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Kickin' Cancer for Adrian
$3,822 raised
38% of $10k goal
44 contributors
0 days left
Ended Dec 27, 2014

Adrian is 12 years old, diagnosed with Wilms' Tumor in 2011, Chemo and removal of his right kidney, but then he soon relapsed with Wilm's Tumor in his lungs. Adrian has recieved Chemo and radiation to shrink the these tumors. Adrian continues on new plans of chemo but the scans show he still has live Wilms' cells present.

Here's My Story

• October 15, 2011

John and Adrian went to the cabin on Saturday night (10/15/11) to go fishing on Sunday morning and close the cabin. Adrian complained of pain in his side which got worse on the car ride home.  At 7 PM they stopped for food in Garrison and Adrian went to the bathroom and found blood in his urine.

John stopped in Onamia to check him into urgent care. They took samples and he had an x-ray and a CT scan.  They sent the scan pictures to Abbott Northwestern doctors to read.  The call came back and John was told they suspected Adrian had cancer.

Adrian was transported to Children's Hospital in Mpls by ambulance and was checked in at 12:30 AM Monday morning.  Many more tests and images were performed that morning and after many doctors examined the results, it was determined it was likely Adrian had a Wilms' tumor on his right kidney.  The chemo will last 25 weeks. And he will recieve radiation.

After months of chemo and red chemo, nausea, weight loss, pain, missing school and getting AFO's and PT he stayed strong and determined.

April 16th he finished his 25 weeks of chemo, Yea Adrian! We went to the Twins game to celebrate.

• July 30, 2012                                                                                        Three months post treatment all clear for NED(no evidence of disease).

• November 3, 2012

Adrian went in for his 6 month post treatment scans on Thursday.  His 3 month scans were all clear and we expected the same results.

The images of his middle were clean, but the CT scan showed something in his lungs.  We were able to get scheduled for a 6 AM check-in the next morning for a biopsy and possible portacath placement.  The initial biopsy indicated the same cancer was now in his lungs.  Adrian's port was then implanted and Stephanie and I met him outside of recovery and followed him in his bed to his room.

 As some can relate, we were surprised, frightened and crushed by this.  It was emphasized that the doctors and caregivers at Children's Hospital have seen this before and it is curable.  We take hope in this and the fact that Adrian has fought this before and will successfully do so again with our support. He will start intensive chemotherapy Monday or Tuesday. He will undergo 2 to 4 cycles of a treatment called ICE-T based on the first letters of the drugs. He will be admitted to Children's Hospital for 3 to 5 days mainly to control expected nausea while the ICE portion is given over 3 days. Many people have asked about the chance of success for beating this 2nd occurrence of Wilms' Tumor.  With the latest treatment available, the cure rate is 60%.  We do not focus on this percentage, but instead on Adrian's ability to fight this with the support we all give him.

•Jan 2, 2013

Adrian went in for blood tests yesterday (Wednesday) and also had an x-ray.  The x-ray showed substantial shrinkage of the tumors in his lungs.  We were very happy to see this.  He saw his doctor today and she was happy with these results as well.  She says it will not alter our plan of three more cycles of chemotherapy however.

• Jan 26, 2013  

Wow, what a long week at U of M Journey clinic.  Monday was just a walk through of how our week was going to go. It went well considering we had to be there at 8AM (and the other 2 children did not have school & I could have slept in). 

Tuesday was a hard day.  Adrian got his central line placed at 12:30PM.  It was hard for him to not eat his breakfast and he was so hungry.  We had to be to the U's pediatric sedation and radiology by 10:30AM for him to get a transfusion of platelets before his surgery.  There were no complications.  The line was placed and he got to have some really nummy chicken nuggets from the cafeteria.  The sedation unit also has a slushy machine with blue or red or mixed.  They even let me have one. :-)

• Feburary 2013

 We had Adrian's scans on Feb 19th & 20th then results on the 21st.  Adrian was a trooper with all the scans.  His 1st scan was the GFR (how is his kidney functioning) It seems to be doing good.  All the numbers are where they should be.  This is just a long test because you have to sit and wait for blood draws during a 2 hour period.  He also had his hearing tested this day and that was normal with no change.  I asked about his selective hearing and if they could fix that, LOL they said no.

The next day was his CT and MRI scans.  CT went fine but he was kinda fidgety with the MRI, but they got the pictures that they needed.  Dr. Kris Ann called that night to let us know that the scans looked good and she was pleased.  Thank goodness.  I slept better knowing that there was good news.

Wow do they look lots better.  There are still some spots in the lungs but they have shrunk.  We are going ahead with round 3 of ICE-T then will do scans again and decide if we can drop the ICE (which affects his kidney) in round 4 and just use topotecan.  There was some talk of surgery, Proton radiation and more talk about high dose chemo with stem cell transplant.  But we are really taking it step by step and dealing with what is just right in front of us at this time. 

• Mar 21, 2013

Well, where to start.  Adrian went into the hospital for a fever this last weekend.  They did a chest x-ray and when they compared it to the one taken in January it looked like the tumor was growing.  We did a CT scan on Tuesday and it was confirmed.  This is a major setback.  The tumor should not be growing while on chemo treatment.  We are moving on to radiation this Monday.  Hopefully this will shrink the tumors enough so that we can do surgery.  After that there are clinical trials that we can try. We are devastated and feel really helpless.  We have done everything we know to do and see promising results only to get kicked in the gut. 

•March 25th 2013

 We had a clinic visit with an echocardiogram and ekg.  He started whole lung radiation (turns out we will only be able to get 3 weeks in instead of the 5 like they would like.  He did really well with the radiation and is now getting a visit with a friend on spring break. 

•April 4, 2013

Adrian's doctor has gotten opinions from 2 other doctors and they all agree to try Temodar (pill chemo taken at night) with radiation.  We got the results of Adrian's PET scan on Friday, April 5th.  It showed apparent shrinkage of tumors in his lungs.  An MRI showed no signs of cancer in his head (the next place Wilm's shows up).

•Monday April 15, 2013

It  was Adrian's last day of radiation.  That is a relief.  3 weeks and 1 day.  It is nice to be back just at Children's Hospital and Clinics.  You can definitely tell the difference between a hospital that caters to kids and one that deals mostly with adults.  Adrian had an x-ray and it looks like the radiation has shrunk the tumors.  The surgeon still said that surgery is not possible at this time. We will revisit after we have a CT scan in 3-4 weeks. 

What's next?  Adrian will be starting a new (off-study clinical trial) chemo treatment this coming Monday.  He will get an IV chemo Irinotecan and a pill form called Sorafenib.  There is no protocol for these drugs.  We do not know how long he will be using them.  I think it is a 5/21 day interval of when he gets them.  We hope these will get the tumors to a point where he can either have surgery or the tumors are no longer visible on the scans.

•May 19, 2013

Adrian had a CT scan and an x-ray last week along with the start of his second round of IV chemo.  We met with his oncologist to discuss the scan and possible treatments that may be available to us in the near future.  The scan showed clear shrinkage of the tumors, so the radiation was effective.  We will use this scan and the x-ray as a baseline to guage the effectiveness of his current chemotherapy.  Hopefully we will see results as he is doing well on this regimen and future available treatments are increasingly experimental.

• Jun 3, 2013

 Then news that his platelets were too low to get his Irinotecan (chemo) so that moves us out to Wed. so we will have to go into hospital over the weekend to get the chemo over 5 days or start next Monday and then give it orally for Thursday and  Friday when we are in Alaska for our make a wish.  The surgeon went over the scans with Drs and said the tumors are now too small to get. (which is good, but first too big and close to heart, then too small)  I don't get it.  I just don't get it.  His tumors grew on ICE-T (not good) They feel it most likely will start to grow again on the new drugs...If you don't take it out and it is going to grow then what?  ARRRRRRRRRRRRRRRRRRRG!!!

• Oct 22, 2013 

    I blinked and it is already Oct 22.  My days and weeks really run into each other (more like smash).  Adrian had a PET scan a few weeks ago and after some confusion....different radiologists seeing different things from one test to the next... all looks good.  He is still stable and we are keeping on the treatment he has been doing, it seems to be working.

•Janurary 27, 2014

Several weeks ago, in the latest PET scan, it appeared a spot on Adrian's lung where tumor had been was growing.  We prepared for a radiation treatment, but the doctors wanted to perform a biopsy first to make sure it was necessary due to the risk involved since he already had radiation to his lungs.  The initial results were inconclusive so many pathologists studied the sample.  Since then the radiologist determined the risk to the lungs ruled out any more radiation treatment.  Adrian had a CT scan today and it looked ok, The official pathology report came in from Pearlman in Chicago, who sent it to her cytoplasm pathologist and it is concurred that the biopsy was live Wilms' cell growth. So Adrian's cancer is not curable...It was growing again on this new treatment....but it was only very small growth.  We are looking at all our options available including phase I trials and compassionate use drug requests. There are several that look promising to stabilize this growth again. His oncologist is making calls to a bunch of doctors around the US and asking them their opinions about what to do. We will meet with her again next week to make a plan.

•Feburary 6, 2014

Adrian is scheduled to see Dr Pete Anderson in North Carolina on Tuesday, February 18th.  He will get scans to give the most up to date information and if there is nothing unexpected, he will have surgery to remove as much of the tumor in/around his lung as possible.  Then, they will place a mesh with radioactive material in the area.  Radiation has been very effective on the lung tumors and this is a way to apply it without adding too much risk to his lungs which have already received the maximum allowed dosage.  However, the tumor seems to extend along the diaphragm and there is concern that the radiation will affect his one remaining kidney if applied too low.  This option attacks the only (small) detected cancerous tissue rather than chemo or stem cell transplants (which involve high dose chemo) which will affect the whole body.  It also leaves these options available for later if necessary.

•Feburary 18, 2014

 We checked into the Ronald McDonald House Charlotte (RMHC) after midnight on Tuesday.

Later that afternoon, we walked to clinic to meet Dr Pete Anderson and go over the plan for the week.Adrian had a CT scan on Wednesday morning and we met with his surgeon, radiation oncologist and oncologist today to go over the scan results and upcoming procedures. The CT scan showed a new growth on Adrian's right lung so he now must have a PET scan tomorrow morning to see if it is "hot". If it is (we expect so), the radiation oncologist ensures us he can treat it with radiation without affecting the lung tissue due to its location. This would be an additional set of treatments while he is recovering from the surgery and mesh implant with radioactive "seeds". So, unless the PET scan shows something else unexpected, we can still go forward with our treatment plan

•Feburary 23, 2014 

There is a new spot growing on/in (not really sure) Adrian's right lung.  The radiation oncologist has decided to deal with that spot before surgery so that Adrian can get into position with arms over head.  The arms raised will be very hard for Adrian to do after surgery.  This does not set us too far back on time, maybe 5 days.  John will fly back for the surgery and a day or two after then go back home to work.  Adrian and I are starting to plan our trip back and seeing where we want to make pit stops, LOL  We are for sure going to be stopping in MI to visit my family again, but it also depends on when we need to be back for treatment, and what that treatment is going to be.  I am hoping we can at least take a week, maybe have Adrian see a few sites on the way home.  Who knows it may all be for naught and we will need to drive right home for treatment.  But while we are here we might as well plan some fun (and stay away from the snow for as long as we can).
 We start bright and early Monday at the radiation office to set up his plan of attack for the week.  I think it will be 5 days of radiation in a row then surgery the week after.  I guess we will know more after tomorrows appointment.

•March 5, 2014

We were at Levine Children's Hospital in the surgery waiting room.   Adrian went into the OR at about 7:30 AM.  The plan is to use minimally invasive thoracoscopic surgery to remove as much of the tumor as safely possible and then implant the radioactive mesh using the same technique.  Depending on how much scar tissue they find, how the tumor responds and how the mesh lays out, they will use more invasive methods if necessary

• Mar 5, 2014   

After a long surgery, the surgeon met with Steph and me to let us know all went as well as could be expected. Adrian will soon be in Recovery and then in the Intensive Care Unit. The surgeon told us the tumor was like a balloon attached to the lung at a single point (like a tube) which made it easier to remove. It was however very soft (like wet crepe paper) so there may have been some "spillage" upon removal. Additonally, there were some implants or cancerous areas attached to the lung and diaphragm. These were covered with the mesh, so the hope is they will respond well to the radiation as they will be in the immediate field. There was some difficulty implanting the mesh. It had to be removed and re-rolled to try again. The initial stitches used to try to attach the mesh had to be replaced with some disolvable tacks. This may cause him additional lasting pain, but should not be permanent.

The entire procedure was done with a "scope" so Adrian has three small incisions in his side and a larger one that was made to remove the tumor itself. This means his recovery should be easier than if they needed to make larger incisions. He will have a chest tube as a bit of the lung had to be cut off where the tumor was attached.

March 8, 2014

Recovery - Day 3

By John Merfeld — Mar 8, 2014 9:26am

Adrian is feeling a bit better this morning.  He has transitioned to oral pain medication and we seem to have his pain under control although there is obviously still discomfort.  He is now sitting up and staying awake without too much complaining.  This means Stephanie can now get some rest too.  He is also blowing into a device (and coughing which is good) which promotes taking larger breaths.  He even asked for it without prompting, so his attitude is getting better!

Yesterday, his port was accessed to take over all his IV needs, so he was able to get rid of three IVs in his hands and arm (a fourth was previously removed in ICU).  We expected his chest tube to be removed yesterday, but apparently there was still too much "cloudiness" in his lung on the x-ray so he may need to wait one more day.  We are still waiting for the results from the x-ray this morning.  This means he still has an epidural (and catheter - bladder) which will not come out until the chest tube is removed.  He also has some cuffs on his legs which periodically inflate to prevent blood clots.  These can come off as soon as he can get moving.  All these things were terribly bothersome (to put it mildly) for Adrian so once the chest tube is out he will be much more comfortable without all these things attached.

Adrian already has clinic visits scheduled, but it appears he will not be discharged in time for his first one.  Dr Anderson is however putting together a new treatment plan including chemotherapy.  We do not yet know when or where this will start so we still don't know how much longer Adrian needs to stay in Charlotte.

March 30, 2014

Ready to come home

By John Merfeld — Mar 30, 2014 12:26pm

Adrian had his first chemo treatment on Friday.  Later, he was dealing with some pain and running a fever, so on Saturday he had to go to the hospital for cultures and antibiotics.  There was some concern that if his pain and fever could not be treated without an IV, he would get his second chemotherapy treatment on Friday in Charlotte rather than at home.  The good news is he is feeling better today and while he had to go back to the clinic for more antibiotics today, he should be able to leave for home after a doctor appointment tomorrow.  We really do miss him and Steph and can't wait to see them here at home.

It has been very difficult being separated for what will be almost two months.  We are so thankful for all that have helped us during this time.  Adrian has really enjoyed receiving all the cards, gifts and well wishes while staying at the Ronald McDonald House.  Thank you to all who have been so generous through facebook and International Spanish Language Academy (ISLA).  It takes away so much stress to not have to worry about increased expense and reduced income due to Adrian's treatment out of state and instead be able to concentrate fully on Adrian's well being.  It is unfortunate that we must experience difficulty in life to see so much kindness around us, but we are so grateful to all who have shown so much.

May 8. 2014

By John Merfeld — May 8, 2014 7:27pm

A week ago, Adrian had his first CT scan since his treatment at Levine Children's Hospital in Charlotte, North Carolina.  The scans showed 6 or 7 new growths around his lungs.  Two of these were larger than the rest which were very small.  He has been experiencing some pain near the area of his surgery and we thought it was the screws used to affix the mesh to his diaphragm, but it may be the tumor under his left front last rib.  This is not in the field of radiation from the mesh.  The areas of the two tumors treated in NC are both still clear.

The plan for the treatment in NC was to remove the only tumor detected and treat with the radioactive mesh and then start chemotherapy with a minimal amount of disease.  The second tumor found preparing for this treatment was successfully treated at the time.  The problem is that the chemo agent used did not work as hoped and more tumors grew.

As many know, we have already exhausted the typical chemo treatments for Wilms' tumor.  When meeting with Adrian's oncologist about the CT scan results we discussed treatment options.  The problem is drug trials have a time period during which the patient must refrain from receiving other chemo drugs (usually 21 days) and these tumors grow so fast, we feel we cannot wait or the amount of disease could become too great to treat effectively.  We decided to try cabozantinib, a drug very recently approved for a very rare thyroid cancer (in adults) which targets several receptors found in Wilms'.  We are so grateful that the insurance company approved the treatment within days as there is no way we could afford it without insurance and we can now start treatment without delay.

Based on some clinical trial results, many tests were ordered to get a current baseline so we can closely monitor Adrian's organs and symptoms since little is known about how this drug will affect a young cancer fighter.  One of these was a PET scan this morning.  Not unexpectedly, this scan showed some additional suspected tumors not detected by last weeks CT scan.  We were somewhat relieved it was not much worse than we already knew.

Our hope at this point is to stop, slow or delay the tumor growth in order to buy time for something better to come along.  We of course hold out hope that something we try will actually work better than this and reduce the amount of disease.

Meanwhile, when he is able, Adrian plays little league baseball and walks his dog Luna.  He passed his hunter safety course and also looks forward to some fishing this season.  We are and will be spending much quality family time in the days ahead.  We cannot afford to let this fight take more away from our family.

June 2014

Adrian made it home from NC with some pain in his side from the surgery. We had successful Fundraiser at Air Maxx. Adrian and his family had a great time. He got tired and had to rest a few times. He enjoy seeing his friends.

Adrian had scans that showed growth of his tumors again and put on pain management because he was having pain under his arm. They set up pallative care to come in their home to help Adrian with his pain and other medical things he needs.

Adrian's family (except Dad) went to spend time with Grandparents, Aunties and Uncles and cousins in Michigan. He had a great time with his new little cousin Law Franklin. Received a few bumps and bruises from the dirt bike. Mom had to make him stop because he was freaking her out. He went fishing too.

Adrian came back not feeling so good, they thought a bruise was causing pain to his spleen. After a quick scan, it showed a tumor was pushing on his spleen, and causing a lot of pain. Tuesday July 1st Adrian will have a full scan to see what is going on and hopefuly find a way to shrink the tumors.

July 1, 2014

New Treatment Focus

By John Merfeld — 18 hours ago

Adrian went into clinic last week with some pain in his side.  The doctor felt some swelling near his spleen and he had a CT scan of the area to determine if it was bruised.  (He had a couple of spills on a dirt bike.)   Unfortunately the scan showed more growth of the tumor in the area which was causing the pain.

Adrian had another CT scan of his full torso this morning so we could proceed with the best information possible.  The scan showed growth of all the tumors on his lungs, but more growth on the tumor causing his pain.  We believe some of the growth shown on the scan of the tumor against his spleen is actually blood since the tumor has been bleeding which is common with Wilms' tumor.

What this means is there is little more we can do to effectively treat his cancer without seriously diminishing his quality of life.  Surgery and radiation have been the only effective treatments for Adrian in the past. There are too many tumors to surgically remove and radiation either cannot be used in some areas or will not significantly reduce the size of the largest tumor.  Chemotherapy has not been effective since his relapse.  We have tried everything the best doctors could come up with and more.  It has sometimes slowed the progress of disease, but never stopped or reversed it.  At this point, the chemo options are so similar to what we have tried (and we have tried everything) that they will cause more harm than good.

Today we had to face the realization that we had feared the last few days that there is nothing more we can do to rid Adrian of cancer without seriously harming him or putting him through needless trauma.  The doctors give him only a couple of months to live.  Hence the new treatment focus.  We will be just as determined and dedicated to Adrian's comfort, well being and family life as we were fighting cancer, but the focus now is on loving and living as best we can.

I have given the facts and that is something I do well.  That said, we have fought so hard and so long, never giving up hope, that the events of the last few days have crushed us.  We have been crying for days.  We saw Adrian finally come to the realization of his situation today and that is the worst moment I have ever experienced.  He has been so strong through all this that it does not seem possible that his efforts could fail.  We are overwhelmed with pain, frustration, helplessness, sorrow, exhaustion, guilt, jealousy, questions and more.

Our goal is now to try to postpone all this and be the best Mother, Father, Sibling and Friend now with the time we have with Adrian.  Through this journey, we have found the best friends and support we never knew we had.  Thank you all for this.  We will definitely need you in the coming days.

July 12, 2014


We would like to thank all of you who have given money, thoughts and prayers to help us through this latest stage of Adrian's fight. It was difficult to leave our home and caregivers at Mpls Childrens, but this treatment plan was the one that gave us hope for the most positive ultimate outcome

Thank You,

The Merfeld's

Checks can be made out to:

Kickin' Cancer for Adrian
5017 W. 40th St.
St.Louis Park, MN 55416

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