Paulsen Family Update 11/29/13:: So Many Things to be Thankful for This Thanksgiving

Hello Family and Friends:

We have so many things to be thankful for this Thanksgiving and on the top of our list is all of our Loved Ones: Family and Friends alike.  These have been some trying times at the Paulsen house and it would have been a lot more difficult to get through without all of the kindness and generosity we have received.  Our first thanks goes out to you all.  Our deepest gratitude and love to you and yours.  Best wishes in the future and through this Holiday Season.

I apologize for the delay in sending out this update.  Frankly, the energy to put into words what has been happening hasn’t really been there for me and there has been a lot that has happened since the summer.

I will start off by letting you know that his eye amputation recovery has gone very well.  This includes the site where the skin graft was taken on his leg as well as the site in his eye.  Within three days of being home he was up and walking around.  I have no idea how Bode was able to do this.  To put the leg graft in to perspective: imagine the entire outside of your upper leg down to a few inches above your knee having major road rash.  That is what he had.  The doctors tell us it is 100% healed and as long as he keeps it out of the sun, there should only be a slight difference in color relative to the surrounding skin.  

The eye graft that was placed inside the eye socket has taken longer to heal.  Each dose of chemotherapy causes the skin to regress in the healing process.  Dr. Korn, our eye specialist who did the surgery, thinks this is very normal.  He is happy with how well the skin graft covered the eye area.  We are going to wait until Bode is completely done with chemotherapy and the eye can heal completely before we begin fitting him with a prosthetic.  Additionally, Bode still has feeling in the back of the eye where the optical nerve is located.  This gives us hope that if a robotic eye were to be developed he might be able to have some use of the eye.  Todd has recently submitted a grant proposal to start working with Dr. Korn on exactly this kind of device.  We are all extremely hopeful that the funding will be given so the research can begin, but realistic in understanding the long and arduous process this will be before a real solution will be reached.  The possibility is extremely exciting nevertheless.

Bode is feeling mostly confident about the eye.  He occasionally makes a comment about missing his eye, but for the most part doesn’t seem to think much about it.  We have had to make some adjustments for his right side peripheral vision like moving the water from the right side to the left as we have had several glasses knocked over at mealtime (sorry Miss Manners), and sword fighting has specific rules related to the right-side.  He does love to try and shock people by suddenly lifting up his eye patch to garner a reaction so consider yourself forewarned!  He is happy to show people his eye socket when asked and will freely talk about what has happened to him.  All of this is good and helping him to normalize the experience.


The first week of October Bode stayed overnight in the hospital for 5 nights.  His red blood cell counts were falling into the low range.  This had never happened to him before and I did not know what to expect.  The doctors were watching his levels and they had not fallen to lowest level allowable, but they were darn close.  He started his chemotherapy treatment anyway.  As we got to the third day, Bode was extremely lethargic, pale, and non-responsive.  We decided to do a blood transfusion.  This was extremely uncertain territory.  The idea of having someone else’s blood in my child’s body was foreign and frightening.  I could see that something needed to be done, but this was really scary.  We gave the OK.  

Thankfully, Bode was able to receive the blood like an IV through his porta catheter.  Right away I saw an improvement.  The results were astonishing.  As I continued to talk to the nurse practitioner about the blood I felt more and more reassured.  The blood donated to the children’s hospital came from fire fighters and NAVY SEALs.  Hero blood for my hero.  Perfect.  Bode was feeling a little sketched out by the blood and I was trying to figure out other ways to reassure him (and myself) that is was OK.  Next I realized that the blood, which is kind of a dark purple color, looks like black elixir from the video game we play as a family called Clash of Clans.  I reminded him of the black elixir from the game and how it powers secret troops who are uber-powerful.  That convinced him and he did not ask about it  after that.  Again, perfect.  As each minute of the transfusion passed, Bode came back little by little.  The first thing that really showed me he was feeling better was when he asked for steak.  We got a little steak delivered from Outback Steakhouse and the thing was gone in minutes.  Then he wanted more.  Every day since then he has been on a red meat bender as long as he is feeling well enough to eat.  

I will not hesitate the next time he comes even close to needing blood.  The result was almost immediate and there really was not any reason to wait.  There are so many safe guards in place to make sure the blood is clean and from a good source that I feel very comfortable making that choice, but boy was the first time tough.

At the end of October Bode had several scans and tests completed.  They included a MRI, full body bone scan, CT scan of the body, ultra-sound of the heart, and many blood tests, and a urine test.  It was quite extensive.  Thankfully, everything came back either clear or within normal ranges.  This is extremely heartening news.  If there was any evidence of disease at this time Bode’s situation would be dire.  Additionally, the tissue sample we sent to the lab in Oregon that is doing research on Rhabdomyosarcoma was not able to get the sample to grow.  This is also good news because it shows that new cancer cells were not able to be grown from the tissue that was in the eye area.  We have removed all of that tissue with the amputation, but this is an added level of reassurance at this time.  The same lab has just received a grant to conduct research on finding an antigen for rhabdomyosarcoma.  Part of the need is living tissue with cancer cells.  We are going to assist in creating a tissue bank to support this important work.  This link gives more details about the project:

We are also very thankful to have Bode home for Thanksgiving.  He underwent chemotherapy for five days last week in the clinic and then one day this past Monday.  After Bode finished chemo, we decided to take the family up to Disneyland for Tuesday and Wednesday.  All of the boys (including the Dad-boy) LOVE the Land of the Mouse.  Samuel has been to Disneyland before, but doesn’t have any lasting memories of those visits.  Boy was there a change.  He is creeping up on his 3rd birthday and is extremely interactive.  Couldn’t wait to get up to see his friends Mickey and Minnie.  Here is a link to a little video he made before we went:

We are big travelers and our trip to Disneyland was one of our first big adventures while Bode was on treatment.  We weren’t sure if we would be able to make it to Anaheim.  Bode has been having a lot of carsickness related to only having one eye as well as the chemotherapy making his stomach extremely sensitive.  The current medicine that helps with the nausea is called Zofran.  Before we left he took some Zofran and was able to make the drive.  Another effect of Bode’s treatment is impulsivity.  Whatever he is feeling it is extreme.  He was so happy we were going, but the car ride seemed unending (only an hour and half for us).  Once we made it, food was at the top of the list.  We had some great pizza in Downtown Disney immediately.  Then we headed into the park.  The boys got a quick burst of snow on Main Street and Bode and Samuel were ready to go to sleep.  This may not seem like much was accomplished, but for us this was huge!  I took them back to the hotel and they both crashed.  Kellen and his dad were able to enjoy some one on one time late into the night. They scouted out a great spot for fireworks over by Autopia and took in a bunch of rides.  Surprisingly, the park wasn’t very crowded.  

On Wednesday, we headed in again and were able to get on Autopia.  After that a quick trip to Tom Sawyer’s Island gave the boys some exploration time (Boy those caves are TINY).  Samuel could have stayed out there all day.  Around 2:30, Bode was starting to slide into the irrational zone and his feet were hurting (a side-effect of the chemotherapy Vincritine called neuropathy), so we headed back to the hotel while Kellen and Todd continued to explore the park.  In an unprecedented move, Bode took a nap without any shenanigans.  Mom got one in as well (another item of thanks for sure).  After a good rest we headed back into the park and procured the ever popular corn dogs and watched the special holiday lighting of Sleeping Beauty’s Castle (more snow!).  It was now time to visit Mickey in his house (only 5 minute wait if you can believe it).  Samuel was taken out of the stroller as his eyes started to fall to half-mast.  We were on a mission and that mission was to see Mickey Mouse!  After seeing an unexpected lighting of Small World (definitely stepped up their game), we made it into Toon-Town. Straight into Mickey’s house and Samuel was on Cloud 9.  He loved everything and could have spent hours playing with all of the gadgets.  Finally, made it to the special room with Mickey, and Samuel was able to give his friend a big hug and high-5.  Lots of kisses were blown as we headed out the door.  The older boys enjoyed Star Tours, Autopia at night, and the Believe fireworks show.  Good memories were made for everyone and that is the name of the game!

We have completed 6 months of Bode’s treatment.  We have 6 more to go.  This is sort of like when I drive to Montana.  I cover up the odometer until I get to Utah, otherwise I am overwhelmed by the 1200 mile trip.  Two months ago it seemed like we still had forever to go, but now I can see the light at the end of the tunnel and it is April 2014.  Overall, Bode is handling the treatment really well.  His spirits are high and he has faced some of his biggest fears related to the treatment.  The first major accomplishment was the blood draw from his arm.  It seems he decided he was going to be OK with it.  Even during the time that his blood counts were low and the nurse was having a very difficult time finding a vein, Bode calmly asked how much longer it was going to take.  No screaming.  No need to be restrained.  He simply helped himself by staying calm.  This was a huge first step for him.  

Another area where he has made significant improvement is with the removal of the port access.  This is the needle that is inserted into another medical device that was surgically implanted under his skin.  Think of the Iron Man port except off to the side.  Every time he needs to have chemotherapy that device has to be “accessed” or have a needle with a surgical tube attached to it inserted into him.  He. Hates. This.  We go back and forth with some times he is reasonable and other times completely out of his rational brain.  He is working very hard to take control of this with his Talking Doctor’s as well as with me and his nurses.  The part he is doing well with is the removal of the needle.  This part used to be as bad as the access, but the last time we were inpatient for six days he decided he liked being at home better than being in the hospital.  He showed his dad how to take off the protective sticker and said, “Let’s get out of here!”   The nurse took out the needle and we were done.  The power of his mind is absolutely amazing.

Looking ahead at the next six months we have some real challenges as far as treatments.  During the months of December and January there are four more weeks containing hospital overnight stays of either a one night stay or a five night stay.  One of these takes us to Christmas Eve.  We are moving the treatment up by one day so we are home on Christmas Eve and not on Christmas Day.  This is one of the treatments that makes Bode really sick for a few days.  Hopefully, being home for Christmas will help to take his mind off of the sickness.  In February and March we have one week in each month of treatment in the clinic for five days straight.  During these periods we do get to come home at night.

In February we also will have another MRI.  For every test the outcome we want is “No Evidence of Disease”.  As long as we stay on schedule, treatment will be over in April.  After the final scans and tests we can schedule to have Bode’s port taken out.

I realize this is a lot.  It is.  I wanted to try and get as much information out as I could.  For those of you who have asked how can you help, there are several ways that are all much appreciated.  First, I am going to list the link below for the Meal Train site.  All of the meals that have been given have been so wonderful and very much appreciated.  Second, the link to donate money to BodeStash is listed below.  For everyone who has donated to the Bode Stash, we are deeply touched and grateful.  This is how we have been able to do special things with Bode and the boys like go to Disneyland and keep him occupied with videos!  Third, Bode is going to take part in the Make A Wish/Macy’s Believe letter for the holidays campaign.  If you or anyone you know would like to write a letter or send an email to, Macy’s will donate $1 to Make A Wish.  The letter can be a Dear Santa letter or what you wish for the holidays.  Last year Bode and Kellen collected over 6500 letters and their submission was matched.  To mail the letters please send to: 

Bode Paulsen/MAW
4203 Genesee Ave.
Suite 103 Box 296
San Diego, CA

Lastly, please stay in touch.  We love to hear from you.  Cancer treatment is like going into a cave.  We really appreciate any ray of light.

Sending love, good memories, and best wishes to you and yours for the Holiday Season and the future,




Bode Paulsen Update 8/11/13

Hello everyone,
We are getting Bode ready to go home today (Sunday).  This morning he had his eye dressing changed.  Anything to do with adhesive is a challenge because he hates having his skin pulled.  With four adults we were able to get the old dressing off and put on a new one without any adverse consequences.  There has been a continuous draining from the eye into the dressing and it needed to be changed out.  This is good news.  We want the eye area to keep doing this so fluid does not build up behind the skin graft and cause it to separate.  Bode had a relatively good night’s sleep last night without additional fear from ghost images in his eye.  He will have check up appointments with the eye doctor as well as the skin graft doctor this week.  The dressing on his eye will probably be changed weekly as will the skin graft site dressing.
Below is Bode starting to get ready to go home.

Attached is an image of the cells from Bode’s eye being grown in solution at a lab in Portland, OR.  It is exciting to see that the cells made it to the lab alive.  Now we will wait to see if the cells will grow.  At this stage it is difficult to determine the cancer cells from the normal eye cells.  In the next week we expect to see if cancer cells will grow.

Thank you to everyone for all of the support and positive thoughts.


Bode Paulsen Update 8/10/13

Bode is doing well today. Finally got the nausea and vomiting under control about 9 pm. He has been complaining of seeing flashing lights in his amputated eye as well as a lot of coldness. These are scary things we were not able to prepare for, but all seem appropriate based on his surgery. He had a hard time going to sleep because his brain was telling him to close his eye lid and was not recording that there is no eye lid to close. All of these things are a brave new world for us and we are meeting the challenges as they come.

Todd has been investigating finding a lab completing rhabdo sarcoma research who would be willing to take a sample and attempt to grow it. Last week he found a place in Portland where he sent a piece of tissue to grow. The researcher received the tissue and reported that there does seem to be some viable cells to regroup the tumor. This is important for two reasons. One: we are validated that we made the right decision to have the eye removed. Two: the lab may be able to grow the cells and test what drugs can kill it.

Our goals for the day are pain and fear management.

Thank you to everyone for all the well wishes.

Bode’s Update 8/8/13

Hello everyone-

Wanted to send a quick check in to let you know that Bode is going in tomorrow morning for surgery at 7:30 am to remove his eye.  We are looking for complete cancer cell removal.  He is probably going to be at Rady Children’s Hospital until Sunday.  We will come home when he is ready.  If all goes well we will continue chemotherapy at the end of the following week.  I will be updating Facebook which is more convenient for me.  If you would like to add me please search for me under Abigail Paulsen.

Will get back with you soon.



Bode’s Update 7/18/13

Hello friends and family,

It has been two months since we have heard about Bode relapsing.  First and foremost, thank you to everyone for all of the amazing, thoughtful, and touching ways in which you have been supporting us.  There are not enough ways to say “Thank you!” for the meals, gifts and donations to Bode’s Stash.   I know for sure my kids are very happy when they don’t have to have one more box of macaroni and cheese for dinner.

Here is where we currently stand:

Bode is finishing week 9 of his treatment.  This week is a rest week.  Even though his blood counts are very low, he has gone to the awesome Camp Reach for the Sky provided by the American Cancer Society.  He has dressed up everyday this week and is really looking forward to tomorrow’s theme of “Monsters and Zombie’s” and the big pancake breakfast on Saturday.  It was extremely important to us and his oncologist that Bode be able to go to camp.  All of the counselors are great and the kids have fun all day long.

Here he is as a Wizard


The boys, Todd’s mom Bobbi, and I returned Wednesday July 10 from a trip to Philadelphia to visit Drs. Jerry and Carol Shields.  The husband and wife team are renowned for their techniques of treating cancers of the eye out of the Wills Eye Institute.  The tumor panel reviewing Bode’s case here in San Diego had hoped that treating his recurrence with radioactive plaques would be the best option for local control at the tumor site.  After visiting with the Shields’ their opinion was that Bode was not a good candidate for their procedure due to his tumor being located so far back in the eye socket.  Dr. Jerry Shields, who we spoke to for the most part, was concerned that in the process of implanting the plaques a large amount of damage would be done to the other structures of Bode’s eye.  Additionally, he did not believe that the muscle would be an appropriate attachment site for the plaques because of it’s constant motion.  This would cause the radiation to go into other areas we did not want.  Bode had received a large dose of gamma knife radiation during his previous bout with this cancer.  Any additional radiation would cause side-effects that could be as difficult to deal with as what we are facing currently (I.e. More cancers and irreparable damage to the eye structures making it non-functional).  The Shields’ recommended that we go and see a local pediatric oncologist named Richard Womer at the Children’s Hospital of Pennsylvania (CHOP).  An appointment was set with him on Wednesday July 10 in the morning.

Dr. Womer had gone over Bode’s history completely before we met with him.  Bode and I were welcomed into his clinic as if it was our home clinic.  Bode took a shine to him right away (which he rarely does with medical personnel). After a thorough exam he had Bode wait outside so he could have a very frank discussion with us.  Todd was on the phone in order to hear the doctor’s analysis by remote.  He told us that Bode’s cancer is extremely difficult to get rid of.  As a result of it returning so quickly after the intense radiation and chemotherapy he had already undergone, it was his assessment that the cancer was radiation resistant, and to some degree chemo resistant as well.  Research into the processes by which Rhabdomyosarcoma duplicates itself is showing that the primary level of the cancer cells behave in a fairly orderly manner.  The secondary cellular level shows something entirely different.  According to Dr. Womer, the cells are mutating at an alarming rate.  This leads to the cells producing new cells that can be radiation resistant and chemo resistant.  In his opinion, continuing with radiation at this point would lead to very damaging outcomes to Bode and his eye as well as not getting rid of the cancer.  He recommended exenterating the orbit as an alternative local control.  This is a complete removal of the eye.  In conjunction with the removal of the eye he also suggested compressing the chemotherapy regiment so the treatments come more frequently.  Currently we have one to two weeks recovery in between treatments.  This will likely go down to at most one week after he has the really strong chemotherapies.  In order to maintain his blood cells he will be given a growth hormone that helps the bone marrow produce different types of blood cells necessary for his immune system.  Dr. Womer’s final assessment was that the predicted survival rate even after the exenteration is between 40-50%.  Essentially, if one cancer cell survives the cancer will come back.

Upon returning to San Diego I met with our oncologist Dr. Andersen in person and our ocular plastic surgeon, Dr. Korn, on the phone.  Both doctors agree that since the brachytherapy (radiation plaque therapy) is no longer an option the only way to go is the removal of the eye.  In speaking with Dr. Korn we discussed the severity necessary to assure the best possible outcome.  In his opinion, because the original biopsy went through the top of the eye lid there is additional risk that the tumor will grow back at the incision site so the site needs to be removed.  Dr. Womer concurs.  

What does this all mean.  My understanding in layman’s terms is that the chemotherapy suppresses the growth of the cancer cells long enough so surgery can be done to remove any cells that may cause growth.  As the area heals, the chemotherapy blasts the area to keep any additional cells from growing back.  In the next few weeks Bode will undergo another surgery to remove the eye.  The physical recovery is estimated around 6 weeks.  This could be slowed due to the effects of the chemotherapy on newly growing tissue.  At some time in the future he will be fitted with some type of prosthetic eye.  The type of prosthetic has not been determined at this time.  

He will continue his chemotherapy with an increase of frequency of the treatments.  Beginning July 23 he will be inpatient for five nights of two new chemotherapies.  In the past weeks he has undergone multiple therapies.  For the most part he is very sick from them, but after he is sick he slides back into being Bode.  The chemotherapy has started to effect his moods and behavior.  He is on an emotional roller coaster, going from extremely happy to absolute defiance.  We work through all of it as best we can.

Our main focus is to create happy memories.  Kellen enjoyed a week of camp in Julian and required two days of sleep to recover.  At the end of June we had a complete plumbing failure at the house.  As a result, we had to find a new place to live for a week and a half.  As the jackhammers started to drill the last piece of my sanity, I found a fabulous house ten steps away from Mission Bay.  We all got to stay and the rest and relaxation was appreciated by all.  The kids had a blast, Bode wore his full body swimsuit, hat and bright white sunscreen so he could play in the sand with his cousins and friends (his medicines and chemotherapy make him photoreactive to the sun causing increased risk of sunburn).  We enjoyed all kinds of family and friends visiting throughout the week.  While we were in Philadelphia, Todd was able to drive over from Washington DC and spend a few days with us.  Philly was brutally hot and humid, but we had a great time together. A day trip to Washington was enjoyed by everyone.

I realize how difficult this news is to hear.  I never realized how many times a heart could be broken.  One thing I am trying to keep in mind through this I will pass along to you.  Even though this news seems horrible it is still just news.  There could always be worse news and hopefully there will be better to come.  At this point, it is just news.

If there is someone I have missed in sending this, please forward to them as well.

Sending my love to you all and wishing everyone good health.


5/23/13 Bode Update

Dear Ones,

I send you this information with a heavy heart.  

Monday, May 20 we received confirmation that Bode has had a relapse.  For those of you who may not know, in 2011 Bode fought cancer in his right eye for six months.  The type of cancer is called Rhabdomyosarcoma.  This is a rare solid tumor cancer.  On a recent maintenance MRI done on Friday, May 10 (6 months from the previous MRI) a mass the approximate size of a tic tac was discovered at the original site.  Bode underwent a biopsy on Thursday, May 16 to remove the tumor.  Bode’s opthamologist, Dr. Bobby Korn of UCSD’s Shiley Eye Center, completed the surgery.  Dr. Korn informed us that he felt confident that he took out a majority of the tumor as well as a vessel from the muscle that was feeding the tumor.  He was unable, due to the small area, to get a clear margin (meaning he was not able to take out up to a non-tumor area).  Additionally, on this day, Bode underwent a full body bone scan, a C-T (computed tomography) scan, and an additional MRI.  All of these tests came back with no sign of spread of disease.  Monday, May 20 we received word from our oncologist, Dr. Eric Andersen of Rady Children’s Hospital, that the pathology on the tumor was in fact diseased and it was, again, rhabdomyosarcoma.  The decision was immediately made to get Bode on treatment.  On Tuesday, May 21 Bode went to his class and said good bye as he would not be returning for the remainder of this school year.  Later that day he underwent an additional surgery to replace his central line (also known as a porta-catheter) as well as a bone marrow biopsy to check for bone marrow disease.  The central line allows Bode to receive chemotherapy directly into his system without having to start an IV each time.  Note: Bode HATES his port.  He came out of the anesthesia last night very well.  His first scratchy words were “Vanilla” meaning vanilla ice cream.  He quickly downed a vanilla ice cream immediately followed by a chocolate one as well as some gatorade.  After he woke of from his surgery he was moved to the inpatient unit of Rady Children’s Hospital in order to begin his treatment of chemotherapy the next day.  Today, May 22 Bode was recovering well with some discomfort in his port area as well as his left arm and lower back where the bone marrow was taken.  He did manage to complete two lego figures with the help of his cousins, eat a waffle, half a plate of mac and cheese, and some chicken tenders.  Later on Wednesday, he received his first dose of chemotherapy with two chemicals.  His treatment protocol will include a total of five chemicals with only one being a duplicate of what he had during his first round of treatment in 2011.  He struggled later in the evening with discomfort, but was able to rest comfortable as of 9:00 pm.

A Tumor Panel met earlier today to discuss the best course of action to treat Bode’s situation.  The current agreement is that Bode will receive 50 weeks of chemotherapy bringing us just shy of May of 2014.  During this time he will receive different combinations of the following chemicals: Vincristine (we saw this in 2011), Irinotecan, Cyclophosfimide, Doxorubicin, Ifosmifamide, and Etopofide.  Many of the these treatments will involve mulit-day inpatient stays at the hospital.  Additionally, a second attempt to kill the tumor at it’s growth site (which appears to be from the muscle in the eye that controls the top/bottom motion) will happen possibly 16 weeks or so from now.  In round one, Bode received six weeks of radiation therapy. Because the radiation field from the first treatment included the location of the new tumor we cannot have the same type of radiation completed again.  This is due to the destructive effects that would come from using too much radiation in one area.  The Tumor Panel came up with an alternative idea.  An additional surgery will be completed where a bead-type item that is radioactive will be placed within the eye, directly at the tumor site.  It sounds like the radiation will travel in only one direction toward the site as the other directions will be shielded.  After a few days the radioactive item will be removed.

As can be imagined, we are all taking this very hard.  Bode has a complete understanding of what this all means.  He is dealing as well with the situation as can be expected.  He has been talking to friends and family openly about what is happening, but is also able to enjoy most of his time by playing board games with his brother Kellen, making LEGO sets, and playing games and watching movies on his iPad.  We are keeping him as comfortable as possible as he goes through his surgeries and his chemotherapy.  In order to best support and keep Bode as healthy as he can be through this, we will not be able to participate in much.  We would still like to know how everyone is doing and connect in anyway possible (through email, snail mail, video chat, and phone).

Please do not hesitate to contact me with any questions you may have.  I know how overwhelming this all is and I am still processing myself.  At this point we are taking things one day at a time and moving forward.

If this is too much and you wish not to be contacted please let me know.  I completely understand.  If you think there is someone I have missed in sending this who would want to know what is happening, please feel free to send to them as well.

Wishing you health,