was a good deal!

Dr. Freeman will be the one working with Spencer ( and mom & dad) on possibley restoring some vision in his right eye. Beginning tomorrow - Wednesday, July 18 - Spencer will be wearing a patch over his left eye for 6-8 hours a day. The hope is that this will force his brain to start using the right eye. The anatomy of the eye necessary to get vision is fine and so it is a possibility that Spencer could greatly improve his right eye vision. Currently he is able to see about 2 inches in front of his eye and it's quite blurry for him. He's unable to distinquish between 1 or 2 fingers - it's very blurry. So that vision has decreased since January. Back then he was able to see at about 2 feet. So we're expecting quite a challenge with the patching therapy. But if this is the best thing for Spencer in the long run - we'll do everything we have to! We're asking for some extra prayers the next few days as we begin this. Spencer will basically be "blind" - so if you have any creative suggestions of things we can do to pass our time - they would be GREATLY appreciated! Mom and dad could use some extra prayers for patience and mental strength! And Spencer....he's quite a perfectionist and his little world is going to be thrown in quite a flurry for the next 3 months. He'll do great - he's such a trooper.

We're headed back to Minneapolis for the next exam under anesthsia - Thursday, July 19. This time we're going to be bringing Grandpa Pete Hagert and cousin Kayla Lundberg with. The extra company and support is good for all of us!

God Bless you and we'll post results of his exam when we return home!

Tuesday, July 10, 2001 at 10:09 AM (CDT)

A BIG thank you to all of you for your continued support & prayers for Spencer! We continue to be overwhelmed by so many generous hearts and spirits!

Spencer is doing good! He is busy enjoying tee-ball and swimming lessons. He figured after one day of lessons that he knew everything about swimming except one thing - diving - he said he knows how to dive except it's kind of scary. We convinced him that he'll still need to wear his lifejacket by the lake and will need a few more years of swimming lessons to "learn it all!"

Spencer will be seeing a Pediatric Opthamalogist on Tuesday, July 17. It will be a full morning and hopefully will only have to have his pupils dilated and no other invasive things done. We're hoping to come away from that appointment with an expert opinion on whether or not to patch his left eye. The dilema is......if we patch - his sight may improve but we still are unsure about treatment for Spencer in the future or if he will have to have his eye removed. So we're not sure if the stress of him not being able to see well at all through the patching is going to be the best option.

Then on Thursday, July 19 - back to the cities as it is Spencer's next appointment at the U of M. Same drill - exam under anesthesia - measure the tumor - check for changes. This will be the 7th time he's been under anesthesia since February. We're hoping they'll get his dosages down pat soon because it makes the world of difference for Spencer. We've experienced both sides of the coin. For all of us it sure works great when he gets the minimum dose needed!

So we would welcome continued prayers - especially on July 17 & 19! The power of prayer has become so evident to us! It has really brought a sense of peace through this trial.

God Bless you all!

Thursday, June 21, 2001 at 02:14 PM (CDT)

We're back from our appointment at the U of M. The exam under anesthesia went well. Dr. Olson feels that the tumor has again grown a very small amount. He figures hundredths of millimeters. The tumor itself is around 7 x 7 mm. It's difficult to measure as it is very atypical.

We'll return to have another exam under anesthesia in July and then will go to Philadelphia in August. It's Dr. Olson's opinion that they'll opt to do some sort of treatment or a fine needle biopsy when we're there.

Spencer is doing pretty well. He had a real tough time coming out of his anesthesia this morning. That's such a tough time since he doesn't quite understand what's going on with his body. We all survived and he's well on his way back to his normal self. He loved having his cousin Nick with - he's a lot more fun than mom and dad! :)

Thank you for your continued prayers!

Wednesday, June 20, 2001 at 02:04 PM (CDT)

We're off to the cities. Spencer sees Dr. Olson at the Univ. of Minnesota tomorrow morning at 7:30. We have to be to the hospital at 5:30! Good Morning! He'll be doing the "routine" exam under anesthesia to measure the tumor and check out the eye to see if there's any changes going on!

Thank you for your prayers! You'll be updated as soon as we get a chance!

Wednesday, June 13, 2001 at 09:47 PM (CDT)

Spencer had quite a day today! He had his pre-op physical/Kindergarten checkup this afternoon. The finger poke to get blood for the hemoglobin & lead tests didn't go too well. They weren't able to get enough blood. So he had to get poked again! He definately wasn't happy about that! Dr. Malling checked him out and everything looks great! Then came the shots - 3 of them! Poor guy - he was exhausted tonight! But he's all ready for school now!

We're set to go to the U of M for his exam under anesthesia Thursday, June 21. They will be measuring the tumor and also looking for any significant changes going on within his eye. His appointment is scheduled for 7:30am so we would love some extra prayers sent Spencer's way!

Spencer will be seeing his optrician tomorrow to see if his sight has improved since he began wearing his glasses. We're hoping for a tear-free appointment! We don't expect change for the right eye but hopefully his left eye will slowly get corrected to 20/20 vision.

Regardless - Spencer is all ready to start his big tee-ball season on Monday!

Monday, June 04, 2001 at 09:47 AM (CDT)

HAPPY BIRTHDAY SPENCER!
5 YEARS OLD NOW!

WE LOVE YOU SO VERY MUCH!

Thursday, May 31, 2001 at 04:36 PM (CDT)

Life is somewhat back to "normal" after our last trip to Philadelphia and the benefit. Spencer had his last day of preschool yesterday and is more than ready to start Kindergarten!

Spencer has an appointment scheduled for June 21 at the U of M. Dr. Olson will do an exam under anesthesia. He will measure the tumor, take photographs and assess any changes.

Day to day Spencer is doing GREAT! He loves going for bike rides and swinging. He is very excited for birthday coming up - June 4. He will have his first "friends" birthday party on Sunday. He can hardly wait.

Thank you for your continued prayers and support! We take each day as it comes and continue to offer this trial up to God!

Have a great day! God Bless!

Thursday, May 24, 2001 at 09:35 AM (CDT)

Last night was the spaghetti dinner benefit for Spencer. WOW - we're overwhelmed and speechless. An estimate of 800 people were served! The community of Paynesville was amazing - many different organizations and groups of people working together. It was really neat to see.

Spencer had a great time! We had told him that we were going to a special dinner where some of the people cared about him would be. During the benefit he said to mom,"Alot of people sure care about me - don't they?" He's definately right!

Nearly $6000 was raised for Spencer's Trust Fund - medical/travel expenses!!!!!

A SINCERE THANK YOU TO ALL OF YOU WHO CONTRIBUTED IN SOME WAY TO THE BENEFIT!
WE'RE TRULY BLESSED TO BE A PART OF THIS WONDERFUL COMMUNITY!

Friday, May 18, 2001 at 08:10 AM (CDT)

We have made it home safely to Paynesville after our trip to Philadelphia. Spencer is doing GREAT! The doctors must have been real gentle this exam as his eye was not nearly as irritated as it usually is. He recovered very well from the anesthesia!

Spencer is very happy to be home & enjoyed showing his new friend "Spikey" his new home. (Spikey is his new teddy bear he received from the Jostens company on his flight in their jet on the way to Philly.)

The next step is another exam under anesthesia in 6 weeks at the University of Minnesota. They'll continue to measure and monitor the tumor for any apparent changes.

Spencer wasn't sure what to think about seeing his picture on the front page of the Paynesville Press. They published a really nice article about him.

Your prayers & support continue to carry us through - THANK YOU!

God Bless!

Wednesday, May 16, 2001 at 05:43 PM (CDT)

We're quite tired so hopefully this message makes sense. What we found out today is that they feel the tumor itself hasn't really grown since we were here in February. There are some new deposits, but they don't appear to be malignant or of immediate concern.

The suggestions from the tumor specialists here is that we continue to monitor the tumor and return here to Philly in 4 months. So Spencer will be seen at the U of M in 6 weeks. We were assured that the tumor still remains only in the right eye and has not traveled out the optic nerve. His left eye looks great!

We continue to put our trust in the Dr. Shield's (husband and wife team) here. They see so many tumors & Retinablastoma cases, they mentioned again today that they have never seen a case quite like Spencer's. So they're using their best knowledge and experience for our treatment options and monitoring is what they feel is best at this time.

Spencer thought this morning was great since he was able to have a popsicle for breakfast. When he had his supper tonight he was sure that it was just the rest of his breakfast, even though it was 6:00pm. He's doing well, he had a really good sleep. He struggled a bit coming out of anesthesia - who wouldn't! But after a couple of popsicle's things were looking up.

Thank you for your continued prayers & support. We hope to return home to Paynesville tomorrow sometime - once we get some tickets.

God Bless! Mark, Amy & Spencer

Tuesday, May 15, 2001 at 06:29 PM (CDT)

We are here in Philadelphia. Our travels out here were more than great. We flew on Josten's corporate jet. What a great bunch of guys to travel with. We visited, joked and laughed the whole trip. Waiting for us at the airport was a cadillac - they had gotten us limo service. Before we knew it we were checking into the Ronald McDonald House in Camden, NJ. (Right across the river from Philadelphia.) We have our own room, the farm room, it's so cute - all in the farm theme. The house is beautiful and there's so much to do. We've met some great people. Last night we were fortunate to visit with a couple from Germany that has a 4 year old boy that had Retinoblastoma.

Today we went to Philadelphia and saw the Fireman's Museum. Spencer bought a train ticket and is now a pro at riding the train here. Spencer is a bit tired out today so have just been taking it easy. We're all a little tense about tomorrow - can't imagine why! :)

Thank you all for checking in and thanks for your prayers! We'll let you know as soon as we know anything tomorrow. Spencer's appointment is scheduled for 12:30.

God Bless you all!

Saturday, May 12, 2001 at 02:13 PM (CDT)

Spencer is busy having a fun weekend before our trip to Philadelphia. He spent last night with his cousin Nick. He loves it there, Nick has chickens, bunnies, sheep, cats & PlayStation! Tonight he is off to a sleepover at Grandma Mary's with his cousin Seth, they packed the Rescue Heroes and are ready to play. Tomorrow the Hagert side of the family will celebrate his birthday along with the May/June birthday's. I don't think he could ask for more fun packed into one weekend.

We head to the cities Sunday afternoon and our flight leaves early Monday morning. We've been very fortunate to have coordinated a flight through the Corporate Angel Network. They work with companies that have private planes and if they have extra seat on their flights they are open to patients with medical needs. (Not sure if it's only cancer patients or not.) So we'll be flying with the upper management and CEO of Josten's. They have been so gracious so we're anticipating a great flight.

We'll have our first stay with the Ronald McDonald house. We've heard it's a fabulous place to stay and so much support from other families going through similar trials. Spencer is very excited - hope he's just as thrilled when he realizes he doesn't get to eat Chicken Nuggets for every meal!

I was reading from a book I recently received from my sister Sue, something really struck me. It was talking about the trials that come our way in life. The trials aren't necessarily to make us better or stronger people. They are to empty us out so that God can fill us up with more of Himself.

A special Mother's Day wish to all of you! What a blessing children are!

God Bless, Amy

Tuesday, May 08, 2001 at 08:22 PM (CDT)

The response from all of you as been amazing! We sure are blessed with many great friends, family members and coworkers!

Spencer had his pre-op physical today! He passed with flying colors as usual. We think Dr. Tim Malling will be able to fill out the form with his eyes closed soon! He's a great family prac. dr. and he does so well with Spencer. (Teirrah & Easton too!)

In response to many of the emails today:

The Spaghetti Supper Benefit will be held on Wednesday, May 23 from 4:30pm-7:30/8:00pm at St. Louis Catholic Church here in Paynesville. No tickets needed. Arrive anytime.

Our address here in Paynesville is:
526 Lake Ave
Paynesville MN 56362
320-243-4044

Thanks so much for words of encouragement in the guestbook! It really means alot to us!

God Bless You All!

Monday, May 07, 2001 at 05:11 PM (CDT)

We hope this will be helpful to many of you! We're receiving so much love, support and prayers from so many and we hope this is one way to give back and to keep you informed of what's going on with Spencer.

Here's some history of our journey so far with Spencer. Spencer had preschool screening prior to Christmas and the nurse found that he had some vision troubles with his right eye. We took Spencer to an Optomotrist to have his eyes tested in January 2001. His left eye has vision of about 20/30 or 20/40. His right eye has an estimated vision of 20/2400. The plan was to get him glasses and begin some patching therapy. Mom didn't sleep too well after this and decided to check into it some more. Spencer saw an opthamologist a few days later and she was concerned about the mass in his right eye. Inside of his eyeball he has a tumor. The tumor has grown on top of a birth defect that runs along the bottom of his eye. They figure he has had this since birth. His left eye has taken over for his right and so he functions perfectly. So off to a VitreoRetinal Specialist who did an ultrasound then recommended a CT Scan, MRI and an exam under anesthesia at Phillips Eye Institute in Minneapolis. A few tears, miles and sleepless nights later we had the appointment at Phillips (Feb. 16). We had 3 top of the line doctors in on his exam that morning. They all 3 agreed that his tumor appeared to be a Retinal Blastoma (malignant eye tumor) and their recommendation was removal of the eye. Dr. Olson from to University of Minnesota said he would make some calls to other dr.'s in the U.S. to gather other opinions. Spencer's birth defect and tumor are very atypical so it makes diagnosis difficult. 2 days later mom, dad and Spencer were on a plane to Philadelphia to see Dr. Jerry Shields. (eye tumor specialist) He decided that he would like to have us monitor the tumor for 3 months here in Minnesota to see what the tumor does and then return to Philadelphia in May. Spencer has had 3 exams under anesthesia at the U of M since Feb. The tumor is showing signs of growth. We will be returning to Philadelphia on Monday, May 14 and he has his exam on Wednesday, May 16. We won't know until that time what our next course of action will be. They've talked about a radiation plaque, fine needle biopsy, chemotherapy, and worst case scenario would be removing the eye.

We have been receiving so much support it's truly overwhelming and humbling. So many prayers from so many people who don't even know Spencer! Thank You! Mark's Air Force Reserve Unit held a potluck/silent auction benefit! Thank You! Mark's Aunt Brenda Reep coordinated a candle sale/fundraiser. Thank You! And so many cards, hugs, meals, words of encouragement, gifts and prayers! Thank You! They're coordinating a spaghetti supper/silent auction for May 23rd here in Paynesville. We've been here only 8 months and the community has been so wonderful!

Spencer has been such a brave boy through all of this. Spencer will turn 5 on June 4th. He is such a trooper and he makes us so proud at each an every appointment! God has truly blessed him with an amazing amount of strength! He doesn't like getting the eye drops or the "pokes." But besides that he's a perfect patient. He also knows that the bag of presents is usually waiting for him once he's done. (He deserves it!)

We'll be in touch once we've been in Philadelphia. Thanks for the continued prayers!

We'll be reading Spencer the journal entries. He'd love a little message from you!

God Bless!!

Monday, May 07, 2001 at 05:00 PM (CDT)

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